1 July 2025

(10.01 am)

Lady Hallett: Ms Carey.

Ms Carey: Thank you, my Lady.

My Lady, the first witnesses to be called this morning are impact witnesses from each of the four Bereaved groups. Inevitably, they will be discussing distressing themes, including end-of-life care, and death, and indeed, the fourth witness this morning will also cover matters including death by suicide.

Can I remind, therefore, everyone in the hearing room and those watching online that there is support available here at Dorland House and on the Inquiry website and if anyone wishes to leave the hearing room they should feel free to do so.

May I hand over now to Ms Cecil, King’s Counsel.

Lady Hallett: Thank you very much.

Ms Cecil.

Ms Cecil: Indeed, good morning, my Lady. May I please call Jane Wier-Wierzbowska.

Ms Jane Wier-Wierzbowska

MS JANE WIER-WIERZBOWSKA (affirmed).

Lady Hallett: Thank you very much for coming to help us today, we do appreciate it, and I do understand how difficult it may be. So I’m sure as Ms Cecil has already said, if you need a break at any stage, just say. Although again, I think she may have told you, most people, I find, it’s easier to get it over with, but it’s up to you. All right?

The Witness: Thank you, my Lady.

Questions From Counsel to the Inquiry

Ms Cecil: Thank you.

Ms Wier-Wierzbowska, you’re here today to share with the Inquiry your experiences during the pandemic in terms of your story, your family’s story and your mother’s story; is that right?

Ms Jane Wier-Wierzbowska: That’s correct.

Counsel Inquiry: So with that, I’d like to begin by asking you a little bit about your mum, Patricia Smalley.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: Plainly much loved.

Ms Jane Wier-Wierzbowska: (Witness nodded)

Counsel Inquiry: Sadly died during the second wave of the pandemic –

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: – on 27 January 2021.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And she was 91; is that right?

Ms Jane Wier-Wierzbowska: She was. Just 91, yes, in that month.

Counsel Inquiry: About a month after her 91st birthday?

Ms Jane Wier-Wierzbowska: Almost, yes. Well, days, yes.

Counsel Inquiry: A few days, my apologies.

Firstly, if you may, could you just tell us in a couple of words what type of woman your mum was.

Ms Jane Wier-Wierzbowska: Yes, my mum was an incredibly strong and resilient lady, really, throughout her life. She was friendly, she was fun loving, she had a wonderful sense of humour and family meant absolutely everything to her. But she was also, it sounds contradictory, but she was also quite a private person, as well. So in a number of ways that makes it quite difficult for me to share what happened to us today, but I know she’d want me to do it, as our story impacts on so many others as well.

And I want to do it, because I want us to not forget what really matters. The love and care of our families, which no politician or care home manager should be allowed to deny us.

Counsel Inquiry: Certainly in your statement, and just for those that are following, it’s INQ000614372. You paint a very vivid picture of your mum, her life.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: Her interests.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: She was a very active woman?

Ms Jane Wier-Wierzbowska: Incredibly active, yes.

Counsel Inquiry: And worked in the NHS as a clerk in the children’s ward for many years. And was the centre, ultimately, of your family life, both for you, your younger brother –

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: – and of course your dad?

Ms Jane Wier-Wierzbowska: Yes, of course. Yes, yes.

Counsel Inquiry: So what I’m going to do now, if I may, is turn really to the circumstances leading up to your mum, certainly firstly entering into the care home. Prior to that, she’d lived a little bit further away but moved closer to you following your father’s death; is that right?

Ms Jane Wier-Wierzbowska: Absolutely, yes, yes.

Counsel Inquiry: Initially into supported, sheltered accommodation?

Ms Jane Wier-Wierzbowska: Yes, that’s right, and she settled really well there and embraced the community life that was happening in there. So she did very well, as we expected her to.

Counsel Inquiry: And she was still fairly independent at that point –

Ms Jane Wier-Wierzbowska: (Witness nodded)

Counsel Inquiry: – and you enjoyed many trips, as I understand it?

Ms Jane Wier-Wierzbowska: We did. We did really actually right up until her stroke, yes.

Counsel Inquiry: Indeed, and as – if I can just deal that. Just prior to that, I understand that she was diagnosed with Alzheimer’s; is that right?

Ms Jane Wier-Wierzbowska: That’s absolutely right. Sadly, not too long after she moved down, she was diagnosed with Alzheimer’s, and obviously that was a huge blow to all of us. As we know, dementia is an untreatable progressive and terminal disease, but I knew then that what would help her would be lots of stimulation, lots of company, and that’s what I set out to give her, really.

Counsel Inquiry: – (overspeaking) – and you describe that don’t you in your – you give a very vivid description, again, in your statement of taking her on different trips and National Trust, and so on and so forth?

Ms Jane Wier-Wierzbowska: Absolutely.

Counsel Inquiry: And really engaging with her interests?

Ms Jane Wier-Wierzbowska: Absolutely, yes. She loved gardens, she loved nature, she loved animals, so that was the focus pretty much of our trips. And as time went on, when she first was diagnosed, I was working full time, but in 2014, I went down to two days a week so that I could spend more time with her, and in 2017 I retired altogether, and that meant we could go out and do things together every day, and I’m so, so glad that I did that now.

Counsel Inquiry: Thank you. So at the time when she was in sheltered accommodation, as you’ve already explained, she then subsequently suffered quite a severe stroke; is that right?

Ms Jane Wier-Wierzbowska: She did. She did unfortunately. It was extremely severe and the prognosis actually wasn’t terribly good. She lost all mobility down her left-hand side and so there was absolutely no option but for her to go into care. And she moved into the care home on 23 December 2019, so just a few weeks, really, before lockdown.

Counsel Inquiry: Exactly that. And in terms of a home, you found a home that you were happy with, that she was happy with?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: Is that right?

Ms Jane Wier-Wierzbowska: Absolutely. And I remember distinctly, it was very – it was fortunately closest to where we lived as well, and, you know, so there would be no issues with any kind of transport problems. I knew that I could get there on foot if I needed to. And I remember distinctly saying to her “There is absolutely nothing that can stop me being here with you”, and how wrong I was.

Counsel Inquiry: And the reason for that was because she required full-time specialist care that was simply not able to be provided in the community or at home with you?

Ms Jane Wier-Wierzbowska: Absolutely, yes, she was basically immobile, really, yeah.

Counsel Inquiry: So if I can begin, then, in December of 2019, when she moved in, in terms of her living conditions, how would you describe those?

Ms Jane Wier-Wierzbowska: Within the home?

Counsel Inquiry: Within the care home?

Ms Jane Wier-Wierzbowska: Yeah. Well, she had a lovely room there on the ground floor which overlooked a huge courtyard area. She was right in the corner of it, but nonetheless it was a nice view, and I took in pots of plants so she could see those, and we had a bird table put outside so she could still enjoy nature. After probably a couple of weeks they were able to get her into a chair, so she was able to be moved around. It was a huge, heavy armchair-like structure and it was very difficult to move but you could move her around, so she could go to social events in the lounge or we could take her to one of the other rooms to sit and have a different kind of social time with her.

So it was positive, and I was able to be with her. You know, I was very worried about her, obviously, after her stroke. She was obviously already losing her memory and she had lost her mobility. She had been so active throughout her life, as you mentioned earlier.

But she did start to make some progress.

Counsel Inquiry: And in terms of just picking up on one of the things you just mentioned there, how often did you visit your mum?

Ms Jane Wier-Wierzbowska: Every day.

Counsel Inquiry: In December and January 2019 [sic].

Ms Jane Wier-Wierzbowska: Every single day. I used to go in in the morning, gave them a bit of time to, sort of, get her up and get her ready, and I’d go in about 10.00 in the morning, and she used to get tired so she was ready, really, to go to sleep in the evening, so I left about 8.00 in the evening, so I was there all day really, with her.

Counsel Inquiry: In terms of what you did when you were there, obviously you were company?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: You obviously spoke about many different things?

Ms Jane Wier-Wierzbowska: Mm-hm.

Counsel Inquiry: What other activities did you undertake with your mum?

Ms Jane Wier-Wierzbowska: Really, in terms of her wellbeing, I helped to manage her food. If she wasn’t eating well, you know, I would make sure I’d take in things that might tempt her, that I knew that she liked, she had quite a sweet tooth, and I’d do that.

Not too long after being in there, she was diagnosed with dysphagia, and so she had to have thickener in her tea, and her fluid levels were low so I would regularly go and make her tea and put the thickener into the tea and help her drink it, as well. You know, she was adjusting, as well, to life with just one active hand and not being easily mobile, so it was quite important that I did that and kept her fluid levels up.

We also had a private physiotherapist come in and assess her, and although she felt that there was no way she was going to probably be able to move her arm again, she did give me some hope about her leg and recommended exercises that we do every day.

Counsel Inquiry: And did you do those with her?

Ms Jane Wier-Wierzbowska: Yes, I did. I did.

Counsel Inquiry: And in terms of her mental and cognitive state at that point, how would you have described that? So just immediately prior to the pandemic and lockdown?

Ms Jane Wier-Wierzbowska: Obviously by that point she’d had Alzheimer’s for seven years –

Counsel Inquiry: Of course.

Ms Jane Wier-Wierzbowska: – so she did get a bit confused at times, but generally speaking she was aware of what was going on around her, had opinions about things, and she knew who I was and who the rest of the family were. So that was all very encouraging.

Counsel Inquiry: So the pandemic then struck.

Ms Jane Wier-Wierzbowska: Mm.

Counsel Inquiry: And you explain in your statement that you were told on 17 March that the home was going to be effectively locked down as well; is that right?

Ms Jane Wier-Wierzbowska: That’s absolutely right, yes. The impact was catastrophic on me because, as I’ve just explained, I was so involved in my mum’s care within the care home. And as Counsel to the Inquiry said yesterday, you know, a care home is not a hospital, it’s a person’s home. But in that moment, that was taken away from us. It was no longer my mum’s home because it was going to be alien to her without me there and without other visitors too, but predominantly – as I’ve said, I was every day –

Counsel Inquiry: Was that an immediate lockdown from that point forwards?

Ms Jane Wier-Wierzbowska: It was immediate. I got very upset. He came into the room and I was with Mum. I don’t think she was quite as aware of what was going on because it was in the evening, and I remember crying, and not coping with it at all, and he was trying to say, “You need to stop because of your mum.”

Counsel Inquiry: It was obviously a very, very difficult situation for you both?

Ms Jane Wier-Wierzbowska: It was extremely difficult, yes.

Counsel Inquiry: Were you able, or was one of the care staff able, to explain to your mum what was going to happen, in terms of the home being closed and you no longer being able to visit?

Ms Jane Wier-Wierzbowska: I really hope so but I don’t know. I mean, I tried to explain to her then, and I tried to explain to her every time I had some sort of visit, if you can call it that, the phone calls and Skype calls, and –

Counsel Inquiry: We’re going to move to those visits.

Ms Jane Wier-Wierzbowska: – (overspeaking) –

Counsel Inquiry: Please don’t worry, we will go through those in just a moment.

And certainly within your statement, at paragraph 11, what you explain is that you had to try to say goodbye to your mum that day –

Ms Jane Wier-Wierzbowska: Yeah.

Counsel Inquiry: – not knowing when you would have any physical contact or see her again, effectively, in that sense?

Ms Jane Wier-Wierzbowska: Absolutely. And the physical contact turned out to be never. I never had that again with her. And that was ten months prior to her death. So it seemed extraordinarily cruel and inhumane to be kept apart for that length of time. And increasingly, Mum did not understand, and reacted in different ways to that, which were equally upsetting to me.

Counsel Inquiry: I’m just going to move then to the visits you were able to have and the initial visits that took place. As I understand it, those were window visits; is that right?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: How would you – just describe that for us, please.

Ms Jane Wier-Wierzbowska: Okay. Well, Mum was taken into one of the lounges at the front of the building, so there were other residents there. They’d move her to the window, and I would stand at the window – the first time I did it, I tried to speak but of course she couldn’t hear me through the window. So the next time I printed off messages for her which I held up. I mean, how that must have appeared to someone with dementia, I don’t know; that her daughter was standing outside of the building where she was, when she’d been in there with her every single day, and holding up things to read. But she didn’t seem agitated or distressed by it, but after eight days, I was told that I could no longer do that.

Counsel Inquiry: And at that point had you been attending every day –

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: – with your placards?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: Your pieces of paper?

Ms Jane Wier-Wierzbowska: Yes, yes, every single day.

Lady Hallett: Did they give a reason?

The Witness: Pardon?

Lady Hallett: Sorry to interrupt.

Did they give a reason?

Ms Jane Wier-Wierzbowska: They did give a reason. The most significant reason was that they had to think of all their residents’ welfare which, you know, I can appreciate, but can’t see how I was impacting on that. And they had to ring-fence the space, the garden, for residents who wanted to go outside. But the grounds were huge and there were lots of areas that could have been ring-fenced or identified for residents who wanted to. So I can’t see how that was a problem.

Ms Cecil: Thank you.

And you’ve just alluded to the fact that they were stopped, they were stopped around 27 March; is that right?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And why were they stopped at that point? Do you know?

Ms Jane Wier-Wierzbowska: I think government guidance, probably, said that should stop too. I don’t really know, that seemed to be so random and change so frequently. Although that was just the beginning, obviously.

Counsel Inquiry: And did you raise your concerns about the lack of visits with the home?

Ms Jane Wier-Wierzbowska: I absolutely did, but at that point, you know, they were adamant that this space should be reserved for residents and that, you know, government guidelines were saying that there shouldn’t be any visits. They said some residents became distressed, and I said that my mum wasn’t distressed by it at all, and that perhaps they should review the situation on a case-by-case basis, but they were adamant that I wasn’t going to be able to see her in that way anymore.

Counsel Inquiry: Do you know if they ever did review that situation on a case-by-case basis, or were there blanket restrictions or conditions put in place on each occasion?

Ms Jane Wier-Wierzbowska: As far as I know, they didn’t review it, but they just kept the blanket ban there.

Counsel Inquiry: You explain in your statement that you felt you were treading on eggshells. What did you mean by that?

Ms Jane Wier-Wierzbowska: I felt I had to be very, very cautious. I, you know, my mission became I must see my mum and keep contact with my mum in every single way I can, and from the time that I started doing these window visits, I was also having a 7 o’clock phone call in the evening. I wanted to speak to her every day before she went to sleep in the evening, and they let me do that. And I – and Skype calls began, and I would have those as often as I could. And I just felt that if I was too pushy, they might not let me have these calls every evening, or some of the Skype calls that I had. And I was terrified that if I pushed too hard, all of my contact with my mum or a lot of my contact with my mum would be cut off.

So it was a balancing act, I feel, to keep … you know, I was persistent, always polite, I hope, but I was determined that I wanted to keep contact with Mum. I wanted to be able to manage her healthcare, I’d been doing that for years. You know, I had shared power of attorney for her health as well and suddenly all that had disappeared.

If I couldn’t see her or have contact, I didn’t know really how she was. And of course with the dementia, I didn’t want her to forget who I was –

Counsel Inquiry: Of course.

Ms Jane Wier-Wierzbowska: – either. And I’m very grateful that she never did.

Counsel Inquiry: So those phone calls then became your daily contact with your mum, is that right, initially after that?

Ms Jane Wier-Wierzbowska: Yes, yes.

Counsel Inquiry: And then that progressed into the video calls –

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: – that you’ve just described.

Ms Jane Wier-Wierzbowska: Yes, mm.

Counsel Inquiry: And in terms of those video calls, how frequent were those?

Ms Jane Wier-Wierzbowska: They were variable. So not necessarily regular, but I’d call every day to see if I could have a slot, and generally they were very helpful in letting me do that if they could. But the nature of the calls was quite difficult at times. Obviously the technology was not something Mum was familiar with anyway, she couldn’t use it because of her mobility issues and because she didn’t understand it, so there was never any privacy on the call.

Counsel Inquiry: Did you always have a member of staff then present to assist your mum?

Ms Jane Wier-Wierzbowska: Yes, yes. Always.

Counsel Inquiry: Were these taking place on iPads or something like that?

Ms Jane Wier-Wierzbowska: They were.

Counsel Inquiry: They were?

Ms Jane Wier-Wierzbowska: Yes, yes. So they’d take the iPad to her. And it was variable. I mean, every day or every call, I’d explain why I couldn’t be there.

Counsel Inquiry: Do you think your mum understood that?

Ms Jane Wier-Wierzbowska: Not really, no.

Counsel Inquiry: Not really?

Ms Jane Wier-Wierzbowska: No. I think it’s hard because the world inside the care home was seemingly going on as normal. Nothing there, apart from my absence, had changed, and it haunts me always that she feels that I was choosing not to be there for some reason.

Counsel Inquiry: I do understand that. And in terms of those video calls, there was then a point where you were able to visit again, to actually physically go to the care home?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: That was in around June until September; is that right?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And either in the open lounge door or in the garden?

Ms Jane Wier-Wierzbowska: Yes, yeah.

Counsel Inquiry: And were those visits also socially distanced?

Ms Jane Wier-Wierzbowska: Absolutely they were, yes. Yes. They – Mum was often, because her chair was quite difficult to move, usually in the lounge area, with the patio doors open, and there’d be a trestle table keeping distance between us. And that was difficult. Mum often felt the cold, and she would be, you know, distressed by that, and so some of that precious half hour would be felt – would be spent seeing if I could find someone to go and get a blanket or a cardigan or something to keep her warm.

Counsel Inquiry: To make her more comfortable?

Ms Jane Wier-Wierzbowska: To make her more comfortable, yes, so she could kind of focus on the visit.

Counsel Inquiry: And then I understand that those were paused for a short period because there was an outbreak of Covid in the home. Before then, um, visits resuming but in a slightly different format again?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And they’d evolved to what they called “pod visits”. And I understand that the care home had built two – had effectively kitted out two purpose-built spaces?

Ms Jane Wier-Wierzbowska: Mm.

Counsel Inquiry: One was a former library.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: One was a former bedroom. But spaces with a perspex screen dividing the room.

Ms Jane Wier-Wierzbowska: Mm.

Counsel Inquiry: So, again, that distance is there, with some level of physical protection –

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: – was, I think – was, I assume, the aim.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And also a sound system to assist with communication for the obvious needs of the residents within the home.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And how did you find those visits?

Ms Jane Wier-Wierzbowska: Difficult, again, for different reasons. The problem with booking a half hour slot anyway is that, you know, you don’t know what time of day it’s going to be and how Mum is going to be. She’d sometimes be very sleepy, so contact would be limited.

When she wasn’t, she would almost certainly beckon me in and say, “Just come on through”, and I’d have to again explain that I couldn’t do that. It was very hard. I mean, obviously I was pleased to be able to see her in some way possible but it just really wasn’t acceptable. I wasn’t able to give her the quality and amount of care that I’d been used and wanted to, and it was always very distressing leaving her, and her going back to her room. I don’t know how much – you know, there was no regulation. I have no idea. I asked questions, sometimes, but again, it was that I don’t want to be put pushy because they – you know, I phoned every morning to see if there were pods or garden slots, and generally they were very good, and if there were slots, because it was a large care home, they let me in. And I thought: if I start pushing too much they’re going to stop that. So, again, I held back.

Counsel Inquiry: And throughout this period, how was your mother’s health, wellbeing?

Ms Jane Wier-Wierzbowska: Deteriorating. Without a doubt. Yes. Yeah.

Counsel Inquiry: And certainly in terms of the visiting guidance and the different restrictions that were put in place, you explain within your statement that there was a lot of confusion and there were often competing guidance – aspects of guidance either from national government or the local authority or, indeed, other organisations or the care home; is that right?

Ms Jane Wier-Wierzbowska: That’s absolutely right, and again, it just added to my stress and trauma of the situation, you know, one time in particular I remember that we were in tier 1 as an area, which said that visits could be allowed but our local public health deemed, apparently, they told me at the care home, that visits weren’t safe to continue, and so they followed the local advice and stopped the visits.

Counsel Inquiry: And if can just then just pick up again on something that you mentioned briefly earlier in relation to obviously you weren’t able to know exactly what was going on or taking place in the care home –

Ms Jane Wier-Wierzbowska: No.

Counsel Inquiry: – in terms of visibility because you weren’t there, but you had one concern about whether or not she was being taken to the communal areas and obtaining stimulation in that respect. How did that concern come about?

Ms Jane Wier-Wierzbowska: It came about via one Skype call in particular, and it was a Saturday afternoon, and she was in bed, which concerned me. You know, I didn’t know if there was a problem with her health. It turns out that there wasn’t but they just hadn’t got her up that day. They were, I guess, staffing, we know, was often a problem, and I think they were just taking it in turns a bit with residents that they got ready, and got up.

But it really worried me that for someone in her position who relied totally on others, she was losing her memory, she’d lost her mobility, she’d lost her family, it seemed to her, and she was, you know, she was in her bed on a Saturday afternoon, mid to late afternoon. And I thought, I’ve no idea how often this might happen. And I didn’t even know if, on the days that she’d been got up, whether she’d been taken from her room in her chair to the lounge or not. So I just don’t know.

And again, they weren’t questions that I could often ask. It depended sometimes who was with her, and when I felt I could, I’d say, “Is Mum going to the lounge later?” Or “Has she been to the lounge?” But again, it was a bit of a lottery as to what I could say or do.

Counsel Inquiry: And you touch upon the impact of isolation upon those with dementia and Alzheimer’s within your statement.

Ms Jane Wier-Wierzbowska: (Witness nodded).

Counsel Inquiry: And certainly, in due course, that’s what – we will be hearing from Professor Banerjee, an expert in those matters and, of course, also the Every Story Matters record –

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: – which effectively records the same sentiments.

Ms Jane Wier-Wierzbowska: Mm.

Counsel Inquiry: I just want to move on, if I may, to immediately prior to your mother contracting Covid within the home, but just before I do that, just touching on an occasion when your mum needed external medical care. How was that organised, did you have any difficulties accessing that medical care?

Ms Jane Wier-Wierzbowska: Not really. I think the situation that you’re referring to there, I spoke, as I did when I phoned in the evenings, it would go through to a member of staff and I was told that Mum’s oxygen levels were very low and obviously I was hugely concerned about that and I knew from an incident before lockdown where we’d had the Rapid Response Team out that they could do that, and so I requested that they bring in the Rapid Response Team, and they did, and they put her on oxygen.

Counsel Inquiry: Now I just want to turn to, as I say, later in January of 2021, when your mum contracted Covid.

Ms Jane Wier-Wierzbowska: Mm.

Counsel Inquiry: And you explain that she had no real symptoms of Covid, and appeared asymptomatic; is that right?

Ms Jane Wier-Wierzbowska: She did. I mean, she was by this stage on the oxygen, but she didn’t appear to be struggling with her breathing, there was no coughing, nothing that suggested to me that she had Covid. It did seem asymptomatic, yes.

Counsel Inquiry: And were you able to see your mum initially following that diagnosis?

Ms Jane Wier-Wierzbowska: No.

Counsel Inquiry: No. And there came a point where you were aware that she was approaching her end of life, and at that stage, were arrangements made for you to visit?

Ms Jane Wier-Wierzbowska: There were arrangements about, probably five, six or so days before her death. Her room, I think I said, was in the corner of a courtyard.

Counsel Inquiry: You did.

Ms Jane Wier-Wierzbowska: An open area. And I was told that I could go and see her through her bedroom window, through her patio doors. And so I obviously leapt on that, and I took a garden chair with me, and a – this was January 2021 – and a hot drink, and layers of clothing, and my mobile phone. And I went and sat outside her patio door for as long as I could until someone said, “You should leave now” or it was dark and she wouldn’t have been able to see me anyway. But bizarrely, I had to be on my own. I couldn’t take my husband or a friend with me. It was just me, despite I could see no reason, no logical reason, why that would pose a threat, to anyone.

But anyway, I was able to do that. I had my phone, they put a mobile phone in a black bin-bag on my mum’s shoulder, and I was able to talk to her. I did have conversations then, but obviously she became more ill, and in the last 48 hours of her life I was allowed end-of-life visits. I’m not sure why end of life had to mean those last hours, why it couldn’t have been before. It makes no sense to me who determines what is end of life, and why can’t there be more dignity than having to speak to Mum through a plastic bag?

By the time I was allowed in, probably the first 24 hours, she was conscious, she was aware who I was, but she wasn’t communicating with me. She was non-verbal. And then when I went in the next day she was unconscious. So I – (overspeaking) –

Counsel Inquiry: I’m just going to ask you a couple of questions, if I may, about those visits. You’ve explained you were only allowed to go on your own.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: Is that right?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: Your husband would often wait in the car outside for you.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And in terms of those visits, you would also have to wear PPE equipment; is that right?

Ms Jane Wier-Wierzbowska: Yes, yes.

Counsel Inquiry: And that would involve a face mask?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: An apron?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And gloves?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And in terms of her room, you also explain in your statement that the – the layout of how it looked changed?

Ms Jane Wier-Wierzbowska: It did.

Counsel Inquiry: And became more clinical?

Ms Jane Wier-Wierzbowska: It did, yes.

Counsel Inquiry: And how did you feel about that? How do you feel that impacted those visits with your mum?

Ms Jane Wier-Wierzbowska: Again, it didn’t feel like a home, her home. It felt more austere and unfriendly and intimidating to her, I think. Probably one of the worst times was after I’d been told she had Covid or had tested positive for Covid. Clearly, she’d seen the changes to her room and clearly seen perhaps a difference in what staff were wearing. And she said to me on my nightly phone call “Is this it?” And that’s the most awful conversation I’ve had to have. And obviously, I tried to reassure her. As I said right at the beginning, she’d been an incredibly strong and resilient woman throughout her life, very powerful, very admirable. And, you know, very matter-of-factly, “Is this it?” And I couldn’t say, “Yes, it is.” You know, I think perhaps I was in denial a bit myself because she was asymptomatic and because, you know, she was so strong, I thought perhaps she could pull through it. Naively, of course, but you hope for the best in these situations.

But it was very difficult, and I think the change in the environment put that idea into her head too.

Counsel Inquiry: In terms of your – in terms of how you were able to visit, you were still socially distancing, as I understand it?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: So you were still a metre or so away from her –

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: – at the end of the bed?

Ms Jane Wier-Wierzbowska: Yes. So, again, it seemed so cruel. I couldn’t be posing any kind of threat at that point. So as I said, for ten months, even as she lay dying, I could have no physical contact with her. And, you know, I remember when I lost my dad in 2010, and he was dying, I promised him that I would look after my mum, and I just felt that I’d let her down so badly. And that guilt is just with me always.

Counsel Inquiry: And certainly – but you were there when she passed away – with her?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And you stayed for a while after that, as I understand it, with her?

Ms Jane Wier-Wierzbowska: I did. I did, yeah. One of the nurses went to tell Mike, who was in the car park, what had happened, and he was allowed to come round to the door to check on me, but he still wasn’t allowed to come into the room. Which, again, makes no sense to me.

Counsel Inquiry: It must have been an incredibly lonely experience for you?

Ms Jane Wier-Wierzbowska: It was.

Counsel Inquiry: And distressing. I just want to touch, if I may, then, on the funeral arrangements. And you explain that it was really at this point that you were able to touch your mum again as part of those end-of-life rituals and the care that was being undertaken by the undertakers. Your mum had paid for a funeral plan herself, she had set it all up, but they were unable to facilitate that, and so you chose, understandably, to move to a different undertakers who could facilitate that?

Ms Jane Wier-Wierzbowska: Yes, yes.

Counsel Inquiry: And did that bring some level – small level of comfort to you?

Ms Jane Wier-Wierzbowska: Yes, it did ultimately. There was a lot of additional trauma that shouldn’t have been there, really. But again, you know, I think funeral directors were following guidelines, just as care homes were following guidelines. So they were making their own decisions. There was no law to allow, you know, people to have the comfort and humanity of being with loved ones, living or dead. But it was a huge relief to me, yes, to be able to provide a provider, and the original funeral home did actually help me in finding someone who would allow me to visit, and yes, I spent as much time as I could with my mum, while I could.

Counsel Inquiry: Of course.

And then, as you describe then, a funeral taking place in accordance with the restrictions at the time.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: Socially distanced –

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: – and all of those restrictions in place.

If I may turn on, really, to one aspect of her legacy, if I may. You’ve been since – subsequently involved in quite a significant amount of campaigning work, and that’s covered within your statement in some detail, and also working with One Dementia Voice.

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: And one aspect that you consider to be very important, is about either granting a family member or a friend, firstly – within the pandemic, it was key worker status?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: But more broadly, now, a legal right, effectively?

Ms Jane Wier-Wierzbowska: Absolutely.

Counsel Inquiry: And you’re a supporter of what’s called Gloria’s Law?

Ms Jane Wier-Wierzbowska: Yes.

Counsel Inquiry: Would you like to tell us just a little bit about that? I know it’s important to you.

Ms Jane Wier-Wierzbowska: It’s absolutely critical to me. You know, after my experience, and witnessing my mum’s deterioration through a screen, that didn’t have to happen. She could have had – she could have had the comfort and love of a family member, and she could have had my support, continually, with her health and wellbeing.

And to have been denied that, to me, seems absolutely immoral. Against all human rights, I believe. And so, quite a shock to me, I did become – I am a campaigner. You know, I didn’t choose activism, I was activated. I really, really passionately believe in Gloria’s Law, which is the legal right to a care supporter.

And it absolutely has to be legal because we saw what happened with guidelines. Everyone approached them differently. They changed all the time. But to give someone legal status and that peace of mind and reassurance I think is absolutely critical for a humane society.

Ms Cecil: Thank you very much for sharing your story with us.

I’ve no further questions, my Lady.

Lady Hallett: You’ve become a very eloquent campaigner, so you may have missed your vocation, I think.

Thank you very much indeed for helping the Inquiry. I know it doesn’t help for me to say it, but you did keep your promise and you did look after her to the best of your ability. So, I don’t know if I’ll forget the image of you sitting outside in January, wrapped up, in an English winter – or a British winter. I’m so sorry for what happened at the end, but try to remember the positives of your life together, and we shall investigate the negatives.

The Witness: Thank you so much, my Lady.

Lady Hallett: Thank you very much indeed.

The Witness: Thank you. As I said, earlier, really, really, it shouldn’t be care home managers and politicians deciding whether we can care for our loved ones. It really shouldn’t.

Lady Hallett: I think there will be many people who obviously will remember the awful number of deaths during the pandemic, but hadn’t really appreciated this particular point that you made so eloquently. So thank you very much indeed.

The Witness: Thank you, my Lady.

Lady Hallett: Ms Jung.

Ms Jung: My Lady, the next witness is Mrs Judith Kilbee.

Ms Judith Kilbee

MS JUDITH KILBEE (affirmed).

Lady Hallett: Thank you very much for coming along to help us. Sorry we kept you waiting for a short time. I hope you were warned. And if at any stage you need a break, please just say, I’m sure Ms Jung has told you, but you may find it easier to get it over with, because I know it won’t be easy.

The Witness: Thank you.

Questions From Counsel to the Inquiry

Ms Jung: Could you start by giving us your full name, please.

Ms Judith Kilbee: Judith Kilbee.

Counsel Inquiry: And you’ve provided a witness statement dated 2 May 2025. That’s at INQ000614380.

Ms Judith Kilbee: Yes.

Counsel Inquiry: Is it right that you have a background in nursing?

Ms Judith Kilbee: Yes, I do.

Counsel Inquiry: And you’ve worked in nursing homes before?

Ms Judith Kilbee: Nursing home and care homes.

Counsel Inquiry: And care homes. And you’ve also worked as a business manager for a specialist care home group?

Ms Judith Kilbee: Yes, that’s correct.

Counsel Inquiry: So it’s fair to say that you’re fairly knowledgeable and experienced in the way that care homes operate?

Ms Judith Kilbee: Generally, yes.

Counsel Inquiry: You’ve come today to talk about your personal experience; is that right?

Ms Judith Kilbee: That’s right.

Counsel Inquiry: And that’s in relation to one particular care home in Scotland that your dad was in and sadly died in on 10 May 2020?

Ms Judith Kilbee: Yes.

Counsel Inquiry: Before we talk about your dad’s time in the home, could you just tell us a little bit about your dad, please, about his character, his sense of humour, what he liked to do.

Ms Judith Kilbee: He was a Geordie. He had a great sense of humour, as I think many of them do. He loved nature, he loved the environment. He always stood up for people that he felt were mistreated. He taught all his children lots about nature and, you know, we were hounded by “What’s that bird?” when we went for a walk; you never had any peace. And he invested those interests into all of his grandchildren as well. He – I never heard him say a bad word about anyone. He was a happy, sociable person.

Counsel Inquiry: And is it right that he had eight grandchildren?

Ms Judith Kilbee: He had eight grandchildren, yes.

Counsel Inquiry: And he loved spending time with his family?

Ms Judith Kilbee: Yes, very much so. And he was very practical and he always wanted to help when he came to visit, so he was, yeah, a very genuine person.

Counsel Inquiry: Is it right that your dad was diagnosed with Alzheimer’s?

Ms Judith Kilbee: Yes, shortly – a couple of years after my mum died. But that Alzheimer’s manifested just, really, in short-term memory loss. He never changed his personality or lost his sense of humour. He was always grateful. He wasn’t someone that would wander. He – you know, he was still driving before he went into the home after the stroke.

Counsel Inquiry: And when you say it really just affected his short-term memory, did he need constant reminding, for example, to take his medicine?

Ms Judith Kilbee: Yes, latterly at home we were having to ring up and remind him, and, you know, plan meals for him and that kind of thing, to make sure that he looked after himself.

Counsel Inquiry: You mention that he was still driving. He was fairly independent, was he?

Ms Judith Kilbee: He was very independent, loved getting out for drives in the countryside. And yes, so he’d relied on his car because he lived in a small village and that took him to all his activities.

Counsel Inquiry: One thing in particular that he very much enjoyed doing is going to a place called Healthy Hearts; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And is that someone where he would go and exercise and socialise?

Ms Judith Kilbee: Yes, he had a stent put in many years ago and that was part of the local health board offering, which was cardiac rehabilitation. So he went for something like 15 years, twice a week, and he would do volleyball and aerobics. And that –

Counsel Inquiry: And did that – sorry to interrupt you.

Ms Judith Kilbee: Sorry. And that continued up until he had that stroke.

Counsel Inquiry: And was that very much a support for him after your mother died?

Ms Judith Kilbee: Yes, it was. Because she used to go sometimes with him and just take part in the exercises, but it was a structure for him. You know, he would mark his calendar. Because of his memory, he’d have a red heart on each of the days that he went to Healthy Hearts, so his calendar always told him which day it was.

Counsel Inquiry: You mention that your dad had a stroke. Was that in September 2018?

Ms Judith Kilbee: Yes, it was.

Counsel Inquiry: And you were with him at the time?

Ms Judith Kilbee: Yes, I’d spoken to him on the phone the night before, and came off the phone and said to my husband, “I feel Dad’s – there’s something wrong. He says he’s not depressed but his voice is weak, it’s thready. I’m going to see him tomorrow.”

So I was – called down to see him, found him confused and unstable on his feet, and he had a stroke in front of me. So I knew there was something happening, and I was right.

Counsel Inquiry: And is it right that, as a result of that, he spent three weeks in hospital?

Ms Judith Kilbee: He did, yes.

Counsel Inquiry: And it was after that that the decision was made that he should go into a care home?

Ms Judith Kilbee: Yes. He wouldn’t have managed at home immediately following the stroke, so the decision was made then.

Counsel Inquiry: Could I ask you just to slow down a tiny bit, please, Ms Kilbee?

Ms Judith Kilbee: Sorry. Certainly.

Counsel Inquiry: Thank you.

So he went into a care home in Scotland; it was a small care home. Is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: It was based in Scotland but had a head office in England?

Ms Judith Kilbee: It did, yes.

Counsel Inquiry: Your dad made a full recovery from the stroke, didn’t he?

Ms Judith Kilbee: Completely.

Counsel Inquiry: And in January 2019 you arranged for him to start attending Healthy Hearts again once a week; is that right?

Ms Judith Kilbee: Yes, because of the nature of the home, it was so small that he would be lucky if he’d walk 20 steps from one – from A to, B and there wasn’t a garden per se, there was a little courtyard out the back. So I felt that for his mental wellbeing and mobility he needed to be doing some activities. So I felt that it was time to try it, and spoke to Healthy Hearts and the home, who agreed, but the home couldn’t take him because they didn’t have the staff capacity.

Counsel Inquiry: So the home was nearby Healthy Hearts –

Ms Judith Kilbee: It was.

Counsel Inquiry: – but they weren’t able to help with that?

Ms Judith Kilbee: No.

Counsel Inquiry: So is it right that you did a 100-mile round trip to take your dad –

Ms Judith Kilbee: Once a week, it wasn’t twice a week at that point, it was once a week, and if I couldn’t do it because I was away with work my husband kindly would step in and do that. So we felt it was important to keep Dad mobile and keep him in that environment.

Counsel Inquiry: And were you able to see any benefit in him attending Healthy Hearts?

Ms Judith Kilbee: Massively. He would forget where he was going and say, “Where is this place?” And as soon as he walked in – well, even before he walked in, he’d walk through the car park and he’d a face he recognised and start chatting to them. And muscle memory was there, when the music started he knew which aerobics he was going to do to each particular piece of music. So it was really beneficial for him, yes.

Counsel Inquiry: Thank you, Ms Kilbee.

Can we now move on, please, to some of the infection prevention control measures –

Ms Judith Kilbee: Certainly.

Counsel Inquiry: – at the home, because it’s right, isn’t it, that you had some serious concerns about the measures that were in place there?

Ms Judith Kilbee: I didn’t feel that they were really understanding or set up to do proper infection prevention and control.

Counsel Inquiry: Okay. We’re going to go through some of those concerns. It’s right, isn’t it, that your dad’s birthday was on 12 March 2020?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And that’s the last time you were able to see him in person?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And on that day did you take him out to the countryside –

Ms Judith Kilbee: We did.

Counsel Inquiry: – with some tea and some cake?

Ms Judith Kilbee: We did, it was something my parents did often. They would take a flask and go out and sit somewhere looking at nature. We made it very clear to the home that that’s what we were doing and emphasised that we weren’t taking Dad anywhere near people. We wouldn’t have taken him into a café or anything, because we were really concerned about the Covid situation. So that’s what we did.

Counsel Inquiry: And why did you feel the need to tell the home where you were going, and the fact that you weren’t going to go near people?

Ms Judith Kilbee: Because we felt that they hadn’t quite grasped the enormity of what was coming, and having seen the images on TV in Spain and Italy in care homes, we were acutely aware of it, and really wanted to hammer that point home.

Counsel Inquiry: And when you said this to the manager, do you remember what the manager’s response was?

Ms Judith Kilbee: I asked him about reducing footfall through the home, and urged him to do so, and was told “We haven’t been told to lock down yet.”

Counsel Inquiry: When you got back to the home, they had very kindly prepared some birthday cake; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And your dad blew out the candles and shared his cake with the other residents. Were they together in the same room when they did that?

Ms Judith Kilbee: They were, there were a few residents in the room, but they all congregated. There were few numbers in the home so they would congregate around a large dining table, so we didn’t see him having the cake with them but they got him to blow out the candles and then they were taking the cake to the table for everyone to share. And I remember thinking at the time, I didn’t say anything to them at the time, but thinking this is maybe normal practice in the past, but this is, you’re not aware of the Covid issue. This shouldn’t be happening now.

Counsel Inquiry: Did it appear to you that the staff understood what the potential risks were?

Ms Judith Kilbee: Not at that time no.

Counsel Inquiry: You say that there was some hand gel available at the care home?

Ms Judith Kilbee: Yes, there was.

Counsel Inquiry: And visitors were encouraged to use that gel?

Ms Judith Kilbee: Yes.

Counsel Inquiry: Were there any other measures in place that you could see?

Ms Judith Kilbee: Not that we could see at that time, no.

Counsel Inquiry: And it’s right, isn’t it, that that day you waited for him outside the toilets so you could remind him to wash his hands?

Ms Judith Kilbee: Yes, because he was mobile and independent in that way, but I wanted to make sure that he didn’t just wash his hands and just run them under the tap. I wanted to make sure he did it properly.

Counsel Inquiry: And was that something he needed reminding to do?

Ms Judith Kilbee: Not to wash his hands, no, but to use the gel or to wash his hands thoroughly, yes.

Counsel Inquiry: Is it right that a week later, there was a review due in regard to your father, and you suggested meeting remotely for that?

Ms Judith Kilbee: We actually said we wouldn’t come in for it, because we didn’t want, again, emphasising the footfall through the home, so we wanted to do that remotely, yes.

Counsel Inquiry: And the manager’s response was to meet in the conservatory instead, which would avoid going into the home. What were your concerns with that?

Ms Judith Kilbee: We refused to do that because we said that “Although you’re – we’re meeting in the conservatory, you’re meeting us and then you’re going back into the home, which is the same as us, to my mind, going into the home.”

Counsel Inquiry: Can I ask you about the recruitment of staff, please. In April 2020, is it right that you saw a notice from, I think you say in your statement that it was Public Health Scotland but could it have been the local public health teams?

Ms Judith Kilbee: Which statement, sorry?

Counsel Inquiry: In your witness statement you refer to a statement from Public Health Scotland about capacity and offering staff support if needed. Do you know if that could have been from the local public health teams rather than Public Health Scotland?

Ms Judith Kilbee: It may well have been. I certainly, when I heard of – they’re planning to bring staff in, I did find in writing something that said to contact the local team, or the team – I thought it was Public Health Scotland – who would help with staffing.

Counsel Inquiry: And is it right that you saw an advert from the care group advertising for temporary staff?

Ms Judith Kilbee: Yes, they were advertising within their own network on Instagram, advertising for temporary staff.

Counsel Inquiry: You say that they were asking particularly for school-leavers and shop assistants?

Ms Judith Kilbee: Mm.

Counsel Inquiry: Do you know why they were asking for those in particular?

Ms Judith Kilbee: Presumably because they were low paid and they would be available.

Counsel Inquiry: Do you know if they took up the offer from the local public health teams for extra support for staffing?

Ms Judith Kilbee: I don’t know if they even approached them.

Counsel Inquiry: And it’s right, isn’t it, that soon afterwards there were, indeed, some new staff at the care home?

Ms Judith Kilbee: Yes, there were several youngsters.

Counsel Inquiry: When you say youngsters, I think in some cases they were the teenage offspring of the care staff?

Ms Judith Kilbee: Certainly of people that were associated with the home, yes.

Counsel Inquiry: And do you know what kind of jobs they were given? Were they given any jobs relating to personal care?

Ms Judith Kilbee: I was asked – I asked about this and asked if they would be given appropriate training and was told that they’d be given suitable training for the tasks they had to complete. So I assumed it would include personal care.

Counsel Inquiry: Do you know what PPE they were given to wear?

Ms Judith Kilbee: I don’t think at that time anyone was wearing PPE. I don’t think the guidance had come through at that point.

Counsel Inquiry: But is it right that you were at that point very concerned about their knowledge of PPE and IPC measures?

Ms Judith Kilbee: Yes, I was.

Counsel Inquiry: On 18 April 2020, the manager came in with symptoms; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And he thought that it was just a cold?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And I think the next day he did a test, I think you say because he wanted to prove that it was just a cold.

Ms Judith Kilbee: Yes, he did.

Counsel Inquiry: And in fact the test came back positive; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: Do you know if there was any policy or protocol in place at the time about what staff should do if they had symptoms?

Ms Judith Kilbee: I don’t know what their own policies were. I think certainly there were staff that were isolating after that, so I think they did stay away from work, but obviously he’d been in with what he thought was a cold, which proved to be Covid.

Counsel Inquiry: And on 21 April, you emailed the home to ask about testing of residents –

Ms Judith Kilbee: Yes.

Counsel Inquiry: – and staff, and that’s because of the recent Scottish guidance that had been issued?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And can you tell us what your particular concern was?

Ms Judith Kilbee: My concern was that as their head office was based in England, that they appeared to be following England-centric guidance, and I didn’t think they were very aware of what the local guidance was saying and I wanted to make sure that if there was testing available, that they were aware of that, because up until that point there hadn’t been testing for every resident.

Counsel Inquiry: And did it change after that?

Ms Judith Kilbee: I believe shortly after that there was people – the testing was for people showing symptoms, and very quickly after that, pretty much everybody, albeit not on the same day, was showing symptoms, and therefore tested. But they were tested in batches of a couple of people at a time.

Counsel Inquiry: Can I ask you about the isolation of residents?

Ms Judith Kilbee: Yes.

Counsel Inquiry: There came a time, didn’t there, when your dad was isolated, and it was decided to isolate him in the lounge area, whereas all of the other residents I think were isolated in their rooms. Can you tell us why it was decided that your dad would be isolated in the lounge?

Ms Judith Kilbee: I think because he was mobile, and sociable, it was decided by the home, along with my power of attorney siblings that isolating him – in inverted commas “isolating” – in the lounge was the best thing for him. No attempt was made to isolate him in his room.

Counsel Inquiry: And when you say in inverted commas “isolating”, is that because it was really the hub of the building where staff would go during their breaks and people would go in and out?

Ms Judith Kilbee: Yes, the two sides of the building were connected by the lounge, so to get from one half of the building to the other everyone went through the lounge. So it literally was the hub of the building.

Counsel Inquiry: You were concerned that your dad was at greater risk by being there. Do you remember what your manager’s response was to your concerns?

Ms Judith Kilbee: His response was that “Don’t worry, we have new guidance coming – I’ll send it to you – to show the PPE that we’re going to be using.” And reassured me that nobody would be allowed in the lounge without a mask.

Counsel Inquiry: And was that guidance saying that PPE should be worn for all sessional care? So that was a mask, apron and gloves, that would start when entering a resident’s room and end when leaving?

Ms Judith Kilbee: Yes, and my concern there was what was a session? In Dad’s case, if he was being brought from his room upstairs, down the stairs along the corridor and into the lounge, where did the session start and end, and where did the PPE changing start and end?

Counsel Inquiry: Do you know if the care home had sufficient PPE to follow that guidance?

Ms Judith Kilbee: I believe they did and I know that in the early part of the pandemic, before lockdown, the manager actually travelled to south of – to middle of England to get extra PPE from their head office, as well. So I think it was available in Scotland and they sourced their own.

Counsel Inquiry: And did your dad have any hand-washing facilities in the lounge area?

Ms Judith Kilbee: No.

Counsel Inquiry: And your concern, is it right, was that he would then be touching door handles and things like that that staff and other people would be using?

Ms Judith Kilbee: Yes, because he would take himself to the toilet and touch things on the way. And if he wasn’t escorted to do that, how did anyone know that those things were clean?

Counsel Inquiry: Is it right that the day that the guidance came out, your dad and other residents started displaying symptoms?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And your dad’s test came back positive on 25 April 2020?

Ms Judith Kilbee: It did, yes.

Counsel Inquiry: Along with four other residents?

Ms Judith Kilbee: Yes.

Counsel Inquiry: Is it right that the next day you heard that staff were travelling from the Midlands to help out in the home?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And your concern about that was that they may be bringing Covid with them into the home?

Ms Judith Kilbee: They were coming from an area that was a hotspot at the time for Covid, and my concern was that there may be different viral strains. Another concern was that you weren’t allowed to travel those distances, and you weren’t supposed to be moving people from one home to the other, let alone from one country to another. And also concerned about the quarantining of those individuals and testing.

Counsel Inquiry: Did you raise those concerns?

Ms Judith Kilbee: I did.

Counsel Inquiry: What response did you get?

Ms Judith Kilbee: I was assured that they would be appropriately quarantined and tested.

Counsel Inquiry: Do you know if that happened?

Ms Judith Kilbee: I don’t know for certain, but they were in the home within a couple of days, so I doubt very much that that happened.

Counsel Inquiry: And in terms of their uniforms, is it right that, rather than wearing scrubs or uniforms that could be put through a hot wash, they were wearing tee shirts but otherwise just their own clothes.

Ms Judith Kilbee: That applied to all staff. I think the guidance came out about bagging of uniforms and washing them on the premises in a hot wash, but literally the home issued tee shirts, and in some photographs they came down to people’s elbows, so – and they wore their own trousers or whatever as well.

Counsel Inquiry: On 27 April, you called the home and your dad was Covid positive at this point; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And you were told by a staff member that your dad had had a lovely time playing in the lounge with balloons with some of the staff; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And why did that cause you concern?

Ms Judith Kilbee: Well, obviously I wasn’t there and I wasn’t able to see, but the idea of a Covid-sick person playing balloons in a lounge didn’t seem to make any sense to me on any level. I mean, they may have blown them up with a machine, I don’t know, but it didn’t make any sense to me.

And I was also concerned that if there were sufficient staff to play balloons in the lounge, why were those staff not being utilised to help isolate my father in his room, which could easily have been done as there was an office next door.

Counsel Inquiry: And it’s right, isn’t it, that in the following days, you also saw some photographs of your dad and staff members standing fairly close to him. Were they wearing PPE?

Ms Judith Kilbee: No. We were sent a photograph from a relative who went and visited through the window, and it showed the staff member standing less than two feet from Dad, in a long-sleeved shirt buttoned at the wrist. No apron, no mask, no gloves.

Counsel Inquiry: And is it right that you found out afterwards that that staff member in fact had a cough when he was looking after your dad?

Ms Judith Kilbee: When I spoke to him after Dad died, he said, “Well, actually today is the first day that I haven’t had a cough.”

Counsel Inquiry: Your dad became a bit unsteady on his feet; is that right?

Ms Judith Kilbee: He did, yes.

Counsel Inquiry: And started having to be accompanied to the toilet?

Ms Judith Kilbee: They volunteered that they were now accompanying him to the toilet because he was unsteady. And that just screamed to me: why weren’t you doing that in the first place, to make sure of the hygiene and the infection control?

Counsel Inquiry: And on 1 May, he started showing signs of poor balance, decreased mobility and laboured breathing; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: An ambulance was called on that day. Did they say that they were not minded to take him to hospital?

Ms Judith Kilbee: Yes, they did.

Counsel Inquiry: It was suggested that he have a sample taken to see if he had an infection, a urine tract infection?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And in fact he had some antibiotics and he got a little bit better; is that right?

Ms Judith Kilbee: That’s right.

Counsel Inquiry: And is it right that he was moved – or on 30 April the suggestion was made to move him into a room downstairs. Your concerns about that was that that room had been previously lived in by a resident who had died of Covid?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And who was going to be carrying out the cleaning of that room?

Ms Judith Kilbee: The staff in the care home did the cleaning also, so they didn’t have a cleaner. I was concerned that if they moved Dad to that room, everything would have to be cleaned, as per the – the guidance, which would have involved long floor-to-ceiling curtains being cleaned thoroughly and furniture cleaned. I didn’t see how that was going to be done in the Covid circumstances.

Counsel Inquiry: So the cleaning was going to be done by the staff, and is it right that that day four staff tested positive for Covid?

Ms Judith Kilbee: Yes.

Counsel Inquiry: Along with some further residents, I think eight out of nine?

Ms Judith Kilbee: Yes.

Counsel Inquiry: You were sent some further photographs of your dad, and you were quite upset by one in particular. Do you remember the photograph I’m talking about –

Ms Judith Kilbee: Yes.

Counsel Inquiry: – where you turned to your husband and you said your dad was dying?

Ms Judith Kilbee: Yes, my husband and I had been for a walk and we’d got home and a message came through from my brother, he sent me a picture of Dad taken through the window, and I barely recognised him. And I just took one look at him and turned to my husband and said, “Dad’s dying.”

Counsel Inquiry: You also received a video the following day?

Ms Judith Kilbee: Yes.

Counsel Inquiry: How did he look in that?

Ms Judith Kilbee: Grey, disorientated. Dad was musical, he could recite long poems and he was trying to clap along to music and he couldn’t even coordinate his hands to clap. He was clearly – to me, clearly hypoxic and extremely unwell.

Counsel Inquiry: And it’s right, isn’t it, that in fact at 11.30 pm that day, he was very unwell with low oxygen sats and the manager called 999?

Ms Judith Kilbee: Yes.

Counsel Inquiry: They told him to call 111.

Ms Judith Kilbee: Mm-hmm. They did. Sorry, not “mm-hmm”. Yes.

Counsel Inquiry: And do you remember what the doctor said?

Ms Judith Kilbee: The doctor said, “We don’t take Covid-positive residents to hospital. Order the end-of-life pack.”

Counsel Inquiry: And did it appear to you at the time that your dad was in need of an end-of-life pack?

Ms Judith Kilbee: It appeared to me at the time that Dad needed oxygen and support, and I knew that he needed help, if he was going to recover.

Counsel Inquiry: Is it right that you yourself called 111?

Ms Judith Kilbee: I did. I was – I think in the end it was possibly 2 in the morning before I managed to speak to somebody, but I’d read in the press a statement from the local medical director a week earlier saying that there was absolutely no barrier to care home residents with Covid going into hospital, and they were sitting at 55% occupancy, and there was absolutely no reason why they wouldn’t be admitted.

So I knew that was the case, and what I did was challenge why that statement was made, because that wasn’t Scottish Government guidance, and it wasn’t local guidance. And the doctor on 111 was extremely aggressive, and said to me, “So you want me to admit your father now?” And I said, “No, I want my dad to be given the treatment that he needs when he needs it.” And he reluctantly then agreed to send the Covid team in the following day.

Counsel Inquiry: And is it right that when the Covid team came to the home and the consultant saw your dad, he agreed that your dad was not at the end of his life?

Ms Judith Kilbee: Yes, it was a she, but …

Counsel Inquiry: A she. Sorry.

Ms Judith Kilbee: She – I made sure that I spoke with her. She said, “Your dad is certainly not end of life. His chest is clear but he needs rest, so we’ll set some parameters.” There was a long conversation about – which I referred to as the tipping point. How do we get intervention for Dad before he passes that tipping point where it’s not going to be helpful? And that’s why she set up the parameters that she did.

Counsel Inquiry: And was it agreed that if his oxygen saturation fell below 92% the Covid team should be called; however, if they fell below 88 per cent that should trigger a 999 call?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And your dad should be taken to hospital if needed?

Ms Judith Kilbee: Yes.

Counsel Inquiry: She said that his chest was clear but that he was exhausted and needed rest; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And reassured you that there was no blanket policy of not admitting care residents to –

Ms Judith Kilbee: Yes, she did.

Counsel Inquiry: Over the next few days, is it right that you remained anxious and distressed?

Ms Judith Kilbee: Yes, I was –

Counsel Inquiry: Sorry.

Ms Judith Kilbee: Yeah, very much so. It was like everything we were thinking about all the time.

Counsel Inquiry: You were obviously worried about your dad’s health.

Ms Judith Kilbee: Yes.

Counsel Inquiry: But is it also the case that you were concerned that the staff that were looking after him were not trained or knowledgeable about the signs to look out for?

Ms Judith Kilbee: Yes, they were measuring pulse oximetry, but I didn’t feel that they knew the signs of hypoxia, and that’s because of various calls they’d made. So when they had called for help for Dad and they were asked by the person on 111 “Is he distressed?”, the statement back to the doctor was “No, he is not distressed.”

But he was sitting in a chair all night. He was sitting in a chair all night. And he never did that. He never did that. He was doing that because he couldn’t breathe.

But they didn’t understand what respiratory distress looked like. He wasn’t aggressive or distressed, therefore he wasn’t distressed. They couldn’t report properly to the medical staff.

Counsel Inquiry: And when you say he was sitting all day, it’s right, isn’t it, that he was in fact moved to that residents room that we discussed earlier?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And is it right that, rather than having his chair moved from the lounge, you saw from the photographs that he was in fact sitting in the chair that belonged to the previous resident –

Ms Judith Kilbee: Yes.

Counsel Inquiry: – who had Covid?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And do you know if that chair had been cleaned?

Ms Judith Kilbee: It was a fabric chair. It was a friend of mine’s mum who had died in that room. I knew it was the same chair. Dad’s bed was not his bed; it was the same bed as that lady had. And I don’t think anything had been deep cleaned. It may have been cleaned, but to my knowledge the curtains were never taken down.

I saw the personalised things, his photographs and things in the room, but I could clearly see that it wasn’t his own furniture.

Counsel Inquiry: And your dad became unwell again that day. He developed a rash; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: But by the time the doctor came the rash had gone?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And the doctor said not to call again unless his oxygen sats dropped below 75%?

Ms Judith Kilbee: Yes.

Counsel Inquiry: A sustained period?

Ms Judith Kilbee: Yes.

Counsel Inquiry: That was inconsistent with what you had been told previously.

Ms Judith Kilbee: It was inconsistent with what I’d been told, and I believe it was inconsistent with life.

Counsel Inquiry: And in fact the night before your dad died, he had sats of 85% and had been grunting all night; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: Is it right that you were told in the afternoon that your dad was nearing death?

Ms Judith Kilbee: Yes, I was told in the morning that he was grunting all night, which rang alarm bells for me, and then got a call later to say, “Your dad is end of life, it could be days – it could be hours, or it could be days.” And we jumped in the car immediately.

Counsel Inquiry: You live 90 minutes away –

Ms Judith Kilbee: Yes.

Counsel Inquiry: – from the home. Did you get there in time –

Ms Judith Kilbee: No.

Counsel Inquiry: – to see your dad?

Ms Judith Kilbee: We pulled over about 3 miles away because I got a phone call, and we didn’t get there in time, no.

Counsel Inquiry: One of your brothers was there with your dad; is that right?

Ms Judith Kilbee: Yes.

Counsel Inquiry: And he was in full PPE?

Ms Judith Kilbee: Yes.

Counsel Inquiry: But he was able to sit with your dad as he passed away?

Ms Judith Kilbee: Dad wasn’t conscious or aware at that point, but he was in the room with him, yes.

Counsel Inquiry: And is it right that you decided not to go into the room?

Ms Judith Kilbee: Yes, because our son drove us there. Our daughter came from her home and we were all outside. My brother was beckoning for me to come in, but knowing that the home was full of Covid, and Dad was already gone, I wasn’t prepared to go in. But my brother had signalled to me that he was – he said, “Come in, I’m keeping him warm for you.” He had wrapped a blanket around him to keep him warm for me getting there.

Counsel Inquiry: Are you okay to carry on?

Ms Judith Kilbee: Yes, I’m fine.

Counsel Inquiry: And in your statement you summarise the last 17 days of your dad’s life by saying that he had struggled for those days and died struggling to breathe without any oxygen, supportive fluids, or end-of-life medication to alleviate his distress?

Ms Judith Kilbee: Yes.

Counsel Inquiry: You also mention the last words your dad said to you on a video call. Do you remember what those were?

Ms Judith Kilbee: “When are you coming for me?”

Counsel Inquiry: You say those words will haunt you forever.

Ms Judith Kilbee: Yes.

Counsel Inquiry: Can you just tell us a little bit more about the impact that your dad’s death has had on you and your family?

Ms Judith Kilbee: It’s had a huge impact, which is why I am here. Because I want to prevent other people going through this. It had an impact in making me feel isolated from friends and colleagues as they got back to normal. It made my daughter suffer from real health anxiety, and very, very anxious about both of us as her parents because of seeing the loss of her granddad, to the point that we didn’t hug one another until we were all vaccinated. So – and, you know, we have lived with it. We are very aware of Covid and there’s still anxiety when we go into crowded places, but we’re all doing fine now and back to normal, but it has had a lasting impact on all of us.

Counsel Inquiry: And you talk about the funeral, and you say about that that there were no hugs, no collective memories of dad and his life, no celebration of a life well lived, but rather a complete absence of the usual support in the grieving process; is that right?

Ms Judith Kilbee: Yes, it was – no grandchildren could be there. There were only ten people allowed. He had four children, they had their other – their partners, so there were no grandchildren. Our son gave us a letter to put in the grave. I don’t know what that said. But that was all he had.

Counsel Inquiry: Thank you, and since your dad’s death the Scottish Covid Bereaved group has been a big support to you?

Ms Judith Kilbee: Hugely. Its – finding people on Facebook in the early days that actually got it, and understood what you were going through was a huge support. And I was part of the early group that started work on looking for inquiries and wanting to make that happen.

Ms Jung: Those are all the questions. I have. Thank you very much for coming to assist the Inquiry.

The Witness: Thank you.

Lady Hallett: Ms Kilbee, when you suggested things to the manager of the care home with your experience, how did they take it? Did they think that you were interfering? Did they think you were being helpful? What was the response that you got?

Ms Judith Kilbee: I tried to be very balanced in what I did, and I was very aware, being a nurse, that every time somebody phoned, it was pulling them away from what they were there to do. And as there were four of us and one sibling was ringing every day, I would email and message rather than phone. I was aware also of the hygiene of passing phones around.

Generally speaking, it was taken on board and seemed to be appreciated, but I’m not sure that it actually was, because there were statements made by the manager, things like “We’ll be out of the woods now, we’re on Day 14.” And I had to tell him that the average person, elderly person, died on day 18 to 21. And I was told “You’ve dashed my hopes, I thought we were out of it.”

So I think they were, at best, incredibly naive. The comment was made “We have a mild version here.”

Lady Hallett: From your experience – I mean, you’ve obviously got a great deal of experience within the – as manager of a care home group, have you managed to analyse whether this was – the lack of implementation of IPC measures was particular to this care home or this group of care homes, or have you worked out whether this was something that others in your group have found in other care homes?

The Witness: I believe that it probably was happening in many care homes. I think the absence of Care Inspectorate going in, GPs going in, and relatives going in, meant that there were no checks and balances. How did people know what was going on?

I kept close to it by looking at WhatsApp messages, by – there was a WhatsApp group for families, and I kept abreast of all the guidance and things, and when something needed flagging, I flagged it. But it was trying to get that balance right to not intrude.

I don’t think we know what was going on in care homes. The doors were shut. And we didn’t have access to see that. So I would imagine if – what was happening in my dad’s home was probably happening in varying degrees across the board.

Lady Hallett: But by this stage, as you say, we’d been seeing photographs of the impact of Covid and awful impact particularly on the more elderly. It’s extremely concerning, as obviously you were at the time, that care homes who catered for the most vulnerable weren’t conscious of what they should be doing.

The Witness: I agree.

Lady Hallett: Thank you very much indeed for your help.

The Witness: Thank you, my Lady.

Lady Hallett: And I’m sorry you went through what you went through. You obviously did your very best.

The Witness: I did. And that – I think that’s one of the hardest things that I did, my utmost. I guided and helped at every step of the way to try to get the right care for Dad and fulfil my promise to Mum that I would look after him.

Lady Hallett: You did your best.

The Witness: And I did my best. I know I did. Thank you.

Lady Hallett: Thank you very much indeed. We’ll break now and I shall return at 11.40.

(11.24 am)

(A short break)

(11.42 am)

Lady Hallett: Ms Jung.

Ms Jung: Thank you, my Lady. The next witness is Agnes McCusker.

Ms Agnes McCusker

MS AGNES MCCUSKER (sworn).

Lady Hallett: I don’t know how long you’ve been at the hearing, I hope we haven’t kept you waiting too long and that you’ve been looked after while you’ve been here.

The Witness: No, Lady Hallett, I was very glad to have been here to have watched the previous two participants and I feel it has helped.

Lady Hallett: Good. And you’ve heard what I’ve said to them, obviously. If you need a break, please just say but you may find it easier if we just plough on.

The Witness: Yeah.

Lady Hallett: But it’s up do you. All right?

The Witness: Okay, thank you.

Questions From Counsel to the Inquiry

Ms Jung: Can you start by giving us your full name, please.

Ms Agnes McCusker: Yes. My full name is Agnes McCusker.

Counsel Inquiry: Thank you. You’re quite softly spoken. Could I ask you just to try and keep your voice up please?

Ms Agnes McCusker: Okay.

Counsel Inquiry: It’s very important that your evidence is heard. If it helps, you can try and bring the microphone closer to you.

Ms Agnes McCusker: Okay.

Counsel Inquiry: Thank you.

Ms Agnes McCusker: Okay.

Counsel Inquiry: Thank you very much for coming today. You’ve come to tell us the story about your mother; is that right?

Ms Agnes McCusker: That’s correct.

Counsel Inquiry: Who died in a care home in Northern Ireland –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – on 12 April 2020?

Ms Agnes McCusker: Yes.

Counsel Inquiry: Was she about 94 years old at the time?

Ms Agnes McCusker: She was 94 when she went into the nursing home. She was – she would have been coming close to her 96th birthday.

Counsel Inquiry: And she’d been living in the care home for about two years?

Ms Agnes McCusker: Yes, that’s correct.

Counsel Inquiry: Prior to that did she live with your brother?

Ms Agnes McCusker: Yes, she did. She lived at home, she lived with my brother for – she had never been in or out of hospital so she had lived with him and various members of the family would call with her, yeah.

Counsel Inquiry: And was she very active and mobile?

Ms Agnes McCusker: Yes, well, all of her life she was. In recent years she wasn’t as active, but was able to do her housework, was able to make herself and my brother some lunch, dinner, tea for anyone who called. Did all her own cleaning, washing. I could have gone out on many a day and found her taking all the ornaments off some unit and cleaning them all. So she always kept herself busy. She never sat down until it was, you know, near time at night to go to bed.

Counsel Inquiry: And is it right that the reason she ended up going into a home is that she had a fall?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And then she struggled to get a care package in place?

Ms Agnes McCusker: She got a fall and had to go to the local hospital where it was diagnosed that she had a fracture of her pelvic bone, and although they said they couldn’t do a lot for it, they would keep her in for a week under observation, and they changed her medication, took her off quite a few medications that they said she never needed to be on, and they then said, when she was getting home, she would need the help of two people to help her initially, and she was visited then by the physiotherapist and occupational therapist and a social worker then became involved with us in terms of trying to get her a care package. She lived in a rural country area, and the care package at either side of her only stopped in the towns closest to them, and my mother lived in the middle.

So they tried for weeks to get a care package, and as time went on, we then had to make a decision with the nursing home if my mother was going to stay there, because the time had run out, in their words, for them to find a care package, and the home wanted to know if she was staying or if she was going home to her own house.

Counsel Inquiry: And did she suffer another fall against a radiator?

Ms Agnes McCusker: She suffered two more falls. One was on her 94th birthday. We went to the nursing home with a birthday cake and all the family turned up to find that she was sitting at the front door in a wheelchair waiting to be taken to hospital for an X-ray. So she was taken for an X-ray and thankfully hadn’t broken anything, and then subsequently returned back to the nursing home again where she was placed in nursing care.

The home had two separate parts. They had a nursing care section and a residential section for a small number of people at the back of the home.

Counsel Inquiry: When Covid came, was your mum living – your mother was living in the resident – in the nursing section?

Ms Agnes McCusker: Yes, she was.

Counsel Inquiry: And did you try and get some physiotherapy support for her to try and get her back on her feet?

Ms Agnes McCusker: Yes. Physiotherapists had called out at the home and we were never informed of when they called or who they spoke to. They would have probably needed a family member present, but we weren’t told when the physiotherapist was coming to the home, so while we did enquire, we were told that the physiotherapist would come in once every so often and take my mother for a short walk, and determine what her mobility issues were. And we are just led to believe that that did happen but we never saw it happening. But her mobility didn’t get better.

Counsel Inquiry: So she was unable to get back on her feet by the time the pandemic came; is that right?

Ms Agnes McCusker: Yes, she was initially walking with the help of a walking frame and then she had another fall, but the other fall occurred when they moved her from nursing into residential, and we had great issues with her going into residential because we were told that the people in residential had a certain amount of mobility, could, if they wanted, go in and make themselves a cup of tea in a small kitchen and that, in their opinion, my mother only needed one person to help her. But she couldn’t manage on her own. So being in residential, she wouldn’t have had the one person there with her.

And we tried to get the home themselves to move her back to nursing care and they said no. And then I approached the social worker, who initially put my mother – helped my mother to get the placement, and she said she would have a word in the nursing home and they said no, we think she’s fine in residential.

Counsel Inquiry: But she did move to nursing and that’s where she was –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – when the pandemic hit?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And did she have her own room?

Ms Agnes McCusker: She had her own room, yes.

Counsel Inquiry: And could you tell us about her hearing, please.

Ms Agnes McCusker: Yes. When my mother was a child, she developed a bad ear infection, and she knows – she remembers that her relatives, her parents took her to the local doctor at the time, and he told her that the infection, although she didn’t feel anything, had been there for some time and that it might affect her hearing as she got older, but she subsequently lost all hearing.

Counsel Inquiry: In that ear?

Ms Agnes McCusker: In that ear. And at one stage, when she was maybe in her seventies, they took her in and completely sealed the eardrum. So she had no hearing in that ear and she wore a hearing-aid in the other ear.

Counsel Inquiry: Is it right that she was very good at lipreading –

Ms Agnes McCusker: Excellent.

Counsel Inquiry: – (overspeaking) – that her hearing wasn’t very good?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And she relied on that to understand?

Ms Agnes McCusker: She did quite a bit of the time. She relied on looking face to face at us.

Counsel Inquiry: And just continuing with her health generally, she was never diagnosed with dementia but is it right that you suspected that she might have mild dementia?

Ms Agnes McCusker: Yes, we suspected that she had what I suppose we would have termed “older age” – possibly – “forgetfulness”, but it wasn’t noticeable when her own immediate family came in to see her. She noticed everything about us. She recognised things. She knew the grandchildren when they came in. She may not have remembered who was in three or four days before it, but she was alert and, you know, knew what she was eating. She knew things that were going on on a day-to-day basis and she recognised the staff.

Counsel Inquiry: So she knew the staff.

Ms Agnes McCusker: Yes.

Counsel Inquiry: She recognised her children. And is it right that she had seven –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – you’ve got – seven children?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And 13 grandchildren?

Ms Agnes McCusker: That’s right.

Counsel Inquiry: And although she did have some memory issues, when the children and grandchildren came to visit her –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – she recognised them?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And she was able to remember who had been to see her that day?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And she noticed small changes like haircuts and things?

Ms Agnes McCusker: Yes, small changes like haircuts. If you had something that she hadn’t seen before, a new outfit, something like that, she – and she loved – you know, she loved to get the newspaper brought in and she would read that in between visits of the daytime and the evening. And when you were in the next visit, she would tell you something that, you know, she had read out of the paper. So although at an advanced age, she was fairly with it.

Counsel Inquiry: And in the two years that she was in the care home before the pandemic hit, is it right that her many grandchildren and children visited her on a daily basis?

Ms Agnes McCusker: Possibly not on a daily basis, because most of them worked during the day. The ones who were available just dropped in and out. It was open visiting, so they didn’t have to wait to visiting hours. They dropped in and out for ten minutes, went around to see her, either in the sitting room or in her bedroom. And all seemed happy with her, you know. She would tell us who was in, and they were just delighted to see her.

Counsel Inquiry: And did your mother enjoy those visits?

Ms Agnes McCusker: She did. She did.

Counsel Inquiry: Your mother was quite a quiet person; is that right?

Ms Agnes McCusker: That’s right.

Counsel Inquiry: Was she able to ask staff for things that she needed?

Ms Agnes McCusker: She was certainly able but she possibly came from a generation where you don’t bother people if they’re very busy. The nursing staff have lots to do in here, and unless this is something really important, she wouldn’t have asked for help.

Counsel Inquiry: Whereas when her children came to visit, you or your siblings would ask –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – the nursing staff for things on behalf of your mother?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And is it right that she wasn’t the best at eating?

Ms Agnes McCusker: Yes, she –

Counsel Inquiry: In particular I think they served rice quite a lot at the care home, which –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – your mother wasn’t greatly fond of?

Ms Agnes McCusker: No.

Counsel Inquiry: And so is it right that you and your siblings would bring cooked food for your mum that you knew that she liked?

Ms Agnes McCusker: Yes. Not so much in terms of meals cooked, because I probably thought that wouldn’t have been allowed. Things like yoghurt, custard, things that we knew would boost either – her lack of eating during the day, drinks. Maybe a scone – instead of her having the rice at night which she didn’t like, it was made quite in advance and it wasn’t very appetising – we would bring her in.

We also brought in tea. We – she didn’t like the tea because – she told the staff initially when she went there she didn’t like a lot of milk in her tea but they would continue to pour in half a cup of milk and then top it up with tea. So she – then she would leave it sitting and wouldn’t drink it. So we brought in the teabags and made the tea in the home and bought it down to her and she absolutely took it. That only happened when her own family came in.

Counsel Inquiry: And was she fond of the tea that you brought in?

Ms Agnes McCusker: Yes, she was.

Counsel Inquiry: The home that your mother was in closed down fairly early, is it right? When the pandemic hit in March –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – you were informed that there would be no visits, and the home was closed?

Ms Agnes McCusker: It closed on 18 March and I was informed by a phone call, and on that particular day my brother, who lived with my mother, was on his way to the home. He went every day and he would always stop at the local shop and go in and get her, you know, fresh chilled drinks, yoghurts, maybe biscuits. The usual things. And bananas, things that he knew that if she didn’t eat the tea, he obviously wasn’t giving them to her before she had her meals; he was waiting to see had she eaten during the day and then he would give her. And the home rang me while I was collecting grandchildren at our local school, and I said, “But my brother is actually on his way and he will be there at any moment” and they said, “No, you have to phone him and tell him that he can’t come in.”

Now, this was minutes after the home officially closed to the public, and I said, “But could you let him in just to give in the things that he has bought?” And they said no.

Counsel Inquiry: Did they give you much more information than that?

Ms Agnes McCusker: Not at the time. They just said, “We’ll monitor it as it goes along. This hopefully won’t last.” And I immediately was concerned that if it went on any longer than two or three weeks even at that stage, that my mother would go downhill, because you know your own mother best, and you know what affects her. If she was resilient and outgoing and asking lots of questions, I probably wouldn’t have been so doubtful, but knowing her personality and knowing that she wasn’t a big eater, my fear was that without seeing a family member, any family member, or even just one, that she would deteriorate.

Counsel Inquiry: Was that a conversation you had with the home?

Ms Agnes McCusker: Well, I didn’t for the first week or so, because at this stage we all very blindly thought that we would get back in. We thought, as time goes on, surely someone will get in, because I’d never heard of a situation where a relative couldn’t visit someone, ongoing, and no word of when this – when they would change things. And initially they didn’t say anything about when they thought it would change, but we didn’t hear anything for weeks. We just rang the home.

Counsel Inquiry: But the home was closed for a while.

Ms Agnes McCusker: (Witness nodded).

Counsel Inquiry: Did you get much information from the home as to how your mother was doing?

Ms Agnes McCusker: No. We didn’t get any information, unless we rang different family members. So instead of us all ringing and asking the same questions, myself and my brother, who did live with my mother at home, were the usual two that rang. And then we would ring each other and see, you know, that … so they basically said, “Your mother is fine, she’s sitting in her room” or she’s, you know, and at one stage I asked “Is she eating?”, and the nurse, her reply was “Well, you know your mother is not a big eater anyway.”

And I said, “Yes, but with us coming in, we have helped her, to nourish her with healthy foods, not bringing her in junk or things like that but bringing her in healthy foods, and without us getting into the home we’re concerned.”

Counsel Inquiry: Did they suggest that you could bring some food in for her?

Ms Agnes McCusker: No.

Counsel Inquiry: If you and your siblings weren’t ringing the home, were you getting any information from them?

Ms Agnes McCusker: No.

Counsel Inquiry: Did you get any policy documents or –

Ms Agnes McCusker: We got no policy documents.

Counsel Inquiry: – any explanation as to what was going on?

Ms Agnes McCusker: No, absolutely none. Nothing in writing and nothing by phone.

Counsel Inquiry: Did you feel like you really understood how your mother was doing?

Ms Agnes McCusker: No, I spent every day wondering how she was doing, because the same response was given: should I phone during the day or should I phone at night? Which of these cases am I going to get more information? And it was virtually the same regardless of whether it was during the day. The staff would change over at 8 o’clock and the night staff would say, “Well, I’m only in so I really can’t tell you an awful lot”. But surely there’s a passing on of information from the daytime staff to the nighttime staff? And no, we weren’t given any information.

Counsel Inquiry: And is it right that the home had changed hands during this time –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – and so you presumed there was also a change of staff, but were you told about this, and who new staff were?

Ms Agnes McCusker: No, we weren’t told that there was a change of hands. We – I received a letter, I received a letter probably on behalf of the rest of the family, and I actually have the letter here. The letter changed from [redacted] –

Counsel Inquiry: We don’t –

Ms Agnes McCusker: – sorry, sorry.

The letter – the home changed hands and we weren’t told by the home, I got a letter to state this, and they had said in the letter that due to Covid restrictions, visitors would not be allowed into the home with the exceptions of end-of-life care.

Counsel Inquiry: I think you say in your statement also that with the change and with Covid happening, you noticed that there were more agency and bank staff; is that right?

Ms Agnes McCusker: Yes, and the only reason I know that, without being in the home and without being told that there will be other staff members, when I rang up, the names that I was given from the person answering the phone were not the names that we knew from when we were in visiting.

Counsel Inquiry: And therefore not the staff that your mother knew either?

Ms Agnes McCusker: Yes, that’s right.

Counsel Inquiry: And is it right that you were phoning the home every day to check on your mother?

Ms Agnes McCusker: Yeah.

Counsel Inquiry: And you were just always told “She’s in her room, she’s fine”?

Ms Agnes McCusker: Yeah.

Counsel Inquiry: One of the other concerns that you had was that her chair was in a place in her room which was quite some distance from the buzzer, which she would have to ring if she needed help.

Ms Agnes McCusker: Yes.

Counsel Inquiry: Do you know if that changed at all?

Ms Agnes McCusker: Well, the only reason I know that is because I was in the home on an occasion before Covid, and my mother, I think maybe she just hadn’t been feeling well one day, and they had set her out in her armchair. They normally would have taken her to the day room and sat with all the other residents. And on this particular day she was sitting at the chair at the window and the buzzer was on the opposite side of the room.

Now I’m assuming that in some instances a connection can be made to lengthen the buzzer to have it near her, but on the occasion that I was there, that wasn’t the case, and I feared that if she had wanted to call a nurse, she had no means of doing so.

Counsel Inquiry: Can I ask you about Mother’s Day. It was Sunday the 29?

Ms Agnes McCusker: Yes.

Counsel Inquiry: You asked if you could go and see her, and you were allowed to see her through her window; is that right?

Ms Agnes McCusker: That’s right.

Counsel Inquiry: So they brought her into her sitting room. And is it right that your mother was waving at you and trying to ask you to come into the room?

Ms Agnes McCusker: Yes, she was, yes.

Counsel Inquiry: You tried to get her to understand that you couldn’t, and why you couldn’t. Did she understand why you couldn’t come in and see her?

Ms Agnes McCusker: My firm belief is that one hundred per cent she didn’t understand. She was waving me to come in and I was having to shake my head – because there was a very top window open, with all the residents sitting underneath it. No member of staff came in and stood with her in the room to explain to her that I couldn’t come in.

She wouldn’t have understood Covid, but I subsequently gave her a Mother’s Day card and wrote on it that there was a bad flu and that I couldn’t come in, but I was hoping to be in soon and that – I had to leave it like that because I didn’t know, and I thought it sounded better to say – I knew she could read the card and I knew that it might give her hope if she felt that “At least someone is going to come in to see me soon.” So I subsequently gave in the items to the home.

Counsel Inquiry: And was anything suggested in terms of remote calling, Facetime, or anything like that, for you to be able to keep in touch with your mother?

Ms Agnes McCusker: No, no Facetiming or remote call. One nurse did suggest her bringing – again, a nurse that I had never known or heard tell of – bringing her phone down to my mother, and she suggested that maybe we could maybe Facetime. But we felt that my mother’s hearing wasn’t good enough and that seeing us on the phone and not being able to hear us, it would have been confusing for her. So we didn’t do it.

Counsel Inquiry: And was there also a suggestion, or was this the same occasion that you’ve just described, where a nurse had suggested using an iPad?

Ms Agnes McCusker: Yes, I think one of the staff did suggest using an iPad. My mother, given her age, was not familiar with technology. She would have used the phone quite a bit at home, and while she had her hearing aid in she was able to hear us quite well on the phone. But we didn’t get the opportunity to phone her. No one made the suggestion, and it just didn’t happen.

Counsel Inquiry: And you talk in your statement about the terrible impact that not having those visits from her family must have had on your mother. Can you tell us a little bit about that, please.

Ms Agnes McCusker: Well, I felt she would have felt abandoned. That’s the only way that I can view it. She would have been used to daily visits, during the day and at night, and if she needed something she knew that her family were there to back up what she maybe felt she couldn’t relate to the staff, or in some cases thought the staff were too busy. She would tell us on a couple of occasions her hearing aid broke down, and my brother took it off, had it fixed, bought it straight back. She would have done without the hearing aid maybe rather than ask someone in the home “Can you fix this for me or can you send this off?”

Without seeing familiar faces like ourselves, she didn’t sit generally in large group settings. She went up to bed every day during the day for an hour and got up again and then the staff would put her back to bed at night for us coming in. So we were able to sit in her room one to one.

She was a private person who probably didn’t like to speak in front of lots of other people in the room. So we had one to one with her. We sat beside her bed and just chatted away for any length of time. There was no cut-off time to go home, apart from obviously not overstaying past 9 o’clock. And I felt that when I phoned first of all and enquired about her, they said, “Your mother’s in her room”, I felt, is she in her room every day, sitting?

After a while, she’s bound to have had an impact on not seeing familiar faces, and faces of her family.

Counsel Inquiry: So you were worried about her day-to-day needs perhaps not being met –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – because she wasn’t one of those people who felt like she could actively ask for it, and you were worried about her degree of social contact?

Ms Agnes McCusker: Yes, she would have – she would have asked the nurse, who would have been in, maybe working with her in the room, she would have told her if she’d had pain or she would – but she wouldn’t have actively sought them in the home unless they were near her.

Counsel Inquiry: Yes. There was an occasion at the start of April where you spoke to the home, and you were told that your mother had a cough and you offered to go to the pharmacy and get the prescription and bring it to the home; is that right?

Ms Agnes McCusker: Yes, that’s right.

Counsel Inquiry: And when you turned up at the home, you were in full PPE?

Ms Agnes McCusker: (No audible answer)

Counsel Inquiry: Was the nurse who took the items from you in full PPE?

Ms Agnes McCusker: No, the nurse came to the door and she was one of the nurses who had been there for quite – she had been there certainly from when my mother went there, she came to the door and opened it and her first words were “You can’t come in.”

And I said, “No, I know that.”

And I gave her the medicine. And she was wearing her uniform. She wasn’t wearing a mask, and she had an apron, a plastic apron.

Counsel Inquiry: You say that, looking back, there was a lady in the care home who had dementia, and you think that perhaps your mother got Covid from her. Is it right that she – this lady with dementia, she would walk in and out of rooms, be wandering corridors?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And your view was that the staff weren’t effectively able to isolate her?

Ms Agnes McCusker: It seemed like they couldn’t isolate her, because she was constantly walking around, and my mother was a little bit – “afraid” maybe is the right word. And so I spoke to one of the staff at suppertime one night and expressed that my mother was a little bit concerned.

The lady wasn’t doing any harm, I have to add, but she was wandering in and out. And the person I spoke to said, “Well, you know she has dementia, there’s nothing we can do about it.”

And that was that.

Counsel Inquiry: And is it right that that lady passed away a week or two after your mother did?

Ms Agnes McCusker: Yes.

Counsel Inquiry: On 7 April 2020, the home rang to say that they suspected that your mother may have Covid; is that right?

Ms Agnes McCusker: Yes, they rang to say that my mother felt clammy and had a little bit of a cough.

Counsel Inquiry: They said that they were going to isolate her in her room?

Ms Agnes McCusker: Yes, that’s right.

Counsel Inquiry: And when you asked whether that meant that staff would still go in and out, they said “yes”.

Ms Agnes McCusker: Yes, they said the staff would go in and out but they wouldn’t be fully gowned.

Counsel Inquiry: So they said they would be wearing aprons and gloves, is that right, but not be fully covered up in PPE?

Ms Agnes McCusker: Yes.

Counsel Inquiry: Did they give you an explanation as to why they weren’t going –

Ms Agnes McCusker: No.

Counsel Inquiry: – to be wearing full PPE?

Ms Agnes McCusker: No. I’m assuming at that stage they didn’t have PPE.

Counsel Inquiry: And then a day or two later, they confirmed that your mother did in fact have Covid.

Ms Agnes McCusker: Yes.

Counsel Inquiry: A critical care team arrived, and they had her on oxygen. You spoke to the doctor; is that right?

Ms Agnes McCusker: Yes, the doctor rang me from the home, and that was the first indication that I knew that when the result came back that my mother indeed had Covid, and they said her oxygen levels were falling, and they would, I think it was called the critical care team, they would administer oxygen when needed and that they would come back to the home the following day, and I said at this point “Can I get in to see my mother? Can any of her children get in?”

And she said, “Well, the home are saying no, but I will go and ask.” And she did go and ask, and returned and said, “You – just her immediate family can come to the home in the evening time”, not that evening, but two evenings later, “and you can go outside into the courtyard and see your mother through the window.”

Counsel Inquiry: And is it right that the seven of you took it in turns to go up to the window and –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – and see your mother? And what was your mother’s response on seeing you?

Ms Agnes McCusker: Well, my mother – we were shocked, but my mother was wheeled over to near the window, a member of staff was fully covered in PPE in the room, and my mother’s bed was taken from that side of the room to the side where the window was and she had an oxygen mask on her, and the first person that went in, whichever one of my siblings first went in, from that until the last one went in, she smiled at each one and told the nurse their name.

Counsel Inquiry: And is it right that that was the last time you saw your mother?

Ms Agnes McCusker: Yes.

Counsel Inquiry: After that, you carried on ringing to see how she was doing.

Ms Agnes McCusker: I enquired again could I go in, and they said “no”. And I said, “Look, if I can get PPE myself, can I go in and go out to the courtyard and see her through the window as we previously had done?”

And they said, “No, there’s no visits allowed.”

Counsel Inquiry: Did they say why you couldn’t see her from the courtyard?

Ms Agnes McCusker: Didn’t give a reason but I think they were still using the, “It’s the Public Health, it’s not us” argument.

Counsel Inquiry: Was there any discussion with you or your siblings about palliative care or end-of-life care?

Ms Agnes McCusker: No, there was no discussion from – well, yes, when we heard that she had Covid, I suppose we were just like everyone else. You hope that she will recover from it. And as days went on, she stayed much the same. She didn’t go downhill in a matter of a couple of days. She rallied for a bit with low oxygen levels and then I rang the home one day to see had the acute care team returned to see how she was, and the person who answered the phone, the nursing person, said, “No, we can do that ourselves.”

And I said, “No, well, it’s just that the acute care team informed me that they would return to the home, and they would subsequently let me know how she was doing with her oxygen levels, how she looked, if in their opinion she was in danger.”

And they said, “Oh, no, no, we can do that.”

Counsel Inquiry: And is it right that you asked the home to let you know if things went downhill?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And you received a phone call early on Easter Sunday, which was 12 April –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – to say that your mother had passed away?

Ms Agnes McCusker: Yes. I had rang the home the previous night, on the Saturday night. Different members of my family had rang throughout Saturday, and everyone was told she’s sleeping, she’s okay, she’s sleeping, she’s a little bit clammy.

But as the day staff were about to change their shift, I rang before they changed their shift, and I said, “I would like to see my mother but I also want to be informed about how she is. I want to know if she’s getting worse, and I don’t mind at what time of the night someone rings me, but I will be available, and I would like to be able to come up to the home and see her.”

Counsel Inquiry: And –

Ms Agnes McCusker: And she assured me that there would be two members of staff on that night, and that I could ring them any time I wanted.

Counsel Inquiry: But you didn’t receive a call until –

Ms Agnes McCusker: No, I didn’t –

Counsel Inquiry: – the one –

Ms Agnes McCusker: – receive any call –

Counsel Inquiry: – saying that she had died?

Ms Agnes McCusker: I rang – the latest that I felt I wanted to ring was about 11 pm, and they said, “Oh your mother is sleeping, she’s the same as she was earlier on. She’s not eating, she’s just taking sips of water.”

And I suppose because I heard that she was only taking sips of water, I just made the assumption that she’s not very well. But no one told me that.

Counsel Inquiry: And when you received the call saying that she had passed, you asked whether anyone had been with her –

Ms Agnes McCusker: Yes.

Counsel Inquiry: – when she died?

Ms Agnes McCusker: Yes.

Counsel Inquiry: Had anyone been with her?

Ms Agnes McCusker: The nurse said no.

Counsel Inquiry: You asked if you could bring some clothes in for your mother after that?

Ms Agnes McCusker: Yes.

Counsel Inquiry: Were you able to do so?

Ms Agnes McCusker: No. We were told we weren’t allowed to bring in any clothes, and that we weren’t able to come up to the home at any time of the day, and that they wouldn’t be doing anything until the doctor had confirmed the death. So we just then subsequently contacted the funeral director.

Counsel Inquiry: And you give a very vivid description in your statement of going to the home.

Ms Agnes McCusker: (Witness nodded)

Counsel Inquiry: Not really understanding what was going on.

Ms Agnes McCusker: Yeah.

Counsel Inquiry: Not being given any information. And then the undertaker coming, spending some time in the home and then taking your mother away –

Ms Agnes McCusker: (Witness nodded)

Counsel Inquiry: – leaving all of you just standing there?

Ms Agnes McCusker: (Witness nodded)

Counsel Inquiry: The funeral took place the next day; is that right?

Ms Agnes McCusker: Yes, just going back to – the undertaker did go to the home, and he had to wait around for quite some time before he was admitted inside. When he got in himself – and two other people who I believe he had to take with him to get my mother ready, if “ready” is the right word – and we expected to be called in when they had done that. We expected to be called into the home to see our mother for the last time, and to say our goodbyes, but after –

Counsel Inquiry: Were you allowed to do that?

Ms Agnes McCusker: No, we weren’t allowed to do that.

Counsel Inquiry: Thank you. And you attended the funeral the next day, and you said in your statement that there was no wake, that you were all outside, just the children, spaced out?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And then she was taken to the church graveyard and wheeled in her coffin there. There was no mass –

Ms Agnes McCusker: No.

Counsel Inquiry: – no service, just prayers, with only ten of you allowed at the graveyard?

Ms Agnes McCusker: That’s right.

Counsel Inquiry: And afterwards you all had to go home to your own houses?

Ms Agnes McCusker: That’s right, yes. We obeyed the rules. We weren’t allowed – we were only allowed to have ten people, no grandchildren, no one else at the church. The priest said “You can only come over and stand.”

The immediate family have to stand spaced out around the grave. We did that. And no one else was present.

So, yes, there were just a few prayers said, and my mother’s coffin was lowered into the ground.

And then we went home to our own houses. And subsequently, I think the next day or two days later, the graveyards were closed.

Now, in Ireland and in Northern Ireland, funerals are different, and I believe they are different to what they are in England insofar as we have what’s called a three-day wake. We have the day that the person’s remains come home from a hospital or a nursing home. We have the next day where people call to offer support, to speak about the person who has passed away. And in our case my mother had a very long life, so a lot of people would have had stories to tell. Her grandchildren would have loved to have compared stories. They still do.

So, yes, we were denied the opportunity of doing that, of meeting up. Neighbours couldn’t come to the funeral and they couldn’t come to her house.

And I can sum it up, if I was trying to think of what my mother would have made of it, she would have been absolutely shocked to think that in her dying days and moments she never saw a family member. She was totally reliant on the limited number of staff that were there. And try as I might, I can’t imagine what went through her mind.

Thank you. And is it right that you went to the home a few weeks later to collect her belongings?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And you had some concerns about the degree to which IPC measures were adopted in the home and an example you give is that when you went to the home to collect her belongings, there were delivery people and workmen going in and out of the home without any PPE on; is that right?

Ms Agnes McCusker: Yes. Well, I had to ring the home myself to ask could I come up and collect my mother’s belongings? I didn’t get a phone call about that. And they said, “We have to keep them here between a week and six weeks. That’s the rules for Covid.”

Counsel Inquiry: And you –

Ms Agnes McCusker: And I said, “That’s fine.” I’m sorry.

Counsel Inquiry: I’m sorry to interrupt. You also mention that the home was short staffed even before the pandemic?

Ms Agnes McCusker: Yes.

Counsel Inquiry: And you can imagine that it only would have got worse during the pandemic.

Ms Agnes McCusker: Yes, that’s true.

Counsel Inquiry: And is it right that you also don’t think that the home had much PPE?

Ms Agnes McCusker: Well, they didn’t have any PPE until after my mother died. A local group were able to ask for funding, and the local group went round five or six nursing homes in the general area of where my mother was in the city of Armagh itself, they went round and gave out PPE.

Staffing, from the day and hour my mother went in, was an issue. Lack of. During the day it wasn’t too bad, but from 8 o’clock at night until morning time, there were times when there was one assistant, and on a night when we could breathe a sigh of relief going through the door, there were two care assistants, and what it meant when my mother needed the toilet, it became an issue to the extent that we almost – our blood pressure and our anxiety levels rose as we went through the door, because we knew as soon as we got in, our mother would ask us “I need to go to the toilet”, we couldn’t find – and she was in bed at this stage, so she needed an assistant or a nurse to get her up and help her out.

We spoke to the manager about it. We spoke to the social worker about it. The social worker at first couldn’t believe that I was telling her there was one assistant at night, and I don’t know if anything changed, but it certainly couldn’t have changed for the better.

Counsel Inquiry: Thank you. And just finally, obviously the home was having to follow guidance and was struggling with workforce, staff numbers, and things like that, but do you think that the home did enough to care for your mother and to take into consideration your family’s needs?

Ms Agnes McCusker: Well, if they were to say they were following guidelines, I don’t understand any guideline that keeps a family member out from a dying parent in their last hours. If they didn’t get in during Covid, that was bad enough, but end-of-life care, to me, is a human right. It’s a right to be able to see your parent, siblings, whoever would be in a nursing home, and given the context of where my mother was placed in the home, I never needed to go near another resident. I could have gone in, round the back, in through the courtyard, and my mother’s room was facing out, which is the place we went to see her when they told us she had Covid.

So why keep people out? We’re not going in to have parties; we’re not going in to have fun. We’re going in to see our dying relative. Why keep them out? Why were the inspections not carried out? Why was someone not going into the home and saying, “You need to do this”? The RQIA weren’t in, the Public Health Authority weren’t in, I don’t know if my mother’s room was cleaned. I don’t know anything about what happened from 18 March until 12 April.

Counsel Inquiry: Thank you. We’ve covered quite a lot but is there anything in particular that you would like to say?

Ms Agnes McCusker: No, I think we’ve covered most of the issues.

Ms Jung: Thank you.

Thank you very much for coming to assist the Inquiry.

Lady Hallett: Thank you very much indeed for your help. I don’t know – I can’t remember if you were at the meeting when I first went to Northern Ireland to consult about the terms of reference.

The Witness: I don’t think I was.

Lady Hallett: But one of the very first things I learned from going around the country from bereaved family members was how different bereavement is during the time of the pandemic, and you’re talking then about the three-day wake that you would normally have. I mean, as I understand it, the three-day wake, the idea is that you get your grief out.

Ms Agnes McCusker: Yes.

Lady Hallett: That you share the joy of the person’s life and that you do it as group of loving family and friends.

Ms Agnes McCusker: That’s right, Lady Hallett. Yes, that’s right.

Lady Hallett: Well, I very much understood that point that people wished to make and I’m really grateful to you for your help. I appreciate it can’t have been easy.

The Witness: No.

Lady Hallett: Thank you very much indeed.

The Witness: Thank you, Lady Hallett. Thank you.

And thank you.

Lady Hallett: Right, we will sit later before lunch to try to finish the next witness before we break.

Ms Cecil: I’m grateful, I’ll just pause for a moment, my Lady.

Thank you. If may call Helen Hough, who is just making her way in now.

Lady Hallett: Don’t trip over the step.

The Witness: I’m recovering from a broken leg.

Lady Hallett: Oh, no –

The Witness: I’ve got a broken foot and a broken knee, but we’re fine.

Lady Hallett: Are you okay to stand to take the oath?

The Witness: Yes.

Lady Hallett: Right.

Ms Helen Hough

MS HELEN HOUGH (sworn).

Lady Hallett: I’m sorry you’re the last witness of the morning, but I promise you, we’ll sit on into the lunch hour so that you can complete your evidence before we break.

The Witness: Okay, thank you.

Lady Hallett: Thank you very much for waiting.

The Witness: Thank you.

Questions From Counsel to the Inquiry

Ms Cecil: Thank you, Ms Hough.

You’ve helpfully provided a witness statement to the Inquiry. For those following, that’s INQ000587639. But you are here today to speak about your experiences of the pandemic in owning and managing a care home and your personal experiences involving your husband, Vernon; is that right?

Ms Helen Hough: I am, thank you.

Counsel Inquiry: At the time the pandemic began, in January of 2020, you and your husband owned a nursing home in Wrexham; is that the position?

Ms Helen Hough: Yes.

Counsel Inquiry: You have a background in nursing yourself?

Ms Helen Hough: Yes.

Counsel Inquiry: In fact you come from a family tradition of nurses –

Ms Helen Hough: We do – I do.

Counsel Inquiry: – your mum, your sister and you?

Ms Helen Hough: Yes.

Counsel Inquiry: You purchased the property that was to become the nursing home back in 1987, and over time that grew in size?

Ms Helen Hough: Yes.

Counsel Inquiry: It began with 22 residents and subsequently up to 40.

Ms Helen Hough: Yes.

Counsel Inquiry: And there was a nursery as well in the grounds at one stage?

Ms Helen Hough: Yes.

Counsel Inquiry: Your sister ran that?

Ms Helen Hough: She did.

Counsel Inquiry: It was a family affair, effectively.

Ms Helen Hough: (Witness nodded)

Counsel Inquiry: You and your family have always lived on site?

Ms Helen Hough: Yes.

Counsel Inquiry: So it was both your home but also your business?

Ms Helen Hough: Yes.

Counsel Inquiry: You worked within the home initially as well, doing far more nursing; is that the position?

Ms Helen Hough: Yes.

Counsel Inquiry: Then over time what happened?

Ms Helen Hough: So I – when we first opened I was there full time. My sister helped out working night shift and my mum would do a few shifts. But over time I took on more staff because the home became more, for want of a better word, bureaucratic. So there was a lot more paperwork to be done as an owner/manager as there was in previous years. So I went down to about three shifts a week, and the rest of the time was in the office.

Counsel Inquiry: Just to get a sense of the size of the home in terms of staffing, you had 12 trained nursing staff members?

Ms Helen Hough: Yes.

Counsel Inquiry: You had 35 carers?

Ms Helen Hough: Yes.

Counsel Inquiry: Which would increase up to 45 during holiday periods?

Ms Helen Hough: Yes.

Counsel Inquiry: Five domestic staff?

Ms Helen Hough: Yes.

Counsel Inquiry: Two activity coordinators –

Ms Helen Hough: Yes.

Counsel Inquiry: – for the residents?

Ms Helen Hough: Yes.

Counsel Inquiry: Two maintenance staff?

Ms Helen Hough: Yes.

Counsel Inquiry: Five kitchen staff?

Ms Helen Hough: Yes.

Counsel Inquiry: An administrator to help you with your duties –

Ms Helen Hough: Yes.

Counsel Inquiry: – in terms of management?

Ms Helen Hough: Yes.

Counsel Inquiry: And then also your husband Vernon took on a full-time role within the home too?

Ms Helen Hough: Yes.

Counsel Inquiry: He undertook maintenance but also a lot of care in relation to the residents –

Ms Helen Hough: He did.

Counsel Inquiry: – in terms of doing different chores and different things – (overspeaking) –

Ms Helen Hough: Entertaining patients, yes.

Counsel Inquiry: So that’s really the position as at the start of the pandemic –

Ms Helen Hough: Yes.

Counsel Inquiry: – in terms of the home.

Just touching on how you viewed those patients and residents within the home, what would it you – how would you describe them? To you?

Ms Helen Hough: Well, we were a nursing home, so we had very poorly patients. So on our ground floor, it was – we had quite poorly patients. So it was a bit like very intensive nursing. Upstairs, there were less intensive nursing. And we did have a few patients that were classed as residential patients. In other words, they could self care but they were mainly there as a partner to somebody who’d, say, had a severe stroke and their husband’s – came in with them, or they came in because they were quite local and they wanted to come to us.

I didn’t have many residential patients; they were mainly – I mean, residential – classed as residential, but they – we categorised them all as patients, but some, about four or five, were self caring. The rest were all quite heavy nursing patients.

And they were just like our extended family, really.

Counsel Inquiry: In terms of Vernon’s role in relation to your patients, can you just give an insight into what he would do?

Ms Helen Hough: His role – before the pandemic, his role was – he did all the general maintenance there and he did the decorating and painted. The gardens in particular. His father used to do the gardens when he was alive as well. And then he’d go out and do all the shopping for the care. We had deliveries but there were other things that we would get in here, there and everywhere for – specialised things that patients wanted.

But he would also see to them having the patients have their newspapers. And if they wanted anything in particular, if they fancied fish and chips, he’d go and get it. But he was – he did a lot of running around outside of the home as well as the maintenance inside the home.

Counsel Inquiry: And I understand in relation to your patients within the home, you’d also take them out on day trips and things like that when possible?

Ms Helen Hough: Yes. So we – he would take them up to the garden, to the polytunnel where they would do lots of planting with the patients. Those who were interested in gardening. But if we arranged day trips we often arranged, like, trips on the canal in Llangollen and things, and then he would take them in the van and he would accompany the carers who had taken the patients to bring them back and arrange, to ferry people back in, too. He would also pick up day patients from their home and bring them back in. And occasionally he would take the odd patient up to the pub next door in a wheelchair, if they fancied a drink in the pub, or wherever, but we were there all the time.

Counsel Inquiry: Indeed.

I’m now going to turn, if I may, to the outset of the pandemic and you explain within your witness statement that you start to become aware of what is going on in China initially.

Ms Helen Hough: Yes, I read, I was working a night shift and I was reading on my phone from The Lancet that there was a possible SARS outbreak again in China, coming our way, which at the time, they were saying that it was like a bird flu and it wasn’t pass-able to humans, which is the first time they said that as well.

So we were aware that something was going on in China back really in November of 1919 – not 1919, 2019. And I became aware of – I was starting to pick up articles about this, because I was a bit concerned that it was going to start coming across to Britain at some point. But we were still – we weren’t fully aware of it coming to us, really, until about the February of 2020, and we were away at the time, and my son was going skiing and he was concerned that he wasn’t going to get back to Britain, because Italy and Spain and places had already began to lock down. China had already locked down by this time.

Counsel Inquiry: If I can just pause you there really, just to come back to the home itself.

Ms Helen Hough: Yes.

Counsel Inquiry: It was at that point that you describe that you began –

Ms Helen Hough: I began getting –

Counsel Inquiry: – stockpiling your own PPE.

Ms Helen Hough: I began stockpiling then PPE. In the February, I thought, well, we’re going to start with another pandemic here.

Counsel Inquiry: And it’s right to say that you’ve had some experience –

Ms Helen Hough: Yes.

Counsel Inquiry: – in terms of infection control measures previously in relation to other outbreaks –

Ms Helen Hough: Yes.

Counsel Inquiry: – whether it’s norovirus, seasonal flu, for example, which is obviously – (overspeaking) –

Ms Helen Hough: And swine flu a few years before, yeah.

Counsel Inquiry: And swine flu.

Ms Helen Hough: Yeah.

Counsel Inquiry: Now, in terms of official guidance and contact with local authorities and other organisations, in that respect you had a meeting, do you recall, on 10 March?

Ms Helen Hough: I do.

Counsel Inquiry: So not long after, you became more aware of it in late February –

Ms Helen Hough: Yes.

Counsel Inquiry: – and there was a meeting between you, the local authority, other care home providers –

Ms Helen Hough: Yes.

Counsel Inquiry: – and GP cluster leads?

Ms Helen Hough: Yes.

Counsel Inquiry: So effectively a health and adult social care meeting. And in relation to that meeting that covered broad issues; is that right –

Ms Helen Hough: Yes.

Counsel Inquiry: – in relation to recognising potential symptoms of Covid-19?

Ms Helen Hough: Yes.

Counsel Inquiry: And reducing any cross infection, managing any potential outbreak within the home, and infection and prevention control.

And I just want to bring up, if I may, paragraph 19 of your witness statement.

Ms Helen Hough: Yes.

Counsel Inquiry: Because within your statement you set out that you made a note at the time –

Ms Helen Hough: Yes.

Counsel Inquiry: – of upsetting messages, as you described them, that you heard at that meeting. And I just want to go through them if I may, with you briefly now.

This is what you came away with: that, firstly, older people would not be ventilated?

Ms Helen Hough: No.

Counsel Inquiry: Was that said in the meeting?

Ms Helen Hough: Yes. It was that older people would not be considered for ventilation, was their terms, yeah.

Counsel Inquiry: But second, and indeed you go on, and it goes on then to specify:

“The care home population will not be considered for ventilation …”

Ms Helen Hough: Yeah.

Counsel Inquiry: And is this your note here, “in fact there were virtually no admissions from care homes into hospitals at all”?

Ms Helen Hough: Afterwards, yeah.

Counsel Inquiry: That’s after that point?

Ms Helen Hough: Yeah.

Counsel Inquiry: That your experience of it – (overspeaking) – pandemic?

Ms Helen Hough: Yeah.

Counsel Inquiry: And that then, in terms of access to medical care:

“One GP will be allocated per care home” –

Ms Helen Hough: Yes.

Counsel Inquiry: – “with most consultations conducted over the [telephone] …”

Ms Helen Hough: Yeah.

Counsel Inquiry: And indeed, in – your experience was that, following on from that, no general practitioner attended the care home –

Ms Helen Hough: From 23 March –

Counsel Inquiry: – in person? Until well into 2021?

Ms Helen Hough: Yeah.

Counsel Inquiry: So it follows from that that there were remote or video –

Ms Helen Hough: Yes.

Counsel Inquiry: – or telephone consultations?

Ms Helen Hough: Yes. Which unfortunately wasn’t good in my care home because of the wi-fi coverage. It was quite poor.

Counsel Inquiry: We’re going to come on to that later in a little bit more detail, but essentially these were the messages that were being sent right at the outset of the pandemic –

Ms Helen Hough: Yes.

Counsel Inquiry: – to you as a care home manager?

Ms Helen Hough: Yeah.

Counsel Inquiry: Now, around this time also, there were policies being instituted in relation to the discharge of patients from hospitals into care homes?

Ms Helen Hough: Yeah.

Counsel Inquiry: And you set out within your statement your experiences in that regard?

Ms Helen Hough: Yes.

Counsel Inquiry: Now, you say that was not something that was unusual in and of itself?

Ms Helen Hough: No.

Counsel Inquiry: In that there were obviously established procedures in place for the discharge of hospital residents into your care home and had been for many years?

Ms Helen Hough: Yes.

Counsel Inquiry: It was effectively a regular occurrence?

Ms Helen Hough: Yes.

Counsel Inquiry: If you had a bed – and you’d be in contact with that hospital – (overspeaking) –

Ms Helen Hough: It was weekly.

Counsel Inquiry: Exactly, to see if you had any bed space available?

Ms Helen Hough: Yeah.

Counsel Inquiry: So from around early March, again, you were contacted then about potential free bed spaces –

Ms Helen Hough: Yeah.

Counsel Inquiry: – which would enable individuals to be discharged from hospital and free up the hospitals beds.

In that regard, there was no mandatory or routine testing at that stage. What was your response?

Ms Helen Hough: My response was to the local health board, was the only way I would accept any patients from the hospital would be if they came with a written negative Covid swab. And I wanted it in writing that it was – it had come as a negative Covid swab.

And the response I got was that that may not be possible to do that, and I said, “Well, they don’t come.”

And their response was that they were going to report me to CIW for bed blocking.

Counsel Inquiry: Were you reported?

Ms Helen Hough: I don’t know. I said, “You can report me to who you want, but nobody is setting foot over my nursing home without a negative Covid swab.”

And they didn’t.

Counsel Inquiry: And did that remain the position?

Ms Helen Hough: The whole time.

Counsel Inquiry: And so, in terms of the first patients from hospitals that would have been accepted into your care home, when roughly would that have been? Can you recall?

Ms Helen Hough: When was what, sorry?

Counsel Inquiry: – (overspeaking) – with a negative test?

Ms Helen Hough: Oh, that happened quite soon afterwards, the – when we got patients coming in from there. I would say probably, again, March time, when we were first having patients coming in. Quite poorly patients by this time. They were having negative swabs. It was written down that they were – tested negative for Covid before they came to me.

Counsel Inquiry: And was that before the rollout across Wales of the mandatory testing prior to hospital discharge; do you know?

Ms Helen Hough: I don’t know. I don’t know if it was before then. It probably was, because it was quite early on that – as soon as we knew – I’ve got a friend who works in a hospital, and so we were saying – you know, she was on a ward where she was treating patients with Covid, so I knew that I didn’t want anybody from hospital that tested positive with Covid.

Counsel Inquiry: And in your statement you say that you were concerned –

Ms Helen Hough: Yeah.

Counsel Inquiry: – about the pressure being applied –

Ms Helen Hough: I was.

Counsel Inquiry: – on both you and other care homes?

Ms Helen Hough: Yeah.

Counsel Inquiry: What enabled you to say no?

Ms Helen Hough: Because I was an owner. I was an owner and a manager. And I did say to public – to the local health board, “I hope you’re not putting pressure on other homes like you are with me, on managers, because managers may not be able to say ‘no we’re not going to take people with – or we’re not going to take people, only with a negative swab’.”

If you’ve got a homeowner that’s got eight empty beds, then the owner may say “We want them filled” regardless, whereas I had the choice to say, “no they’re not coming into my home.”

I’m not sure that every manager had that choice. I don’t know, but I did say that to public health – to the local health board, that I hoped they weren’t putting that pressure on them.

Counsel Inquiry: Now, I want to turn now to the subject of infection prevention and control guidance. That was also something that was touched on at that 10 March meeting.

Ms Helen Hough: Yeah.

Counsel Inquiry: But just dealing with how that guidance developed and, firstly, how realistic it was. Part – aspects of it were social distancing, as you set out.

Ms Helen Hough: Yes.

Counsel Inquiry: You were advised that you had to remain 2 metres apart.

Ms Helen Hough: Yes.

Counsel Inquiry: Was that realistic in your care home, in your nursing home?

Ms Helen Hough: No. No, it’s impossible. To begin with, you can’t move anybody on your own. You can’t nurse a patient without touching them. But also, you need two carers. If you are moving a patient safely, you need at least two carers with every patient to be able to move them. And they’re going to be less than 2 metres apart.

I mean, we were advised at one time that their recreational room, which was outside, their chairs should be situated 2 metres apart outside. And then, when they came in the home, they’re in the same room, handling the same patient. The guidance was – it was nonsensical, really.

Counsel Inquiry: And you explain that much of the IPC measures that were put in place within your nursing home was a consequence, effectively, of your previous experience –

Ms Helen Hough: Yes.

Counsel Inquiry: – and training –

Ms Helen Hough: Yes.

Counsel Inquiry: – in relation to infection control?

Ms Helen Hough: Yes.

Counsel Inquiry: Just picking up on one of the practical consequences of that within the home, you split the nursing home into three separate sections –

Ms Helen Hough: Yeah.

Counsel Inquiry: – and areas; is that right?

Ms Helen Hough: Yes, three zones.

Counsel Inquiry: And you had a red zone?

Ms Helen Hough: Yeah.

Counsel Inquiry: And a green zone?

Ms Helen Hough: Yeah.

Counsel Inquiry: Or they were designated red and green?

Ms Helen Hough: Yes.

Counsel Inquiry: Red zones were where people with any symptoms of Covid or suspected Covid were moved to?

Ms Helen Hough: Yes.

Counsel Inquiry: And then the green zones were obviously business as normal, effectively, within the care home?

Ms Helen Hough: Yes.

Counsel Inquiry: In terms of the staffing of those areas, were there designated staff that would only work in the red zones –

Ms Helen Hough: Yes.

Counsel Inquiry: – and only work in the green zones?

Ms Helen Hough: Yes.

Counsel Inquiry: And I understand it was only you and Vernon that would cross between them?

Ms Helen Hough: Yes.

Counsel Inquiry: And that was because you had the capacity to change your clothes effectively –

Ms Helen Hough: Yes.

Counsel Inquiry: – and shower and take those precautions.

With regard to the red zone, after a patient was moved out of a room and into the red zone, what did you do with their room?

Ms Helen Hough: Their room, if they – I mean, we didn’t have testing then, so if they had symptoms – during Covid, while – when we did have testing, if they were in that area, then they would – you know, they didn’t always pass away with Covid. So some patients didn’t. But before we had the testing, if they developed any sort of symptoms of what we thought were Covid then they stayed in that red zone until those symptoms were well and truly past. And that could be for up to a month.

But I did have poorly patients obviously that died in that red zone.

My problem was that patients soon became aware of this area, and they didn’t really want to move their own bedrooms. It’s their home. They didn’t want to move to that area because they also realised patients weren’t coming from that area. So they were a bit reluctant to move into that zone.

Counsel Inquiry: And you explain that became particularly difficult –

Ms Helen Hough: Yeah.

Counsel Inquiry: – after testing was instituted and people were asymptomatic?

Ms Helen Hough: Exactly.

Counsel Inquiry: – (overspeaking) – presenting with no symptoms?

Ms Helen Hough: Exactly. Because we realised after testing that we could have had – potentially had patients in the green zone that were Covid positive.

Counsel Inquiry: And in terms of isolating them in their own rooms, did that pose practical challenges?

Ms Helen Hough: Definitely.

Counsel Inquiry: What were those, just – (overspeaking) –

Ms Helen Hough: Because everything – where the patients were in communal areas you needed less staff to observe what the patients were doing. Most patients are encouraged to get up most days. There are obviously poorly patients that couldn’t but most patients were in communal rooms. When we decided that it was safer to keep them in their individual rooms, it took a lot more staff to be able to take their feeds in there, to feed certain patients, to take their food. So it had to be done – once you’d moved from one area then sometimes we’d have to take some staff off there to go to another area to do all the feeds. You could be doing 12 to 15 feeds for patients who couldn’t feed themselves. So it took a lot more staff rather than being in a communal dining room.

So staffing wise it posed a massive problem.

Counsel Inquiry: Indeed, and we’re going to come on to the staffing difficulties that you experienced in due course.

Ms Helen Hough: Yeah.

Counsel Inquiry: But just turning, then, to staff and their facilities, I understand you also had a dirty changing room?

Ms Helen Hough: Yes.

Counsel Inquiry: For them to be able to change in and out of their clothes?

Ms Helen Hough: Yes.

Counsel Inquiry: And then their clothes would be laundered at the nursing home –

Ms Helen Hough: Yes.

Counsel Inquiry: – so they would remain there.

In terms of ventilation, within the – within your nursing home, you explain that the nature of the building posed its own challenges in that regard.

Ms Helen Hough: Yeah.

Counsel Inquiry: In the first wave, it was relatively straightforward because you could have the windows open –

Ms Helen Hough: That’s right.

Counsel Inquiry: – and doors open, it was spring, summer. But as it got to winter, was that possible?

Ms Helen Hough: We did ventilate the rooms as best we could, but no, you can’t have the windows wide open when it’s very cold outside because of the risk of them getting hypothermia. So it was very difficult to ventilate rooms.

Once a patient had left a room, we could deep-cleanse the room and ventilate it when the patient had left the room, but while they were in, ventilation was difficult.

Counsel Inquiry: I really want to just ask you about access to suitable personal protective equipment –

Ms Helen Hough: Yeah.

Counsel Inquiry: – PPE, as we’ve been referring to it, for both the staff that you employed and also your residents. You explain that at the beginning you began to stockpile it.

Ms Helen Hough: Yes.

Counsel Inquiry: You ordinarily have some –

Ms Helen Hough: Yes.

Counsel Inquiry: – but not significant quantities.

Ms Helen Hough: No.

Counsel Inquiry: Is it right that within the nursing home itself, you got through a huge amount of PPE because of the nature of the services that you were providing?

Ms Helen Hough: Yes.

Counsel Inquiry: In terms of your carers, they were all trained by the nursing staff –

Ms Helen Hough: Yes.

Counsel Inquiry: – and you in relation to how to –

Ms Helen Hough: Yes.

Counsel Inquiry: – how to use that PPE appropriately and correctly?

Ms Helen Hough: Yes.

Counsel Inquiry: With regard to supplies, you encountered difficulties yourself from your ordinary suppliers; is that right?

Ms Helen Hough: I did.

Counsel Inquiry: And what happened there?

Ms Helen Hough: They – when we – after the lockdown, they told us that they couldn’t supply to us anymore because they were only supplying Public Health England. And they did – fortunately, I knew the owner of the company because when he was first setting up in business he came to me personally and I supported his business throughout, and I spoke to him directly, and he did agree to send us PPE, but he said, “But I can’t do this for other homes.” I don’t know what happened in other homes but that’s how I got mine. Only by knowing the owner of the company.

Counsel Inquiry: And even with that supply, you were still significantly short?

Ms Helen Hough: Oh, I bought a lot of things off Amazon.

Counsel Inquiry: Yes, Amazon and DIY shops?

Ms Helen Hough: Yes.

Counsel Inquiry: And local DIY stores. You were also assisted by the local community, as I understand it –

Ms Helen Hough: Yes.

Counsel Inquiry: – in terms of them making thicker gowns, masks?

Ms Helen Hough: Yes.

Counsel Inquiry: Theatre gowns, effectively –

Ms Helen Hough: Yes.

Counsel Inquiry: – (overspeaking) – coverings –

Ms Helen Hough: Yes.

Counsel Inquiry: – and other aspects that you sought and they had gratefully supplied?

Ms Helen Hough: Yes, our – the village – the people who were from the village, and also carers’ relatives made us full masks with a filter in between them, and the operation gowns from duvet covers that – old duvet covers that I supplied. Yeah.

Counsel Inquiry: You explain that in terms of the local authority, they provided the some surgical masks, plastic aprons and gloves, but also on one occasion provided goggles.

Ms Helen Hough: Yes.

Counsel Inquiry: And the Inquiry has heard already in earlier modules and, indeed, from experts, in relation to the fit not always being appropriate –

Ms Helen Hough: No.

Counsel Inquiry: – for the workforce?

Ms Helen Hough: Yeah.

Counsel Inquiry: Did you find that those goggles were, similarly, not fit for purpose in relation to your female staff?

Ms Helen Hough: Yes. The first lot of goggles we were given, they were in a box. There were 600 pairs and they didn’t fit the staff at all. So Vernon drilled every set of goggles, so we could thread elastic through them at the back to keep them tight to their eyes, and fit their head. So we drilled every single one of them. And then it was either a month or six weeks later we were told that they were inappropriate, they didn’t work, so we were to throw them all away.

Counsel Inquiry: And then you also, separately to that, had visors made by a local factory?

Ms Helen Hough: A local factory made us visors, yes.

Counsel Inquiry: In terms of costs, you touch on this in your statement. You explain that the cost of PPE effectively skyrocketed?

Ms Helen Hough: Absolutely, yes. A box of gloves went from being a pound for a hundred to being ten pounds, or more.

Counsel Inquiry: Thank you.

I’m dealing now, if I may, with testing for your staff and for your residents. Again, you were given details of testing arrangements initially on that 10 March meeting?

Ms Helen Hough: Yeah.

Counsel Inquiry: That it would be managed by Public Health Wales on a telephone booking appointment system?

Ms Helen Hough: (Witness nodded)

Counsel Inquiry: And that, in terms of that, you were having to send your staff to testing centres initially –

Ms Helen Hough: (Witness nodded)

Counsel Inquiry: – but soon after that, tests were withdrawn –

Ms Helen Hough: Yes.

Counsel Inquiry: – because they were being prioritised at the time, effectively, for the hospitals?

Ms Helen Hough: Well, I didn’t – we didn’t know why they were closed down. So we had drive through testing centres quite local to us, and then all of a sudden they closed. So we were having to send staff who were symptomatic to test centres, because they would only test people who were symptomatic. One member – they were having to go into England, and one member of staff drove to Manchester Airport to get tested because there were no test facilities in Wales. And if you looked for it online where you could get a test, it would say every single day “no tests available”.

Counsel Inquiry: I want to just deal, if I may, with a very practical difficulty that arose in relation to your patients –

Ms Helen Hough: Yeah.

Counsel Inquiry: – when you had considered that they needed a test, you explained the process as was set out by Public Health Wales that you’d contact the GP –

Ms Helen Hough: Yes.

Counsel Inquiry: – to arrange that and then that in due course a testing kit and swab would be brought to you.

Ms Helen Hough: Yeah.

Counsel Inquiry: But that typically took 48 hours –

Ms Helen Hough: Yeah.

Counsel Inquiry: – to arrive. What was the real life consequence of that?

Ms Helen Hough: Well, if you’d got a very poorly patient, and especially if it’s on a weekend, it would take longer on a weekend, but if you got somebody who was poorly, then usually by the time Public Health Wales or the local health board brought one to the home, then they were dead, because, you know, it just took too long to get them. And I did ask on one occasion, could I use that swab to test another patient, and they said to me, “no, they’re all – they’ve all got their names written on them” and I said, “What happens it to now?” And they said, “They’ll be disposed of”.

Counsel Inquiry: So it simply couldn’t be used?

Ms Helen Hough: No it couldn’t be used for anybody else.

Counsel Inquiry: Now, in relation to testing you wrote to various politicians –

Ms Helen Hough: Yeah.

Counsel Inquiry: – and Local Assembly members on a number of occasions –

Ms Helen Hough: Yeah.

Counsel Inquiry: – urging, effectively, wider-scale testing, testing to be extended to all care home residents and staff.

Ms Helen Hough: Yeah.

Counsel Inquiry: I just want to bring up, if I may, one of the emails that you sent on 4 May.

It’s INQ000598472.

This is one of the emails, as I say, that you sent, and this is your response in due course. This is dated 4 May.

Ms Helen Hough: Mm.

Counsel Inquiry: You set out this here, don’t you?

Ms Helen Hough: Yeah.

Counsel Inquiry: Because what you say is, your:

“… evidence is showing that the very elderly can be asymptomatic …”

Ms Helen Hough: Yeah.

Counsel Inquiry: “… until they then become suddenly very will …”

Ms Helen Hough: Yeah.

Counsel Inquiry: “… and [then they do not survive] longer than 48 hours …”

And you explain, you say you ask for the test, it takes 36 to 48 hours and by that time the patient is dead, and the swab is wasted.

And importantly, what then happens, is that person is not recorded –

Ms Helen Hough: No.

Counsel Inquiry: – as having Covid-19 –

Ms Helen Hough: No.

Counsel Inquiry: – because they’ve never been tested?

Ms Helen Hough: No.

Counsel Inquiry: Thank you. I’m going to turn now, if I may, back to the situation involving the deaths of residents within your home. And you explain that in terms of the pre-pandemic position, it was not unusual.

Ms Helen Hough: Yes.

Counsel Inquiry: You’d have a couple of deaths a month from natural causes, and you explained why that is.

Ms Helen Hough: Yes.

Counsel Inquiry: It’s owing to the cohort of people that you look after?

Ms Helen Hough: Yes.

Counsel Inquiry: And reflected that demographic. With regard to the pandemic, you explain within your statement that the types of patients that you often had changed?

Ms Helen Hough: Yes.

Counsel Inquiry: And that they were much closer to end of life themselves –

Ms Helen Hough: Yes.

Counsel Inquiry: – and were deteriorating rapidly –

Ms Helen Hough: Yes.

Counsel Inquiry: – and consequently the number of deaths that you and your colleagues experienced rose significantly during that time?

Ms Helen Hough: Yes, they did.

Counsel Inquiry: Do you recall the first death of a Covid-19 positive patient of yours?

Ms Helen Hough: I do.

Counsel Inquiry: Can I just ask you some details about that, if I may. On that occasion, I understand that it was an elderly gentleman who had –

Ms Helen Hough: No, a lady.

Counsel Inquiry: A lady, my apologies.

Ms Helen Hough: Yeah.

Counsel Inquiry: A lady who had become unwell?

Ms Helen Hough: Yeah.

Counsel Inquiry: And that you requested a test –

Ms Helen Hough: Yeah –

Counsel Inquiry: – again from Public Health Wales, as we’ve already been through, that test subsequently came too late?

Ms Helen Hough: Yeah.

Counsel Inquiry: – in the day. But I want to concentrate, if I may, upon your requests for medical assistance.

Ms Helen Hough: Yeah.

Counsel Inquiry: And oxygen in particular?

Ms Helen Hough: Yeah.

Counsel Inquiry: Her oxygen levels were low.

Ms Helen Hough: Yes.

Counsel Inquiry: And you sought a prescription; is that right?

Ms Helen Hough: That’s right.

Counsel Inquiry: And what response did you get?

Ms Helen Hough: The – this lady became quite poorly very quickly. She was a very fit lady, and I noticed she became quite poorly. Her temperature was rising, and she did start with a bit of a cough.

So we rang the GP. Of course, with the wi-fi, you don’t – we couldn’t get an accurate picture because the wi-fi would break up, so she couldn’t see her.

So I said to the GP – she was a locum GP, she wasn’t a local GP – and I said, “I need some oxygen for this lady and some antibiotics.”

So she prescribed the antibiotics and she did say to me, “How do I do the oxygen?”

So I said, “Well, you write me a prescription, we come and pick it up, then we take it to the chemist and then we get some oxygen” – or whichever body where we take the prescription to – “and we get the oxygen.”

And she said, “Well, the prescriptions will be here tonight.”

So we picked up the prescription from the GP’s practice. By this time it was 6 o’clock, so everywhere was closed. So I couldn’t get any oxygen. So the very next day, I rang the G – her own GP, who was then back on duty, and I said the same thing to them, “This lady is deteriorating overnight, she’s very poorly, I need some oxygen. I need to pick – we’ve picked up the antibiotics, I need the oxygen, I need it ASAP.”

Because her oxygen levels were dropping down.

And she prescribed end-of-life drugs. And we never ever got the oxygen. Ever.

Counsel Inquiry: Indeed, you deal with more generally the issue of oxygen within your statement, explaining –

Ms Helen Hough: Yes. The sad thing with this lady is – and it’s hard, because we knew this was our first …

Counsel Inquiry: Yes.

Ms Helen Hough: She was …

Lady Hallett: Try having a drink of water. That sometimes helps.

Ms Helen Hough: She was our first Covid death. And she was a lovely lady.

Vernon had to go in the room, and she just said, “Help me, Vernon. Help me. Help me. I can’t breathe.”

Because we couldn’t open the window for her.

And I just made him get out because he’d never seen anything like this. We’d never seen anything – it was literally – she was literally gasping for air. And we couldn’t do anything. We didn’t have anything to give her.

But he got very distressed, but not as distressed as her. But she … so it was literally like taking a fish out of water, and they couldn’t – they couldn’t – they’re suffocating, they couldn’t breathe. And without that relief of the oxygen, although it’s little – we knew there was not much we could do, but there was no relief for this woman. It was horrific. And unfortunately, Vern saw that. He didn’t get involved with the death of patients, but that was horrific. And she was just begging him for help.

But yeah, it was – by the time we got the swab for her, she’d gone, she’d died, unfortunately. Horrifically.

Ms Cecil: Indeed, and in your statement you set out how important oxygen often is in providing that comfort, effectively?

Ms Helen Hough: Yeah, it did give them relief, yeah.

Counsel Inquiry: Just – if I may just draw that document up on screen, your email, you make that point very forcefully there. It’s the one that ends 598472.

You explain that you have no oxygen generally on site –

Ms Helen Hough: No.

Counsel Inquiry: – because it was decided a few years ago that you could not keep it there, even for emergencies.

Ms Helen Hough: No.

Counsel Inquiry: It had to be prescribed. But instead of GPs prescribing it, they give you end-of-life drugs instead?

Ms Helen Hough: Yes.

Counsel Inquiry: And you explain that relatives would be horrified?

Ms Helen Hough: Yeah. Yeah. That’s how easily it was –

Counsel Inquiry: Indeed.

And you go on to provide a very vivid description below that, which is:

“As a patient’s oxygen saturation level drops with this disease [with Covid] they are gasping for breath, and [you] cannot give any oxygen relief at all …”

Ms Helen Hough: No.

Counsel Inquiry: And as that’s the only treatment for Covid-19 you found that disgraceful because obviously that’s available at hospitals.

Ms Helen Hough: Yeah.

Counsel Inquiry: Touching then on – and continuing on down, you explain that:

“… paramedics do not want to admit from care homes …”

Ms Helen Hough: No.

Counsel Inquiry: “… [anyone] showing … COVID19 symptoms …”

Was that your experience in terms of your patients within the home?

Ms Helen Hough: Yes.

Counsel Inquiry: At that point they were “left with no oxygen relief or any further treatment”.

Ms Helen Hough: This lady as well, she didn’t get swabbed, so she wasn’t counted as one of the numbers, and I knew it was Covid.

Counsel Inquiry: In general terms, with regard to access to healthcare and hospital treatment, did you experience any other – just moving on to that general topic now, if I may.

Ms Helen Hough: Yeah.

Counsel Inquiry: You also had experience of patients with unrelated Covid –

Ms Helen Hough: Yes.

Counsel Inquiry: – unrelated illnesses to Covid-19 –

Ms Helen Hough: Yes.

Counsel Inquiry: – who ambulances refused, initially, to take to hospital?

Ms Helen Hough: Yes.

Counsel Inquiry: That was involving diabetes –

Ms Helen Hough: Yes.

Counsel Inquiry: – blood sugar levels lowering?

Ms Helen Hough: Yes.

Counsel Inquiry: But also where a patient of yours fell and received a fracture?

Ms Helen Hough: Yes, yeah. With the case of the gentleman, he came in for respite care. He was waiting for an operation. And he developed an infection, so he’d got a slight temperature. So the ambulance men said that because he’d got a slight temperature when he came in – because he was semi-comatose because of his diabetes and I – we can give glucose as a nurse – sorry, we can give insulin if they’re hyper, but if they’re hypo I can’t give intravenous glucose.

So without getting GPs there, we rang an ambulance – well, the GP told me to ring an ambulance. So the paramedics came, and because he’d got a slight temperature, obviously because he’d got an infection, they refused to take him. And it took me three hours to argue for him to be admitted into hospital. And the ambulance was outside for three hours, until somebody from the ambulance headquarters admitted to take him in.

And they said to me – they weren’t local ambulance men, I don’t know where they were from – but they said to me, “The hospital aren’t going to be very pleased with this”, and I went outside the building and I did say to the ambulancemen, “It’s not up to you to play God here. You’re just taking in poorly patients into hospital. You don’t get to decide, unfortunately, who lives or dies in this home.”

But – they weren’t very pleased with me, but that was how I felt. I felt that nobody is speaking up for my patients.

Counsel Inquiry: Thank you.

I just want to move to a related topic which is do not attempt cardiopulmonary resuscitation notices.

Ms Helen Hough: Yeah.

Counsel Inquiry: And you explain in your statement that all GPs had put in place DNACPRs on their patients.

Ms Helen Hough: Yeah.

Counsel Inquiry: Was that all of your patients within the care home?

Ms Helen Hough: Yes, yes. I came back from a meeting and 50% of them had already had the paperwork in place because it had been sent to them, and they all had DNRs in place.

Counsel Inquiry: And was there, to your knowledge, any consultation –

Ms Helen Hough: No.

Counsel Inquiry: – with the patient or their families?

Ms Helen Hough: No. I managed to speak to some of the patients’ relatives before they – this was slightly before lockdown this was happening, this was before lockdown. And two of the relatives, I managed to get in touch with them, and they got hold of their GP, and it was removed, because they didn’t agree with it. They spoke to their parents about it, and they didn’t want it in place either, and it was removed. That’s the only two.

Counsel Inquiry: Prior to lockdown, where there were those notices in place, would, nonetheless, that individual be taken to hospital if necessary?

Ms Helen Hough: If what, sorry?

Counsel Inquiry: If there was a notice in place –

Ms Helen Hough: Yes.

Counsel Inquiry: – for an individual patient of yours –

Ms Helen Hough: Yes.

Counsel Inquiry: – would they, nonetheless, be taken to hospital for treatment?

Ms Helen Hough: Yes, yes.

Counsel Inquiry: Did you see any change in that during the pandemic?

Ms Helen Hough: Yes. We found that ambulance drivers and paramedics were not happy to transport any patients to hospital, if that needs – like, when that lady fell, unless there was a DNR in place. And I’d never come across that before. So that was a relatively new consequence to me.

Counsel Inquiry: Thank you. I now want to move on, if I may, just to – you’ve touched upon the impact upon your patients already in the home.

Ms Helen Hough: Yeah.

Counsel Inquiry: Obviously things were significantly restricted. Did you see any decline in their mental, cognitive and physical abilities, as a consequence?

Ms Helen Hough: Of being isolated?

Counsel Inquiry: Of being isolated.

Ms Helen Hough: Yeah, what we did was, those who could, we gave them all, or I asked the relatives to bring in individual mobile phones so they could speak to them over the phone. Because we didn’t, as I say, we didn’t have very good wi-fi so they couldn’t Facetime anybody or their relatives. But yes, they did become, they became quite sad and isolated. But I must admit, they knew what was going on, even though my patients were quite poorly, I didn’t have many with dementia. So they knew what was going on, and they were quite happy to be isolated from other patients, but their mental health did suffer because of that.

Counsel Inquiry: Of course. And you explain, and I’m not going to go through it in detail, the various steps you took to try to ensure that people could have visits –

Ms Helen Hough: Yes.

Counsel Inquiry: – including, effectively, building an atrium-type visiting booth so that individuals could come in that way –

Ms Helen Hough: That was during the second wave –

Counsel Inquiry: Indeed, during the second wave, so they could speak to their relatives –

Ms Helen Hough: Yes.

Counsel Inquiry: – and have those visits?

Ms Helen Hough: Yes.

Counsel Inquiry: And in terms of your staff, and the impact on your staff, how would you describe that?

Ms Helen Hough: They were terrified. They worked nonstop, those that could. There were some that had, they couldn’t come to work anymore because they were shielding, they had relatives of their own at home that they were protecting. So a lot of staff then went off to be furloughed, really, because they couldn’t do that.

But people with young children, they were terrified. They didn’t know who’d got Covid, who hadn’t got Covid, if they were taking it home to their families. So we had a caravan on site so a lot of staff – and we had an annex that was an attic upstairs, so a lot of the staff didn’t go home at all until their days off. So they came on duty and then worked their shift and then they slept on site and then they came back to work until their days off, and then they would leave everything behind and go home so they didn’t risk taking it home. But they were all absolutely terrified.

And after – as I say, they worked so hard. But after we lost that patient they became increasingly worried because we knew that was an abnormal death and we knew it wasn’t a normal average death. So we knew this lady had got Covid, so a lot more staff went off that had got young children, they were frightened.

At one time there, because it was spring and summer, as well, we had a lot of hay fever sufferers, and because of course, because we’d got no testing at all, if they’d got the slightest sniffle, they weren’t allowed in. So in one week alone I had 15 staff off with hay fever symptoms, but I couldn’t get any of them tested.

Counsel Inquiry: Indeed. And just dealing with those staff shortages, I understand that where staff were unable to work that you or other members of staff would effectively be picking up those shifts –

Ms Helen Hough: Yeah.

Counsel Inquiry: – working double shifts – (overspeaking) –

Ms Helen Hough: We were working 16, 20 hours, yes.

Counsel Inquiry: Because you effectively had a permanent cohort of staff.

Ms Helen Hough: Yes.

Counsel Inquiry: You did not use agency staff at any point during the pandemic.

Ms Helen Hough: No, no.

Counsel Inquiry: One of the other points you raise in relation to the staff shortages is related to childcare and where you had problems with schools not accepting that your workers were key workers?

Ms Helen Hough: Yes.

Counsel Inquiry: All of which, obviously, pointed to a very, very pressurised, difficult, challenging time in relation to staffing?

Ms Helen Hough: Yeah.

Counsel Inquiry: I want to turn now to the impact on you and your husband at that time. As I say, you set that out within your statement. You explain that by this point, by later in the pandemic, you were working 16-hour days?

Ms Helen Hough: Yeah.

Counsel Inquiry: And that was quite normal, you were up early?

Ms Helen Hough: Yes.

Counsel Inquiry: You’d often be up in the evenings, in the nighttime. You would be there – if there was a death at night it would fall to you –

Ms Helen Hough: Yes.

Counsel Inquiry: – to record that.

Ms Helen Hough: Yes.

Counsel Inquiry: And Vernon would be dealing with various building problems and different issues that arose in that regard too?

Ms Helen Hough: Yes.

Counsel Inquiry: So the two of you were working under intense pressure?

Ms Helen Hough: Yeah.

Counsel Inquiry: And lengthy hours, with no respite?

Ms Helen Hough: No.

Counsel Inquiry: In terms of those pressures, with regard to Vernon, how did that period, from the February period of time to the May of 2020 impact upon him?

Ms Helen Hough: Well, unfortunately, his workload increased dramatically because trying to get supplies in, he was having to queue at supermarkets and the cash and carry and things. Everything took so much longer. One day he came back and he’d been queueing at B&Q to get in for two hours for a ballcock to repair a toilet. And then when he was there, something else broke and he said, “I’ve got to go back and queue” for something minor again. But in between that time, he was also counted – because the staff, you know, some of the staff would go off until we could get a test and they could come back to work, he was also counted in some of the numbers for some of the more able-bodied people to help feed. So there was – he was allocated five patients who were – who he would sit and chat to and give them their breakfast and give them …

So in between doing all this he would come in, so we’d get up and give them their breakfast, these five patients, or take their breakfast to the rooms or feed those who needed feeding. And then he’d start and do his bit and then he’d come back at lunchtime and do his five, and then he’d go back out and get some more supplies in or repair whatever he had to repair, and then come back at teatime and then, you know, feed the five patients again.

Every single day this was.

So if ever one of them would say they fancied fish and chips, or they fancied something, he’d go and get them something different because these five patients were his, so he would treat them to a sherry, or whatever, and go and take them sherry or glass of whisky.

But yeah, his workload did increase but also, what also affected, but unbeknown to us, was he was watching this on the TV. Well, we both were. Every single day. There was a rule in the house that we don’t normally put the TV on until 6 o’clock at night unless grandchildren were there. But this was on from morning until night. Our TV was on – when we were watching what was developing every single day. And then when Boris Johnson said that they were going to test in care homes there was such a relief for us all to start being tested, and on that very same week, Mr Drakeford turned that around. He said they won’t be doing it in Welsh care homes, in Wales, because he didn’t see … well, in fact, his words were the resources would be better spent elsewhere.

And we just – we just sat back in the chair, and he just said to me “What do we do now?”

And I said, “I don’t know. I don’t know. We just keep working.”

Counsel Inquiry: And you explain very vividly in your statement that Vernon began to lose weight?

Ms Helen Hough: He did.

Counsel Inquiry: He became, as you say, more depressed, effectively?

Ms Helen Hough: He did, yeah.

Counsel Inquiry: He’d seen an awful lot of horrific situations arising within the home –

Ms Helen Hough: Yes.

Counsel Inquiry: – in terms of people dying at that stage, and you tried to reassure him –

Ms Helen Hough: I did.

Counsel Inquiry: – at various points, including saying, “Soon we will have some respite, we will go on a break.”

Ms Helen Hough: Yeah, I said to him, “At the end of June, at the end of June we’re going to Spain no matter what. We are going to – June we are going to Spain.”

It’s the last thing I said to him.

Counsel Inquiry: No, I appreciate that, Ms Hough.

And sadly, on 21 May, you were notified, weren’t you, by an officer –

Ms Helen Hough: Well, this was on the Wednesday, the 20th, and we were having a glass of sherry outside, funnily enough, and I said, “We’re going to go to Spain”, and then he came back down and said, “How are we going to go with this epidemic – with this pandemic?”

And I said, “We put our gloves and masks on and we just go, we just go.”

And then on the Thursday, he’d gone to work, as I – well, he had gone to work. He’d even fed his patients. He’d fed his patients and I thought he’d gone shopping. And then the police came and told me that unfortunately he’d been found in the police car park, and he’d shot himself, in the police car park, in the car.

Lady Hallett: I think that’s enough.

Ms Cecil: Thank you, Ms Hough, I think that’s as far as we need to go today. Thank you very much.

Lady Hallett: You’ve been so extraordinarily brave. And I know it’s been in your statement, and members of the public may not know, but given how you were treated by certain sections of the media when your husband’s death became public, I can’t tell you how impressed I am by the courage that you’ve shown –

The Witness: Oh, thank you.

Lady Hallett: – in coming to tell us. Because what you’ve had to tell the Inquiry, and indeed the public, is so important. It’s obviously, it covers all sorts of different aspects of the Covid pandemic, and we are extremely grateful to you.

The Witness: Thank you. I just think the public should know –

Lady Hallett: Exactly.

The Witness: – that it was extremely hard. We had nothing in the care homes at all. Nothing. No help.

Lady Hallett: I hope you feel it’s been a help. I can’t imagine what it’s like reliving it all.

The Witness: Yes. It’s fine.

Lady Hallett: Thank you very much indeed.

The Witness: Yes.

Lady Hallett: We’re going to break now and I know a representative will come and see you and talk to you before you go. And don’t forget we also have a counselling team here if you need it.

The Witness: That’s all right, thank you.

Lady Hallett: I shall return at 2.20.

(1.20 pm)

(The Short Adjournment)

(2.22 pm)

Lady Hallett: Ms Carey.

Ms Carey: My Lady, may I call, please, Professor Laura Shallcross.

Professor Laura Shallcross

PROFESSOR LAURA SHALLCROSS (affirmed).

Questions From Lead Counsel to the Inquiry for Module 6

Lady Hallett: Professor Shallcross, thank you for your patience, we got to you as soon as we could.

The Witness: Thank you.

Ms Carey: Professor, your full name, please.

Professor Laura Shallcross: Laura Jane Frances Shallcross.

Lead 6: I hope you have in front of you your statement ending in 613177, dated 2 May of this year.

Professor Laura Shallcross: I do.

Lead 6: I’m going to ask you, Professor, a number of questions about what came to be known as the Vivaldi Study. But before I do, can I just introduce you to everyone. I believe you are the Professor of Public Health and Translational Data Science, Director of the Institute of Health Informatics at UCL, and you hold a National Institute for Health and Care Research research professorship?

Professor Laura Shallcross: Yes, that’s right.

Lead 6: You are trained as a junior doctor?

Professor Laura Shallcross: Yeah.

Lead 6: You trained in epidemiology and population health. You have had a number of research published in high-impact journals. I won’t name them all. And you have conducted a number of pieces of published research on infection that are relevant to adult social care?

Professor Laura Shallcross: Yes, that’s right.

Lead 6: And if anyone wishes to read more about the professor’s background, they can do so at paragraphs 3 to 5 of her statement.

May I turn, though, please, firstly to the Vivaldi project. Could you just help us, please. It was set up by you to look at national – Covid-19 in care homes. It was funded by the Department of Health and Social Care; is that right?

Professor Laura Shallcross: Yes, that is.

Lead 6: And then, in due course, subsequently funded by what came to be known as the UK Health Security Agency?

Professor Laura Shallcross: Yes, that’s right.

Lead 6: And just as an overview, can you tell us what was the study set up to do?

Professor Laura Shallcross: So do you mean for the survey, initially?

Lead 6: Well, there’s two parts of the study: there’s a survey and a study, but just generally speaking, what was the aim of Vivaldi?

Professor Laura Shallcross: Okay. So, very broadly speaking, the aim of Vivaldi was to generate evidence to support the public health response to Covid in care homes, and we did that, as you said, through a survey which was done very quickly, and through a cohort study which was done over a three-year period ultimately.

Lead 6: Can put it this way: was it designed to try and understand why there was such high infection rates in care homes?

Professor Laura Shallcross: Yes, that’s right. So it was really recognising that we didn’t have the data or the evidence that we needed to understand what was going on and so a research study was our way of trying to generate that information quickly.

Lead 6: All right. And was it also designed to try and understand what disease control, what – we called it sometimes IPC, measures could be used to try and mitigate the risk of the disease in care homes?

Professor Laura Shallcross: Yeah, exactly. So, yes.

Lead 6: Now I think you first got involved when you were approached by Professor Susan Hopkins of PHE, as it then was, on 8 May of 2020?

Professor Laura Shallcross: That’s right.

Lead 6: Right. Can I ask you, though, at the outset, given that there was involvement by PHE and funding by the Department of Health and UKHSA in due course, do you consider that Vivaldi was nonetheless an independent study of the infection rates, and like, in care homes?

Professor Laura Shallcross: Yes, absolutely, I do. So we had complete – when I say “we”, the research team had total control over the design and the analysis of all the data in the study.

Lead 6: So if anyone were to think that because you were being paid by the Department and UKHSA you were therefore singing their tune, would that be right or wrong?

Professor Laura Shallcross: That would be absolutely wrong.

Lead 6: Thank you.

Lady Hallett: As far as research projects are concerned, forgive me, because I’m not an academic so I don’t necessarily know that much, but it’s perfectly common for government departments to sponsor a research that remains independent, even though they may be the purse holder?

Professor Laura Shallcross: That’s right. So, for example, the National Institute for Health and Care Research receive their funding from the government but all the research is done independently and that’s a very traditional model that’s used for research, yes.

Ms Carey: Thank you very much.

I think you set out in your statement, Professor, that you were involved in a number of meetings convened by the Health Data Research UK organisation which brought together a number of researchers and in due course became the study that you set up; is that right?

Professor Laura Shallcross: So my recall is actually, though, it was only one meeting for Health Data Research UK.

Lead 6: Right, thank you.

Professor Laura Shallcross: It was more that the individuals who attended that meeting, some of those people then became involved in the SAGE Social Care Working Group.

Lead 6: Thank you very much. And that brings me on to the SAGE Social Care Working Group. I think from May 2020, 19 May 2020 onwards you began attending SAGE Social Care Working Group to report on progress?

Professor Laura Shallcross: That’s right.

Lead 6: So you were asked to set it up by Professor Hopkins on 9 May, from 19 May onwards, you’re reporting on progress, I think it’s a few months later that you actually start to produce the findings and report those as you go along?

Professor Laura Shallcross: So I would say that we – that the attendance at the SAGE Social Care Working Group was more as part of that group and being somebody who was involved in research, so partly through the CATCH-19 study as well, and our formal reporting was initially to the Data Debrief Group at the Department of Health and Social Care, and there was very much a requirement that we would report into that group. And as we started doing that, it made sense to do the same into the SAGE Social Care Working Group.

Lead 6: Let me deal with that straight away. I think you say at your paragraph 14 there were two formal mechanisms by which Vivaldi’s results were shared, one was with the DHSC Data Debrief Group.

Professor Laura Shallcross: That’s right.

Lead 6: Is that correct?

Professor Laura Shallcross: Yes.

Lead 6: Which met on a Thursday, and then you also reported into the SAGE Social Care Working Group which met on a Friday?

Professor Laura Shallcross: That’s right. But we were funded and commissioned by the Data Debrief Group in Pillar 4, so that was really the line management for the study.

Lead 6: Given, though, that you were attending the SAGE meetings on a Friday, how receptive did you find SAGE to the Vivaldi project and its findings in due course?

Professor Laura Shallcross: So I would say once we were fully established and we were generating useful evidence, absolutely, very receptive. Everybody was very keen to have as much data as possible to try and inform their policy and decision making. I would say at the beginning, when we were setting this study up, and this was particularly as the emergence of the data within the NHS Foundry occurred, there was perhaps a little tension about different types of data and which kinds of data might be prioritised.

So I think it took a bit of time for the value of what we were doing to be acknowledged, but once we were up and running, absolutely everybody was very receptive to the information we were putting out.

Lead 6: Can I just can you, please, about some of the things you just said in that last answer, because people may not be familiar with the various data streams and how they’re connected and collated.

Professor Laura Shallcross: Yes.

Lead 6: Just tell us, what is the NHS data – Foundry?

Professor Laura Shallcross: So NHS Foundry was set up during the pandemic to support the response. It was managed by NHS England, and it brought together lots of different kinds of datasets, including the testing data, in one location to enable people to conduct research using those datasets to support the pandemic response. So it was an incredibly valuable source of information for us in the Vivaldi Study.

Lead 6: So when you said there was perhaps a little tension between different types of data, can you just give us a flavour of what that tension was, please.

Professor Laura Shallcross: I think there are well-established systems that are used for public health disease monitoring, and this was a new one, and it was just taking some time for that, for the quality of the data, the opportunities around this data, to be made clear to everybody. So I think it was largely around the unfamiliarity, it was just a new thing.

Lead 6: May I ask you this: did you get any sense that there were people at SAGE or in the DHSC data debrief meetings that didn’t want to know how bad the infection rates were in care homes?

Professor Laura Shallcross: I don’t think I’m well placed to answer that question. So I worked closely with colleagues at the Department of Health and Social Care, and I think that some of the navigation of how to maximise the impact of our work was done by them, not by me. And so I was one step removed from it.

Lead 6: Can I go back to the beginning, when Vivaldi was set up, and I think you say that you first attended a SAGE Social Care Working Group meeting on 19 May.

I’d like to ask you about a paper that came out the week before, and if it helps you, Professor, it’s in your tab 14 in your bundle.

And could I have up on screen, please, INQ000253601.

This is a paper called the “Care Home Analysis” from 12 May 2020, so the week before you started attending the meetings.

First things first, did you see this paper at the time?

Professor Laura Shallcross: I don’t recall seeing this paper at the time.

Lead 6: If we go, please, to page 2 of the paper, we can see at the top there a number of questions that were to be considered by SAGE, some of which seemed to impinge on some of the work that Vivaldi was doing, potentially.

They want to know:

“[Does] SAGE support the conclusions presented about the characteristics of vulnerability of care homes, based in moderate data …

“Do SAGE agree that there is strong confidence that there has been a decline in all-cause mortality in care homes …”

By 12 May we’re talking about.

There’s recommendations on testing.

“[Does] SAGE support the need for further data collection …”

And:

“[Does] SAGE support the recommendations on future research priorities …”

Then can I just ask you about the next bit:

“Are there any proposed …

“Expand analyses to consider risks in domiciliary care.”

Professor Laura Shallcross: Mm-mm.

Lead 6: Were you asked, as part of Vivaldi, to look at the impact in relation to domiciliary care at all?

Professor Laura Shallcross: No, not at all.

Lead 6: Do you have a view though, given your understanding of the social care sector and your previous involvement in research, as to whether there is in fact enough research on the impact on infectious diseases on the domiciliary care side of the care sector?

Professor Laura Shallcross: Purely in relation to the pandemic. So I think that this was a gap that was identified, but it was also recognised how difficult it was to try to address it.

Lead 6: Are you able to give us a flavour of those difficulties?

Professor Laura Shallcross: I think one of the key challenges is around data and identifying the population, and it’s hard to do that in care homes but it’s logarithmically harder to do that for domiciliary care, and that’s one of the key challenges.

But I really had – I recognised it as a problem but it was not something that I had any involvement in.

Lead 6: Thank you. Can I just turn to page 5, though, which may be something more within your remit of this document, and one can see there that this paper recognised some data gaps. And if one looks at the second bullet point, the data gap was considered to be:

“Better linkage between hospital discharge notes and care home readmission would help to assess more accurately the connectedness/transmission from hospital and care home settings and vice [versa]. [They] will explore options moving forward.”

Did you have any difficulty, when you were conducting the Vivaldi Study, of linking hospital discharge notes and care home readmissions, just as a general question?

Professor Laura Shallcross: I mean, my first question would be what do these words mean exactly? Because hospital discharge notes, there’s no way that we would be able to get access to that information.

If they mean routine data, about dates that people were discharged from hospitals and dates that people were admitted to care homes, that was something that we could do, potentially. But it’s quite challenging, because of issues around the data. What I would say is that this particular report preceded my involvement.

Lead 6: Yes. So do I take it from that that when we come on to look at what access to data Vivaldi had, it did not include hospital discharge notes?

Professor Laura Shallcross: No.

Lead 6: So you didn’t know patient A left with this medication, these care needs, they’ve been in and had that treatment done? Nothing like that at all?

Professor Laura Shallcross: Sadly, that information does not exist in an accessible format.

Lead 6: At page 6 of this document there is reference to “large scale implementation of testing in care homes”. And it’s said there that it’s:

“… central to preventing and managing outbreaks. Testing can only support reduction of infection rates if coupled with actions to reduce contacts with positive cases and infection control more generally.”

Then, if one looks, there’s bullet points, and I’m going to summarise them as recommendations as to how to potentially address that problem: testing clearly high-risk care homes that had not reported an outbreak, testing residents and staff, weekly regular testing.

Looking at those bullet points there, Professor, do you agree that those recommendations are necessary and that we need to know the answers to those particular outcomes?

Professor Laura Shallcross: So I think, broadly speaking, we needed testing in care homes, and some of these points are around trying to prioritise the kinds of testing, recognising that testing capacity was very limited at this point in the pandemic.

Lead 6: We’re going to come on to that when we look at some of the results of Vivaldi in a moment.

You attended, I think, in due course, 31 of 38 meetings of the Social Care Working Group, and presumably you also attended a similar number of the DHSC debrief group. Can I ask you this in relation to DHSC, how helpful did you consider DHSC to be in helping get Vivaldi up and running?

Professor Laura Shallcross: So in terms of the project management support we received, it was excellent. So I really felt that we were able to move very quickly. We were able to problem-solve, so to do things at a pace that is not usually possible for research. So examples being ethical approvals would usually take six weeks. We were able to get this done in a couple of days. We needed to problem-solve around things like accessing PPE, how do we dispose of PPE in care homes that are taking part in the study, and all of these were solved quickly by working in partnership with DHSC. So that – those elements of the study worked really well.

Lead 6: You say in your statement, though:

“We were able to get the survey and the cohort study very quickly [up and running] with strong project management … However, there was a lack of clarity about how the commissioning and funding processes would work for the study.”

Can you just give us an idea of what you meant there?

Professor Laura Shallcross: Yeah, and I guess I should preface this with it was just such an unusual situation to be in, it’s not normal that you set up a research study in this way. So we started the work. I was very lucky that UCL were quite willing to be supportive, and there were financial implications that were just put up with by the university. But I think as time wore on, it became clear that this was not going to be a six-month project, and so we were funded for 12 months in the first instance and we had to then rebid for funding which meant writing business cases which meant – and this was quite – it was time consuming in a sense. We had to justify certain requests for, you know, computers or for additional laboratory testing. Those kind of things. And it didn’t feel seamless.

I think when you’re working with organisations that are used to interacting with universities, a lot of this is understood. We were working quite often with consultants who had been brought in from other companies and so it took up a lot of time. So I think it could have been more streamlined in how we were working together from a commissioning and funding perspective.

That was particularly in relation to the cohort study.

Lead 6: All right, well, we’re going to come on to the cohort study in a moment.

But just standing back for a moment, you said sort of the pace was good at the beginning. Can you give us an idea of how long normally it takes to set up a study and how long it took to set up Vivaldi?

Professor Laura Shallcross: Well, normally you would – well, in terms of funding, it could take 12 months. So that’s the – and writing protocols, you would take two months, perhaps, to write a protocol. We were writing protocols in 24 hours. Everything was being done at blistering pace because we recognised there was a desperate need for information and we were trying very hard to support that.

Lead 6: Can I – please disagree with this if I’ve got it wrong, but if the, sort of, bureaucratic nature of perhaps some of things that needed to be gone through were lifted, does that help speed up the process but in normal time, I’m afraid bureaucracy reigns?

Professor Laura Shallcross: Yes, that’s absolutely right, and we’ve definitely seen the return of bureaucracy post-domestic, yes.

Lead 6: Can I ask you, please, about your paragraph 9, Professor, and the Vivaldi Study itself, and why you say it was necessary to set up this study.

Professor Laura Shallcross: Yes, so I think the striking – when I started doing this work, I’m sure everybody in this room is very aware of the newspaper headlines about deaths in care homes and the tragedies that were unfolding, but what was very clear was that there just wasn’t any data to support that and so if you can’t measure infections or measure outbreaks or find out what’s happening to people who have been infected, it’s very difficult to know how to try and help.

So there was a real need for data and evidence to try and understand what was going on, and as you said earlier, to try and identify the kinds of strategies that might work to try and reduce the spread of infection and outbreaks.

Lead 6: I think up on our screen is, at the start of your paragraph 9, where you say:

“There are no systems which routinely monitor infections or hospital admissions in individual care homes, residents, or staff.”

Obviously there are the notifications to the public health teams when there’s an outbreak –

Professor Laura Shallcross: Yes.

Lead 6: – but you say:

“Establishing a research study was arguably the quickest way to address the gap in evidence on the burden of Covid-19 in staff and residents …”

All right. So this was needed to be done, otherwise we weren’t going to know routes of transmission and how best to potentially – what measures might mitigate transmission?

Professor Laura Shallcross: Exactly. And also the ability to respond to the emerging questions.

Lead 6: Can I ask you this: clearly there was the public health teams that were notified when there was an outbreak of infection. Are you able to explain in what ways the reporting of infections to public health teams was an effective means of managing outbreaks in the first instance, and what difference testing might have made to the managing of outbreaks in care homes?

Professor Laura Shallcross: So the standard way this operates, so pre-Covid, and obviously that was still the system in place at the beginning of the pandemic, is that care homes are requested to notify their local health protection teams when they suspect they have an outbreak. That’s usually done by phone call. Then those health protection teams will go in and they will do some testing and it’s usually up to around five cases that get tested. So you are always going to be under-ascertaining the number of people who have an infection and obviously when you have a pandemic like Covid, you have a very big proportion of the home that are infected.

So that was the set up at the start of the pandemic, and that was how public health agencies were able to try and understand what was going on, but once mass testing was brought in, it gave a much clearer picture of the burden of symptomatic and asymptomatic infection, and the extent of those infections and outbreaks.

Lead 6: Can I see if I’ve understood that correctly. So clearly if there is an outbreak, public health team are notified.

Professor Laura Shallcross: Yes.

Lead 6: They will test perhaps five of 50 residents, let’s say?

Professor Laura Shallcross: That’s right.

Lead 6: Five might test positive, there will be five recorded cases. There could be 45 other people in the home that are positive, and that would not be recorded in the health reporting data?

Professor Laura Shallcross: So I anticipate in that situation they would assume that many people had been infected but there wouldn’t be any testing data to support that.

Lead 6: But you wouldn’t know the precise numbers of the remaining 45 people –

Professor Laura Shallcross: Yes, that’s right.

Lead 6: – who were positive and who was negative?

Professor Laura Shallcross: That’s right.

Lead 6: Hence you say there could be significant under-reporting.

Professor Laura Shallcross: Yes.

Lead 6: The study, as you have alluded to a moment ago, was split into two different workstreams, if I can call them that: a survey and the cohort study, and can I look at each in turn and if we may start, please, with the survey and if it helps you, Professor, I’m at your paragraph 12. Just tell us, what was the survey designed to do and who was it designed to survey?

Professor Laura Shallcross: Yes, so it was designed to answer two key questions. So the first was how many people had been infected with Covid, care home staff and residents in wave 1? And the second was to try to get insights into the kinds of strategies that might help to reduce outbreaks and infections in those homes.

And we did this by surveying care home managers, so that was the population.

Lead 6: I think you say in your statement that the care homes – it was a one-off questionnaire of care home managers?

Professor Laura Shallcross: That’s right.

Lead 6: We that have, I think, at your tab 7, a summary of the project.

Can I ask, please, to call up on screen INQ000544939 and go to page 2, please, of the document.

But set out there are the aims and objectives of the survey. So by speaking to the care home managers, who were going to collect data on the number of staff and residents in each care home to record care home characteristics.

What is meant by the characteristics?

Professor Laura Shallcross: So this is really trying to address those data gaps as quickly as possible. So the first is to say we don’t know how many people are in these care homes so we can’t estimate the proportion infected because we don’t have the denominator. And the second around the characteristics, are things like is it a for-profit care home or a not-for-profit care home; what kinds of disease control measures, IPC measures are being used in these homes to try and help us understand what seems to be working and what’s not working to inform policy on how to limit the spread of infection.

Lead 6: Were there any particular care homes that were included or excluded?

Professor Laura Shallcross: So eligible care homes were those providing care to over 65s or providing dementia care.

Lead 6: And I think in due course the survey took about 30 minutes to conduct?

Professor Laura Shallcross: That’s right.

Lead 6: It was conducted by Ipsos MORI, and there were attempts to contact 8,634 of the eligible care homes. They were analysed and in due course it came out that there were 5,126 care homes that were included in the study.

Professor Laura Shallcross: That’s right.

Lead 6: And can you help us, is that a large number of care homes to survey, medium? Give us a sense of the scale of that survey.

Professor Laura Shallcross: So for a survey, that’s large.

Lead 6: Right.

Professor Laura Shallcross: And I think that you may suggest that a 56% response rate is not very good, but given the pandemic, given the other pressure on care homes, in my view that is actually a pretty good response rate.

It was a lot of care homes that we were able to collect data on.

Lead 6: The survey itself was conducted over 26 May to 19 June 2020 –

Professor Laura Shallcross: That’s right.

Lead 6: – is that right? And it was asking, though, the care home managers about things that had happened before that date range. Have I got that right?

Professor Laura Shallcross: You have got that right. And the purpose of that was because of the question that we’d been set. So we were trying to say how many people have been infected in wave 1 and hence we need to go back in time, recognising that the testing data wasn’t in place so we couldn’t get this information easily from other sources, from testing data itself.

Lead 6: We’ll come on to the specifics in a minute.

But can I go through paragraph 27 of your statement, Professor, which gives a little more detail to how the survey was conducted. You can see the dates there. “Early findings were communicated online by the ONS on 3 July”, and then if you can see, Professor, the main findings from the survey was an estimate of the proportion of care home residents and staff who tested positive based on the number of cases reported by the care home managers.

Professor Laura Shallcross: That’s right.

Lead 6: So this relied in part on any records or memory that they had of the residents and staff that had returned a positive test?

Professor Laura Shallcross: That’s right. And the reason we did it like that is because at that time people were getting tested in all sorts of different locations, and if they were tested in the care home, they might get recorded as a staff member or a resident, but if they went to a mass testing centre outside the care home, we would miss them.

Lead 6: Ah, okay.

Professor Laura Shallcross: So it was the best way to try and get that comprehensive assessment.

Lead 6: And the survey found there was 10.5% of care home residents who tested positive?

Professor Laura Shallcross: Yes.

Lead 6: And 3.8% of staff who tested positive.

Professor Laura Shallcross: (Witness nodded).

Lead 6: But I think you say at the bottom of that paragraph there that it was important to emphasise testing capacity in care homes was very limited during the first wave of the pandemic.

Professor Laura Shallcross: (Witness nodded).

Lead 6: So many individuals who were infected with Covid did not undergo PCR testing.

Professor Laura Shallcross: That’s right, yes.

Lead 6: So did you – can you help us, were the care home managers asked any questions about whether people had the symptoms of Covid or was it literally did they test positive or did they not test positive?

Professor Laura Shallcross: So we did ask about those things but because of the challenges of trying to ascertain what’s Covid, what’s flu, we were interested in who had tested positive. So, of course, this is an underestimate but we were trying to get some kind of baseline quickly to give us an idea of the sort of minimum proportion of people who’d tested positive.

Lead 6: Can I ask you, please, though about something in the middle of that paragraph where you say that “Survey responses were linked to individual level PCR test results between 30 April and 13 June, through the National Testing Programme.”

Can you help us with how the survey responses were linked to the PCR tests?

Professor Laura Shallcross: Yes. So when we – as you can appreciate, we were setting up all these studies very quickly and lots of things were changing in the background. So when we started talking about this study, one idea was that we would use the testing, the mass testing data as our outcome so that we would not be asking care home managers, we would be using the PCR test results. But as things evolved, we realised the testing data wasn’t going to be there in time. And so we had a rollout of one-off testing per care home and so we used that alongside asking the care home managers.

But whenever you design a research study you have to say what your primary outcome is. So our primary outcome was asking the care home managers, and then our secondary way of trying to look at this was looking at the testing data, recognising that it was going to be even more limited than asking care home managers.

Lead 6: Let’s come to the findings in your paragraph 30, please, Professor. We’ll perhaps have it on screen and I’d like to take this perhaps a little more slowly that I have been to date.

You had data from over 160,000 residents and nearly 250,000 staff members across the 5,126 care homes. Clearly, the proportions of testing positive are the ones we’ve just looked at.

For the reasons you’ve explained, it would be an underestimate because it was based on the managers’ recall, the number of people infected of course were not necessarily tested in the first wave.

But there were 53% of care homes that reported outbreaks and 469 care homes reported large outbreaks which are defined as what, please?

Professor Laura Shallcross: So we defined them, and this was an arbitrary definition that we created, because there isn’t one, to the best of my knowledge, so we defined this as homes with more than a third of the total number of residents and staff combined testing positive or those with more than 20 residents and staff combined testing positive.

And this was really just to try to get an assessment of the difference between having an outbreak which, at this point, I believe was defined as just one positive in the care home, because everybody was making the assumption there were lots of other cases that weren’t being tested, versus a large outbreak.

Lead 6: Based on that, you concluded that almost half or all care homes remain vulnerable to Covid in July 2020 because they had not had cases in the first wave. And can you explain, Professor, the significance of that finding, please, and – as far as policy might be concerned?

Professor Laura Shallcross: So it’s really recognising that the problem was going to continue, that all of these care homes we could just potentially see a repeat of what we saw in wave 1 if we were not able to instigate effective control measures to try and reduce the spread of infection.

Lead 6: A warning shot, then, for the waves that then came –

Professor Laura Shallcross: Yes.

Lead 6: – afterwards?

To paragraph 31, please. Clearly the other aspect of the survey was to look at use of disease control measures as you call them –

Professor Laura Shallcross: (Witness nodded).

Lead 6: – to reduce transmission? And the conclusions were that reduced transmission of Covid from staff was associated with adequate sick pay, minimal use of agency staff, and increased staff-to-bed ratio, so more staff than beds, presumably.

Professor Laura Shallcross: Yes.

Lead 6: And staff cohorting with either infected or uninfected residents?

Professor Laura Shallcross: Yes.

Lead 6: Can you help us with how Vivaldi came to those conclusions, please?

Professor Laura Shallcross: Yes. So we looked in Vivaldi at four different outcomes. So we looked at the infections in residents, infections in staff, outbreaks and large outbreaks. And then in our questionnaires, we asked about those kinds of measures, so things like: Do you use agency staff? Do you never use them? Do you sometimes use them? How often do your staff work across care homes? Very frequently? Not very frequently? And so forth.

So we were able to look at the homes reporting in each of those categories and then compare that to the number of infections or the number of outbreaks in those care homes, and then by doing our epidemiological analysis, that gives us a sense of which of those factors seemed to be most strongly associated with the risk of infection and outbreaks, and – yeah, that’s how.

Lead 6: So they were the findings that helped reduce the transmission of Covid.

Looking at the findings in relation to increased transmission, did Vivaldi find, from residents, that was associated with an increased number of new admissions to the facility?

Professor Laura Shallcross: Yeah.

Lead 6: Can I just pause there, does that mean admissions from either the community or hospitals?

Professor Laura Shallcross: Yeah, yes.

Lead 6: And poor compliance with isolation procedures?

Professor Laura Shallcross: Yes.

Lead 6: So if you didn’t have good IPC and there were a large number of admissions, there was a likelihood of increased transmission of Covid in the care home?

Professor Laura Shallcross: That’s right. I think the phrasing of the question was about the difficulty in isolating residents and – because obviously with residents with dementia, it can be extremely challenging to try to ask residents to stay in their rooms.

Lead 6: If we just stay with your paragraph 31, you can see there that you reported the results to the data debrief committee on 11 June, the 18th and then I think the 25th, and I’ll come on to the different meetings themselves in a moment, and the taskforce, and then to final conclusions in July?

Were the findings being refined, if I can put it like that, as the study progressed?

Professor Laura Shallcross: Exactly. So we were accumulating data all the time. As the questionnaires were being rolled out across care homes by Ipsos MORI, data was coming across to NHS Foundry and we were analysing that in real time, and then looking at that data and trying to share them as widely as we could, because we recognised it was our job to try to inform policymaking.

Lead 6: Now, you say:

“It is … important to note that the Vivaldi survey was a cross-sectional survey, which can identify associations between risk factors for infections and outcomes, but cannot be used to infer causality.”

Would you help put that in layman’s terms, please.

Professor Laura Shallcross: Yes. So what that means is that, in a cross-sectional study, you are asking questions about things like your exposure. So what I mean by that are things like: did you use agency staff? How many new admissions you had.

So the factors that you are interested in as being potentially important, and your outcomes, but you’re asking those questions at the same time, which means that you don’t know if A causes B or if B causes A.

Other kinds of studies let you start off by looking at your agency staff and then you would follow people over time and see what happens, and that gives you a better chance of being able to understand cause and effect.

Lead 6: Right. But you weren’t able to do that?

Professor Laura Shallcross: No, not in this kind of study.

Lead 6: All right. Thank you very much. That can come down. I think you said then, obviously you were reporting as the findings emerged. There was a main message on 11 June to the Data Debrief to highlight the risk that staff working across multiple sites posed a risk to residents.

On 18 June, again findings suggested that staff working across multiple sites might increase residents’ risk of Covid-19, and that staff working across the sites increased the risk of outbreaks.

And on 25 June, you highlighted that regular use of agency staff was likely to be an important risk factor for infection in residents and staff.

Professor Laura Shallcross: Yes.

Lead 6: And so there we are now at the end of June 2020.

Can I just ask you about those meetings. Obviously you were reporting to the Data Debrief and then into SAGE as well. Was there any difficulty in you attending the SAGE Care Home Working Group in June 2020 to present those various findings?

Professor Laura Shallcross: So my recall of this was that once we had findings to present, it was – there was an expectation on us that we would report in each week. So not difficulties associated with that, that I recall.

Lead 6: And can I just conclude with dealing with the survey by looking at your paragraph 37, and I think, Professor, there’s something you want to correct in paragraph 37.

Professor Laura Shallcross: Oh, yes. Yes –

Lead 6: Well, we’ll pull it up on the screen because then I think people will be able to follow and make the correction in their own minds, but you said:

“The … survey he had a significant impact on policy because [you could] generate [the] results quickly, and at the time there was an absence of evidence … [the] findings [suggested] that staff were more likely to infect residents than vice versa … [which] informed the decision to focus limited testing capacity for [Covid] in the first wave on residents, rather than staff. The set-up of the … Social Care Infection Control fund was supported by two of the recommendations from … Vivaldi … to minimise [Covid] transmission … that movement of care workers between sites should cease and that care worker sick pay should be topped up by [the] government.”

That’s the nuts and bolts of that paragraph, but help us with the correction you’d like to make.

Professor Laura Shallcross: Yes, and apologies for this. So that in the sentence that begins “Our preliminary findings”, I’ve accidentally reversed, so it should be – so I’ll read the whole sentence for clarity:

“Our preliminary findings suggesting that staff were more likely to infect residents than vice versa informed the decision to focus limited testing capacity for SARS-CoV-2 in the first wave of the pandemic on [staff], rather than [residents].”

So those two words have been reversed, and apologies for that.

Lead 6: So that does tend to suggest that it was staff that were more likely to infect residents than the other way around?

Professor Laura Shallcross: That’s right.

Lead 6: Have I got that right?

Professor Laura Shallcross: That is correct.

Lead 6: Yes. That’s not to say that that was an intentional infection by them.

Professor Laura Shallcross: No.

Lead 6: Quite the opposite. Hence why you then made the recommendations that sick pay should be topped up and there needed to be more work done in relation to movement of care workers between sites –

Professor Laura Shallcross: Correct.

Lead 6: – as a way of helping reduce the risk of transmission of Covid?

Professor Laura Shallcross: Correct.

Lead 6: Now, clearly you made the findings. Can you help with what was supposed to happen with the findings thereafter and the extent to which you were aware that they were used to inform policy?

Professor Laura Shallcross: So my understanding is that they were very much used to inform policy. We were presenting this data everywhere, all the time, and often at very short notice.

And I think that the credit for this really goes to my colleague in DHSC, who was really trying extremely hard to make sure that everybody who needed to know about these findings knew about them.

But I think – I think we were able to get the information under the noses of the people who were able to make decisions, and that was a very serious priority for us.

Lead 6: Given that on any view there were rather bleak findings coming from the Vivaldi Study, did you get any sense that people didn’t want to hear the results that Vivaldi was producing?

Professor Laura Shallcross: I don’t know that it’s not – that they didn’t want to hear the results. I think that perhaps at the beginning, there was – were we treading on toes a little? There were organisations whose job it is to provide this kind of data and perhaps we were filling a gap that maybe it shouldn’t have existed.

But I think very quickly everybody was focused on trying to get the data that was required, and so people just wanted data to inform policy.

Lead 6: I’d like to ask you about the Vivaldi findings and the extent to which they impinge on the discharge policy to expedite hospital discharges to care homes.

And can I ask you, please, Professor, to look at your paragraph 38. I think as with most surveys and, indeed, studies, there are caveats that needed to be applied to this, and I think you say in your statement that the questionnaire that was devised, some of the questions were poorly completed by care home managers, only 80% of the 5,126 care homes responded to the question about the number of admissions since 1 March, ie that’s the question about admissions from hospital. Is that the question you mean?

Professor Laura Shallcross: Yes, that’s right. Yes.

Lead 6: Right. And only 40% of care home managers answered the question on the number of residents who returned from hospital, and the subset with Covid-19. Do those perhaps unanswered questions by some of the respondents in your view undermine or mean that the Vivaldi findings don’t hold water?

Professor Laura Shallcross: So we deliberately didn’t report on the latter of those two. So we included new admissions because it was 80% complete and that seems like a fairly reasonable amount of data, and we also did multiple imputation on those as well, I believe, in our work, which is where you try to account for the missingness in that data.

But we didn’t use the other datasets because it was such a large proportion of missingness. We just – I strongly felt it was too risky to try to draw conclusions based on that data.

And I was thinking about this again, and I think one of the reasons why it was incomplete is because those questions were added in late into the questionnaire.

Lead 6: Thank you.

I think it’s important to remember, in any event, as I think you’ve said before, we were relying on the managers’ recall of who had come back into the care home and whether they’d come back from hospital, and whether they’d come back from hospital with Covid-19. And of course at the time, certainly between 1 March and about 15 April in England, testing for Covid-19 was extremely limited.

Professor Laura Shallcross: Yes. I think there’s also this risk of reverse causality, which is where the direction is the wrong way round and if you – if people are very worried and concerned that discharge from hospital into care homes is causing this problem, then they may be more likely to remember it. And so this is a real challenge with asking people to remember what happened.

Lead 6: You make the point at the bottom of your paragraph 39 you were unable to account for other routes of transmission, such as ingress from staff or visitors. Can you help us with what you mean by there and why we need to potentially factor that into the Vivaldi findings?

Professor Laura Shallcross: Yeah, I wonder if the easiest way to think about this is the diagram that’s in the –

Lead 6: Yes.

Professor Laura Shallcross: – I think it’s Figure 1 in the CMO Technical Report.

Lead 6: Yes, could we have up on screen, please – it’s your tab 5, Professor, thank you – INQ000203933, and I think it’s the one with all the routes into –

Professor Laura Shallcross: That’s right.

Lead 6: Is that the one you’re talking about?

Professor Laura Shallcross: Yes.

Lead 6: Just pause a moment while we bring it up on screen. INQ0002039333_0298. Thank you. It does appear in the technical report as well, but I think in fact we’ve taken it out of a slightly different document.

298 at the bottom.

There we are. Thank you very much.

This is a schematic showing all the different routes of Covid-19 into care homes: staff, visiting professionals, visitors of residents, residents leaving the care home, for whatever reason, new admissions from the community, residents coming back from hospital, and indeed new admissions from hospital. So there’s seven potential routes by which Covid can enter the care home.

Professor Laura Shallcross: That’s right.

Lead 6: Can you help us then by when you say, “We were unable to account for the other routes of transmission”, why this document helps explain why you couldn’t account for those other routes?

Professor Laura Shallcross: Yeah, I think this is a very helpful diagram because what it does is illustrate all the different ways in which infection can get into a care home, but I think it’s also important to realise that these changed. This was a dynamic thing. So early in the pandemic, when people could still visit, for example, visitors could potentially bring infection in. Later in the pandemic, that was no longer a mechanism. So this is changing all the time and it also probably played out differently across different regions in the country, you know, for example, perhaps we saw different patterns with ingress of infection in London early in the pandemic relative to some other parts.

So the challenge is that if you really want to understand which of these routes is most important, you need to collect data on all of them. And that requires very good testing across all of these different mechanisms which we never had. And so in Vivaldi there are some of these that we are able to say something about, particularly the role of staff, something about people coming in, new admissions, but we didn’t collect data on visitors, we didn’t collect good data on people coming in from hospital, and so we can’t say – we cannot give accurate information on the relative contribution of these different mechanisms.

Lead 6: And so to be able to say, for example, that core staff were the main route of transmission, you would nonetheless need to test all of the other people on here to be able to work out that that was the main route?

Professor Laura Shallcross: Yes, that’s my view.

Lead 6: Right. So essentially you’d have to test everyone?

Professor Laura Shallcross: Yes.

Lead 6: And would a one-off testing regime tell you which was the main route of transmission?

Professor Laura Shallcross: It’s going to probably depend at different times of the pandemic. So it’s a very difficult question to answer.

Lead 6: So you can say what is a route, but not necessarily what is the main route –

Professor Laura Shallcross: Correct.

Lead 6: – or routes?

Professor Laura Shallcross: Based on data from Vivaldi, yes.

Lead 6: That brings me on, Professor, if I may, to a question that you were asked by the Inquiry, and I think could we have up on screen your paragraph 43.

I think you are aware of comments made by Mr Matthew Hancock in his Module 2 witness statement and, Professor, you should know he’s due to give evidence tomorrow, but he said in Module 2 – could I have up on screen, please, INQ000613177_21, paragraph 43, where we’ve set out in the middle there what Mr Hancock said in that statement.

He said in his Module 2 statement, and it’s in the middle of the page:

“… a widespread concern has been that patients who were discharged from hospitals were the main cause of infections in care homes. While I understand why so many people hold this view, we now know that this is not the case. During the summer of 2020 I was made aware of initial evidence showing that movement of staff between care homes was the main source of transmission, and I asked for urgent work to be undertaken to place restrictions on such movements.”

Now, you were asked to comment on that, Professor, and I think you set out below, and you say:

“Whilst it’s accurate that Vivaldi provided evidence supporting the important role of staff in transmission of infection, and the risks associated with movement of staff … the survey did not [for the reasons you’ve just told us] provide evidence on the relative importance of different modes of transmission.”

Is that correct?

Professor Laura Shallcross: That’s correct. So based on data from Vivaldi – and I’m aware there are obviously other sources of data on this point too, but based on data in Vivaldi, yes, that’s correct.

Lead 6: So it’s going beyond what can be concluded properly from Vivaldi –

Professor Laura Shallcross: Yes.

Lead 6: – to say that movement of staff between care homes was the main source of transmission?

Professor Laura Shallcross: Yes.

Lead 6: If I were to substitute “a source of transmission”, would that be accurate?

Professor Laura Shallcross: Yes.

Lead 6: Right. Thank you.

I think you are aware that in due course there was a SAGE consensus statement –

Professor Laura Shallcross: Mm-hm.

Lead 6: – published. Would you just give me one moment, Professor, to see if I need to go to it. It was not published until 26 May of 2022.

Can we call up on screen, please, it’s your tab 4, if it helps, INQ000215624_2. In fact, if we just flick over to page 4, you’ll see that diagram again. But if we have that in mind, the consensus statement, and go back to page 2, please, the consensus statement found that studies showing that at least some care home outbreaks were caused or partly caused or intensified by discharges from hospital. Did the Vivaldi findings support that or not?

Professor Laura Shallcross: I think Vivaldi – we don’t make a major contribution on that, but yes, we are definitely compatible with that statement, yes.

Lead 6: “However, based on the very much larger associations between care home size …”

Which is a proxy for all footfall.

Professor Laura Shallcross: Yes.

Lead 6: Does that mean the bigger it is, the more people are coming in?

Professor Laura Shallcross: Exactly.

Lead 6: “… and outbreaks, hospital discharge does not appear to have been the dominant way in which Covid-19 entered care homes”.

Is Vivaldi able to opine on that or not?

Professor Laura Shallcross: No, but I think this is such a – it’s a challenging issue, so I think the conclusions in this are comparable with Vivaldi. For the reasons outlined with this diagram, we have these seven routes of transmission. There are various studies that are cited in this evidence and I think it would be fair to say that there is no – we don’t have a perfect study addressing this question, but based on the data that we do have, it does highlight the role, important role, of transmission from staff.

Lead 6: Can I just look at the cohort study with you and perhaps then after that, my Lady, it might be a convenient moment for a break.

The cohort study was very different from the survey.

Professor Laura Shallcross: Yes.

Lead 6: Can you tell us how the cohort study was set up, please, and I’m back in your statement, if it helps you, back to paragraph 12 and then various other paragraphs thereafter.

Professor Laura Shallcross: So the cohort study was set up at the same time as the survey, but it was recognised it was going to take longer. And the initial questions we wanted to answer in this was to get a more accurate statement on the proportion of care home staff and residents who’d been infected in wave 1 and to do this with blood testing and antibody testing, and this is because we recognised that a very big proportion of people were not tested by PCR.

And so we set out initially to do this study in around 100 care homes that were owned by Four Seasons Health Care and this was serial blood sampling in care home staff and residents to understand who had been infected.

Lead 6: Professor, can I just make sure I understand, and those that are following understand, even though you may not have had a Covid positive test at the time, a blood sample taken later would tell you whether you had the Covid antibodies –

Professor Laura Shallcross: That’s right.

Lead 6: – and ergo be able to say that even if you didn’t have the test, we know that you’ve had Covid; have I got that right?

Professor Laura Shallcross: That’s exactly right, yes.

Lead 6: So you were looking at the blood sampling to try and not get round the fact that there was no PCR testing, but just to see if we could have different numbers of people now with the Covid-19 antibodies?

Professor Laura Shallcross: Yes, that’s right.

Lead 6: And how easy or otherwise was it to obtain samples from people in care homes because presumably you need someone to go and take the blood sample?

Professor Laura Shallcross: So immensely challenging for lots of reasons but we were very fortunate because we worked very closely with the care sector on this and we were able to find a way to make it work within that setting. So some of the challenges are obviously many people in care homes are cognitively impaired, conditions like dementia, and so informed consent for blood sampling is not straightforward and so we had to talk to next of kin or nominated consultees, staff members, but we primarily worked with next of kin, and to do that we were very reliant on staff within those care homes to support that process because we couldn’t go into care homes as a research team because all care homes were locked down at that point.

Lead 6: So you’re really reliant on the staff going above and beyond to ring next of kin –

Professor Laura Shallcross: Yes.

Lead 6: – to say, “Would you mind if I took a blood sample from your relative, your loved one?”

Professor Laura Shallcross: Yes, exactly.

Lead 6: And are you able to give us a sense of if there was any resistance from the care home staff in the instance? Secondly, was there any resistance from next of kin to participating in the study?

Professor Laura Shallcross: So we were really fortunate because right at the beginning of the study we spoke to the Minister for Social Care and had a meeting with her. I met with her, and the chief executive of Four Seasons Healthcare, and we talked about the study, we talked about why it was so important, but we also highlighted that this was going to create additional workload for staff and so we had that organisational buy-in and they were hugely supportive and we were able to fund people to act as project managers within their organisations.

So actually, we didn’t really encounter resistance. It was – I think everybody understood why this was important, and it was very much a shared endeavour. I cannot speak to what it was like being a frontline carer trying to negotiate that, but that was the feedback that we had, and people wanted to know their results, which also helped a lot –

Lead 6: Yes. Notwithstanding that it added to the burden of the workload on the staff –

Professor Laura Shallcross: Yes.

Lead 6: – I think you said that there was a further challenge not just on them but you wanted to link the results of the blood testing in the residents to PCR test results where they were available, and you wanted to link it to NHS datasets that were held in the NHS Foundry. How easy or otherwise was it to be able to make those linkages?

Professor Laura Shallcross: So there were two barriers. So the first is, if you want to do those linkages, you have to have an identifier, you have to have the NHS number, and lots of carer provider organisations don’t hold that information. Most of them do now but pre-pandemic they didn’t. And so there were real challenges around how you get accurate identifiers, and then there’s the challenge of data linkage and that really is about putting the datasets in the same location, and having the permissions in governance around that, and subsequent changes with the COPI notice that I imagine we’ll come on to, it enabled us to find a way round that that was much more effective longer term.

Lady Hallett: Professor, sorry to interrupt, how long do antibodies stay in the blood?

Professor Laura Shallcross: How long do they stay for? It depends. So we could be confident we would have them for four to five months.

Lady Hallett: Thank you.

Ms Carey: So we’re conducting this study, it started in May, I think, it was, so it would still capture people who were discharged in March.

Professor Laura Shallcross: Yes.

Lead 6: Yes. In fact, it would go back almost to the beginning of the 2020.

Professor Laura Shallcross: I think our biggest challenge is that not everybody survived to be available, so again, we have the underestimation problem. And there is variability in the duration of antibodies as well.

Lead 6: Right. So there’s those two caveats to apply to the cohort study –

Professor Laura Shallcross: Yes.

Lead 6: – as well. You mentioned there COPI notices, Control of Patient Information, which essentially provides a legal basis for research teams to access data. How valuable was it to have the COPI notices in place to enable the access to that data?

Professor Laura Shallcross: Incredibly valuable. So it changed us from being a study where we could only include care home residents who had consented to blood sampling, which was very challenging for the reasons we’ve just discussed, to being able to collect data on everybody in those care homes, so all staff and all residents. So that took us from a study of the sort of order of magnitude of thousands, to ultimately we had over 70,000 care home residents and staff in our study. And clearly the power of our analyses and conclusions is much greater if we’re able to enrol many more people.

Lead 6: Can we look, please, then, at the key findings from the Vivaldi cohort study and your paragraph, I think, 44 is where it starts, Professor.

And it might be useful if we could call it up on screen. It’s INQ000613177_021.

Thank you.

The cohort study alongside the survey was to get an accurate estimate of the proportion of surviving staff and residents who’d been infected, based on the antibodies, and you wanted to be able to track what happened to the resident staff over successive waves.

I think you explained that although it started out as 100 care homes – did you say it went to 700?

Professor Laura Shallcross: So ultimately we had, I think it was, 346.

Lead 6: 340. Forgive me. Thank you.

Then there was the issues with linking it that we’ve looked at.

But if we go on to paragraph 45:

“… the first priority in the cohort study was to estimate the proportion of staff and residents who had been infected … Using … [the] NHS Foundry and blood samples … we estimated that 33% of surviving residents and 29% of staff had antibodies showing they had been infected in the first wave.”

So quite higher numbers than we looked at in the survey.

Professor Laura Shallcross: Yeah.

Lead 6: And would you expect there to be higher numbers –

Professor Laura Shallcross: Yes.

Lead 6: – based on the antibody cohort testing?

Professor Laura Shallcross: Yes, absolutely.

Lead 6: So that was not a surprise to you?

Professor Laura Shallcross: It was not. I think we were all surprised at how high it was, bearing in mind these were survivors, but we absolutely expected it to be higher than the PCR testing, because we were very aware that that was very limited in the first wave.

Lead 6: Or to put it another way, it shows you how much of an underestimate it was from the survey results?

Professor Laura Shallcross: Yes.

Lead 6: “The estimate for residents was approximately three-fold higher than [in the] … survey …”

You say it’s not surprising.

It shows that many people who were infected in the first wave did not have access to PCR testing …”

Then help us, please, really with the next few sentences, Professor. You say:

“To investigate rates of … infection, we compared [the PCR positive infection rates] in residents and care home staff who had evidence of a previous infection up to ten months earlier … with those who had not …”

And what did you find, please?

Professor Laura Shallcross: So the reason we did this – so this was before vaccines were available, and one of the key questions was whether people could get Covid more than once. And, you know, how worried did you need to be if you hadn’t had it, essentially?

So what we did was we looked at antibody test results referring to wave 1, so people could be positive or negative, and then we looked among those positives and negatives: what was their chance of getting a new infection? And we found that it was very significantly lower in those who had had a prior infection, highlighting that if you’d had it previously, you had immunity.

Obviously that changed with the emergence of variants, but at that point in time that was a really key finding because it did provide some reassurance that there was some protection.

Lead 6: So effectively if you’d had it and survived, if you were at lower risk of infection?

Professor Laura Shallcross: Yes.

Lead 6: And therefore, help inform policy to look at the places where there wasn’t that amount of immunity, they might need more protection, if I can put it like that –

Professor Laura Shallcross: Yes.

Lead 6: – or different forms of protection, but to give you an idea of how many people in care homes might nonetheless be protected by the fact they’d had it the first time around?

Professor Laura Shallcross: And I think also, importantly, providing some reassurance to people in the care sector about the risk of – at least if you have had it and survived, then potentially your future risk is diminished.

Lead 6: Now you mentioned just a moment ago, that was before there was the variants as they emerged. Can I ask you, please, about your paragraph 46. Can you help me with what Vivaldi found in relation to I think it was the Alpha variant that emerged in the autumn of 2020?

Professor Laura Shallcross: Yes, so – and this is a really good example of why data and data linkage was so important.

So what we were able to show is that, as this variant emerged, because of a peculiarity about how the PCR testing worked, we were able to track the emergence of this variant across the south east of England, and there was good data on how it had spread across in the general population, but no data on the care home population. The hope at the time was because we had a lot of control measures in place, care homes were protected and it wouldn’t get in, but we were able to show that the variant had got into care homes, and the potential risks associated with that.

Lead 6: And just finally, I think in due course Vivaldi was asked to look at vaccines against viruses, because there was a concern that Covid vaccines might not provide residents with adequate protection, but what did Vivaldi find when you were able to factor the vaccines in?

Professor Laura Shallcross: So there was a lot of concern because, for example, with influenza vaccine, you know, it’s less effective in these older age groups. The clinical trials that were done of the vaccines excluded care home residents, so we didn’t have any data. We were able to show that the vaccines were actually working very effectively in this population and substantially reducing the risk of infection. And so, again, that provided a lot of early reassurance, and also to support the rollout of uptake of vaccination in that population.

Lead 6: I think it showed that there were – vaccines did work, they were effective for three months after dose 2, but thereafter protection declined?

Professor Laura Shallcross: Yes.

Lead 6: Is that a fair summary?

Professor Laura Shallcross: And we saw that pattern repeatedly because we kept doing these kinds of studies. So we saw, after booster vaccinations, within a period of approximately three months, you start to see that waning, hence the need for boosters. And so our data was also useful for the Joint Commission on Vaccination and Immunisations when trying to think about the timing and need for boosters in this population.

Ms Carey: My Lady, a lot of data there, a lot to take in. Would that be a convenient moment?

Lady Hallett: Yes, it is, and I think the stenographer had quite a tough morning.

Ms Carey: Yes, I appreciate that, I’m sorry.

Lady Hallett: If you’ll forgive us, we will take a break. I promise you we will finish your evidence this afternoon. I shall return at 3.40.

Ms Carey: Thank you, my Lady.

(3.26 pm)

(A short break)

(3.40 pm)

Lady Hallett: Ms Carey.

Ms Carey: Thank you, my Lady.

Professor, you told us earlier this afternoon that the data was shared both with the DHSC debrief group and the Social Care Working Group. And during your time at the Social Care Working Group meetings, did you see PHE data being referred to during the course of those meetings?

Professor Laura Shallcross: Yes. So from memory, every week we would have a series of presentations, Vivaldi would present, PHE would also present, and they would present on the outbreak data usually.

Lead 6: Right. Did the Vivaldi survey use any PHE data that you’re aware of?

Professor Laura Shallcross: No.

Lead 6: What about the Vivaldi cohort study, did that rely on any PHE data?

Professor Laura Shallcross: So the – Vivaldi relied, the cohort study relied very heavily on the testing data. Testing data was quite complex because there were different routes, they were called pillars, and from memory, Pillar 1 was largely PHE led, data collection, and this included the testing, the five samples per care home that they used at the beginning. But then there was mass testing, which I believe, was Pillar 2, and so a lot of the data we used initially was Pillar 2. Over the time, we also got access to Pillar 1 data. So we will have had some tested data, I think, via PHE.

We also had access to datasets like the national immunisations dataset which I believe is jointly held by NHSE and PHE.

Lead 6: Right. I will tell you why I ask, Professor. There is some evidence before the Inquiry that the quality of PHE data was lacking. Two things: firstly, whether you experience that; but secondly, if that is right whether that in any way affects the Vivaldi cohort study findings. Can I deal with that firstly.

Did you, when you were in the meetings, look at the PHE data and come to realise it had some limitations to it, and if so, what were then?

Professor Laura Shallcross: So is this thinking of this as separate to Vivaldi?

Lead 6: Yes, separate to Vivaldi.

Professor Laura Shallcross: So I think the challenge with outbreak data is that it’s based on reporting of outbreaks which is largely care homes reporting outbreaks into PHE or UKHSA, and so that is never going to be comprehensive information because it requires somebody to pick up the phone and report data in. This did change during the pandemic to an extent because of the mass testing. But as a mechanism, you are always going to be under-reporting the number of outbreaks and the number of cases if you’re relying on a care home to phone in data to a local health protection team.

Lead 6: And was that caveat or limitation, call it what you will, well recognised by the people that were in the SAGE Care Home Working Group?

Professor Laura Shallcross: I would say so. I think almost everybody in that group, a lot of people in that group, had a public health background and so will have had a familiarity with HPZone, which is the system that’s used for that.

Lead 6: Right.

Professor Laura Shallcross: Just on some of the other datasets, so on the vaccinations dataset, there was never any suggestion that the quality of that data wasn’t pretty good.

Lead 6: So to go back to the second part of that question, which was: notwithstanding the caveats that have to be applied to the PHE data, do you think that impacts on the validity of the findings of Vivaldi or not, in the cohort study?

Professor Laura Shallcross: No, I don’t, because we were – the innovative thing we were able to do in the cohort study was to use the testing data which linked individuals in a care home to their care home, so we had their NHS number on the swab linked to their Care Quality Commission ID, their care home ID, and that gave us a registry of everybody in a care home and so we knew everybody in the care home, all staff, all residents. So that’s the key difference between adopting that approach to define your population, versus having these care homes phoning in about outbreaks.

Lead 6: You told us before the break that perhaps at the beginning there was a feeling that you might be treading on toes a little, to use your phrase, and there were organisations whose job it was to provide the data, and perhaps you were filling a gap that shouldn’t have existed. And can I ask you about that answer, please. Which department or organisation was it who should have filled the gaps that Vivaldi stepped into?

Professor Laura Shallcross: So I think in an ideal world, obviously we don’t live in an ideal world, we would have great surveillance on care homes, and we don’t have great surveillance on care homes and that’s why the situation unfolded in the way that it did, and why we didn’t have the data that we needed. So I think that Vivaldi came in to fill or, at least, partially fill that gap, and perhaps that’s not ideal for a public health agency.

Lead 6: So really it’s UKHSA as it now is, or PHE, as it then was –

Professor Laura Shallcross: Yes.

Lead 6: – who had responsibility for surveillance of the care homes?

Professor Laura Shallcross: Yes. And what I would say is that we did work collaboratively and that our – the ability to use that data and work together, I think was very good throughout the pandemic but I think yes, we were filling a gap that ideally wouldn’t have existed.

Lead 6: One might have got the sense from your evidence, Professor, that there was a great deal of collaboration during the pandemic, expediency and urgency being at the forefront of the mind. Are you able to comment on whether that same sense of collaboration exists now in 2025?

Professor Laura Shallcross: So I think that we don’t have the same impetus. So, as you know from the statement, we have a project called the Vivaldi Social Care project that we’ve been able to set up. We started working on this from around 2021. And it was really recognising that we need to make sure this kind of situation can’t unfold again, and what needs to be in place to prevent that.

And I think that we are making great progress towards that, but the priority that it is afforded now versus during the pandemic is different. That’s understandable, but I do think that we really do need different organisations to continue working in that same way if we want to make sure we’re better prepared for future pandemics and that we have the infrastructure we need to be able to respond in a timely way.

Lead 6: Now you mentioned the Social Care project. It’s at your paragraph 63, for you and anyone else following.

Just help us though, what is the Social Care project designed to try to achieve?

Professor Laura Shallcross: So it’s really building on what we learnt about what works in Vivaldi Study. So the reason Vivaldi worked was because it was a partnership between the care sector, academics and policymakers, and because we were able to use routine data. So we really very rapidly recognised that the care sector was under huge pressure. They did not have time to collect data for us. So how can we use routine data to enable better surveillance but also research, the kinds of research we need?

So we’ve worked together since 2023 to codevelop this project called Vivaldi Social Care. We’ve got 700 care homes that have signed up, or thereabouts, to take part. We’ve been able to get a new data platform created by NHS England which allows us to have data on residents and link data on residents. And our ambition to is to build on that to start doing studies to reduce the impact of all kinds of infection, but ensuring that we have that agility to respond to new and emerging threats.

Lead 6: I think you say at the bottom of your paragraph 63 there:

“… demonstrate the value for care providers and policymakers of … data by benchmarking rates of infection …”

So any infection?

Professor Laura Shallcross: Yes.

Lead 6: “… and hospital admission across care homes.”

Can you help me about that aspect of the Vivaldi Social Care project?

Professor Laura Shallcross: So it’s the similar to the main Vivaldi, to the cohort study. So in the cohort study I mentioned we created this registry of care home residents, and what we were able to do was then link to data on vaccinations, hospitalisations, deaths, and there’s potential to link to other kinds of datasets. So using that same model, we’re able to link to data on hospitalisations in care home residents now, post-Covid, and look at hospitalisations for a whole range of causes.

So it doesn’t give us anything that we would like to know by any stretch but it starts to give you a sense of what’s happening in that population, where the priorities might lie, and a huge potential for surveillance but also for policy and planning moving forward.

Lead 6: I think you say in your statement you anticipate sharing the first set of results, I think in September 2005, or is that perhaps now a bit later than September?

Professor Laura Shallcross: Yes, yes. We’ve had some challenges with our data linkage with NHS England, but I – yes, this year.

Lead 6: Can I go back, please, and perhaps to a wider point that you make in your statement, that you say that there is no established culture of research in care homes. Can you help us with what impediment or otherwise that was during the pandemic and whether, if at all, that has changed now?

Professor Laura Shallcross: So I think the starting point here is research is part of the NHS Constitution, so it’s expected that this will happen in hospitals.

In social care, because social care is not one organisation, it’s a much, much bigger challenge, and so there is not the same familiarity with research, and there aren’t people who are funded to support the delivery of research. And so it’s not reasonable to expect people to add in a huge amount of extra work to their jobs when they’re already overstretched, to take on the delivery and design of research studies.

So we need to overcome that problem by funding people to do the research, but also we need to provide the training and capacity building for staff in those care homes.

And this really – some of this is not – is quite simple stuff. Even terms like the word “research”, this doesn’t mean the same thing to everybody. In the NHS this is understood to an extent but in social care some of these words are potentially really intimidating and off-putting, so there’s a whole language and cultural change around this that we need if we want to start delivering the kind of research that we need to see in this setting and that people in the setting want to do.

Lead 6: If you’re able, and it’s not an impossible question to answer, who or how do we go about changing that culture? Is it training? Is there a department or a body that might be able to promote it? Can you help at all with how we might ameliorate that position?

Professor Laura Shallcross: Yes, so the National Institute for Health and Care Research has a big focus on trying to support more research in social care. I think it’s partly about trying to understand what the barriers are and recognising that it’s not the same as the NHS, and so this is about partnership working, so we’re trying to work towards research that is led by social care. It can’t be academics like me marching in and saying, “This is what we should do.” You know, it’s the wrong way round.

So a lot of it is about understanding the setting, partnership working, and then providing that training and capacity building, and providing the financial resource and incentive so that people have their time bought out so they can participate in research studies.

Lead 6: You make the observation in your paragraph 53 that a major barrier to the research was the inability to reliably identify care home residents or staff in the datasets because there is no national registry of residents and staff. Why was that such an impediment?

Professor Laura Shallcross: So if you can’t – I think one thing that became really obvious to me in Vivaldi quickly was the power of statistics. So you have to be able to measure things to highlight where issues lie, and to be able to get investment and support to it, to address those challenges. And in the care sector we don’t have – or in care homes we don’t have a registry of care home residents or staff.

So if you want to look at things like, say, you wanted to say how many people aged over 65 have gone into hospital for flu. You can look at our hospital episodes statistics data, a routine dataset that exists, and you can get the answer to that question, but if you want to ask the same question for care home residents, you can’t, because you can’t work out which records relate to care home residents.

And this just seems like such an important barrier. We don’t even have a registry of the population. So it’s not that surprising that when a crisis like Covid hits, we’re not able to quickly get the answers to the questions about that population and what’s happening to be able to inform policymaking.

Lead 6: You say we need a new way to develop and maintain a care home registry. Do you have any views about who should maintain that registry and how easily or otherwise it might be maintained?

Professor Laura Shallcross: I think it has to be held as a central resource and as national data infrastructure, because it’s not a research study. It’s something that would have value across so many different settings. It would be valuable for surveillance, it would be valuable for policy planning, commissioning. It’s also valuable for research. So it feels like something that it’s fairly fundamental.

But I think this also speaks as to sort of a bigger question about vulnerable populations and how you make the most vulnerable people in society visible, and we have so many challenges around this.

So we spoke about the COPI notice, but now the COPI notice is no longer. If we want to do this kind of work in care homes we have to have approval from the Health Research Authority Confidentiality Advisory Group. To do that, you that have to make the case for why you can use data without consent from this population.

And the way that’s assessed is by demonstrating the population support it. But of course in a vulnerable population who lack capacity, that is immensely difficult. So what you’re actually doing is taking a vulnerable population and then making it really, really difficult to have data on them, so that they then become more invisible.

And I think there are some real challenges around this, about advocating for these kinds of populations.

Lead 6: They will be questions for the DHSC and the UKHSA.

Can I just finally ask you this, please, Professor: obviously we looked at, earlier, the diagram showing all the various routes of ingress into care homes, and you’ve explained, I think clearly, how very difficult it would be to work out which of them was the most dominant route, but do you think there needs to be any research done on any particular one of the number of seven routes in that would help in the event of a future pandemic?

Professor Laura Shallcross: I think there’s a lot of discussion about how we might use point-of-care testing, so lateral flow devices, these kind of tests, in an effective way. And you could envisage a scenario where these are used more widely in care homes, potentially to test staff, potentially to test residents, or even to test visitors. So I think there is definitely the scope to do quite a lot of work in that area.

There are some real challenges around it, though, because sometimes if you start detecting infections for which there is no treatment, you can sometimes create more work and more problems, and certainly one thing – another thing we learnt in Covid was around the balance of risk and harms of isolating people, quality of life, making sure care homes remain open to visitors, and so forth.

So I do think we need more work in that area but I think it needs to be looking at it not just from a health perspective but also from a social care perspective, so you’re considering benefits and harms, but definitely from the resident and the family perspective, not just health.

Ms Carey: Professor, those are all the questions I ask before – I know there are some Core Participant questions –

Lady Hallett: Yes, just before Mr Weatherby asks a question. You’ve described the Vivaldi project and the data. When you talk about the data, are we talking English data?

Professor Laura Shallcross: Yes.

Lady Hallett: Do you know whether some of the principles you’ve described apply to the devolved nations or is that beyond your expertise?

Professor Laura Shallcross: I know a little about these, so the data infrastructure is very different in each of the devolved nations. Certainly in Wales they have the SAIL dataset where a lot of the linkages are already in place. In Scotland they have different issues. I don’t think any of the nations have solved the problem of how you identify care home residents and do all these linkages, but …

Lady Hallett: So some of the principles you have expressed would apply around the devolved nations although they might have slightly different problems or challenges?

Professor Laura Shallcross: I think that’s right. I think they would apply to an extent but in different ways.

Lady Hallett: Yes. Thank you.

Sorry, Mr Weatherby.

Questions From Mr Weatherby KC

Mr Weatherby: Not at all.

I think in fact, Professor, you’ve covered all of the questions that I was going to ask you but there’s one point I just want to clarify, just to make sure that I’ve understood it.

And Ms Carey took you to your paragraph 9, where you said that there are no systems which routinely monitor infections or hospital admissions in individual care home residents or staff. Have I understood your evidence to date correctly that that has been addressed, but there is still no ongoing systems to make sure that that happens?

Professor Laura Shallcross: So it was addressed during the pandemic –

Mr Weatherby KC: Yes.

Professor Laura Shallcross: – but now, if we wanted to measure cases of influenza, for example, in care home residents, we couldn’t do that.

Mr Weatherby KC: You couldn’t. So is that something that you would invite the Inquiry to address in recommendations?

Professor Laura Shallcross: Yes, and that’s something that we’re trying to address, albeit in a smallish way in the Vivaldi social care project.

Mr Weatherby KC: In the social care project. That’s what I’d understood.

Just finally on that, would one way of doing it be to make it a regulatory requirement through the CQC?

Professor Laura Shallcross: I think the challenge is it’s this difference between having data at care home level versus the individual level data. So there are systems like Capacity Tracker which collect data direct from the care homes on things like the total number of people who have been vaccinated, and that’s very helpful, but if you have a pandemic and you want to know how well is the vaccine working –

Mr Weatherby KC: Yes.

Professor Laura Shallcross: – ideally, you need to be able to track individuals. You get vaccinated, do you get infections? And that’s the kind of data we don’t have at the moment because we can’t identify those care home residents in routine data.

Mr Weatherby: I see. Thank you very much indeed.

Lady Hallett: Thank you, Mr Weatherby.

Ms Jones. Over that way.

Questions From Ms Jessica Jones

Ms Jones: My Lady.

Professor Shallcross, you have also answered most of what I was going to ask you about today, as well, but just to follow on from the points you made in your evidence about the lack of pre-existing data that you found about care homes, the lack of data linkage and the gaps that you described Vivaldi as filling, including the need, as you see it, for a centralised database of information about those who live and work in care homes, can you help us at all with what kind of data about those people a centralised database would need to contain in order to be useful for future research and policy making on the experiences and support that people in care homes require?

Professor Laura Shallcross: Yes, so I think at the start this could be extremely limited. So what we’ve been doing in the Vivaldi social care project is just the NHS number and the care home ID and the reason we’re doing that is because we simply want to know who is in a care home on a given day. It’s just that denominator, because if you know that then you can link to other routine datasets like hospital admissions, like vaccinations, ideally primary care data. But that’s your starting point, and we’ve approached it in this way because we want to build trust, we don’t want to go too fast, we want to demonstrate the value of doing this to the care sector, but beyond that, there is huge scope to pull in all different kinds of data. I’m particularly thinking about quality of life data, which we know is so important, but is actually really hard to get.

There would need to be work to think about how you record that, how you have the capacity to record that across lots of residents, but ideally, you record that annually or every six months and you’re able to pull that into your electronic care records and then that becomes part of your centralised data collection.

So I think there is huge scope for us to use routine data to really fill in this gap and with a lot of the advance – recent advances in data science, particularly ChatGPT, large language models, there are ways that we will be able to start pulling data from care records that doesn’t require lots of additional work from care home staff themselves.

So yeah, I think it could be very simple, initially.

Ms Jessica Jones: Thank you. When you refer to quality of life data, can you help us understand precisely what you mean by that?

Professor Laura Shallcross: Yes. This is not my area but colleagues of mine have done a lot of work looking at social care-related quality of life, so measures that you can use to assess quality of life in care home residents. There have been some projects, there’s a study called DACHA that looked at this I think in around 60 care homes, and so it is collecting that data and then making modifications to the digital care records so that it gets recorded in those care plans and then if it’s in there, using mechanisms like we’re using in Vivaldi social care, you can then pull that into your centralised data collection and that could be used for a variety of purposes.

So there are existing tools to measure that. The challenge is you need a workforce who have time to be able to go and do those measures on residents and it needs to get recorded in the care records so we can pull it out at the other end.

Ms Jessica Jones: Thank you. And finally, I know your experience with Vivaldi was with through care homes specifically.

Professor Laura Shallcross: Yes.

Ms Jessica Jones: But you, of course, know and recognise that the care sector is much wider than that. Do you have any insights about the collection of data and how that could usefully be done or centralised in respect of people in other kinds of settings or who receive care at home?

Professor Laura Shallcross: Yeah, so I should apologise also because I’m sure I have referred to “social care” when I should have said “care homes” throughout this afternoon.

I think some of the principles could apply. I think particularly if a domiciliary care – digital care records are used across domiciliary care, and so that is potentially a way into improving our understanding of that sector. How comprehensive the kinds of data that are in those systems, I really don’t know, but I do think as a principle, the idea of using routine data as the way in is something that should be explored across domiciliary care as well.

Ms Jones: Thank you very much.

Lady Hallett: Thank you, Ms Jones.

That completes all the questions we have for you, professor. Vivaldi has been an extraordinarily worthwhile project, so thank you for all that you’ve done and are continuing to do, and thank you also to your university for taking the financial hit at the beginning.

The Witness: Thank you.

Lady Hallett: I hope they haven’t had to continue taking a financial hit.

The Witness: No.

Lady Hallett: But we were very fortunate the number of universities who were prepared to take the hit at the beginning and allow their academics like you to give us your expertise, so thank you very much indeed.

The Witness: Thank you.

Lady Hallett: And thank you for helping the Inquiry. It has been a really interesting afternoon. I’m not that good with data sometimes but you made it seem extremely interesting. Thank you very much.

I shall return for 10.00 tomorrow.

Ms Carey: My Lady.

(4.05 pm)

(The hearing concluded until 10.00 am the following day)