30-07-2025

(9.59 am)

Lady Hallett: Ms Hands.

Ms Hands: My Lady, good morning. May I please call Professor Barclay.

Professor Stephen Barclay

PROFESSOR STEPHEN BARCLAY (sworn).

Lady Hallett: Professor Barclay, thank you for coming to help us.

The Witness: My pleasure.

Questions From Counsel to the Inquiry

Ms Hands: Professor, good morning. If I may start with your background. Is it right that you are a professor of palliative care at the University of Cambridge and continue to practise as a GP and consultant in palliative medicine?

Professor Stephen Barclay: That’s correct, yes.

Counsel Inquiry: And you are also the clinical lead in end-of-life care for the Cambridgeshire and Peterborough integrated care system?

Professor Stephen Barclay: That’s right.

Counsel Inquiry: You have co-authored a report for the Inquiry with Professor Sleeman, which can be found at INQ000587295.

If I may, could you just start by briefly summarising the key areas that the Inquiry asked for your expertise on, please?

Professor Stephen Barclay: Yes, certainly. I think it was to summarise the challenges that the health and social care system, particularly in care homes, faced in providing care for people approaching and at the end of their lives during the Covid-19 pandemic, and the impact of those changes particularly on patients and their families as well as health and social care professionals, and to make recommendations for how we might be more resilient in the future.

Counsel Inquiry: Thank you.

Now, your report provides important and detailed statistics on excess mortality across the UK, both prior to and during the pandemic. And I would like to start by looking at those with you, and in particular, some of the graphs that you’ve included in your report.

So if we could have on screen, please, INQ000587295, page 42. And this is figure 6.

Now, is it right that this shows mortality rates during the pandemic compared with the average rates during the four years prior to that?

Professor Stephen Barclay: That’s correct.

Counsel Inquiry: Now, if I may just focus on the line showing what I believe is the average number of excess deaths during that four-year period before the pandemic –

Professor Stephen Barclay: Yes.

Counsel Inquiry: – so that’s the blue line, and then we have the yellow bars which show the additional deaths. Can you just explain to us what that means, please?

Professor Stephen Barclay: Yes, so the line on the graphs is the average over previous years before pandemic, kind of what could be expected. The orange bars are the Covid-19-related deaths, where the patient was registered as having died with or from Covid, or where it was suspected to be a Covid death prior to confirmation of testing.

And then the yellow is additional deaths that were not Covid related, over and above those that could be expected.

Counsel Inquiry: Yes. Thank you.

Now, at risk of oversimplifying, is it accurate to say that across the four nations we can see that these graphs show that the death rate per 100,000 of the population increased significantly during the pandemic wave, so that’s from March to May 2020 and September 2020 to April 2021?

Professor Stephen Barclay: Yes.

Counsel Inquiry: And that that it returned to the average between those two waves?

Professor Stephen Barclay: Broadly, that’s a good summary. Thank you.

Counsel Inquiry: And if we may then go to the end of your report, that’s page 74, paragraph 232, you say this:

“Early in the pandemic” – and it should be highlighted on the screen in just a moment:

“Early in the Covid-19 pandemic, even though tens of thousands of excess deaths were predicted, the focus was on infection control, intensive care and emergency care, but not palliative care, and addressing the symptoms associated with dying from Covid-19. Failure to prioritise palliative and end-of-life care may have contributed to shortages of equipment … medicines and staff, with the result that many dying people did not receive the care that they needed and died with avoidable symptoms and distress.”

Would you recommend, for a future pandemic, that there be pandemic planning to reduce the risk of significant increase of excess mortality again?

Professor Stephen Barclay: Very definitely. I think that one of the recommendations there is there was an appropriate focus on infection and control and ventilators, et cetera, but somehow the focus wasn’t on the fact that when in excess of half a million people a year die from other conditions anyway, and the effect of the pandemic on the care of those people, particularly the elderly and vulnerable in care homes, wasn’t really foregrounded as it should have been, and to plan for whatever the future pandemic may be, how are we going to care for those people who are dying from that pandemic agent?

Counsel Inquiry: And picking up there on your reference to care homes, if we could please have on screen another of your graphs, and that’s INQ000587295, page 45, figure 9.

Now, this shows deaths in care homes during the pandemic, again compared with the average during the preceding four years.

So if we could perhaps focus on the blue bars in these graphs, are you able to help us with what that shows, please?

Professor Stephen Barclay: Yes, certainly. So, again, as in the previous graph, the blue line is the average from previous years. The blue bars here are non-Covid-19 deaths, so on the medical certificate of cause of death, Covid-19 did not appear. The pattern is concerningly similar in all four nations, but particularly in the first wave in care homes, there was a big peak in mortality, on – the blue bars, on top of which there was the orange bars there, which were Covid-19-related deaths.

And so that tripling of mortality during the first wave I think is very concerning.

Counsel Inquiry: And I think you say in your statement that in March 2020, care homes briefly became the most common place of death in England and Wales, overtaking hospital deaths for the first time?

Professor Stephen Barclay: Correct, that’s right.

Counsel Inquiry: And that was a situation that had not been projected until 2040?

Professor Stephen Barclay: That’s right.

Counsel Inquiry: In relation to deaths that occurred at home, if we could have on screen, please, INQ000587295, page 48, figure 12.

Professor Stephen Barclay: Yes.

Counsel Inquiry: Thank you. What does this graph show us in regard to deaths at home during the pandemic?

Professor Stephen Barclay: Thank you. So this is – it’s a Nuffield Trust report showing broadly similar data in terms of the peaks in care homes in yellow and hospitals in blue.

But I think to focus on the purple, which is deaths at home, similar peaks, but this kind of makes it clearer that there was increased proportion of deaths occurring in people’s own homes in the inter-peak period, and sustained afterwards. And indeed, we’ve seen that sustained since. So there was increasing need for health and social care provision in people’s own homes at the end of life.

Counsel Inquiry: Do we know, Professor, what some of the reasons could have been for that?

Professor Stephen Barclay: I think we can speculate. There was, during the pandemic period, firstly, an understandable focus on “Stay at Home”, “Protect the NHS”, and so it may have been that some people who were approaching the end of life took that message, perhaps, a little bit further. There was real concern that people didn’t want to go into a hospital or a hospice, or indeed a care home, for fear of risk of infection and for fear of reduced access to their dying loved one.

And certainly there were people who were having serious illnesses such as heart attacks, anecdotally, we know who stayed at home and, unfortunately, died at home preventably during that period.

Counsel Inquiry: And taking all of the data that we’ve just looked at as a whole, are there any caveats that we need to be aware of, given that testing wasn’t widely available at the start of the pandemic?

Professor Stephen Barclay: So I think there is a caveat in the graph we looked at previously with the huge rise in care homes. That was the mortality was greatly increased in care homes. The proportion that were due to Covid-19 and the proportion that were not, that figure is open to – that proportion – thank you – that proportion is open to question – thank you – because it may well be that some of that peak in the blue bars, actually should be coded orange but we didn’t know because we weren’t testing. But we do know that loads more people, sadly, were dying in care homes.

Counsel Inquiry: Thank you.

In your report you’ve referred to a Marie Curie report in 2022 which found that people living in deprived areas are less likely to die in their preferred place and that there was evidence to suggest that that was a known inequality which was exacerbated by the pandemic. Do we know why that was?

Professor Stephen Barclay: You’re right. I mean, that Marie Curie report that I was involved with Professor Sleeman in writing was really worrying, that the proportion of home deaths increased in all socioeconomic groups but the proportion of home deaths increased particularly in the more affluent areas, markedly less so than the less affluent areas, and that inequality is concerning.

And Professor Sir Michael Marmot, who is our national expert on health and social inequalities has clearly has articulated that when the services are under strain, the people living in more socially deprived areas are often disadvantaged, and one fears that we’re seeing that principle at work again here, that they didn’t have appropriate housing or social support or financial resource or community services to support death at home. And that inequality is certainly concerning.

Counsel Inquiry: I’d like to go on now to consider palliative and end-of-life care during the pandemic but before we do so, by way of background, are you able to briefly explain what palliative care is and how it differs from end-of-life care?

Professor Stephen Barclay: Thank you, and I think we may come back to that later under the question of visiting a bit later.

So palliative care is understood as the care of people with progressive life-limiting conditions, irrespective of prognosis but based on need. End-of-life care – and there is a confusion here – end-of-life care, I think in the eyes of the general public, tends to be more that final period of life: Final days, maybe hours, maybe very few weeks of life.

NHS England policy describes end-of-life care as the last 12 months of life, and that’s the current policy view at the moment, but I think, in the light of some of the comments that have been received at this Inquiry, particularly from the care home setting, we may need to rethink that, because that caused confusion and upset because people were told that my loved one is on their GP’s end-of-life care register, which we’re encouraged to have, which is roughly broadly the last year of life, but the care homes were saying: yes, they’re not sufficiently end of life. And that was hurtful and confusing and it was the health service that was creating that confusion, I think.

Counsel Inquiry: And is it right that most people will receive end-of-life and palliative care in their home or in a care home?

Professor Stephen Barclay: Yes, so certainly palliative care, that final period of months or whatever of life is certainly at home. There may be episodes of admission to hospital. We have national mortality data that shows that 49% of all deaths post-pandemic are occurring at home and in care homes, a small proportion in hospices, 5% in hospices, and 43% in hospitals.

But I think it is important to add two things: that a lot of people receive hospice care who don’t die in a hospice, where they receive care in other settings and there are hospital palliative care teams, but most of that final months of life, possibly years of life, is at home.

And when people are at that very final stage, most of the care provided is by GPs, district nurses, or our colleagues in non – other specialities in hospital and, of course, in care homes.

Counsel Inquiry: Well, you’ve brought me neatly on to my next question, which is: who most commonly delivers this type of care?

Professor Stephen Barclay: Okay. It is what is called, maybe slightly clumsily, generalist care, but family doctors are specialists in family medicine, and geriatricians in geriatric medicine, et cetera, but it is the usual care team who is providing care for those people, and in care homes it is the care home staff, the nurses and the visiting GPs.

At home, in the community, in care homes and in hospital, there are specialists who are fantastic. I happen to be working in both areas.

But the majority of the care is given by people for whom that is not their sole job, if that makes sense.

Counsel Inquiry: Yes, it does make sense. What about the social care workforce? What’s their role in providing that level of care?

Professor Stephen Barclay: So the social care workforce, given that 21% of all deaths are in care homes, social care workforce hugely important in the provision of their care. And it’s easy to overlook the home care social care workforce who visited people’s homes.

So that workforce is really important.

And in the response to the pandemic, and perhaps more generally in health and care service planning, our social care colleagues, I’m afraid, are sometimes the poor relations, and overlooked, but they are absolutely critical.

Counsel Inquiry: I’d like to ask you some questions now about training for those professionals that are critical to that level of care.

Professor Stephen Barclay: Certainly.

Counsel Inquiry: So you have said in your report that outside of the education that doctors, nurses and the social care workforce receive, there is no mandatory training on end-of-life or palliative care; is that right?

Professor Stephen Barclay: That is, sadly, correct, yes.

Counsel Inquiry: What benefit do you think it could have brought during the pandemic if that training had existed before?

Professor Stephen Barclay: So, I mean, it’s there to a variable extent for student doctors and student nurses. My understanding is it’s not there at all for healthcare assistants in a uniform way, but we are expecting our resident doctors or senior doctors, our nurses and our health – our social care colleagues to be caring for people, and they haven’t been prepared in the knowledge or the skills or the attitudes in how to care for people, but they suddenly found themselves having to do so.

And in the care home setting, when there was less visiting and less visiting from health service colleagues, they found themselves really quite scarily isolated and having to do things that they hadn’t done in such an unsupported way before.

So it would have made a huge difference if they’d said, “Oh, yes, I’ve heard about that, I think I can have that difficult conversation”, for example.

Counsel Inquiry: Would you, therefore, support there being training, perhaps mandatory training, for the health and social care workforce in preparation for a future pandemic?

Professor Stephen Barclay: I think that’s absolutely essential, and that’s one of our core recommendations, and to make sure that that is mandatory training that is meaningful and helps people to prepare not just for the – how to use this drug, but for the psychological and other care of patients. And critically, of their families as well.

Counsel Inquiry: Moving on to a different topic now, and that’s around data, which is explained in your report as a gap in the systemic and routine collection of data in the area of end-of-life and palliative care, which therefore means that we don’t know how many people received or are receiving that type of care.

Is that the position across the UK?

Professor Stephen Barclay: Yes.

Counsel Inquiry: And what exactly is the impact of that missing data that you observe?

Professor Stephen Barclay: So we don’t know, as of today, who is currently receiving palliative care across any of the four nations, let alone who’s receiving care from specialists, or who’s receiving such care from our social care colleagues. It may be recorded in individual teams. It is in no way shared, it is in no way linked with our big national data sets. And we are in the dark.

There was obviously lots of research activity, but if we could more clearly identify and share that information and be able to track people through the health and social care system, which can be confusing, to make sure that we’re getting all the right people in at all the right times and having all the right conversations, that would be hugely important.

Counsel Inquiry: And what was the impact of that lack of data during the pandemic?

Professor Stephen Barclay: So it’s – one of the impacts was that, actually, if you asked the question of what was the experience of dying of Covid in a care home during the pandemic, or dying from non-Covid in the pandemic, we don’t know the answer to that question. And to ensure better linking up and, therefore, better coordination of care and better identification of, oh, we need to ramp up the support here, oh, we need to get some medication in place there. It tended to be reactive whereas the care for people approaching and at the end of life needs to be proactive.

What might happen next? What’s the plan? Have we had a conversation with the patient, if possible, if they have capacity, or with their next of kin? And that ties into things like advanced care planning and DNACPR conversations which we may come on to. That needs to be done in a proactive way, not in a “Oh, my goodness, we need to do that for hundreds of people”.

Counsel Inquiry: And you have referred to the use in England of the Quality and Outcomes Framework, are you able to briefly explain what that is and whether it is widely used and provides the necessary information you’ve been referring to this morning?

Professor Stephen Barclay: So that’s very interesting. So the Quality and Outcomes Framework is a part of the way that GPs are incentivised and paid, and it has been the subject of a lot of change over the years. Originally, GPs received a small amount of what’s called QOF funding for having a register of palliative care patients and meeting to review them. My understanding, in the latest iteration of the Quality and Outcomes Framework, that has now been removed, partly because it’s become better established practice. So it incentivised practices to seek to identify and plan, in the way that I’ve described, for their patients and receive part of their payment as a result.

Counsel Inquiry: Thank you. Do you know if there are equivalents in the devolved administrations?

Professor Stephen Barclay: I don’t know the answer to that question. I think I might be right in saying that the Quality and Outcomes Framework was a national framework rather than just for England, but I’m not 110% sure. Forgive me.

Counsel Inquiry: That’s okay. Thank you, Professor.

We started in your evidence talking a bit about the early pandemic period and where the focus was. If I may return to that for just a moment. You have described how there was very little published evidence to guide the pandemic response for palliative care services and I wanted to ask you whether you’ve been able to find any evidence of planning or preparedness at a national or a local level for palliative care during a pandemic.

Professor Stephen Barclay: In terms of a future pandemic?

Counsel Inquiry: Sorry, in terms of the Covid-19 pandemic.

Professor Stephen Barclay: Okay. So as a nation we were caught out when Covid-19 came upon us, and this is one example of how are we going to respond for the needs of these people approaching the end of their lives? There was some very impressive work that rapidly happened from the Association of Palliative Medicine; we described in our report work going on in Scotland, the – and in London and other areas, as well.

So numerous people were saying: how are we going to respond to the needs of people dying from Covid and the associated pressures of what if we run out of medicines, or there isn’t the workforce?

So we ramped up rapidly, but we hadn’t seen it coming, but then the health service hadn’t seen it coming.

Counsel Inquiry: And from your experience, are you able to help us with whether care homes and domiciliary care managers, as well, had the guidance and information they needed at the start of the pandemic and, if not, when they had that information, to support them and guide them through end-of-life and palliative care services during the pandemic?

Professor Stephen Barclay: A really important question, thank you. At the start of the pandemic, guidance was starting to be – when it initially started, one of the challenges from our research in my research group is that care home managers struggled with the almost daily changes in guidance and advice and regulations. And to try to keep up with that when, for understandable reasons, we were learning what we were dealing with, it was particularly challenging for our care home colleagues, where there was a plethora of advice in – and of course often they’re private organisations, so their organisation had advice as well as national government, as well as other organisations. So it was almost overwhelming at times, and forever changing. And some sort of more coordinated: okay, we’re in a pandemic, this is a group that’s going to produce authoritative guidance that’s going to flex quickly would be helpful.

Counsel Inquiry: I think you’ve referred in your report to the interim guidelines that were produced in Scotland?

Professor Stephen Barclay: Yes.

Counsel Inquiry: Do you know whether they were helpful and whether they’ve been evaluated in any way?

Professor Stephen Barclay: I don’t know of the evaluation. What I do know, and that was one of many examples where the need was recognised, they coordinated really quickly and they had a robust process of expert and rapid review. That was deeply impressive because we were learning as we went along how to respond.

Initially, there was real concern from our hospital reports that people would die with great distress from Covid-19, which was true in some hospital settings. It took us a while to realise that in the care home setting, in the frail, elderly population, that was much less common. It did sometimes happen. But a death from Covid for a frail, elderly person was more likely to be infection and fairly rapid, but with less agitation, progression to death.

Counsel Inquiry: So the system that you have referred to in Scotland, is that one that you think could be replicated across the UK in a future pandemic?

Professor Stephen Barclay: I think it would be very helpful to have set up in advance, when the next pandemic hits us, in terms of the symptom – end-of-life care for whatever the agent is: here is a group of people who are going to jump into action and, in collaboration, produce rapid, flexible guidance for the nation. That would be really helpful.

Counsel Inquiry: In Professor Sleeman’s report Fairer Care at Home, she concluded that the pandemic was “a stress test for palliative and end of life care”.

Are you able to help us with what she meant by that?

Professor Stephen Barclay: Yes, very happy to. And I think it was a stress test for all of the health services that suddenly we found ourselves in a situation where we were under enormous pressure, things were changing fast, and it exposed some of the weaknesses, and vulnerabilities of care as it’s provided at the moment suddenly became very starkly highlighted. And in that sense it was a stress test, it highlighted some things that were going well, but some things that were going less well, and therefore, in the spirit of this Inquiry, what we can learn to strengthen next time.

Counsel Inquiry: And we’ve discussed briefly the guidelines and how that could be improved in future, but would you support palliative care being included as part of pandemic planning in general, ahead of a future pandemic?

Professor Stephen Barclay: I think it’s absolutely essential. There are, in England and Wales, 550,000 people per year who die every year, and obviously with Scotland and Northern Ireland the figure is larger. So this is a part of our population who need care and will continue to need care. And therefore, we need to plan for how are we going to make sure that those people, let alone, if you will, the people dying from whatever this next pandemic agent is, how are we going to make sure that those people get really good care?

So it’s both and, it’s not either/or. Obviously we need to focus on ventilators and ITU and PPE and all the rest of it, but there will be people dying during the next pandemic. How are we going to make sure that they are not – that they are dying as well as possible, in the most supported way? And so, yes, it needs to be an essential part of planning for the next time.

Lady Hallett: Professor, forgive my interrupting, would it be unkind – I’m sorry to be so basic, but that the planning before Covid was about dealing with dead bodies rather than people before they’d died?

Professor Stephen Barclay: In what sense, my Lady?

Lady Hallett: Well, as in – because you know I’ve done a module on planning.

Professor Stephen Barclay: Yes.

Lady Hallett: When it came to end of life, I think as far as we could tell, the planning seemed to be very limited as to how you care for people as they’re dying, as opposed to how you cared for their bodies once they’d died.

Professor Stephen Barclay: Okay. For risk of infection and other sorts of things, that may well be the case. I mean, there has been decades of work on how to plan for the care of people who are dying in all sorts of settings, and the palliative care movement is extremely strong in this country, but it wasn’t particularly pandemic-focused.

Lady Hallett: Right.

Professor Stephen Barclay: Does that answer your question?

Lady Hallett: Yes, it does. Thank you.

Professor Stephen Barclay: Okay, thank you.

Ms Hands: Thank you, Professor.

I’d like to move on now to a different topic and that’s the use and administration of end-of-life medication, albeit at quite a high level.

But could you, perhaps, start by briefly explaining to us how the use of end-of-life medication changed during the Covid pandemic?

Professor Stephen Barclay: Yes. So certainly – there were, sort of, two aspects for this. There’s something that we describe called anticipatory prescribing which is where – this is long-established practice – where medicines are put in the home or in the care home for someone in case they need them in the future, so that the drugs are there, you need the clinician to administer the drugs, as appropriate. And one of the challenges during the pandemic was there was a great, considerable increase in anticipatory prescribing which is documented in some of our research studies. That then led to a concern around: are we going to run out of medications?

And there was a related concern to when someone needs – when someone is so ill that they can’t swallow medicines, they were needed by injection, are there going to be, particularly the nurses, in care homes or in the community, who are able to visit and administer? And those were the two concerns that arose.

Counsel Inquiry: Thank you. And perhaps if we could break some of that down now. Were there enough staff, and medical professionals during the pandemic to go into care homes or to go to people’s private homes to administer that medication?

Professor Stephen Barclay: There were, and we outline in the report with a map of the UK, there were reports of staff shortages, medication shortages and equipment shortages during the pandemic, which was concerning. Very concerning. And our care home colleagues were amazing, the way they stepped up, but they were being given an awful lot of responsibility to identify who was approaching the end of life, et cetera.

So there were times that we got very close to seriously running out of medication.

There was what I described as an outbreak of common sense which was a change to national pharmaceutical regulations which allowed a care home who had injectable drugs already prescribed for resident A who didn’t need them, but they weren’t prescribed for resident B who needed them now, previously it was not permitted to repurpose those medications. But in all four nations, everyone recognised that this is slightly crazy, the drugs are in the home, they’ve – in the care home, they’ve got the wrong patient’s name on. And so with appropriate safeguards, because these are controlled drugs, sometimes, there was a change so you could use someone else’s medication.

And that relieved some of the considerable pressures.

Counsel Inquiry: Are you able to help us with when that change came into force?

Professor Stephen Barclay: I can’t remember the date of that, I’m afraid. I’m pretty sure it was early on in the first wave.

Counsel Inquiry: Thank you.

Professor Stephen Barclay: And it was uniformly welcomed.

Counsel Inquiry: You have referred to the additional responsibilities that staff took on. Was there also an impact on family carers or people that were supporting their family members at home?

Professor Stephen Barclay: So, both in the care home setting and in the homecare setting, the answer to that is huge. So if I could start with the care home setting, clearly they weren’t able to visit, and for a care home resident who may well be very frail physically and/or cognitively, having family members who can visit not only improves the quality of their life and their final periods of life, but also someone who can advocate for them, and family members felt very, I think frustrated may be too gentle a word, by the fact that they weren’t able to fulfil their desperately wanted duty to their loved one.

And in the home care setting a lot more responsibility was falling to families of the person who was approaching the end of their life.

There was introduced something that had been in place before, which was encouragement for family carers to administer injectable medications for a dying loved one. That’s a very, very big ask. And some family carers felt able to do that under supervision. It tended to be particularly people with a clinical background. But to administer drugs to a loved one who is close to the end of life who dies shortly afterwards, I know, as a doctor, is emotionally very challenging. What it must be like for a family carer I think is very different …

And we need to ensure that that doesn’t happen, simply because there aren’t enough nurses available to visit. And our community nursing workforce is very stretched, and out-of-hours is very, very, very stretched and that’s a structural kind of stress test that we need to address for the future.

Counsel Inquiry: Do you think there was enough training, support and education, both for care professionals but also for carers in the community, family carers, as well, around how to administer this type of medication before the pandemic, and was there any delivered during the pandemic?

Professor Stephen Barclay: Okay. So family care administration of these injections has been in place in Australia and other very rural areas, and in some rural areas of the UK for a while, pre-pandemic. It became a bit more prominent during the pandemic. To be honest, our understanding is it was actually relatively little used because, mercifully, our care home – our community nursing workforce and our social care workforce were not so depleted that they weren’t able to continue that role.

Counsel Inquiry: And I think you’ve referred in your report to a recommendation from NICE in 2011 that everybody in England and Wales should have access to a 24/7 designated palliative care telephone advice line. You have included in your report Marie Curie’s examination of the availability of that advice line for patients and informal carers at home during the pandemic, which found that only one-third had consistent provision, and a quarter had no provision at all.

I think you’ve made it quite clear in your evidence as to why it’s so important to have that type of support and information available. So did that improve during the pandemic? I think you’ve referred to resources being pooled.

Professor Stephen Barclay: Yes, so one of the things that was nice to see, if you will, during the pandemic was institutions working together and where there was a shortage of equipment or respiratory physicians, say, in one hospital versus another hospital, suddenly institutional walls came down and people moved. And similarly with telephone advice lines, people said: “Look, you know, we can’t do it 24/7 but if we gang together then we could do.”

So again, that is another kind of outbreak of common sense: let’s do things together for the benefit of patients and let’s forget the fact that we’re working from different organisations. This is about patients. And so that did begin to happen.

One of the problems with NICE guidance like that and many of the other bits of guidance that we have documented is that unless there’s resource associated with the “We recommend this” in a resource-constrained health and care service, it’s very tricky to implement, and there are a lot of, sort of, “must dos” coming down to our integrated care systems and other people and the leaders are really struggling with “Well, how do I do this and that and the other when, actually, we have no additional resource?”

And I think we flag that in our report, that if this is really, really, really important – which we would argue it is – then the way to make sure it really happens is to say: right, we’re going to resource it.

Counsel Inquiry: Would you support resources being provided in a future pandemic for such a service to be available?

Professor Stephen Barclay: Definitely. And I think our recommendation would be let’s get these up and running now because patients need it now. And then that will mean that we’re robust and ready, when – I mean, the Marie Curie report reduced a huge increase in the callers to their advice line. I mean, fantastic that they did that. The need was there. Let’s get it in place now so that it’s ready to ramp up.

Counsel Inquiry: I’d like to ask you now some questions about the CovPall care home study, which was set up late in 2020 to investigate the response of UK care homes in meeting the needs for palliative care and end-of-life care during the pandemic, and it included an online survey for care home managers and interviews with staff in 2021.

Can you briefly summarise the findings of that study for us.

Professor Stephen Barclay: Yes, of course. I was associated with that study. It was very concerning, what it identified, that – for example, that the care home managers and staff really struggled with a lack of recognition of their essential role, both by government, by the public and from the media, leading, for example, for them to being low priority for PPE and testing. They were down the bottom of the list. And that’s not okay.

We identified in that study that relationships-centred care, which is so central to care home care, particularly end-of-life care in a care home, was fundamentally disrupted. How do you have sensitive conversations when you’re in a face mask or in PPE or through an iPad or through a window?

Now, some of this may have been necessary but it was deeply traumatising to residents, families, and to staff.

And care home managers felt underwhelmed, unsupported, and, as I mentioned, bamboozled by the constantly changing guidance.

Counsel Inquiry: And I think, from that study, you identified that, in order to maintain a relationship-centred care, it is contingent on key pillars, three key pillars being present: the first being the integration within health and social care systems, including primary and palliative care, the second being digital inclusion –

Professor Stephen Barclay: Yes.

Counsel Inquiry: – and the third being workforce support.

Is it right to infer from your evidence a moment ago that none of those things were present during the pandemic?

Professor Stephen Barclay: They were certainly not adequately present. And care homes, in terms of services, in terms of digital and in others, kind of found themselves at sea and isolated. Yes.

Counsel Inquiry: And the Inquiry has heard about the increased use of technology, and your report has explained how that did extend to end-of-life care. Were there any barriers preventing its effective use to provide end-of-life –

Professor Stephen Barclay: Yes.

Counsel Inquiry: – or palliative care in care homes and in the community?

Professor Stephen Barclay: Certainly in care homes, wi-fi was extremely variable in the care home sector, sometimes absent.

It was relatively easier to gear up and get iPads available, but a frail, elderly person who may have some cognitive impairment, who’s not remotely familiar with what an iPad is, found it hugely distressing to have the face of a loved one and not recognise or – well, why are they not here? So it was very challenging.

And the other related IT issue is that social care records are not linked with healthcare records.

Counsel Inquiry: Were there any positives to come out of the increased use of technology in this area?

Professor Stephen Barclay: We did learn that it is possible to communicate certainly reasonably effectively with colleagues without being physically in the same room, that you could have meetings. We discovered the various platforms that are in use, which really hadn’t been in use before. But you could discuss patients, you could … I did ward rounds in care homes with the manager or the lead nurse, going from room to room, and it was – I found it really distressing that there was a patient who was, from what I could see on the screen, in the very final few hours of life, and there was the family next to them, but I couldn’t be there.

But the care home staff were the heroes. They were there.

And if I’ve found it distressing as a clinician, what was it like for families who were at times, when visiting wasn’t allowed at all in some settings, saying goodbye over an iPad? That was really difficult.

Counsel Inquiry: Thank you.

I’d like to move on to a new topic now, and that’s advanced care planning. Can you briefly explain what advanced care planning or anticipatory care planning, as it’s referred to in Scotland, is and why it is so important.

Professor Stephen Barclay: So certainly, it has a number of different names, but this is something that is broadly recommended, that it’s a process of discussing with an individual and those close to them, their wishes and preferences for the future. And it’s an offer of a conversation about “what if” and “what when”. It requires very sensitive communication skills, and some people will indicate, “not now” or “not with you”, or “not today, thank you”, and these are often conversations over a period of time. But it can be enormously helpful to get a sense of what’s important, particularly if, in the future, that person should lose decision-making capacity. So we know that what was important to this person was whatever it was. And to then, in some sort of document – and there are a range of different documents out in the country – which is a patient-held document which documents: my understanding of my condition, my preferences for the future, and the clinical recommendation, and in the form I’m most familiar with called ReSPECT, right down in the bottom right-hand corner is the shared decision about resuscitation, but it puts resuscitation in the context of “We’re on the same page, we understand what’s happening, and let’s do some planning together.”

Counsel Inquiry: You’ve described the ReSPECT forms in your report as being much more about – much than just resuscitation decisions –

Professor Stephen Barclay: Yes.

Counsel Inquiry: – and completing a DNACPR form. So is that what we can take from your evidence there?

Professor Stephen Barclay: Very much so. It puts the DNACPR decision in the context of the wider discussion. Critical.

Counsel Inquiry: And you mentioned a moment ago, and in your report, how there are many different types of forms and systems used to record these discussions. Are any forms better or more helpful when recording such decisions, perhaps for the patient’s wishes but also for the professional that’s completing the form?

Professor Stephen Barclay: I find that a really difficult question to answer. It is, I think, an issue that there is a variety of forms. Many of them have been locally developed, some of them have been more widely developed. There’s a Scotland form, there’s a London form, there’s the ReSPECT form. I don’t think I can comment on “This one is definitely better than the other ones”. The content is all pretty much the same in terms of, you know, what I’ve outlined for the one that I’m most familiar with.

Counsel Inquiry: And you have referred to there being online tools and resources available in Scotland to support staff –

Professor Stephen Barclay: Yes.

Counsel Inquiry: – to have person-centred anticipatory care planning conversations.

Professor Stephen Barclay: Yes.

Counsel Inquiry: Do you know if they are also available in other parts of the UK?

Professor Stephen Barclay: Absolutely, yes, yes. If you, as again, I’m more familiar with the ReSPECT, there is a plethora of online resources around holding the ReSPECT conversation and the London form, as well, has similar online resources. So yes, absolutely.

Counsel Inquiry: And then, briefly, if I may come on to best practice, when it comes to who should be initiating conversations about end-of-life decisions generally, and also during a pandemic as well.

Professor Stephen Barclay: Thank you. Really important question. It needs to be a senior clinician, and there is good research evidence that these conversations are much more appreciated by patients if it’s with someone they’re familiar with, with whom they have a trusted relationship previously established. And in the community setting that will often be the general practitioner. But it can be a suitable senior nursing colleague or care home manager colleague who can have these conversations.

The important thing is that this person has got good communication skills and listens very carefully to what the person is saying, rather than doing it in a rush so that we can get the resuscitation decision signed off. And that is – yes, the focus is on the conversation, not the form.

Counsel Inquiry: And with a focus on adult social care –

Professor Stephen Barclay: Yes.

Counsel Inquiry: – do we know if that was always able to happen during the pandemic?

Professor Stephen Barclay: It was really challenging. A number of sites, well, in a number of – in adult social care, a number of people did not have any form of advanced care planning conversation or document prior to the pandemic. And then there was a sudden, “Oh, my goodness, we’d better get some documentation in place quickly”, and that was challenging because often they were remote, and having a sensitive conversation remotely is difficult. Or it was behind PPE, and that’s pretty difficult because facial expression is lost.

And when they’re done in a hurry, there was evidence of misunderstanding, that this was about discrimination because someone is elderly or has dementia or is about rationing. And there is evidence that the quality of those conversations deteriorated.

Again, it’s about being – if only we’d been more proactive, we wouldn’t have had to have been so unsatisfactorily reactive.

Counsel Inquiry: And I think you’ve said that in your report at paragraph 229, you say this:

“The pandemic clearly identified the need to embed advanced care planning into routine clinical practice so that the sensitive conversations can take place before crises arise. Regardless of the form used, advanced care planning discussions required time, mainly to take place over several conversations and should involve family members wherever possible.”

Professor Stephen Barclay: Yes.

Counsel Inquiry: Can you briefly just explain to us why it is so important to have family members or loved ones involved in those discussions?

Professor Stephen Barclay: People are not – people are not – people usually want to make these decisions in collaboration, in conjunction with those nearest and dearest to them. You know, people rarely make these decisions on their own. People are not an island in this respect, is what I was saying. So there’s good evidence that, you know: happy to talk about it, but like to talk to my partner, my children, or whoever is important to me.

And important for those next close to the patient to be party to those conversations, because should their loved one then lose decision-making capacity, they know what their loved one’s wishes and preferences were. So some people may say, “No, I want just to have a conversation on my own, thank you.”

Again, it is highly patient centered.

Counsel Inquiry: Do you have any suggestions for how advanced care planning could be embedded into routine clinical practice in future?

Professor Stephen Barclay: Yes, I do, and I think actually advanced care planning is wider than just the palliative and end-of-life care space. You know, we’re all encouraged to have wills and to have a lasting power of attorney in place, so it can be entirely appropriate to have these sort of conversations before there is any life-threatening illness, but certainly when a life-threatening, life-limiting illness is identified and we’re starting to think about do we need to begin to incorporate a palliative care approach, one of the things to be thinking about is, you know, the what ifs and the what whens. So, as a team: should this happen or should that happen, what are we going to be do? But that patient needs to be involved in that.

So early on: how much does this patient understand? How much do they want to understand? And how much do they want to be involved in their planning for the future?

So kind of routine-ise it.

Counsel Inquiry: Moving on to a slightly different topic, and that’s DNACPR notices.

Professor Stephen Barclay: Yes.

Counsel Inquiry: The Inquiry has a substantial body of evidence on this topic and you have provided a very helpful explanation in your report of best practice. I’d like to focus on the changes in their use in adult social care and public understanding of them during the pandemic.

So, starting with the public understanding, what do you observe that to have been during the pandemic and around DNACPR notices and decisions?

Professor Stephen Barclay: I think the CQC report was very illuminating. And one of the things that came out of that was a real concern amongst the public that decisions were being made in a rushed way, remotely – sometimes even without consultation with the individual or their family, and that this was then being perceived as discriminatory, as rationing, as a decision about whether or not to admit to hospital. Because a DNACPR decision is about do not attempt cardiopulmonary resuscitation; it is not the same as a do not admit to hospital, because someone with a DNACPR in place who fractures their neck of femur, it may be entirely appropriate to admit them to hospital – it may not be – but they are often conflated.

And people were frightened that decisions were being made about me without me, or without my loved one, if they didn’t have capacity. So I think people were scared.

Counsel Inquiry: Do you have any views on how, perhaps, that public understanding and education could be improved in future?

Professor Stephen Barclay: I think there needs to be some sort of clear communication with the public of: what is an advanced care planning conversation? What’s it about? What’s it for? Why is it helpful? And more particularly, what is it not about?

And in my area of Cambridgeshire and Peterborough, if I may mention, we’re actually thinking of a bit of a public campaign which we’re thinking of calling “Expect ReSPECT” and encouraging the public at any stage of life to come and see their GP and say, “I’d like to talk about this thing called ReSPECT form, please”, or if in London, some – somewhere else. Kind of normalising it. What is this about? But there are myths, there are fears and they need to be addressed at an individual level but I think at a, sort of, public media level.

Counsel Inquiry: And before moving on from this topic, I’d like to ask you about an example of a communication that was sent to individuals in the social care sector about adult social care planning during the pandemic. And this is a letter, sent by a GP surgery to all residents in a care home, disclosed to the Inquiry, which I believe you’ve seen in advance. It’s INQ000505520, page 1.

Professor Stephen Barclay: Yes.

Counsel Inquiry: Thank you.

The first – I just want to take you through a couple of paragraphs within that letter. The first paragraph states that:

“As the COVID-19 pandemic continues to worsen, it is important to plan well for your/your relative’s future care. Getting a good understanding of your wishes will help carers and clinicians to give you the care you want, where you want it.”

And if we may go down to page 2, please under the heading “Hospital Admission”, thank you.

And it stated here:

“For other reversible conditions where naturally a hospital admission would be warranted, serious consideration should be taken around what life prolonging treatment you/your relative would want and therefore whether a hospital admission is wanted.”

And then down, please, on page 2 in relation to CPR. It states:

“The chances of success in CPR for a patient with advanced disease or frailty are virtually zero. CPR is therefore not appropriate for the vast majority of these people and should only be attempted if it is considered that it may be successful. For these reasons, many people decide in advance not to have CPR, and choose to be allowed to have a natural and peaceful death.”

And then on page 3, we don’t need to go to it, thank you, is an advanced care plan template.

Professor, do you have any comments or concerns about the content, language and tone of this letter?

Professor Stephen Barclay: Yes, on all fronts. And I can’t imagine the impact of a next of kin receiving a letter like that. Yeah.

Counsel Inquiry: Thank you.

Professor Stephen Barclay: I … I really struggle with that. I wouldn’t phrase conversations in this way either. You’ve got to start with where the patient is, and start from there. Yeah.

Counsel Inquiry: Moving on now –

Lady Hallett: Sorry, just before you do.

Ms Hands: Yes.

Lady Hallett: I’ve heard a great deal about how decisions, for example DNACPR, should be individualised.

Professor Stephen Barclay: Yes.

Lady Hallett: What this letter seems to be doing is lumping people together. Is that one of your concerns?

Professor Stephen Barclay: A huge concern. Yes.

I don’t know the context of this and whether this was – it says it’s from the Royal Society of MENCAP, whether it was possibly to a learning disability setting, which is even more worrying, but yes, I think it is – it is very scary. It is a blanket form of decision making, which goes against all the core principles of Good Clinical Practice.

And it may be that for an individual, after discussion, the outcome would be not for resuscitation. But it must be on an individual basis, rather than: this population have dementia, or this population have learning disability, therefore no.

I mean, that is – I’m sorry, I’m going to use the word “shocking”, and – well, I don’t apologise for using the word “shocking”. It’s, um … yes, thank you.

Ms Hands: Thank you.

You have stated in your report that there was evidence that doctors were making more DNACPR decisions during the pandemic, including in adult social care; is that correct?

Professor Stephen Barclay: That’s the evidence, that there was a waking up to: we’ve got people in adult social care in whom there is no CPR decision documented – and the pandemic woke people up to the fact that the advanced care planning conversations had not happened – but it may be that in very short order we’re going to have to make decisions.

Counsel Inquiry: Would you support training around DNACPR decisions and conversations, and perhaps as part of the training and education that we were discussing at the very start?

Professor Stephen Barclay: Absolutely. I think this is an absolutely core ingredient. And one of the most important things, when you’re having these sensitive conversations, is: can you tell me what’s important to you? And people surprise us with what’s important to them.

And when time is short, our agenda is what’s important to you and your loved one. And if it’s a trip home for two hours, well, okay, let’s see if we can organise it.

Counsel Inquiry: Lastly on this topic, you have referred to the CQC report –

Professor Stephen Barclay: Yes.

Counsel Inquiry: – in your evidence this morning. There was no systemic – sorry, systematic evaluation of DNACPR form usage in other UK nations. Is that something that you think should have been undertaken?

Professor Stephen Barclay: So my understanding is the CQC report was just for England alone; is that right?

Counsel Inquiry: Yes.

Professor Stephen Barclay: I find it difficult, to be honest, to answer that question. There may well have been other concerning practice that wasn’t picked up in the CQC report in England. I genuinely don’t know the answer, or whether – and our colleagues in the room may be better able to answer that question – but whether the CQC identified issues that were remarkably similar in all four nations, I’m sorry, I don’t know.

Counsel Inquiry: No, thank you, Professor.

Finally, you’ve set out a number of actions taken by governments across the UK in relation to this area since the pandemic in your report. In general terms, have the updates been positive for the patient experience and for staff, and is there any nation in particular where action has been lacking?

Professor Stephen Barclay: We sort of scoured the literature for, sort of, recommendations, and they – the pandemic in multiple ways has been a wake-up call and the palliative and end-of-life care community it’s been another wake-up call. So my perception is that both national organisations and the four nations have been very active in seeking to generate up-to-date recommendations, which has been very valued and very welcome.

Counsel Inquiry: At paragraph 126 of your report you say this:

“While some improvements are evident, there has been little if any systematic evaluation of the implementation of these initiatives …”

Professor Stephen Barclay: Yes.

Counsel Inquiry: “… and the lack of dedicated funding with which to retrieve progress has hampered progress.”

Professor Stephen Barclay: Yes.

Counsel Inquiry: “Policy priorities must be evidence-based and adequately resourced; and monitoring of progress through nationally collected data … is essential to understand if policies improve care.”

Is that an accurate summary of the position today?

Professor Stephen Barclay: I think it remains a very accurate summary. There are a lot of guidelines, advice, really helpful recommendations, many of them actually at quite a high level, and that the palliative and end-of-life care space over the last 30 years has had multiple, multiple, multiple reports, and we don’t genuinely know how much traction that has had.

The amendment to the Health and Social Care Act 2022, that introduced a requirement for commissioning bodies to commission appropriate palliative and end-of-life care services is another example. It was absolutely brilliant that Baroness Ilora Finlay negotiated that one through the Commons, or led that negotiation through the Commons. It did not come with additional funding. And I know that a number of senior executives of integrated care boards in this country have said, “This is another of the list, Stephen, of ‘should dos’ when there’s no additional resource and it’s a problem.”

And certainly an evaluation is urgently needed, which might then be a lever for change.

Ms Hands: Thank you, Professor.

My Lady, those are all my questions.

Lady Hallett: Thank you very much.

Ms Morris.

Ms Morris is just there.

Questions From Ms Morris KC

Ms Morris: I don’t know if my microphone is on?

Professor Stephen Barclay: Good morning.

Ms Morris KC: I ask questions on behalf of the Covid Bereaved Families for Justice UK. Just two topics, please, to explore and maybe ask you to expand on.

Professor Stephen Barclay: Certainly.

Ms Morris KC: The first, you’ve already touched upon the CovPall Care Homes study with Counsel to the Inquiry. I just wanted to explore with you some of the limitations of that, please, and whether any further research is required.

You highlight in your statement that in that study, only a very small number of care homes were surveyed in Scotland, Wales and Northern Ireland?

Professor Stephen Barclay: Yes.

Ms Morris KC: And there is an absence from patients, families, or staff, other than care home managers?

Professor Stephen Barclay: Yes.

Ms Morris KC: So, in your view, is there a need for further research to identify and study the experiences of those residents and family members during the end-of-life care period in the pandemic?

Professor Stephen Barclay: The answer is I’m sure that would be helpful. The CovPall Care Homes study that I was partly involved with was one of a series of high-priority studies commissioned early on in the pandemic. And yes, it had limitations: it was predominantly England, and we didn’t hear the voices of those important people that you mention. And we needed to hear those voices, I would agree.

Ms Morris KC: Thank you.

My second topic is around end-of-life treatment in the community, outside of care homes and hospitals.

Professor Stephen Barclay: Okay.

Ms Morris KC: Because many of the Covid Bereaved Families for Justice bereaved families are concerned that their loved ones were denied access to appropriate end-of-life treatment in part because they died at home –

Professor Stephen Barclay: Okay.

Ms Morris KC: – and it wasn’t possible during the pandemic to arrange for doctors and nurses to come out and see them.

Is that a concern that you recognise? And if so, what can be done in the future to ensure that there is that access to appropriate end-of-life treatment at home?

Professor Stephen Barclay: I think the first thing to say is I do recognise that it was very tough for people. My understanding is that our community nursing colleagues were, on the whole, continuing to visit people, because community nursing is hands-on care that is difficult to do remotely. They may well have been under-resourced, and response times may well have been reduced.

General practitioners did, largely, move to remote consultations, under guidance in terms of infection control, et cetera. This is one of the real problems. And I think there is no question that certainly, when it comes to palliative and end-of-life care, a remote consultation is nothing like the same as an in-person consultation. I described my experience of it in a care home, and that was some people’s experience.

Ms Morris KC: Thank you very much.

Professor Stephen Barclay: And it wasn’t good.

Ms Morris KC: So, looking forward, what could be done to improve that access in all cases in a future pandemic?

Professor Stephen Barclay: I think we were between a rock and a hard place, because there was real concern that visiting professionals, that that visit was not without risks of introducing infection, or introducing infection when they moved on to visit the next person, because PPE is not a hundred per cent. Really, really difficult before there was PPE available.

So if we can find a way to ensure that visiting is as low risk as possible – I don’t think it will ever be zero risk, but one of the important aspects of caring for someone at the end of their life, and their families, is a physical presence, and a digital presence is not the same.

Ms Morris: Thank you very much, Professor.

Thank you, my Lady, those are my questions.

Lady Hallett: Thank you.

Mr Stanton.

Mr Stanton is over there.

Questions From Mr Stanton

Mr Stanton: Thank you, my Lady.

Good morning, Professor.

Professor Stephen Barclay: Good morning.

Mr Stanton: I ask questions on behalf of the Covid Bereaved Families for Justice Cymru.

Professor Stephen Barclay: Yes.

Mr Stanton: I have a question in respect of DNACPR, which you’ve already dealt with at some length.

Professor Stephen Barclay: Okay.

Mr Stanton: And the question is, going forward, how do we ensure that DNACPR notices are not interpreted as a proxy for “Do not treat”?

Professor Stephen Barclay: Thank you. A really important question. Forgive me if I say a little bit about the ReSPECT document. That was developed by a close colleague of mine, Dr Zoë Fritz, who researched standalone DNACPR documents and identified significant harm from the inpatient setting that people who were – for DNACPR were not turned, et cetera, et cetera.

And it was precisely, as you say, identified as almost do nothing, and that – out of that research Dr Fritz developed in our locality the ReSPECT form, which puts it very clearly in the context of that broader discussion. So that’s – one answer to that is don’t have standalone DNACPR conversations, have them in a broader, ACP conversation.

And I think there needs to be patient and family and public explanation, and that this is simply a decision that should this patient’s heart stop, we will not attempt cardiopulmonary resuscitation, but this doesn’t exclude anything up to – of necessity, it doesn’t exclude anything up to and including that.

And I mentioned, you know, if someone falls and fractures their neck of femur, because they’ve got a DNACPR, well, yes, okay, but they may well need to have it pinned.

I don’t know if that helps.

Mr Stanton: Yes, very helpful.

Professor, if I could just give you an example of the concern of the group I represent.

Professor Stephen Barclay: Yes, of course.

Mr Stanton: A group member who has provided a witness statement to the Inquiry who is herself a healthcare worker and understands the supposed limitations of DNACPR, was asked to provide one in respect of her mother, who was suffering from dementia. She was very happy to do so, accepted entirely that CPR was not the right way forward for her mother, and yet, despite that, she had real concerns that in doing so, she would adversely impact the care that was subsequently provided to her mother.

Are there any other ways in which assurance can be given to the public around this process?

Professor Stephen Barclay: I can really understand your colleague’s concerns, because this misperception, as in other aspects of end-of-life care that we haven’t touched on today, are common, and need to be addressed, not only with the patient and the family, but with their health and social care team around the patient. So what is the significance of this document? And what is not the significance of this document? And I think we need a national, public conversation around this. That yes, we don’t want people inappropriately having CPR because it is not pleasant, and undignified, but let’s address the potential side effects that are really concerning.

Mr Stanton: Thank you, Professor.

Thank you, my Lady.

Lady Hallett: Thank you, Mr Stanton.

And Ms Jones.

Ms Jones is there.

Questions From Ms Jones

Ms Jones: Thank you, my Lady.

Good morning, Professor. I ask questions on behalf of John’s Campaign, Care Rights UK and The Patients Association and my questions this morning focus on the role of loved ones in the provision of palliative care and end-of-life care.

Professor Stephen Barclay: Yes.

Ms Jones: In your report at paragraph 53 you identify that family carers play a crucial role in the delivery of palliative and end-of-life care and that their role is particularly important for people with dementia or learning disabilities. I wonder if you could help us with a bit more about what contribution family carers make in those circumstances to the delivery of care and the impact on patients if their family carers are not able to be present?

Professor Stephen Barclay: Thank you. I don’t think we can possibly overstate the importance of the family and carers, if we can use that term, the people of importance to the individual. In all situations, but particularly where we have someone who is unable to advocate for themselves or articulate for themselves, then the role of family and carers as the spokesperson, as you will, I mean, they may have a lasting power of attorney of either of the two forms and therefore have a legal ability to speak for the person, but even if that isn’t in place, they know the person best. And even when there is no LPA in place and what’s called a best interests decision is being made, it is incumbent on the clinician in that situation who is making a decision to consult with the family in terms of what would have been important to their loved one.

So I think that’s important.

Actually, the quality of life for someone in a care home, or at home, for weeks, months, years, is critically dependent not only on the staff but the family and people around them, and the inability to visit – we can understand why that was imposed – was hugely, hugely distressing to care home residents, and very hurtful if they were unable to – perhaps to fully understand why their loved one wasn’t able to visit. Because at a time when they felt most vulnerable, and maybe to some extent realised that they were approaching the end of life, people want their nearest and dearest.

Ms Jones: Thank you. You do set out in your report some of the identified negative impacts of the visitor restrictions, including deteriorating physical health outcomes for patients –

Professor Stephen Barclay: Yes.

Ms Jones: – such as decreased nutrition and physical pain, and you also note that mental health was also severely impacted. Do you agree that the harm that was caused by the visiting restrictions could and should have been recognised earlier than it was? And if so, what mitigations could have been put in place to reduce the harm that was caused?

Professor Stephen Barclay: Thank you. That’s a really important question.

I think there is no doubt that harm was caused. The visiting restrictions, we know why they were put in place. And as I mentioned earlier, there’s – I wasn’t a decision maker, but there was – we didn’t want to have – we couldn’t have had totally free visiting, because of the risks involved, and whether that balance was struck appropriately, I think, is open to question, and whether it was struck appropriately early on is also open to question.

And one of the other things that we raise is the time when the visiting restrictions were really tight and the exemption was made when someone was, quotes, “end of life”, was, as is highlighted in one of the family carer’s reports, a source of extreme confusion and distress. And that was, I think, deeply problematic, but to allow the last one or two or three final visits in the – I think the better phrase would have been “final days of life”, if that’s helpful.

Ms Jones: Thank you.

Professor, listening to what you say, I wonder if some of the harm that was caused might have been overcome or prevented if family carers were understood as a core part of a patient’s care team. Is that something you’d agree with and that you think would be an appropriate way of understanding the role of family carers?

Professor Stephen Barclay: I think there’s no question that family carers are a core part of the care team, and therefore need to be able to access their loved ones. And it was hurtful for all concerned that that was not possible. And both in a care home setting, where there are professional carers already, but maybe particularly, actually, in the homecare setting, where family carers do the huge bulk of the care of a loved one towards the end of their lives.

The doctors and nurses visit, but the family are there all the time. They are the lynchpin. I don’t know if that helps.

Ms Jones: In your report, you refer to a qualitative study by Kerry Hanna and others on end-of-life care in UK care homes during the pandemic, and their study identifies issues of inconsistent communication between health and social care settings and family members, and a loss of control, then, that patients and their family members had over their care plans.

The article’s conclusion is that national guidance should provide for a minimum level of contact between people at the end of their life and their relatives, but it should be offered equally to family members, and that part of its role should be to support their grieving and avoid subsequent negative impacts to their emotional wellbeing. Is that a recommendation that you would agree with?

Professor Stephen Barclay: Broadly, yes. Absolutely. Because the trauma for family carers was considerable. My mother-in-law died in a care home from Covid in the pandemic. My wife and my son, as immediate blood relatives, were able to visit in her last day. I was not able to. And, yeah, I know, in that small way, some of the pain.

It is so important that we involve family and carers as much as we possibly can. The infection risk, I think, is the – the thing we didn’t know, how great it was, certainly at the start of the pandemic. And visiting became a little bit easier, certainly once we had had vaccination and things.

So I think there was a lot of fear early on in the

pandemic, and certainly care homes, I’m aware of one

large care home in my area where, in the course of

a week, a third of the residents died. And it was

utterly, utterly devastating.

And we need to plan. We need to think very

carefully, balancing appropriate infection control with

optimum safe family and carer support, as far as

possible, in person. If that’s helpful.

Ms Jones: Thank you, Professor, and I’m sorry to hear about your mother-in-law.

Professor Stephen Barclay: Thank you.

Ms Jones: My last question today, then, is about slightly earlier in the process of providing palliative care to people.

You say at paragraph 35 of your report that there’s a need at the early stages of life-limiting illnesses for doctors and nurses to initiate conversations about the patient’s clinical condition and their future possible trajectory. And you note that these conversations require highly developed and sensitive communication skills and that they must be responsive to the wishes of the patient and their family members.

How did the exclusion of family members from health and care settings affect the ability of care teams to have these conversations effectively during the pandemic?

Professor Stephen Barclay: Very significantly. Very significantly. Because I think I’ve emphasised already how patients are not an island, that many people want to have these conversations in conjunction with those important to them, because that’s, you know, these are some of the biggest decisions in life. And for a person to be having, a professional to be having this conversation without family involved, possibly remotely, let alone in the blanket form that we have seen, goes against all best practice.

Ms Jones: Thank you very much, Professor.

Questions From the Chair

Lady Hallett: Thank you very much.

Professor, thank you very much for all your help with the Inquiry.

Professor Stephen Barclay: My pleasure.

Lady Hallett: Can I just ask, I know that palliative medicine is recognised.

Professor Stephen Barclay: Yes.

Lady Hallett: Do you think it’s sufficiently recognised?

Professor Stephen Barclay: Gosh, what an interesting question.

Lady Hallett: Or is it becoming more so?

Professor Stephen Barclay: It is becoming more recognised. It’s a – in the medical world, it is an established medical specialty. Its rewards and challenges are increasingly recognised.

And it’s important as we have an aging and increasingly

multi-morbid society, because end-of-life care comes to

all of us eventually, and we need to be doing all that

we can to make sure that it is – we may not be able to

affect the outcome, but can we influence the journey?

Lady Hallett: Well, I’m really grateful to you, obviously

for the work that you do for those who are at the end of

their lives, and I’m very grateful to you and your

colleagues, Professor Sleeman and Dr Peeler, for their help in preparing the report. Thank you very much indeed. We’ll break now until quarter to.

(11.30 am)

(A short break)

(11.47 am)

Lady Hallett: Ms Carey.

Ms Carey: My Lady, the next witness is Ms Catherine Griffiths.

Ms Catherine Griffiths

MS CATHERINE GRIFFITHS (sworn).

Lady Hallett: Ms Griffiths, thank you very much indeed for joining us and helping the Inquiry. If at any stage you find you can’t see or hear us, please put up your hand or indicate that there are problems.

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

Questions From Lead Counsel to the Inquiry for Module 6

Ms Carey: Ms Griffiths, good morning. I’d like to ask you some questions, please, about your father, Group Captain Harold Griffiths.

Ms Catherine Griffiths: Thank you.

Lead 6: And you set out in your statement that he was a Welsh speaker, a maths scholar, a lover of rugby and golf, a singer, and most of all, someone who absolutely adored his family.

And so can I start, please, with a little bit of background to him. And you say, I think, that he joined the RAF, initially wanting to be a pilot; is that right?

Ms Catherine Griffiths: That’s right. But he was too tall to be a pilot. You need to be under a certain height because of the ejector seat. Your legs need not to be too long.

Lead 6: And he was, I think you say 6’4” tall?

Ms Catherine Griffiths: Yes, that’s right. He was a tall man.

Lead 6: So he abandoned his plans to become a pilot, but became a navigator in the RAF; is that right?

Ms Catherine Griffiths: That’s right, and it probably suited his exceptional mathematical mind rather better.

Lead 6: Right. Dealing with his, sort of, personal life, he married your mum, but unfortunately she died when you were a baby.

Ms Catherine Griffiths: That’s right. My father was no stranger to loss. Liz, my mother, died when she was 23 and Dad was 27.

Lead 6: But he was fortunate to find love again; is that right?

Ms Catherine Griffiths: That’s right.

Lead 6: And married the woman who became known to you as a second mum?

Ms Catherine Griffiths: That’s right. She was my mum. She was the only mum I knew.

Lead 6: And they spent their lives together but your mum died in 2018, so your father was widowed for a second time?

Ms Catherine Griffiths: Yes, Dad had been diagnosed with Alzheimer’s disease in his early eighties and Mum was his carer, so her loss not only hit him hard, but meant that he had to then go to live somewhere safely. He couldn’t look after himself safely.

Lead 6: No. And I think you said that he then went to live in a care home in Essex –

Ms Catherine Griffiths: That’s right.

Lead 6: – and stayed there until February 2020, when you brought him back to his native Wales.

Ms Catherine Griffiths: That’s right. I thought that it would be good for his cognitive function to speak his first language. And I used to be a nurse, so I researched very carefully the care homes around here, and chose one where I thought he would be safe, well looked after, and also have fun.

Lead 6: Yes. And so he came back to Wales in February 2020, and I know it was only for a little time before we went into lockdown, but whilst he was in the home for the month before we went into lockdown, what was he like in the home?

Ms Catherine Griffiths: He loved it. He settled in very well. They were welcoming. He was looked after and spent time with Welsh speakers. I could visit him, which I did pretty much every day, take him out in the car, just show him around the familiar places from his childhood and his early life.

Lead 6: But sadly that was cut short when the pandemic struck and indeed lockdown came in, and I think you say in your statement, though, although you couldn’t visit him, you spoke to him frequently?

Ms Catherine Griffiths: I did, yes. We had lengthy phone calls. He had periods of lucidity, not lengthy, but occasional, and short, which were quite valuable. And we had good chats on the phone, yes, thank you.

Lead 6: And was he able to tell you what life was like in the home once lockdown had come into being?

Ms Catherine Griffiths: To be honest, I just got the impression that he was happy and well cared for. He wasn’t really aware of an awful lot. He couldn’t – he couldn’t really talk about what they were doing or what it was like, but he was always happy and he told me they were kind to him.

Lead 6: Right. I think, in addition to, obviously, speaking to him as and when you could and as and when he was able, you were able to visit later on in 2020 around his birthday, which I think was in June; is that right, Ms Griffiths?

Ms Catherine Griffiths: Yes, indeed. I was quite relieved that we weren’t able to visit in the early days of the pandemic, because it felt so insecure and they were so vulnerable. But there were gardens and an outside area.

So dad’s birthday was in June and we still weren’t allowed to meet outside. I took him a present and he was in the corridor with some carers. And it was – it was very difficult. He couldn’t understand why I wasn’t coming to him. He thought I was avoiding him. It was painful. He got very distressed. I left, I got in my car, and had to stop just down the road because, yeah, it was very, very upsetting.

But I still think that it was better that we weren’t allowed in. In a home with 90 residents, if you’ve got at least 90 people coming and going, the chances of bringing in a potentially, likely, fatal virus is high, so I appreciate the visiting restrictions.

Lead 6: On that occasion of his birthday, obviously you saw him when he was in the corridor, did he have any staff with him?

Ms Catherine Griffiths: Yes, he did.

Lead 6: Can you help, Ms Griffiths, were they wearing PPE or any kind of masks, gloves –

Ms Catherine Griffiths: No, nothing at the time, no.

Lead 6: Did that surprise you or worry you that they weren’t wearing any PPE?

Ms Catherine Griffiths: Well, it did afterwards, but at the time it was all so distressing and unpleasant, and I couldn’t really placate Dad, that it didn’t occur to me. But certainly when I got home I wondered why they weren’t masked and protected.

As far as I remember, that’s so, yes.

Lead 6: And I think you say in your statement that there was another visit, this time a garden visit, on your birthday.

Ms Catherine Griffiths: Yes.

Lead 6: And you were allowed to meet your dad in the garden. Can you tell us about that, please, Ms Griffiths.

Ms Catherine Griffiths: We – it was my 60th birthday and we were allowed to meet in a kind of outdoor gazebo, both masked with surgical masks. We weren’t – nothing – not an FFP3 or anything more significant and protective.

We sat outside. We had to remain 2 metres apart. We couldn’t touch. I mean, as you can imagine, it was incredibly difficult. My father didn’t understand any of this, and it was hard to stop him from embracing me, from holding me, from hugging me.

And the carers made sure that this happened, but – you know, they were there to make sure it happened, yes.

And then after that, I went to meet my ex-husband for lunch in town, where we sat less than a metre apart, sharing tapas. And this was within the rules. It was all utterly incongruous.

Lead 6: Just thinking back to that garden meeting with your dad, you were in a mask, I think you said, and was he in a mask as well?

Ms Catherine Griffiths: Yes, we were both wearing the tie-around surgical masks.

Lead 6: How did he find it to communicate with you? Did you get a sense of whether he could understand what you were saying, how the mask affected the communication between the two of you?

Ms Catherine Griffiths: It wasn’t only the mask, Ms Carey, the whole situation was incomprehensible for him. He really couldn’t cope with it. He took the mask off and we left it like that but he was agitated and uncomfortable the whole time, and reaching to me, and getting annoyed that I wouldn’t hold his hand, or he couldn’t understand it. I assume, from his behaviour, that he felt I was rebuffing him and rejecting him.

Lead 6: Were you able to have video calls with your father?

Ms Catherine Griffiths: We were. But Dad couldn’t cope with them at all. It was most unsatisfactory, and it was very upsetting for him.

Lead 6: And so did you persist with those or did you decide, perhaps, given his upset, that wasn’t the best way of communicating with him?

Ms Catherine Griffiths: The very best way was talking on the phone. He was happy and comfortable and easy with that and we were able to have lengthy talks on the phone so I didn’t bother pursuing the video calls again.

Lead 6: Right. You obviously have discussed there with us meetings with him in June on his birthday, and your birthday. Can I just come forward a few months to the autumn of 2020, and you say there that there were – numbers of deaths in Wales were increasing, and indeed the infection rates were rising. And you said there was – a feeling of inevitability grew. What did you mean by that, Ms Griffiths?

Ms Catherine Griffiths: Well, very early in the pandemic, I spoke with one of the carers from the home. I spoke to them quite often, every time I rang Dad, I had a good chat with them and one of them said very early in the pandemic, “I’m very frightened, it feels like we’re waiting for the inevitable.”

So now, in the autumn of 2020, October, November, we had a short firebreak in Wales. I believe it was exclusively to Wales. And the numbers were greater, the numbers of cases of Covid were greater when we came out of the firebreak than when we went in, and they were just increasing. They were getting higher and higher. This was the second wave, November 2020, when we knew quite a lot. I think a significant amount was known about Covid, and in other areas of the world, Southeast Asia, for example, and in particular Hong Kong, at this time, November 2020, anyone who wished to enter any kind of a care facility was obliged to present a negative lateral flow device test before they went in. And I couldn’t understand why this wasn’t happening here.

As it happens, they weren’t even trialled until a bit later on.

Lead 6: Right. And I think it was on 9 November 2020 that you received a call late one night, you say that you had been dreading, because your father had tested positive for Covid and had also had a fall, and the care home had called an ambulance for him. Can just help me, when did you first learn that your dad had contracted Covid?

Ms Catherine Griffiths: I learnt he had contracted Covid some days before the 9th – the 9th is when he fell – and I think it’s not an unusual presentation in an older person with Covid to have a fall.

Lead 6: Yes, right. And they I think had decided to take your dad to hospital. Did you speak to your father that evening?

Ms Catherine Griffiths: Yes, I did. The carers called me in the night, and I am very grateful that they let me speak to Dad, because it is in fact the last time I spoke to him. He was alert and oriented, in as much as he could be. He said he wasn’t in pain and he was comfortable and he assured me that he was going to be all right. There was some concern that he might have fractured his neck of femur, hip, which is why they took him to hospital.

Lead 6: I think then he went into hospital, he was given some pain relief, and fluids, and he in fact made some improvements, such that they were able to discharge him after about 24 hours or so; is that correct?

Ms Catherine Griffiths: That is correct, yes. I didn’t speak to him in hospital, but I spoke to the nurses and to the doctor there, and they told me that he had responded well to the intravenous fluids and the analgesics and the steroid treatment.

Lead 6: And was he then discharged back to his care home?

Ms Catherine Griffiths: Yes, he was.

Lead 6: Do you know, Ms Griffiths, if there was any care package in place for him when he was discharged?

Ms Catherine Griffiths: He was sent back to the care home with a full care package of morphine pump, analgesia, so controlled drug analgesia, and subcutaneous fluids.

Now, may I just explain that subcutaneous fluids are a very safe way to give a dying person or a very ill person fluids, just to keep them comfortable and hydrated. It’s not like – it doesn’t go into your vein, it just goes under your skin, so it can do no damage, should the needle fall out or something. It’s very safe.

Lead 6: But was that package in fact adhered to, as far as you’re aware?

Ms Catherine Griffiths: It certainly wasn’t for 48 hours.

Lead 6: Okay. Did you have to do anything to try to get the care package put in place during that two-day period?

Ms Catherine Griffiths: I tried. I wasn’t able to get it implemented. I was powerless. I was at home.

Lead 6: I think you say –

Ms Catherine Griffiths: I was phoning the care home, I phoned the GP practice – because in a care home, where there isn’t a registered nurse or anyone qualified, the controlled drug administration is carried out by the community nurses and the district nurses affiliated with the GP, and I was trying to get this package in place.

Lead 6: I think you say in your statement that you were obviously worried about the two days where the package wasn’t in place, and worried about your dad being in pain during that time, and you say you called to discuss the matter in the night with the care home manager and received a call the next day. Can you help us with what the care manager’s response was to your efforts to try to help your father?

Ms Catherine Griffiths: She was very, very angry that I’d called in the night. She knew that there’s an eight-hour time difference with my brother who lives in Hong Kong, and I was passing information across to them. I was desperate. I had to do something. I was not only desperate, but I was impotent.

Lead 6: When you were the subject of her anger in that call, did it make you feel that you could call the home again?

Ms Catherine Griffiths: I was very wary of it. I emailed her to apologise if I’d caused any, you know, difficulty in the night, and I was disinclined to ring again because it obviously wasn’t welcomed. I mean, yes. Thank you.

Lead 6: Did you feel you could visit the home, given the way she had spoken to you?

Ms Catherine Griffiths: Visiting wasn’t really on the cards at the time, Ms Carey, to be honest.

Lead 6: Right. And so Dad has come home from the hospital, you’ve made the efforts that you’ve told us about to get the care package in place, and indeed, after a couple of days, it was in place. What was the communication like with the home over the next few days before your father came to his final few hours?

Ms Catherine Griffiths: Well, it was pretty poor. There wasn’t really any. I mean, it was poor. Shall we leave it at that? Is that okay? Thank you.

Lead 6: Yes, absolutely.

Ms Catherine Griffiths: It was very poor.

Lead 6: And you say that on 16 November, though, you were invited to the home to say goodbye to your father, and I think you say there that one of your brothers urged you not to go and be by your dad’s side, and so you said goodbye to your father from outside.

May I ask you about that, Ms Griffiths? And if you’d rather I didn’t, please say so.

Ms Catherine Griffiths: Thank you. Yes.

Lead 6: What was it like having to speak to your dad from outside the care home, looking in at him?

Ms Catherine Griffiths: A three-way WhatsApp call with my brother, Dad, and me outside the window. It was sleeting, it was cold. It was appropriately icy and hellish outside.

Dad was inside. He was being attended to what I assume was a nurse, because she was wearing a different uniform, and she had a flimsy plastic apron and a surgical mask on.

Dad was in bed and looked dreadful. And he could hear our voices. He knew we were with him.

Lead 6: And so you –

Ms Catherine Griffiths: Dad knew we were with him and he was reaching out to me to help him, and once again I was powerless, I was impotent, I couldn’t do it.

Lead 6: No, all right.

And so, I think, following your father’s death, you said that you felt you and your dad were treated very impersonally. Just take a moment. Are you able to give us to give us any more details about the impersonal treatment that you feel you and your dad got?

Ms Catherine Griffiths: Mine was just simple from the care home, they didn’t really contact me. You know, there was no follow-up, there was no bereavement support of any kind. I did receive an email some time later asking me to pick up Dad’s watch, and I bought Dad that watch when he moved here because he’d lost his and I just couldn’t face it so I left it.

As for the treatment of Dad, it wasn’t actually the care home, but the restrictions that meant that, like all others who died of Covid, Dad didn’t receive the dignified care that a dead body should. He wasn’t cleaned, he wasn’t dressed. As far as I’m aware, he was wearing some pyjamas that were soiled that I’d bought him as a gift. I can understand that that was the restrictions, and I can understand why, but it also – it doesn’t sit well. It doesn’t feel great. It’s not – I feel ashamed and sad and guilty that that happened to Dad.

Lead 6: And of course, as you set out in your statement, you had to have a smaller funeral because of the restrictions that were in place in time, although you have no doubt, given your dad’s popularity, that had there been able to be a full funeral it would have been a well attended funeral?

Ms Catherine Griffiths: Yes, it would have been a good send-off and an appropriate one, but we did our best under the circumstances, like so many others.

Lead 6: Can I ask you about a discrete topic that you refer to in your statement, and that’s some conversations you had with your father’s GP early in the pandemic in relation to DNACPRs. And Ms Griffiths, can you remember not necessarily the precise date but roughly how long into the pandemic we were when you spoke to the GP about this?

Ms Catherine Griffiths: It was very early in the pandemic, because I was at my ex-husband’s. I wouldn’t have been there if it had been lockdown.

Lead 6: Right.

Ms Catherine Griffiths: And I took a call – would you like me to explain what happened?

Lead 6: Yeah.

Ms Catherine Griffiths: Thank you. I took a call from the GP who’d only just met Dad, and his first words to me were “We need to place a DNACPR order on Harold Griffiths.” My response was I thought something had happened to Dad there and then, you know, but no, nothing had. He was physically well. My father’s only problem was the dementia. He had no comorbidities other than age, and when I said I wouldn’t approve it to the GP, the GP said, “Well, your father doesn’t know what he had for breakfast. He can’t do it.”

Now, that is true, Dad wouldn’t remember what he had for breakfast, but he had full awareness of his mortality and he both could and would have signed it, had somebody spoken directly with him.

I told the GP that – quite clearly, that should Dad be found collapsed and unresponsive somewhere, please don’t do CPR, but he was well, and when – well, if and when, his health declined, I would like him to have all, full palliation.

Lead 6: And I think you say in your statement that you felt there was a complete lack of a bedside manner on display by both the GP and it’s indicative of the system as a whole –

Ms Catherine Griffiths: Yes.

Lead 6: – in relation to bereavement support.

Ms Catherine Griffiths: Yes, it felt brutal, and in view of Dad’s robust physical health, to place a DNACPR on him appeared to be simply because of his age.

Lead 6: Can I ask you then, please, about the impact of your father’s dying and, indeed, the way in which it happened and the inability to comply with the usual rituals that we all hold dear. Can you describe for us, Ms Griffiths, how his death has affected you and indeed your family?

Ms Catherine Griffiths: It’s been very hard. That’s an understatement. That’s a poor word to use, sorry. Some of it has been a nightmare. And in fact, from early in the pandemic, it was terrible, terrifying. I was so frightened for his safety. I was frightened for his life. And afterwards, spending a long time being extremely frightened leads to panic and anxiety as the norm in one’s life. I’m very fortunate in that I had an 18-month course of psychotherapy, private psychotherapy, which helped me enormously and gave me tools with which to cope with this, but there will always be fear, guilt for not being there with him and not being able to do what one feels one should for one’s parent.

Lead 6: I think, Ms Griffiths, you’ve followed a number of the hearings as we’ve progressed over the last five weeks. Having followed the proceedings, is there anything that you would like to add?

Ms Catherine Griffiths: If I may, yes, please. Thank you.

I appreciate this chance to have my voice heard. I’m speaking on behalf of the many thousands who no longer have a voice, as well as the bereaved families in Wales. In the summer, during a lucid moment on the phone before my dad died, he asked me if I felt that the Welsh Government was looking after us, if it was making good decisions for us. Poignant and prescient, in retrospect.

Care home residents were and remain, as we know, a singularly vulnerable group. These precious people, people who have contributed both societally and fiscally to our country throughout their lives, needed to be protected. From what I’ve heard over these last weeks, none of the institutions responsible for the protection of Welsh care home residents did that. It is heartbreaking and it compounds our grief.

If we’re lucky, we will grow old. But age does not diminish the value of our one wild and precious life, to quote the American poet, Mary Oliver. My father was old. My father deserved better. We all deserve better.

Thank you so much, Ms Carey. Thank you, my Lady.

Ms Carey: No, not at all. Can I thank you both for that evidence and for the corporate witness statement that you have provided on behalf Covid Bereaved Families for Justice for Cymru.

My Lady, those are all the questions I have for Ms Griffiths. Thank you very much.

Lady Hallett: Ms Griffiths, I too thank you. You said that your father was no stranger to loss but obviously nor are you. And I do understand how difficult it must be to talk about that loss and your feelings at losing your father in those circumstances.

I am really grateful too for the help that you’ve given to the Inquiry, and can I emphasise just how important it is to me, personally, and to the Inquiry, to hear your voice and, through you, the voice of your father. Thank you very much.

The Witness: Thank you.

Ms Carey: Thank you, my Lady.

The next witnesses are due this afternoon, and so I wonder if, my Lady, we might be able to take, perhaps, an earlier lunch?

Lady Hallett: Oh, I thought we were trying to … oh, we can’t.

Ms Carey: No, it’s not been possible to rearrange the witnesses, so I’m afraid I am going to have to ask you to rise, if I may.

Lady Hallett: Until when?

Ms Carey: I would have thought an hour. 1.30.

Lady Hallett: We can’t move forward? All right, 1.30.

Ms Carey: 1.30, please.

Lady Hallett: Thank you.

Ms Carey: Thank you very much.

(12.14 pm)

(The Short Adjournment)

(1.31 pm)

Lady Hallett: Ms Cecil.

Ms Cecil: Thank you, my Lady. May I please call Linda Dinsdale.

Ms Linda Dinsdale

MS LINDA DINSDALE (sworn).

Lady Hallett: Ms Dinsdale, thank you very much for coming along to help us today.

The Witness: Thank you for having me here. Thank you.

Questions From Counsel to the Inquiry

Ms Cecil: Thank you, Ms Dinsdale. You’re here today to tell us about your daughter Sheryl, her experiences, and, indeed, your family’s experiences during the pandemic.

Sheryl, your much loved daughter, sadly died at the age of 50 on 27 April 2020, so at the outset of the pandemic.

Ms Linda Dinsdale: Yes.

Counsel Inquiry: In terms of your family, Sheryl was your second child of three?

Ms Linda Dinsdale: That’s right.

Counsel Inquiry: And she was very close in age to her older brother, 11 months between them?

Ms Linda Dinsdale: Yes.

Counsel Inquiry: And you describe them effectively growing up as twins as a consequence.

Ms Linda Dinsdale: Mmm.

Counsel Inquiry: But more broadly, it’s right to say that you and your family are, indeed, very close more generally.

Ms Linda Dinsdale: Yes, we are. We always have been. Yes. We still are, yes. You know, we did so much together, everything was done together, from children right through to adulthood, after marriage we were still a very close family. But Sheryl particularly so, as well. Very much so. After she became ill she became dependent, and we were even closer even then.

Counsel Inquiry: May I just ask you, Ms Dinsdale, just to keep your voice up a little bit.

Ms Linda Dinsdale: Yes.

Counsel Inquiry: It’s dropping a small amount.

Ms Linda Dinsdale: Okay.

Lady Hallett: I wonder if we could move the microphone – help if it was a little bit closer.

Ms Cecil: Thank you, my Lady.

If I can turn now to Sheryl, you paint a very vivid picture within your witness statement. She was obviously a very bright, vivacious woman. She was a natural leader, as you describe her. She had a passion for singing, which I understand is something that’s more broadly enjoyed across your family.

Ms Linda Dinsdale: Yes.

Counsel Inquiry: But in particular, musical theatre and dance, and she was also very talented in that because she competed in Latin American ballroom dancing from when she was 7 years old all the way until she was 22.

Ms Linda Dinsdale: Of course.

Counsel Inquiry: Similarly, she excelled in her working life, I mean adulthood. She worked in the Houses of Parliament for over 20 years. What type of work was that?

Ms Linda Dinsdale: She worked for various committees, and enjoyed each one, if it was either foreign affairs or … and she worked in Strasbourg; she went away every January and spent three or four weeks working there as well, and she would be setting up all the meetings and everything that was going on. And thoroughly, thoroughly enjoyed working there, but unfortunately had to take medical retirement from there.

And, as I say, it was about 23 years she’d actually worked there, having come from – she was actually a tutor for shorthand typing and things and she went – she actually did that prior to – but she worked there. And now, on the Covid wall, her heart is facing straight over to where she worked, which is a bit poignant really. But – so she’s still at work.

Counsel Inquiry: Still at work.

Ms Linda Dinsdale: Even though she’s no longer here, yeah.

Counsel Inquiry: Indeed, when she took medical retirement, her role at that point was as head of the Foreign Affairs Select Committee?

Ms Linda Dinsdale: Yes.

Counsel Inquiry: She was able to combine that with an active family life, to raise her son James.

Ms Linda Dinsdale: That’s right, with James. But from the age of two, because of Sheryl with her work and her commitment to work, he actually lived with my husband and I as well, so we all brought him up.

Counsel Inquiry: Indeed.

Ms Linda Dinsdale: But of course she had a lot of holiday time, when the House was in recess and things, so she spent a lot of time then. But other than that, he was with us, as she was as well, yeah.

Counsel Inquiry: So that’s why I say you were particularly close as a family?

Ms Linda Dinsdale: Very close, yeah.

Counsel Inquiry: You explain in your witness statement that in 2010 she began to develop various health problems and was subsequently diagnosed with chronic pain and fibromyalgia?

Ms Linda Dinsdale: Exactly, yes.

Counsel Inquiry: And it was 2013 that she took medical retirement, and by her early forties, sadly, she’d become almost entirely immobile and was in a wheelchair.

Ms Linda Dinsdale: Yes, she was in a wheelchair. She could still possibly move from, say, the chair to another area, but not without assistance and the pain just got quite severe, really.

Counsel Inquiry: Initially you explain that she had carers to come and help and assist and then you took on that role yourself?

Ms Linda Dinsdale: Yes.

Counsel Inquiry: And then following on from that she –

Ms Linda Dinsdale: Well, I took on because we had converted our home to bring her into our home for us so she actually lived with us completely, and but then my husband was also – I was caring for him at the same time. And my grandson, as well, unfortunately. But, no, they came in, because as I said, we are a close family, still are. But I was actually working, as well, so I was – I had my own thing to do, and it just became too much for me, and we had to have carers, but this is what I was advised through my local surgery, to do this anyway, the GP. And we had carers, but unfortunately they couldn’t do exactly everything she wanted because she did start to need a lot more time, yeah, with the carer.

Counsel Inquiry: And her care needs became such that that was when you found a home for her to move into.

Ms Linda Dinsdale: Well, what actually happened was she was in hospital – she was actually in hospital, and she’d continually been having UTIs because of the catheter, permanent catheter and things, and she was in hospital. And this happened on and off and they said because of my situation with my husband and grandson and Sheryl, they suggested a – this was an actual care home to start with, which was very good, I have to say, except it promised that they would have physiotherapy and things like this but it just didn’t happen, even asking why it hasn’t happened, but there wasn’t any availability at that time.

And then she developed – she got, you know, really heartbreaking to see how much it changed her because she couldn’t do anything that she could do before, but mentally still very, very alert. And then they suggested a care home, but from the care home she was in and out of hospital, as well. But that was mostly with UTIs is what they were taking her in with.

And then, on the January of the year she died, 28 January, she went into hospital with supposedly a UTI again, and she was in there for six days on oxygen and everything else, and then they sent her back to, now the nursing home, they sent her back to there, and took her off oxygen and everything, and sent her home without even any oxygen.

Counsel Inquiry: Without any oxygen. And that was in January?

Ms Linda Dinsdale: 2020.

Counsel Inquiry: – 2020?

Ms Linda Dinsdale: And that is when she actually began to become ill, prior to her death in the April of the same year. That is when she started to go down at that particular time.

Counsel Inquiry: Indeed, and you set that out in your statement that her health generally began to deteriorate at that point in January and things unfortunately got worse –

Ms Linda Dinsdale: Yes.

Counsel Inquiry: – all the way through to April?

Ms Linda Dinsdale: It had been deteriorating earlier as well, because we were looking for a rehabilitation centre, and I worked with a specialist at the particular hospital she was under, three of them, pain management and rheumatology and another one, as well, and I worked alongside them and did a lot of research to actually find a hospital who could take her, and turned down many times, you know, still kept going, and we actually – I actually got one, which was the University Hospital of Coventry and Warwickshire, who agreed to take her on for rehabilitation, and we learnt that about the Christmas before her death, and she had gotten – she actually had got accommodation, and the whole course was getting made up for her to go in on 18 May and it was too late.

Counsel Inquiry: Of course. Sadly, she was never able to undertake that.

Ms Linda Dinsdale: No.

Counsel Inquiry: If I may ask, then, just in the immediate period prior to the pandemic when she was living in the care home and being readmitted after Christmas and January 2019, were you able to visit her? And if so, how frequently did you visit?

Ms Linda Dinsdale: Well, prior to the actual pandemic, I visited her every day, sometimes twice a day. I was always in and – I was always there, but either husband or son or family would join in and they’d come and see her. Visiting, when it was never restricted, we could actually visit from 8.00 in the morning until 8.00 in the evening, so there was never a problem with actually visiting the care home at all.

Counsel Inquiry: Thank you.

Ms Linda Dinsdale: Now, come to the pandemic, of course it changed.

Counsel Inquiry: If I could ask you, then, to look at what then started to take place through January through to March, so just prior to the lockdown of the care home and, more broadly, the restrictions in society, as news of the pandemic spread through that February and March period, did you see any changes in the care home with regard to infection prevention and control for PPE?

Ms Linda Dinsdale: No, no, I was visiting on a daily basis and when allowed in for visiting, there wasn’t any – I mean, I – because we knew this was – there was something happening, and we had hand gel and wipes and things, but there was nothing like that, or masks or anything within the actual care home sector itself. There was nothing there.

When it got to 23 March when shutdown came, then, of course nobody was allowed to go in and we were actually told. But Sheryl was in a downstairs room that had a window, which was very fortunate, because at least we could go up to the window and talk to her. But it was a matter of shouting through the window, and sometimes she’d be cold and things because we were having to open the window, but there was no other ways of communicating unless I telephoned her on her mobile if there was – somebody had been available to pick it up, because by this time she was having problems with actually – she still had one arm working but the rest wasn’t, and she was having difficulty picking it up, and it was quite heartbreaking to watch because I couldn’t do anything for her.

Counsel Inquiry: And she needed the assistance of others to help you have those conversations?

Ms Linda Dinsdale: Yeah, yeah.

Counsel Inquiry: At that point, after – so this is after the home had locked down, did you then start to see changes in terms of PPE and infection control?

Ms Linda Dinsdale: No, it didn’t happen, and I could only see Sheryl’s room because it’s the only room that was visible from when we were able to see her. Definitely nothing changed. I saw staff coming in and out, I mean nursing staff and that coming in and out. There was no PPE or anything like that with them, and on one particular day, which I was shocked about and I mean, I’m angry about it, as well, to be honest, there was a lady who did the laundry and things like this, and she came into Sheryl’s room, she acknowledged Sheryl, and she went over with the laundry, because I always took Sheryl’s laundry with me and did it at home and took it back, but because of the shutdown, we couldn’t do that, so they were having to do it for her. And she walked straight into the room, acknowledged Sheryl – I can still see it happening – with this laundry and other laundry, someone else’s laundry, and she went to the wardrobe and put it in, there was no PPE, there was no mask, there was nothing at all being used. It was as though it was a normal, you know, a normal day.

But Sheryl must have asked for a drink or something, and she walked straight over to Sheryl’s bed, she picked up this glass, she puts some water into it, took one of the straws, put it into the glass, gives it to Sheryl.

Now, no way, with all this laundry and everything else, clean, dirty washing, whatever, and it was going off to somewhere else as well, more laundry, was there ever any hand washing. There was no control there whatsoever. And I was very angry when I saw that but they didn’t have it, they said.

Counsel Inquiry: If I can ask you about the situation when you became aware that patients were being admitted from hospital including some with Covid.

Ms Linda Dinsdale: Yes.

Counsel Inquiry: Were those patients separated from other residents? Were you able to – were you aware as to whether or not that was happening?

Ms Linda Dinsdale: Well, when I was still visiting, and before lockdown, a member of staff, who was quite a senior member of staff actually advised, because I’m there all the time so I got to know them, actually advised that patients were getting returned from the hospital because they needed beds, et cetera, in the hospital, and they were being returned.

Now, the particular nursing home she was in was mostly on the ground floor, and it was like corridors, and there was rooms each side of the corridor. But never up until – I don’t know what happened after lockdown, but prior to that, there was never a section that was sealed off. Anyone could walk up these corridors.

Counsel Inquiry: Thank you.

And with regard to Sheryl, at this point during the restrictions, after visiting restrictions had been put in place, did you notice any decline in her –

Ms Linda Dinsdale: Oh yes, yes –

Counsel Inquiry: – herself?

Ms Linda Dinsdale: Yes, because the communication wasn’t as good. You know, you couldn’t sit with her, talk to her. And even this through a window was quite difficult.

Sometimes she would seem depressed, she’d be tearful, but I think this was the whole situation she was in. She was just in this room and that was it. I mean, although seeing us, but yes, she did change.

And her medication was changing and she kept having these UTIs. And I’d say to her – she’d tell me how she feels because, as I say, at this time still very much alert, mentally, and she’d tell me about the pain she was in and what they’re doing and how she wasn’t being cleaned properly, as she put it. She was not getting cleaned, which was upsetting her even more. And I couldn’t do anything. If I’d have been there I would have done it, because if I could have got in to her –

Counsel Inquiry: Of course.

Ms Linda Dinsdale: But I just couldn’t. Tried to talk to them, through having to phone them up, if they – you know, if they answered the phone, I’d say, “Well, look, why is she being distressed? Why is this happening?”

“I’m sorry, I’ll look into it.”

But that’s as far as it would go and there’d never be any comeback from it.

But she continued and she’d say she was in pain and – but the doctor wasn’t coming up. Now, this happened prior to the January, when she was actually taken in for a UTI. It happened again – and she was there six days, but it happened again. And they would phone the doctor and I would speak to the nursing staff in the nursing home and say, “What are they saying it is?”

“Oh, it’s a UTI.”

I’d say, “How do they know? Has she been tested?”

“Oh, no, that’s what it is.”

And he never actually came. He sent the medication directly to the nursing home, because she wasn’t under my GP any more, she was under the nursing home, you see. So they kept – she was on this continually and – but it wasn’t working, and nothing else was being done.

Counsel Inquiry: Do you know if she was being seen it by a doctor at all during this period?

Ms Linda Dinsdale: I think on the first occasion he said it was a – again, another UTI. Yes, he did. And he did actually come and see her. But following that last appointment at the actual nursing home, he didn’t come back, no.

Counsel Inquiry: And you’ve explained the impact that the medication had upon Sheryl, and indeed in your statement you describe her as becoming drowsy.

Ms Linda Dinsdale: Sleepy –

Counsel Inquiry: – (overspeaking) – because of the medication changes –

Ms Linda Dinsdale: Yes.

Counsel Inquiry: – she became less able to communicate –

Ms Linda Dinsdale: That’s right.

Counsel Inquiry: – and hold those conversations.

What impact did that have upon you in your attempts to communicate with her, but also James?

Ms Linda Dinsdale: It affected James, and it still has very much affected us, her son, to this day. You know, with things that will come – things that he’ll say and you know he’s thinking what happened to his mum. It has still affected him. Then he was going to go into the medical profession, he’d got all his qualifications. When this happened to his mum, he said, “I am not going to work – I’m not going to do this any more, Grandma”, he said, “My mum got neglected.”

And that is how he – and he still feels like that, as I very much do. That – not so much care home, but when it comes to the hospital side, things just went haywire as well.

But leading on from the nursing home, they just seemed to keep giving her pills. She was supposed to have this and she was supposed to have that, then the morph – then they started giving her Oramorph, which was – and that got increased, which that was a morphine-based drug as well, and that was – because of the pain, which was supposed to be for her UTIs, which I found strange.

Counsel Inquiry: Indeed. And James, in particular, found it difficult to, then, carry on, even having that level of visiting with her –

Ms Linda Dinsdale: Oh, yes.

Counsel Inquiry: – because it was very difficult to communicate and –

Ms Linda Dinsdale: He couldn’t – no –

Counsel Inquiry: – see his mum – (overspeaking) –

Ms Linda Dinsdale: Yes, he couldn’t. And he was much younger, of course, so he – he didn’t have that ability to communicate as well as perhaps an adult will, to try to bring her out. It was just his mum and his mum, very ill. And it did affect him, yeah.

Counsel Inquiry: And you describe how, effectively, almost she just wasn’t his actual mum Mum by that point, the mum that he knew.

Ms Linda Dinsdale: Definitely wasn’t, no.

Counsel Inquiry: If I may turn now to April, you visited Sheryl on 19 April. At that point her son, your grandson, James, was also very unwell. At this stage you were juggling both Sheryl’s needs, James’s needs, and indeed your husband, who also had terminal cancer?

Ms Linda Dinsdale: That’s right.

Counsel Inquiry: She contacted – and she told you that she was unwell. What did she say?

Ms Linda Dinsdale: “Mum, I feel so unwell”, and she’s sleepy and she’s got the pain, and – and then she was asked – and then she would say, “Why aren’t they helping me?”

I mean – I mean, this is something that we’ve come through this as well, you know. And it would be in gasps rather than in anything else. And I knew she was really unwell because I had been able to communicate with her. For her to tell me that in such a … well, she was crying as well, you know, because she didn’t know what was going on.

Counsel Inquiry: And at that point did you ask them to call a doctor for her?

Ms Linda Dinsdale: Yes, yes. I phoned up from outside the window when I saw her like this, and I actually phoned, and after some time they answered, and they said, “Well, it’s just her UTI again”, is what I kept being told.

I said, “Well, look, I’m sorry, but she is deteriorating before my eyes, so why can’t you see what’s happening?”

Anyway, so they said they would call a doctor, which, after a couple of hours of standing outside, I went home. She says, “Go home, Mum, go home and come back.”

I said, “Okay, I’ll be back.”

But when I got home, I kept ringing, “Have you called the doctor?”

“No.”

Then: “Yes, but it’s only a locum, we don’t know when he’s coming.”

I says, “Well, look, I’m sorry, we’re now couple of hours down, she needs a doctor”, I said, “or an ambulance or something, because it’s not the Sheryl that we all know.”

But they’re very busy.

Anyway, when it got to about 4.30, I think it was, that day, I phoned up and I – I’m afraid I was – I lost it with them. I said, “You either get an ambulance now or I am calling for that ambulance myself, because my daughter is not being cared for as she should be.”

And they said, “No, you won’t be able to do that because it’s got to be us who sends for the ambulance, they won’t come out.”

I said, “Well, I’m going to give you half an hour and I want to know that there’s an ambulance there.”

In the meantime, I’ve got my son – my grandson who is quite ill, and I’d been told by 111 to get him to a hospital but I wasn’t going to the same one as where my daughter was going – well, eventually went to. I was going a different direction. And anyway, when I did get back through, they had got in touch with the ambulance and the ambulance came, and I was on the phone when the ambulance arrived and the paramedics and I didn’t want them to go to this particular hospital; I’d – my grandson was being sent to that one, I’d have preferred her to go, but anyway, the paramedic came on the line and she said to me, “She is very, very ill.”

She had gone blue, her lips were blue, and her oxygen levels had dropped considerably, and she said, “We’ve got to blue light her into the nearest hospital.”

Counsel Inquiry: And that’s what they did. And at that point, as you say, you were with your grandson James in a different hospital.

Ms Linda Dinsdale: Yeah, and I couldn’t go – I mean, I wouldn’t have been able to have gone with Sheryl anyway because of Covid, basically.

Counsel Inquiry: Of course.

Ms Linda Dinsdale: So I was going in the opposite direction, yes. So she went one way and I went with James and, of course, I couldn’t go into the hospital either with him when I got to the other hospital, so I waited, I said, “I’ll sit in the car park, and you’ll come out”, so while I was waiting for – when I went back to the car and I saw I had a message from Sheryl herself.

Counsel Inquiry: Indeed, and you called Sheryl back, didn’t you?

Ms Linda Dinsdale: Yes, and I called her straight back, yeah.

Counsel Inquiry: And you had a conversation with her?

Ms Linda Dinsdale: And she was talking, she was very lucid. And she said to me, “Mum, don’t speak, listen,” it was difficult for her, she said, “Listen. I arrived here, nobody had” – and she said, “The first thing that greeted me wasn’t what you would expect, it was ‘You could die, do you want to be resuscitated?’.”

That was the welcome that she got when she went into the hospital.

I said, “What did you say, Sheryl?”

She said, “Of course, I want to be resuscitated. James is 21 next year and I want to be in the celebrations.”

Counsel Inquiry: Do you know if any discussions like that had taken place prior to that date? Prior to that time? No.

Ms Linda Dinsdale: No.

Counsel Inquiry: At that point she was admitted to the hospital, she – you explain in your statement that you called multiple times a day, then, over the next few days to try to find out what was wrong with her.

Ms Linda Dinsdale: That’s right.

Counsel Inquiry: And had she been tested for Covid?

Ms Linda Dinsdale: Mm-hm.

Counsel Inquiry: At that point you were not told; is that right?

Ms Linda Dinsdale: There was –

Counsel Inquiry: You had no information –

Ms Linda Dinsdale: No, I mean, they said, “No, we haven’t got that information” or “We haven’t” – and that was right from the 19th. And I was phoning two or three times in a day to – every two or three hours to see how she was doing, and I’m getting told: this had improved. The next day I was getting the opposite, and this was how it went on. And I asked on every occasion, “Have you tested her for Covid?” Because I know she was not tested in the care home. She hadn’t been tested nor had she been injected either. She hadn’t had a Covid injection or anything.

Counsel Inquiry: Indeed, it was not until the evening – or the early hours or the evening of 23 April, going into the 24th, when they called you at around 2.45 in the morning, that the hospital told you that she had tested positive for Covid, and moreover, that she was very unwell, she was deteriorating, and that she was dying.

Ms Linda Dinsdale: Yes.

Counsel Inquiry: And that was the first time that you’d been told of that diagnosis?

Ms Linda Dinsdale: Yes, and so if she had been tested on the 23rd, or if the results was – but I was also told the results should have been there on the 21st, but I got hold – and I had been asking every time I phoned, and I was never told it was Covid, because she went into a general ward when she was admitted, and then they moved her on to a high-dependency ward a bit later on, so I was ringing, you know, each time she got moved, I was ringing up to find out. And it was just rather chaotic, to be honest, altogether.

Counsel Inquiry: She was very unwell at that stage, and the hospital told you that her kidneys were failing.

Ms Linda Dinsdale: Mm-hm.

Counsel Inquiry: Were they going to provide further treatment, or was it effectively palliative care and end-of-life?

Ms Linda Dinsdale: Yes. It was palliative care. Because there’s only, as I say, going through the notes even from the hospital, which I’ve gone over again and again to see if there’s anything, do you know, from the day of admission when she first went into this first particular ward, and they actually took her case before the care team, the ITU care team, and the questions that were asked: was she suitable for ventilation? No, no, no. To every single thing, even right down to renal interaction, which I don’t know why that came into it. And it had all been ticked off as no, no, no.

Counsel Inquiry: And how did that make you feel at the time?

Ms Linda Dinsdale: Well, devastated, absolutely devastated. Why, why if she was getting treated for UTIs, all of a sudden she’s got – she can’t have anything done, you know, nothing at all. When I’m getting told that there’s no evidence yet of Covid, and that any test results, why can they say “no” to everything when they haven’t had any results back?

Counsel Inquiry: And you were very – you explain in your statement you were very angry at the time, and you were very angry on the telephone –

Ms Linda Dinsdale: I was angry when that doctor rang at quarter to three in the morning because I’d spoken to them, and I was angry and I was upset. In fact, I was very angry when she told me my daughter was dying. And unfortunately, I absolutely screamed down the phone, because it was how I felt, and I still feel it to this day, that she had got dumped on the scrapheap because of her disabilities and that’s how I really feel about it.

Counsel Inquiry: And Sheryl ended up being moved, as you say, to a respiratory ward?

Ms Linda Dinsdale: Yes.

Counsel Inquiry: And you were able to speak to her at that stage?

Ms Linda Dinsdale: Yes, more limited than I was at the home. I mean, the nursing staff were exceptionally good, they would take the phone to her because by now she couldn’t lift the mobile at all, but they would take the phone and I could talk to her. But she was more listening to us talking to her than her explaining too much to me. I mean, she couldn’t tell me about the – I only found all this out on the notes, where the hoods were collapsing, where they were finding things wrong with the oxygen going in, they had found leaks and she wasn’t getting it and she’d been crying out because the oxygen wasn’t going in. So it was just a horrendous time, it really was.

Counsel Inquiry: I won’t read it out, but in your statement you describe the trauma that she faced –

Ms Linda Dinsdale: Oh, definitely.

Counsel Inquiry: – in relation to those issues in her last days.

Ms Linda Dinsdale: Yes, yes.

Counsel Inquiry: If I may move couple of days ahead to 27 April, you were out at that point collecting James when you received a phone call from the hospital to say that Sheryl was dying.

Ms Linda Dinsdale: Yes.

Counsel Inquiry: And this is another time when you were contacted in that regard.

Ms Linda Dinsdale: That’s right.

Counsel Inquiry: You returned immediately home –

Ms Linda Dinsdale: Mm.

Counsel Inquiry: – and when you arrived home your husband was waiting at the front door for you –

Ms Linda Dinsdale: At the door.

Counsel Inquiry: – with Sheryl on the telephone. Were you able to speak to her?

Ms Linda Dinsdale: Yes. I was able. She didn’t respond in any way, but it gave us some comfort, the fact that I’m hoping she heard us talking to her because my husband spoke to her, and I did, and so did James – well, James started to speak to tell her how much he loved her but he couldn’t. He’d completely broken down, so it was a matter of trying to keep strong for his sake, really, because I felt like doing the same because I couldn’t believe it was happening.

Counsel Inquiry: Indeed. And sadly, Sheryl died when you were on the telephone to her?

Ms Linda Dinsdale: Yes, yeah.

Counsel Inquiry: She was only 50 years old.

Ms Linda Dinsdale: Yes.

Counsel Inquiry: In terms of the communication and contact that you had with Sheryl prior to her death, you found out afterwards that the hospital had said that you could go and see her at that point. Your husband had not told you. You say you think that was to protect you.

Ms Linda Dinsdale: Mm.

Counsel Inquiry: But I think it’s right to say that you’ve also – also because, practically, you just would not have got there in time?

Ms Linda Dinsdale: I wouldn’t, because when I was speaking to them, there was only – it was only ten minutes later she died and I couldn’t – and the hospital was about 15 miles away so I couldn’t have made it anyway.

I hadn’t been told even during the day that she was actually – even when I was speaking to the doctor, because even the day before, I was told she’d improved slightly. So to get – and this was after the phone call to say that she was dying, I was told that she’d slightly improved the following day, during speaking to a nurse and, of course, that gives you that hope again, but it was dashed pretty quickly.

Counsel Inquiry: You subsequently received Sheryl’s medical notes and records, and –

Ms Linda Dinsdale: That took a bit of doing as well, because I wanted the hospital records, and I wasn’t – well, I asked first of all, to be honest, for the nursing home to give me the records. They outrightly refused me having the records, and I said, “Why?” They said, “There are too many there, it would cost us a fortune to get these photocopied.” I said, “Well, I will photocopy them or I’ll pay you to, if I can have her medical notes”, because I was really concerned about this UTI business and everything else that was going on and I wanted to see how it had been documented.

And they completely refused, and to this day, I have never been able to get her medical records.

Going on to the hospital, I asked for them and they weren’t forthcoming for some time and in the end I got in touch with my MP at that time, who was exceptionally good, and he contacted the hospital and I did get them. I know it took a little while to come through, but I did have a couple of boxes of records of all her hospital records delivered, but that was through, I think, him intervening because he did contact me to say what he had done, and he had done it, because at that stage you weren’t believing what any politician was telling you, so now I have got someone telling me, “Yes, I’ll do this”, but credit where credit’s due, he did do that.

Counsel Inquiry: Indeed. And it’s right to say that that was particularly difficult for you because it opened up all sorts of other issues.

Ms Linda Dinsdale: And you learned a lot more than what you knew before and that has been a continual thing, really. That hasn’t gone away. It hasn’t gone away at all, not for me or any of the family. It just hasn’t.

Counsel Inquiry: The funeral that was subsequently held was subject, obviously, to the restrictions that were in place at that time, and you held a cremation with six people present.

Ms Linda Dinsdale: Yes.

Counsel Inquiry: How has that impacted you and your family’s ability to grieve for Sheryl?

Ms Linda Dinsdale: Dreadful, really. Because she deserved so much more than that. I know it was restrictions, we had to abide by the rules, you know, this is what it was, but it felt, for the girl she was and the lady she became, it was devastating to all of us to have just six people there, and she was cremated, but then James said, “Mum – I want Mum’s ashes to be buried” so we bought a burial plot in our local cemetery and we had her buried, but of course from when she died on the 27th, she didn’t, actually – she wasn’t – of April – she wasn’t cremated until towards the end of May, and then we couldn’t get her buried until 23 July.

So that period in itself, but what could you do? We just couldn’t have anything done. But we were actually allowed, by July, we were allowed nine people. But that is nothing to what, you know, what she should have had. Nothing at all.

Counsel Inquiry: You subsequently joined Covid Bereaved Families for Justice UK.

Ms Linda Dinsdale: Mm-hm.

Counsel Inquiry: Why did you do that?

Ms Linda Dinsdale: Well, I was watching people’s stories – I mean, I only lost my daughter, I say “only lost”, that was the biggest thing, it was a very big event, but so many people lost other people, and so many people had been suffering and some had got saved, and I thought: it’s only if people speak out about what’s happened that I believe in the future, things should be and will be different. And I felt that perhaps this Inquiry would enable things to progress as whatever government, whoever is in charge, should actually move this along to make sure this never happens to anyone again. Because it does destroy your life. It’s not the same life that we all had before. It’s so different to what it was when your loved ones were with you.

Counsel Inquiry: Indeed. And you explain, finally, in your statement that telling Sheryl’s story to the Inquiry is very important to you.

Ms Linda Dinsdale: Oh yes, yes.

Counsel Inquiry: She is then a part of this Inquiry –

Ms Linda Dinsdale: Yes.

Counsel Inquiry: – and it will go some way to cementing her legacy.

Ms Linda Dinsdale: Yes.

Counsel Inquiry: Is there anything else you would wish to tell the Inquiry or for my Lady to hear?

Ms Linda Dinsdale: No, it was just – with Sheryl, she’d be wanting to help. She would want to help people. She was that type of girl. She danced all over the country, she sang, she was in school choirs and she was in the church choir, sang in the cathedral and very much a Christian person is the only way I can put it. She was a Christian, helped out with Brownies, Guides, did everything, you know, and she would want me to make sure nobody else would suffer like she – and she did suffer, there’s no two ways about it, and she didn’t deserve that all. Because she was just – she’s my daughter, but I can say it – she was just so good and a pleasure to have had, you know. I miss her a lot, definitely, which we all do. We definitely always will miss her.

But that was just Sheryl, there’s so much that you could say, but I can’t.

Ms Cecil: Thank you very much, Ms Dinsdale.

I have no further questions, my Lady.

Lady Hallett: Thank you very much indeed. You’ve been through so much and you talk about it so calmly, but I bet inside – (overspeaking) –

The Witness: Yes – (overspeaking) –

Lady Hallett: – I was going to say, are you like a swan with the legs going underneath?

The Witness: Very much so.

Lady Hallett: You lost your beloved daughter, you thought you were losing your grandson, and you lost your beloved husband.

Ms Linda Dinsdale: I lost him last year, yes.

Lady Hallett: You’ve been through so much and thank you for sharing your story with us. I promise you, there will be a mention in my Inquiry report of the bereaved generally and, where I can, obviously mention of individual bereaved – (overspeaking) –

The Witness: Thank you very much.

Lady Hallett: – to cement her legacy.

The Witness: Thank you very much indeed.

Lady Hallett: Thank you very much.

The Witness: Thank you.

Lady Hallett: I think somebody will be coming to see you.

The Witness: Right, okay.

(The witness withdrew)

Ms Cecil: My Lady, may I call Gregory McQuitty.

Mr Gregory McQuitty

MR GREGORY McQUITTY (sworn).

Lady Hallett: Mr McQuitty, thank you for coming to help us. I hope we haven’t kept you waiting.

The Witness: No, my Lady, thank you.

Questions From Counsel to the Inquiry

Ms Cecil: Thank you, Mr McQuitty. You are here today to share your father Ivor’s experience and your experiences during the pandemic. Sadly, your father passed away on 2 May of 2020 at the age of 84.

Mr Gregory McQuitty: That is correct.

Counsel Inquiry: He was a man that you very powerfully describe in your statement as being a man who loved intensively and was very much loved.

Mr Gregory McQuitty: (Witness nodded)

Counsel Inquiry: How would you describe him in your own words?

Mr Gregory McQuitty: He was … sorry.

Lady Hallett: Don’t worry. Take your time, Mr McQuitty. Sometimes having a sip of water can help.

I suggest we don’t break because I think it might be better for you if we got on with it.

Mr Gregory McQuitty: He was the best man ever I knew. He was honest and a very, very hard worker. And as we’re all – every son tries to model theirself on their father, and just – because of the situation, the way it happened in the Covid, it’s – I’ve never really talked about this before, you know.

Ms Cecil: Of course.

Mr McQuitty, maybe I can help you a little bit, in terms of your dad. You obviously have – you have a large family.

Mr Gregory McQuitty: Yes.

Counsel Inquiry: He was very much a central part of that family, in terms of both you, your siblings – his children, effectively – and his grandchildren, and the wider family also.

Mr Gregory McQuitty: That’s correct.

Counsel Inquiry: And very active within all of those.

He was also a very active man because, of course, up until 2019, he remained living independently in his own home.

Mr Gregory McQuitty: Yes.

Counsel Inquiry: It was only as a consequence of some falls resulting in him going into hospital that he then returned and was – and effectively moved into a residential care home?

Mr Gregory McQuitty: Uh-huh.

Counsel Inquiry: And his needs were such that that was what was necessary at the time. He had Alzheimer’s and dementia, and he was also deaf at this point in both ears, and using hearing aids.

Mr Gregory McQuitty: Yes.

Counsel Inquiry: So he had a number of needs and those were accommodated by the home. He lived in the dementia wing?

Mr Gregory McQuitty: That’s correct.

Counsel Inquiry: In terms of choosing that home, one of the most important things for you and your family, as I understand it, was that it was a close home to you, so that you could go and visit. Did you –

Mr Gregory McQuitty: The home closed – I think it was the same as the rest of them, there was no warning or nothing. We went to one day and there was a sign upon the home door saying it was closed to visits.

Counsel Inquiry: Sorry, let me go back one step with you, Mr McQuitty. It’s my question that’s confused you.

I was saying you chose the home that he went to live in because it was close to you and your family, and so you were able to visit frequently because it was initially, when he first moved in, just down the road from where your sister lived –

Mr Gregory McQuitty: Yes, it was –

Counsel Inquiry: – and where you lived?

Mr Gregory McQuitty: Yes, it was only a mile from my sister’s house, and the – the home at that time hadn’t a great reputation and some of the family didn’t want my father going there. There was a lot of questions in the home about cleanliness, et cetera, and meals, et cetera, as it’s well advertised in the media, but it was close. As I say, it was a mile from my sister’s house and my father’s house was only up the road, it was in the same vicinity. And yeah, that’s why he was there, because if we hadn’t have got him that home, close to home, it could have been Antrim, Armagh, Newry, just wherever a bed come up, you know, so we had – we got him close to home.

Counsel Inquiry: And you were able to stop – so you often stopped in whenever you were passing by.

Mr Gregory McQuitty: Yes, yes, we called in whenever we could.

Counsel Inquiry: Did you also take him for trips?

Mr Gregory McQuitty: We took him out for what we’d call fish suppers at home, and enjoyed it so much. And that’s – it was (unclear) and the first thing he done is, with the grand wains – we took the grand wains up, they just loved him. And he loved them.

Counsel Inquiry: And although he had Alzheimer’s and dementia, actually he was still able to recognise – (overspeaking) –

Mr Gregory McQuitty: He still knew who everybody was, yeah.

Counsel Inquiry: Good. And you explain that one of the ways in which he expressed his love for his grandchildren, and indeed more generally, the family, was through hugs?

Mr Gregory McQuitty: That’s correct, yeah.

Counsel Inquiry: Through physical contact?

Mr Gregory McQuitty: You got – you got them in entering and exiting. You’d get hugs and that was that. Yeah.

Counsel Inquiry: And you touched on this already, but, of course, things changed quite significantly when the pandemic struck –

Mr Gregory McQuitty: Yes.

Counsel Inquiry: – and you were no longer able to visit. You explained a moment ago that the care home was locked down with no notice. How did you find out that the care home was closing so that you could no longer visit?

Mr Gregory McQuitty: A sign on the door, just on the glass door.

Counsel Inquiry: Had you gone to visit on that occasion?

Mr Gregory McQuitty: Yes, we went to visit. We were up checking round my father’s home, because that was vacant. We hadn’t been in the home. And as I say, I was passing anyway, but I called down and there was just a sign on the door. No explanation, no – you know, no phone messages, no emails, nothing.

Counsel Inquiry: And were you ever able to see your father again after that day?

Mr Gregory McQuitty: No.

Counsel Inquiry: Was there any opportunity to try to speak to him, in using other forms of communication, or was that just too different because of his needs?

Mr Gregory McQuitty: That would have been too difficult, because whenever we went to see my father on a visit, it was grandchildren – you really are taking him out of the home for something to eat or even around to the seaside, you know.

Every time he’s seen you, he was getting something or took somewhere. And actually whenever you went in there, he was reaching for his shoes and you had to say, “Oh, no, we’re not going to today”, he thought …

But if you drive into the home, my father’s bedroom was the one that you drive by it, so we had – we could see him at any time. But I wasn’t going to the window to see my father. No.

Counsel Inquiry: You were concerned that if he saw you it would cause a lot of distress and upset?

Mr Gregory McQuitty: He would have been expecting some, you know, at that time.

Counsel Inquiry: And that was a very difficult decision, obviously, to make.

Mr Gregory McQuitty: Yeah.

Counsel Inquiry: Did the home – and you further explained that phone calls would not work because of his deafness?

Mr Gregory McQuitty: He had a hearing aid in both ears, correct, yes.

Counsel Inquiry: And similarly, video calls would not work because of the confusion and his other health issues?

Mr Gregory McQuitty: That’s correct.

Counsel Inquiry: Did the home separately provide you with any information about how they were going to deal with the pandemic?

Mr Gregory McQuitty: No.

Counsel Inquiry: Did they provide you with any information about isolation or access to communal areas or how your father was living at that stage?

Mr Gregory McQuitty: The only time my father was took to hospital he had a fall out of bed. And they contacted me to say that he was obviously in hospital, and then he was released again. But whenever I contacted the home to see how my father was, they said he was in the TV room and he was happy enough.

Counsel Inquiry: And in terms of the TV room, that’s when he came back out, you explain he was taken into hospital and then came back out –

Mr Gregory McQuitty: Yes.

Counsel Inquiry: – and was in the TV room?

Mr Gregory McQuitty: Uh-huh.

Counsel Inquiry: Was it possibly to socially distance in that room?

Mr Gregory McQuitty: Very, very small room, it would have been extremely hard.

Counsel Inquiry: And you explain in your statement that there was no testing, there was no isolation upon his return to the home from hospital?

Mr Gregory McQuitty: That’s correct.

Counsel Inquiry: And did you know why he went to the hospital at that point?

Mr Gregory McQuitty: He had a fall. But falls, as it says on my statement, I’ve got my father’s medical records just to clear my own for dates, et cetera, and he had 16 unwitnessed falls and the home was supposed to ring you in an emergency if he ever went to hospital.

Counsel Inquiry: Did they contact you on any of those occasions?

Mr Gregory McQuitty: They contacted me four times. And on the medical records, he attended Accident and Emergency 19.

Counsel Inquiry: And you explain that was very difficult for you to read those medical records when you subsequently did?

Mr Gregory McQuitty: Yes. Very hard reading.

Counsel Inquiry: Indeed. You had very little communication from the home generally, you set that out within your statement, but you were fortunate in that you did know some people who worked there and so you had some informal lines of communication –

Mr Gregory McQuitty: Yes.

Counsel Inquiry: – in relation to that. Were you able to get some updates in relation to your dad in that way?

Mr Gregory McQuitty: Yes, I had a niece working in it, and my friend’s sister, she was the manager in it, and she kept us informed and any sort of tips we got, that’s where it come from, because they all loved my father. My father never gave them any trouble, there was no, you know …

Counsel Inquiry: More generally in terms of updates on your father’s health, did the home keep in contact with you or was it very much a burden upon you to contact them to see how he was doing every day?

Mr Gregory McQuitty: You had to contact them, there was no effort from the home at all.

Counsel Inquiry: Now, throughout that period, are you aware if there was any Covid testing for staff or for the residents?

Mr Gregory McQuitty: No, none at all. And that come from the niece and the manager of the home, whose son actually caught it and my niece caught it.

Counsel Inquiry: Thank you. If I can go then, please, to touch upon when he was – just after he was discharged from the hospital, you’ve explained that he was initially – he’d been taken to hospital on a number of occasions but on one particular occasion he was taken to the hospital but then subsequently discharged back to the home, and you’ve explained about him being in that communal area. Following on from that, the next contact that you had from the home, as I understand it, was around 19 April?

Mr Gregory McQuitty: Yes.

Counsel Inquiry: You were told at that point that he was unwell.

Mr Gregory McQuitty: He was unwell, yes.

Counsel Inquiry: What did they say in relation to why – in relation to his condition or why he was unwell at that point?

Mr Gregory McQuitty: He was not getting any better. He had a sore throat. And – now, they didn’t tell me this, I got it from the medical records, that he had it – they said he had a swollen throat, the medical records said he had a thing on his neck the size of a tennis ball. And that wasn’t relayed to me from the home.

Counsel Inquiry: But they told you that they were sending him, at that point, to the hospital; is that right?

Mr Gregory McQuitty: Yes, that’s correct.

Counsel Inquiry: And it was when he got to the hospital that you found out that he had Covid?

Mr Gregory McQuitty: Yes, the ward sister phoned me.

Counsel Inquiry: Up until that point, were there any cases of Covid in the home that you were aware of?

Mr Gregory McQuitty: No.

Counsel Inquiry: You explain that you called the home to inform the home that your dad had Covid.

Mr Gregory McQuitty: Yes.

Counsel Inquiry: What did they tell you that they were doing at that stage?

Mr Gregory McQuitty: Well, it was from my niece and the manager, it was obvious that it seemed to be kicked in then that the Covid thing, that PPE and all come out, where they had it, or because there was no PPE in the home, they maybe didn’t have to use it, but the minute that Covid was announced, you know, they did step up now.

Counsel Inquiry: Indeed, and that’s when you explain that they explained they were putting in place emergency preparations –

Mr Gregory McQuitty: Yeah.

Counsel Inquiry: – and, as you say, using PPE?

Mr Gregory McQuitty: Yeah.

Counsel Inquiry: And following that point the home had quite a significant outbreak with staff and residents?

Mr Gregory McQuitty: Correct, yes.

Counsel Inquiry: Did the home contact you again after your father was admitted to hospital?

Mr Gregory McQuitty: No.

Counsel Inquiry: Sadly, your father was to remain in hospital until he passed away. He passed away on 2 May.

Mr Gregory McQuitty: Yes, that’s right.

Counsel Inquiry: The hospital contacted you to tell you that.

Mr Gregory McQuitty: Yes.

Counsel Inquiry: You explain in your statement you do not really know the circumstances of his death, or the treatment that he received.

Mr Gregory McQuitty: No, not a thing. We were listening to the professor earlier, and he said about the CPR. On my father’s death certificate, it took us a long while to receive it, Covid was first, with heart failure second, and we don’t know now if his heart stopped, did his heart failure kill him? Did they do CPR? Did the Covid kill him? There’s so many unanswered questions, we just don’t know.

Counsel Inquiry: Indeed, every layer or engagement that you have brings something new to the front again for you.

Mr Gregory McQuitty: Yeah.

Counsel Inquiry: In terms of his condition in the hospital, were you told that he was deteriorating or given the opportunity to see or speak to him before he died?

Mr Gregory McQuitty: I think possibly the sister might have done iPad, but, you know, masks and all on, hearing aid in each ear, dementia and Alzheimer’s also, the chances, it just didn’t work, you know …

Counsel Inquiry: You explain that the hospital and the undertaker took care of the funeral arrangements?

Mr Gregory McQuitty: Yes.

Counsel Inquiry: And you – this was obviously, again, at a point where various restrictions were in place. They told you when it would be, and organised that. How many people were able to attend?

Mr Gregory McQuitty: Eleven.

Counsel Inquiry: And how was it conducted?

Mr Gregory McQuitty: Very clinical. It was unlike anything that anybody had ever seen, the same as everybody else. You pick a coffin, you get the suit or whatever. There was nothing. We were simply told – we weren’t told, we went to the undertakers and followed the hearse out, we were told to be at the graveyard and we thought, well, (unclear) outside the undertakers, but it was nothing near normal. Not a thing about it was normal, really.

Counsel Inquiry: You explain in your witness statement that they were able to bend some of the rules a little bit for you.

Mr Gregory McQuitty: Well –

Counsel Inquiry: In –

Mr Gregory McQuitty: Aye, we got carrying him, we carried him about 10 metres.

Counsel Inquiry: And how did that impact upon your ability to grieve for your father, and have – certainly, obviously, it was not the normal way that you would undertake any of these proceedings. You explained there would normally be

a funeral, there would normally be a wake. What impact

did that have upon you and your family?

Mr Gregory McQuitty: Unbelievable. You know, there was no, nothing

whatsoever. Even the police was out on the roads, you

weren’t to be travelling at that stage. There was

a whole complete lockdown, so you couldn’t go to

anybody’s house before or after. There was no wake.

There was no stories for the grandkids, there was no –

nothing. Everybody just had to go home the minute the minister had finished his service. There was no handshakes. Nothing. Everybody had just dispersed, you know. It was just shocking. Just left everything, it was like an open book. The book was never closed.

Counsel Inquiry: And since your father’s death you’ve also sought to bring wider awareness to the position of both your family but also others during the pandemic, and you explain that you wrote to Robin Swann three times.

Mr Gregory McQuitty: Three times.

Counsel Inquiry: Did you ever get a response?

Mr Gregory McQuitty: Email – I never even got an acknowledgement, never mind a reply.

Counsel Inquiry: And it’s obviously important to you that you share your story but also, most importantly of all, your father’s story.

Mr Gregory McQuitty: Yes.

Counsel Inquiry: It’s important that the Inquiry has heard that today. Is there anything else that you would wish the Inquiry or my Lady to hear?

Mr Gregory McQuitty: Well, I’d like to thank everybody for giving me the opportunity, and any son that would get a chance, you know, you need to do it.

Counsel Inquiry: Thank you very much.

Mr Gregory McQuitty: It was shocking.

Ms Cecil: No, thank you, Mr McQuitty.

Thank you, my Lady.

Lady Hallett: Mr McQuitty, I do understand, if this is the first time you’ve spoken about it, to do so in public is extraordinarily brave.

The Witness: That’s it. And I’m nervous.

Lady Hallett: And you survived and I hope you haven’t found it too distressing but it’s not at all surprising. Obviously your grief is going to come out as you’re talking about it.

The Witness: Yeah.

Lady Hallett: So thank you very much indeed for all you’ve done to help the Inquiry and for coming over from Northern Ireland. I don’t know if it’s any consolation, but just think how your father benefited from such a close and loving family.

The Witness: Thank you, my Lady.

Lady Hallett: Thank you.

Very well. I think the plan is to go on?

Ms Cecil: Yes.

Lady Hallett: Somebody will come and talk to you,

Mr McQuitty.

Ms Carey: My Lady, yes, we will just be a moment while we

bring in the next witness, Ms Rhona Arthur.

My Lady, may I call, please, Ms Rhona Arthur.

Ms Rhona Arthur

MS RHONA ARTHUR (sworn).

Lady Hallett: Ms Arthur, I hope coming at the end of our witnesses hasn’t been too difficult for you.

Ms Rhona Arthur: No, not at all.

Lady Hallett: Have you been following the other evidence?

Ms Rhona Arthur: Absolutely, and the previous weeks of the Inquiry, as well.

Lady Hallett: It’s not been too tough for you?

Ms Rhona Arthur: No, but it’s been a long five weeks for everybody.

Lady Hallett: Yes, it has.

Ms Carey.

Questions From Lead Counsel to the Inquiry for Module 6

Ms Carey: Thank you.

Ms Arthur, your full name, please.

Ms Rhona Arthur: Rhona Elisabeth Arthur .

Lead 6: You are our final witness at the conclusion of these proceedings –

Ms Rhona Arthur: I am.

Lead 6: – and I’d like to ask you some questions, please, about the death of your mother and father back in May 2020.

Is this right that your dad, William, known as Billy, I think, died on 3 May 2020 aged 90?

Ms Rhona Arthur: That’s correct. He was just a couple of weeks short of his 91st birthday.

Lead 6: And your mum, Violet, died just 17 days later –

Ms Rhona Arthur: She did.

Lead 6: – on 20 May, when she was aged 93?

Ms Rhona Arthur: That’s correct.

Lead 6: And they had been together, I think, for 69 years?

Ms Rhona Arthur: They had.

Lead 6: And married just shy of 65 years?

Ms Rhona Arthur: That’s correct.

Lead 6: Both born in Belfast; is that right?

Ms Rhona Arthur: Absolutely.

Lead 6: But by mid-1970s they moved to Scotland?

Ms Rhona Arthur: Yes.

Lead 6: And they brought up you and your two siblings?

Ms Rhona Arthur: They did.

Lead 6: And five grandchildren?

Ms Rhona Arthur: Yes.

Lead 6: And two great grandchildren?

Ms Rhona Arthur: Yes, they were very heavily involved with their great – with their grandchildren, so they had been involved in terms of their upbringing, as well.

Lead 6: Clearly by 2020, a life well lived and long lived. Your mum, though, had begun to develop vascular dementia in her late eighties, is that right, and your dad looked after her for a long time?

Ms Rhona Arthur: That’s right.

Lead 6: But he also had some ailments, and there came a point where I think your mum had to go into a local care home first of all; is that correct?

Ms Rhona Arthur: Yes, she had been in hospital towards the end of 2017, and had had a number of difficult medical issues from which we really didn’t think she would recover. And when she was discharged from hospital, she went into a nursing home nearby my dad, so about 20 miles from me, so that she could have some rehabilitation, but we didn’t ever think that it was fair to my dad that she should go home again, because it was more of a strain on his health than I think we’d previously appreciated.

Lead 6: And there came a point, though, that your dad, then, also joined your mum?

Ms Rhona Arthur: They were devoted to each other. They were a pair of bookends, and one was not very helpful without the other. So he chose to move into the nursing home beside her.

Lead 6: Can you just help us with the nursing home, you say it’s newly purpose-built; did they have a room each? What were the arrangements for them to be with each other?

Ms Rhona Arthur: So there was four wings, it was a new build, so it was opened up wing by wing. When my mum first entered she was in the second wing to open up and my dad secured a room opposite hers in a corridor. So I think there were 12 residents in their wing, and they had a shared lounge and a shared dining room, within that wing. But it was a cohort, if you like, a natural cohort. They were on the first floor, as well.

Lead 6: And when not spending time with your mother, I think you said in your statement that your data spent his time in the greenhouse and doing various activities. Could you just tell us what he would do, sort of, on a day-to-day basis.

Ms Rhona Arthur: So my dad was a great – a great community kind of person, so there wasn’t a club or a society that he wasn’t president, secretary or treasurer of, and he really enjoyed people.

He moved into the nursing home and spotted the empty greenhouse. He had been a passionate gardener, and of course within five minutes he was getting shelving in and growing tomatoes. And then he had the nursery schoolchildren coming in and they were taught how to grow things as well.

So yes, so he was very active. He would get the keyboard out and play that in the lounge for people, Christmas carols, that kind of thing. So …

Lead 6: Can you give us a sense of the experience that your mum and dad experienced in the care home. What did you think it was like for them?

Ms Rhona Arthur: So when my mum came out of hospital she was really frail, she was really poorly. She had been in hospital at that stage for about eight or ten weeks, and she was suffering from sometimes dehydration, lack of nutrition. So getting into a proper routine, where she was helped to take more fluids during the day, to eat more healthily. We noticed even things like her hair changed, it began to really shine again, and her health picked up. She also became slightly more mobile for a while.

And of course my dad was just spoilt by all the staff because he was there all the time. And again, he was very lively and communicative, so he really interacted very well with the staff.

They then would just take the rest of the visitors and sort of wrap them into the – kind of the community life that went on in the care home.

Lead 6: I think you say in your statement that:

“Loving care was the norm.”

Ms Rhona Arthur: It was.

Lead 6: When we move, though, to March 2020 – and you say in your statement that the care home initially, on 6 March, sent out a letter as a precautionary measure halting all non-essential visits.

Ms Rhona Arthur: Yes.

Lead 6: So they did that a little bit earlier than everyone going into lockdown?

Ms Rhona Arthur: Yes.

Lead 6: And then on 12 March they wrote again announcing a lockdown unless the resident needed medical treatment. And then by the end of the month, on the 26th, there was a general ban on visits unless exceptional circumstances were permitted.

Ms Rhona Arthur: (Witness nodded)

Lead 6: So can I ask you, Ms Arthur, how did you communicate with your mum and dad once the various restrictions came in?

Ms Rhona Arthur: So, once the restrictions came in – normally I would have gone to visit on at least a weekly basis, but my dad would – he was quite digitally aware, so he would be able to Facetime, he’d be able to include my mum with Facetime calls.

For practical reasons, I mentioned earlier that they were on the first floor. So any visits that I would make – window visits weren’t really feasible when you you’re one flight up, and you can’t move across the care home because then you’d be going into somebody else’s space.

So the only alternative would be to stand in the car park and to shout up to their balcony. So it was really down to Facetime or, you know, telephone calls, which worked very well with my mother.

Lead 6: That’s what I was going to ask you about. Because with her particular cognitive difficulties, how was communication with her, sort of, by remote methods? Was she okay with it?

Ms Rhona Arthur: Yes, so although my mum had vascular dementia, she was not severely affected by it. She just lived in the moment. So you couldn’t ask her what she’d had for breakfast but she could appreciate everything that was going on around about her, as long as you were asking her about things that she could see and talk about.

So she was a bit hard of hearing, so if she had a telephone pressed up against her ear she could hear, and she could certainly understand.

Lead 6: Did you – on the video calls and the balcony visits, if I may call them that, did you see if the staff were wearing PPE at this time?

Ms Rhona Arthur: So the staff prior to Covid would have worn uniforms, and you could kind of tell from the uniform whether they were part of the domestic staff, whether they were a carer or whether they were a registered nurse. But once the restrictions came in, they quite clearly started to wear gloves that they might have used previously maybe if they were working directly with somebody. That became the norm. They had quite often visors and face masks, and aprons.

Lead 6: Were you ever told of any shortage of PPE at the care home or had any concerns of that nature?

Ms Rhona Arthur: I wasn’t aware of any shortages of PPE, and we were assured in all the written communications, which were pretty regular, that the – that, you know, all the IPC measures were in place, and there was a great emphasis on hand-washing, for instance, and social distancing.

Lead 6: And I think you set out in your statement indeed, by 7 May the care home had started asymptomatic testing.

Ms Rhona Arthur: Yes.

Lead 6: Can I just take one stage back. You mention in your statement that there were some anticipatory care discussions with your father, and I think you said your dad was adamant that he didn’t want to put anyone at risk from your family of going to visit him?

Ms Rhona Arthur: Yes. My dad was quite aware that Covid was coming from quite early on, because he was still very active. He was still trading in stocks and shares, so he was looking at this advancing crisis and thinking about how that would affect things. And we had had a fairly lengthy discussion about what would happen.

He had said that he was aware that any funerals would not be normal, and that that might not be possible. He asked that nobody should be put at any additional risk, and that if it was possible, in the fullness of time, that we would have a memorial service for him.

Lead 6: So rather than people bringing in the infection, he didn’t want the verification creeping out?

Ms Rhona Arthur: (Witness nodded)

Lead 6: Right. And in that regard I think you say in your statement that the families in fact got a letter from the care home at the beginning of April, when the care home was considering taking patients that had been discharged from hospitals, and they said they had in place screening processes to ensure that no one who was symptomatic would be admitted to the home.

Do you know what those screening processes were?

Ms Rhona Arthur: No, I don’t think the letter actually explains that. I would have taken it to be anybody who was displaying the key, kind of, Covid characteristics, the cough, the raised temperature, that kind of thing.

Lead 6: And I think you say that some of the families were not particularly happy with that letter. Within 48 hours the care home in fact then changed its policy to say there would be no admissions from hospital, or indeed readmissions from hospital, unless the individual had actually got a negative Covid test?

Ms Rhona Arthur: Yes, that’s correct.

Lead 6: Now, can I come to your father firstly, please, if I may. I think you were told on 25 April that he had a slight temperature, and it was a few days later, on the 30th, that he got his test result back, which was Covid-positive?

Ms Rhona Arthur: That’s correct.

Lead 6: And were you able to speak to him on the daily calls at that time?

Ms Rhona Arthur: Yes, yes. We were all in touch with him, my brothers as well, and he was still actively emailing and messaging, as well. He was just, I would describe it as a little under the weather in those early days.

Lead 6: Did you know whether he’d actually, since the end of February or the beginning of March, had he ever actually been out of the home into the community?

Ms Rhona Arthur: No, he hadn’t. He wasn’t – he could get as far as the greenhouse, he had quite a significant physical mobility issue, so he could get as far as the greenhouse, but only if he went the direct route. If he walked round the care home to go in the far gate, that would be a long walk for him. But he couldn’t so much as cross the road.

Lead 6: So does it follow that from your perspective, infection must have come to him rather –

Ms Rhona Arthur: Absolutely.

Lead 6: – than him leaving the care home and getting it out in the community?

Ms Rhona Arthur: Absolutely.

Lead 6: All right. And I think a GP was called for your dad on the 30th, the GP came to visit him in the care home, and suggested that your dad go to the hospital because they thought it would help your dad with his breathing?

Ms Rhona Arthur: That’s correct.

Lead 6: Can I just ask you, then, a little bit about what happened to your dad in hospital. I think you say you spoke to him that afternoon.

Ms Rhona Arthur: I did.

Lead 6: And how did he seem when you spoke to him?

Ms Rhona Arthur: I phoned him – no, he phoned me, and he said they thought he was doing quite well, coping quite well, that he didn’t need oxygen at that stage and he was in a room by himself, and he felt quite kind of comfortable. I think he was reassured that he was in the City hospital.

Lead 6: And then just a few hours later, I think three hours later, though, you got a call from the hospital doctor, who wanted to discuss with you a do not resuscitate notice. Just help us, just how did that conversation develop?

Ms Rhona Arthur: So the doctor had phoned and had explained, you know, what they were doing in terms of treatment and had said that they wanted to discuss a DNACPR. Now, I explained earlier that my mother had been in hospital a couple of years prior to that and we had a DNACPR discussion, the whole family, the doctor, and at that point I know my father was really quite distressed by the thought of the impact of a DNACPR on my mother.

So it was his choice to have that notice, according to the doctor, and of course, the family supported his decision.

Lead 6: But very shortly after that, about three hours later, I think were you informed that your father had rapidly deteriorated and in fact the doctors were worried that he was not going to survive the night?

Ms Rhona Arthur: Yes, they said he would not survive the night.

Lead 6: He did though, for a few days?

Ms Rhona Arthur: He did, he did.

Lead 6: But sadly died on 3 May.

Ms Rhona Arthur: He did.

Lead 6: Right. And I think you were allowed to spend some time with your father after he’d died?

Ms Rhona Arthur: That’s correct.

Lead 6: Can you help, were you able to sit with him? Were you allowed to touch him? Were you wearing PPE?

Ms Rhona Arthur: So the hospital had the PPE available for me, and let me go in and sit with him for as long as I wanted to do that.

Lead 6: And Covid-19 was given as the primary cause of death on your father’s death certificate.

Ms Rhona Arthur: That’s correct.

Lead 6: May I ask you about your mum, though.

Ms Rhona Arthur: You can.

Lead 6: Because clearly she was in the care home and you’ve told us about her cognitive abilities. Were you able to break it to your mum that her husband had died?

Ms Rhona Arthur: Yes, my mother was my first thought, because obviously her loss was the most significant, and I really had no other option other than to use the telephone. I had spoken to the manageress in the nursing home, and the staff, because they were so fond of my parents, a member of staff had volunteered to sit with her and to provide that emotional support, and that’s a burden for anybody to have to do. And similarly, with my dad, the hospital staff fielded the end-of-life calls from three of us, as well. So I think there’s an enormous debt of gratitude that we owe them.

Lead 6: Understandably. Your mum understood what had happened to your dad –

Ms Rhona Arthur: (Witness nodded)

Lead 6: – and I think you say there was a decline, really, in how she was ever since she got the news?

Ms Rhona Arthur: Yeah.

Lead 6: You were then making funeral arrangements for your father, trying to help your mother with her grief, and though she tested positive on 9 May, and I think you’d arranged your father’s funeral for 18 May and you say in your statement that as you were going into the crematorium you got a call from the care home about your mum. What did they tell you about your mother?

Ms Rhona Arthur: They said at that time that the – her health was giving them cause for concern. In the intervening period, she had just lost heart, and became quite withdrawn and spending a lot more time in bed than would have been her norm. Her norm every day would be to be up and to be in the residents’ lounge and mixing with people. So it was quite unusual, that. And we weren’t really sure if it was grief or if it was Covid, but equally, she didn’t have any symptoms. So although she tested positive and had been exposed since at least 25 April, even by the middle of May she wasn’t showing any of the key symptoms.

Lead 6: And you and your brothers were phoning her up and singing to her down the phone and, no doubt, trying to keep her spirits up as best you could. The funeral was presumably under restrictions with very few family. How many of you were there?

Ms Rhona Arthur: Until about two days beforehand, I was determined that it would just be me, but my husband persuaded me that this was one household going to one place, and that it would be a good idea. So there were three of us: my husband, my son, and myself at his funeral.

Lead 6: And then just, I think, two days later you got a call from the care home to say that your mum’s oxygen levels had dropped and they were clearly worried about her. Were you offered an end-of-life visit to go and see your mum?

Ms Rhona Arthur: I was, and I paused to tell my husband and my son and my daughter, who doesn’t live with us, and my brothers, and by that stage the care home phoned back to say that they had discovered that she had died during one of the rounds.

Lead 6: Within half an hour or 35 minutes, or so?

Ms Rhona Arthur: Less than that, probably.

Lead 6: Right. And I think your mum’s death certificate noted Covid-19 as the primary cause of death as well?

Ms Rhona Arthur: Yes.

Lead 6: And so another funeral to arrange, Ms Arthur. This time were you still limited with the numbers? It’s just a couple of weeks later.

Ms Rhona Arthur: The restrictions in Scotland, the travel restrictions had just changed, which meant that my daughter could travel across from another part of Scotland, and go to her grandmother’s funeral. So we sat in an empty crematorium, the four of us, with my daughter at the far side of the crematorium at the funeral.

Lead 6: Can I ask you this: you say in your statement that the day that your mum died was the day that in the press there were photos of the drinks party at Downing Street. How did that make you and your family feel, having just lost now your other parent and seeing photos like that?

Ms Rhona Arthur: Yeah, it was – it just felt so cruel, you know, that we had done all the right things, that we had followed all the rules, down to the funerals, to then see that. And of course, that picture is regularly reprinted, which means that it just brings that terrible day back all the time.

Lead 6: Before I look at the impact with you – on you and your family, did you get any sense of the impact of the death of both of your parents on the care home staff and how they felt about it?

Ms Rhona Arthur: Yeah, the care home staff, obviously I had to go back to pick up the things from their rooms, and there were a number of kind of informal conversations. They had been very fond of my parents. They had had a number of deaths, and the Public Health Scotland data that was published on 1 October in 2021 gives you the idea of how many died within a very short space of time, many from the wing of the care home that they were in. So friends and colleagues, and I think certainly they said when my mother died, that it had an extreme impact on staff of the fact that I think she was so – she was such a gentle woman, and that it was such a terrible thing to lose her husband, and then to go through that suffering herself.

Lead 6: And the impact on you and your family? Are you able to just summarise, if at all it’s possible to summarise it, how you feel now?

Ms Rhona Arthur: For a long time I described it as being like a house with the roof ripped off. Because that’s just – just that kind of idea about how empty and devastating a double loss is.

It’s very difficult to talk to people about. People say, “Oh, you know, what happened to you during Covid?” You cannot just say to somebody, “Well, actually, both my parents died within a fortnight.” It’s a complete and utter devastating blow in a conversation. So it’s – it’s better just maybe not to talk too much about these things.

Lead 6: I think one of the things you did say, and I wanted to just finally ask you about this, you say:

“Their passing has left a massive hole in my family’s lives. It is important the Inquiry understands that my family did not lose ‘a burden’ that was weighing us down. We lost who wonderful advisers, guides and experts who connected us to each other and to our culture, heritage and past.”

Why did you want to make that point to us, Ms Arthur?

Ms Rhona Arthur: So, my father particularly was still economically active, as was my mother. I think there’s a subtle ageism in our society, and sometimes not so subtle, where, you know, there’s a vision of care homes as being places where people are shut away to be – live out their days forgotten about, sleeping off in a chair. And it doesn’t have to be like that. We were always part of the care home family, and my parents were still fulfilling useful roles in society as well as within their own community in the care home.

So I was very keen – and I think there’s also something about there were things that I would only talk to my mum and dad about, you know, that are cultural, that are heritage, that you would share with somebody. Like I probably wouldn’t sit down with anybody else and talk about a piece of music the way I would with my dad or, you know, point holes in the minister’s sermon, which we regularly did on a Sunday afternoon.

Lead 6: Ms Arthur, they are all the questions I want to ask you. Is there anything else you would like to say before I turn to her Ladyship?

Ms Rhona Arthur: I think the only thing I would like to say, really, is about the care homes and this idea that – that they should have been equipped to enact the guidance. We know that there was so much lacking in terms of PPE, in terms of testing. It was an almost impossible task that they were given, you know, to take those hospital discharges. We’ve still got questions about the human rights issues that surround that.

So I think there’s still quite a lot of important work to do for the Inquiry. So thank you very much.

Lady Hallett: Challenge noted.

The Witness: Yes.

Lady Hallett: Thank you very much indeed for coming along to help us. Have you come from Scotland today?

The Witness: No, yesterday.

Lady Hallett: Yesterday. It doesn’t matter how old one is or how old one’s parents are, to lose one parent is horrible, so for you to lose two in such a short space of time must have been truly horrendous for you, and then not to be able to grieve in the way that we would normally grieve. So thank you very much indeed for telling us about your wonderful parents.

I bet the staff at the care home miss those tomatoes.

The Witness: I bet they do.

Lady Hallett: I know I would.

Anyway, thank you so much for coming along and for giving us your help.

The Witness: Thank you.

Ms Carey: Thank you.

Lady Hallett: Very well. I think that we’re now on to closing submissions.

Ms Carey: We are.

Lady Hallett: That completes the evidence for this module.

Ms Carey: It does.

Lady Hallett: And I shall return at 3.15.

Ms Carey: Thank you, my Lady.

Lady Hallett: Someone will come and talk to you, Ms Arthur, I’m sure.

(2.56 pm)

(A short break)

(3.15 pm)

Lady Hallett: Ms Morris.

I’m sorry that you and Ms Campbell and Mr Stanton are having to make your closing submissions after such a powerful day of evidence, but anyway. Thank you. Closing statement on behalf of Covid Bereaved Families for

Justice UK by MS MORRIS KC

Ms Morris: My Lady, it has been a difficult day, particularly for the bereaved families –

Lady Hallett: I know.

Ms Morris: – but I am grateful for the recognition, thank you.

My Lady, on behalf of Covid Bereaved Families for Justice UK, I make the following submissions in closing on Module 6.

The Inquiry has heard across the last 18 days of evidence that before the pandemic, the social care sector was poorly understood, poorly funded, poorly represented within and poorly engaged by government.

This was nothing new to those working in or caring for people in the sector; its fragility was well known. But what the Inquiry has uncovered is that not only is the situation no better than at the start of the pandemic but in fact it is worse.

My Lady, reform will not wait for another winter. Baroness Casey’s commission will not complete phase 1 of its work until 2026 but work on reform is long overdue and needs to start now.

The Inquiry must engage with, and make recommendations on, key structural issues underpinning the failures of government to throw a protective ring around the care sector, those who were and continue to be the most vulnerable to the impact of a pandemic.

The focus in your report, my Lady, must not be on rhetoric but on recommendations, so to this end I’ll use my time in addressing you to identify key recommendations that the bereaved families that I represent are clear must be made and must be implemented to ensure that the adult social care sector, a vital pillar of our communities, our families, is both robust and able to safely and compassionately provide the care that people need even in the next pandemic.

So my first area of recommendations is on the issue of parity. The first problem is in conceptualising health and social care as separate needs for any given person. For those with care needs, there is no optimum health without adequate social care. They have long been seen as separate and competing service interests within government. Social care should not be the “Cinderella service” or “poor relative” to health service. It needs to be recognised as one system for supporting people holistically with their needs.

As Professor Rayner said, there is a need to recognise the importance and expertise of social care as equal partners to healthcare providers.

This lack of parity continues to manifest itself through insufficient resources, insufficient wages and insufficient IPC measures.

The position is even worse for domiciliary care providers and unpaid carers, and the tireless work that they do still barely receives a mention in government policy considerations.

This lack of parity is exemplified by two important pandemic examples on the evidence before the Inquiry. First, it is clear from Helen Whately’s evidence that the March 2020 policy of discharging untested patients to care homes was an example of the needs of the NHS taking precedence over social care.

The leaders in the NHS England were focused on what they needed to do to “protect the NHS”. Ms Whately didn’t see them being concerned for what that would mean for social care.

The discharge of untested patients from hospitals into care homes without adequate isolation facilities must never happen again. Whether discharge was the dominant route is a distraction. It was a route, and it cost lives.

Ms Whately rejected the certainty of the UK Government position on the impact of the policy, which, as the Inquiry has established, is undermined by the lack of testing in the key period that the policy operated within.

The second example is the inadequate provision of PPE to care workers across the sector. Responses to the LGA survey prepared for the Inquiry suggest that 44% of the local authorities in England experienced PPE being delivered to the NHS very or fairly often in the first six months of the pandemic.

Christina McAnea from the TUC gave examples of the lack of availability of PPE and guidance for domiciliary care workers; in contrast, the escalations in availability and advice to health workers, many of whom would be visiting the same individuals but with better IPC than their care counterparts.

Reverend Charlotte Hudd spoke of the stark realisation that she had when she realised that funeral directors were coming into the nursing homes where she worked suited and booted in hazmat suits to protect them from her.

But of course, the two examples, my Lady, are also connected, discharging people from hospitals before testing was widespread into locations where it was known that there was inadequate PPE, then that only compounded an entirely foreseeable risk of infection within those settings.

My Lady, then, to the future and recommendations on parity. The pandemic was a “sliding doors” moment, where those at the heart of government should have appreciated the social care needs and gripped the resources from the centre. As Caroline Abrahams from Age UK set out, there are three things that the Inquiry should now recommend as a matter of urgency.

First, there is a need for a genuine national care service in each of the four nations and jurisdictions with more national infrastructure to support it. The current UK Government has committed to a national care service and the Inquiry should state its unequivocal support for this policy commitment and the urgency of it.

Second, there needs to be more recognition of the rights of older people and the rights of their carers to be real partners in their care.

Third, there must be more structures within government to represent the rights of people with care needs. Helen Whately said that she often would be the only person at a high-level meeting with any input from social care. She also highlighted the need for the UKHSA, the NHS and the DHSC to think about the health of the whole population, including those with care needs.

We would add to those recommendations the introduction of a real carer’s wage, and would emphasise that matters of resourcing are not outside the Inquiry’s terms of reference. As Ms Carey King’s Counsel said to Ms Killian on Monday, my Lady, you’re under no illusions about the underfunding and the fragility of the adult social care sector.

And whilst it might be a matter for the Executive to determine the allocation of resources, the evidence of the impact of under-resourcing and disparities in resources and the fragility it creates is an entirely proper matter for the Inquiry to make findings upon and indicate the areas in which additional infrastructure and resources are urgently required.

Without recommendations focused on greater resourcing and an increase in capacity, no number of policies or guidance will address the core weaknesses. As Professor Barclay told you this morning:

“… the way to make sure [something] really happens is to say: right, we’re going to resource it.”

My Lady, I then turn to my second area of recommendations and the issue of preparedness. You may recall that, in Module 1, Covid Bereaved Families for Justice UK made recommendations that legal duties should be placed on central government to ensure that up-to-date national planning, guidance, information sharing, oversight and assurance exist to prepare for the next inevitable pandemic.

Helen Whately correctly identified that for robust planning, there needs to be multiple plans: the care provider level, the local authority level, and a national level. But here, there wasn’t a national plan for social care and the Social Care Minister wasn’t able to obtain the entirely inadequate local authority plans until March 2020.

Cathie Williams told the Inquiry that care providers need to have contingency plans according to regulations but not pandemic plans. Joanna Killian confirmed that local authorities had to have pandemic flu plans, but that was the wrong plan for the pandemic that did in fact strike.

It seems that local authorities in England are awaiting the recommendations from the Exercise Pegasus in autumn 2025 to inform their work going forward.

My Lady, you asked Ms Killian: what is in place for the recommendations of that exercise to be acted on? Noting that key recommendations from Exercise Cygnus weren’t.

The answer you received was vague and imprecise, but your recommendations can make clear that there should be a responsibility on both local authorities and care providers to have those pandemic plans in place, with a clear framework to ensure minimum standards and adequate central oversight.

I now turn to my third area of recommendations: the issue around the lack of proper data and oversight. All the witnesses in this module, my Lady, agree that there is an urgent need for better data infrastructure within adult social care.

So, four clear and obvious recommendations emerge.

First, the need for a national register of care workers within each of the four nations.

Second, more availability of data on the number of people who draw on care and support, and those who care for them, to ensure better provision and access to essential pandemic response services such as vaccines, such as PPE.

Third, the seamless linkage of social care and NHS data.

And fourth, better mortality data to identify who, when and why people die whilst receiving care.

But data alone is nothing without on-the-ground intelligence and oversight. The Inquiry has also heard of a lack of accountability and transparency within government at key moments in the pandemic response, what Caroline Abrahams called the circling of the wagons, thereby further excluding those advocating on behalf of the sector.

Of the greatest concern must be the lack of oversight of the sector. The CQC in non-pandemic times provides a supportive rather than directive role, and during the pandemic, withdrew its inspectors going AWOL, as Nadra Ahmed from the National Care Association put it.

During a pandemic, there must be more scrutiny, not less, particularly behind closed doors. Both routine and emergency inspections must continue during a pandemic, not only to monitor whether effective IPCs, such as isolation and PPE are in place, but to protect vulnerable people from neglect at a time when access and oversight by family and friends may be limited.

Care Rights UK called this a line that should not be crossed.

Moving then, my Lady, to my fourth and final area of recommendations around a people-centred approach to care. The impact of the pandemic on those receiving social care was both devastating and disproportionate. 27,000 people died in care homes in the first wave, hence Alasdair Donaldson’s categorisation of it as a generational slaughter.

There can be no doubt that the pandemic had a disproportionate effect on people in receipt of care. Professor Banerjee highlighted that those living with dementia suffered the highest level of mortality. This was entire foreseeable given that so many people living with dementia will be older in age and have complex comorbidities. But each of the 27,000 is a human being that was loved, and my Lady, I know you cannot fail to have been moved by the evidence that’s been heard in this module from those who lost their loved ones.

May I remind you of the many and varied accounts from the Covid Bereaved Families for Justice UK, and friends within the written statement of Jean Adamson. But what all of those harrowing stories highlight is the need for those at the centre to properly understand the nature and significance of compassionate, holistic and people-centred care. People in social care are people, not numbers, or statistics or things to be moved around.

The first example from the pandemic of the need for a people-centred care is the restrictions imposed on visiting. My Lady, I know from your questions of the witnesses that you are focused on the competing risks that are involved in creating guidance for visiting and the importance of balancing the need to reduce the risk of infection against the need for people receiving care to receive those visits from their friends and family.

But your recommendations must reflect the recognition that visiting is more than just cups of tea. They are essential to the mental and physical wellbeing of those receiving care. Family and friends are often the ears, eyes, voices and memory for the people that they care for.

Susan Gregson’s story illustrates the distress and acute social isolation felt by people living with dementia. Susan moved into a nursing home in August 2020 and in that October visits were stopped. Due to her dementia, Susan was unable to use the phone or Skype without considerable support. Her daughter Nicola describes the agony of those phone calls in the CBFFJ witness statement.

When the care provider thought that Susan was at the end of life, her family was allowed to visit, but when she rallied, those visits were once again stopped; a decision that will haunt Nicola forever.

Not all care homes were even able to or willing to facilitate electronic communications. Larry Byrne tells the Inquiry that when his dad, Laurence Byrne Senior, became unwell, the care home staff would not let Larry speak to him and was told that his father had been admitted to hospital by email.

The right to visit is central to the wellbeing of those in receipt of care especially during a pandemic and the Inquiry should be categorical in its support for essential care supporters being part of the care team in a future pandemic, through the introduction of Gloria’s Law which Jane Wier-Wierzbowska told you about in her evidence at the start of the hearings.

A second example of the need to deliver people-centred care is the use and abuse of DNACPRs. Many CBFFJ families have provided evidence about DNACPR notices being put in place for their loved ones without their knowledge or consent. It is clear from the evidence of Helena Herklots and Professor Rayner that these were not isolated incidents. Professor Rayner was clear that blanket DNACPRs did happen and that there were people and families receiving letters and calls from clinicians informing them that they could be subject to a ceiling of care. Messages that no one should ever receive.

Professor Barclay made no apology this morning for using the word “shocking”.

It is yet further evidence, if it were needed, that there was, as Professor Banerjee put it, a set of potential biases that entered into clinical decision making, and a generation of health and policy and delivery based on negative attitudes towards older people.

Those who receive those letters still don’t know how high up those decisions went, to CCG level or above, and it’s also another stark example of the capacity of the NHS taking precedence over the needs and lives of those receiving social care.

As we know from Linda Dinsdale’s evidence this afternoon, and from Kamran Mallick, and from Professors Hatton and Hastings, it wasn’t just older people, it was people living with disabilities, in receipt of care, who were refused access to intensive care units or ventilators.

The Inquiry should not only be clear about the existence of blanket DNACPRs but also be clear in its recommendation that they can never be appropriate to propose or even tacitly permit.

My Lady, in conclusion, the pandemic required – the pandemic exposed the fragility of the sector, and you now have before you the detailed and harrowing evidence and reflections of where the cracks are and the recommendations of the urgent reform that is needed.

My Lady, your findings and recommendations can inform and support the work of the Casey review, but should not wait. The Covid Bereaved Families ask you not just to bear witness, but to be bold and to recommend the changes that are so desperately now needed.

Thank you, my Lady.

Lady Hallett: Extremely helpful, Ms Morris. Thank you very much indeed.

Ms Campbell. Closing statement on behalf of Northern Ireland Covid-19 Bereaved Families for Justice by MS CAMPBELL KC

Ms Campbell: My Lady, as you’ve just acknowledged, you’ve set us quite a task to address you on behalf of the bereaved in the aftermath of the powerful evidence you’ve heard this afternoon.

What was said, how it was said, and what had to be left unsaid encapsulates the impact of the issues in this module upon the bereaved in a way in which it would be impossible for any advocate to do.

It’s also impossible to listen to the evidence in this module and not to reflect upon its interrelationship with the evidence that you’ve heard in earlier modules: the poor preparation evidenced in Module 1, the chaos at the heart of Westminster in Module 2, which still hurts the bereaved, the dysfunction and division within the Northern Ireland Executive that intensified, in fact, as the pandemic continued, followed by a spike in deaths, you’ll remember, in early 2021.

The failure to initially consider the care sector in the procurement and distribution of PPE in Module 5, the missed opportunities for test, trace and isolate in Module 7.

Much of the ground that you have covered in your earlier modules reaches denouement in this module, and for far too many, as we’ve just heard, the ending is far from happy.

But having listened to all the evidence in Module 6, we know a great deal now about how it happened, but why so many in social care had to endure so much suffering and for so long remains elusive.

It’s not that as a society we don’t love and cherish our older generation and all who rely on the care sector. Quite the opposite. Like many thousands of others, Agnes McCusker, from whom you heard at the outset of this module, and Gregory McQuitty, from whom you’ve just heard, loved their parents so much, and wanted to protect them so dearly, that they made the ultimate sacrifice and stayed away, even though every sinew of their being strained against that separation.

And it’s not that our government and civil servants didn’t know and had not been told before and during the pandemic that those reliant on the social care system required special consideration, not just by locking them away from the world, but considering how to keep them safe in the world.

And it’s not that sector expertise was not available, either from medical professionals or from voluntary, community, or charity sector representatives, or from residents and their families. The quality of the evidence that you’ve heard in this module from the bereaved, from expert witnesses, from Care Rights UK, John’s Campaign, The Patients Association, Disability Action, Age UK, Kanlungan, and more, is powerful evidence of the value, insight and expertise that they can bring.

Neither is it that the frailty of the care system wasn’t fully appreciated or that the additional demands being placed on it in order, including to protect the NHS, were not clear from the outset. Or that the statistics from China, from Italy, didn’t reveal the threat that this virus presented to older people and the medically vulnerable. So why, then, did so many in the care sector suffer and die, too often alone?

It’s possible that the inherent problems in the sector were just too many to be faced. We’ve heard the repeated refrain, sometimes accompanied by a gentle shrug of the shoulders, that it’s the Cinderella service, as though that’s the answer and not the problem.

Is it because our respective governments, as you heard yesterday, don’t really understand how the care sector works? Tens of thousands of providers, many of them privately owned and operating, providing a range of services that few in government have sufficient insight into.

Or is it because the care sector is propped up by a workforce who traditionally just get on with it? A network of 1.6 million employed people, and many millions more unpaid, the vast majority of whom compassionately, stoically, and with little expectation for acknowledgement or reward, show up every day, go countless extra miles to ensure that care is delivered, problems are solved, and people are safe.

Or does it reflect an inherent ageism and disablism in our society that when you reach a certain stage in life, to borrow a quote from an earlier module, you’ve had a good innings and your time will be up soon enough anyway?

My Lady, the Northern Ireland Covid Bereaved consider that all of those issues and more are interconnected and, in our rapidly aging society, need urgent redress, and we wholeheartedly agree with the submissions that you’ve just heard from Ms Morris King’s Counsel urging the Inquiry to be future looking in its recommendation and reports.

In order to do that from a Northern Ireland perspective, the starting point, we again submit to you, is to dismantle institutional defensiveness, to break down silos, and to rebuild based on learning and collaboration.

As Ms Sansome put to you so powerfully yesterday afternoon, you can’t legislate for what you don’t question or what you only understand in part.

And we would add neither can you issue guidance or fix or repair or properly seek to influence or control what you don’t sufficiently understand. And the concern, from a Northern Irish perspective, is that there’s still very much learning to be done.

And touching, if I may, on some examples, starting with our integrated health and social care system, which has been held up as a beneficial feature time and again, and yet we know that there was little appreciable difference in terms of outcomes in Northern Ireland. We know that in the north, as with other regions, the health sector sees the care sector as there to support its effective functioning and with too little understanding or value placed on how social care works independently and interdependently.

It’s clear from the evidence that whether integrated or not, care systems are seen by government as a lower priority, and different to health systems. Given the weight of the evidence that you’ve heard, I’ll take that point as well established.

But in Northern Ireland in particular, the care system has evolved absent any policy or plan to be operated in large part by disparate independent companies over which going into the pandemic, and still, the Executive that very little insight or control. In reality, it’s a system that isn’t really integrated at all, and the Department’s failure to coherently address that is a core problem and a root cause of many of the problems which manifested.

My Lady, you’re familiar with these problems and you’ve been told they include no real understanding of the actual position of the care sector or real-time information from it, as the pandemic emerged. As described in the evidence of Sean Holland, our former Chief Social Worker, in the healthcare sector, on any given morning, in the Department with a few phone calls you could find out how many ICU beds were available, how many were occupied, maybe you would know about staffing pressures, but the same was not true of care homes, much less domiciliary or home-based care.

The consequences were almost inevitable, not just a lack of insight into the actual position in the sector, but then consequential difficulties in engaging with disparate, independent providers in the development of policy and guidance; difficulties in securing the implementation of sector-wide guidance in a uniform manner; difficulties from the care sector’s perspective in knowing where the guidance was going to come from, often receiving different sets of guidance from different agencies, absent any clear lines of responsibility; and difficulties on the part of residents and their families in navigating this complex and fragmented system, and knowing what their rights are within it.

The Northern Ireland Bereaved contend that these problems are not, and should not be, insurmountable. There are many areas of government where operational delivery is managed by independent providers. What is required is a mechanism to allow for its effective oversight, and for engagement with the totality of independent providers and service users.

And yet, our Department of Health still has no coherent plan for addressing this problem. The various discussions you heard during the evidence about potentially using legislation or using trust contracts with providers, or even establishing a Social Care Trust to bring about a standardised sector demonstrates the ongoing lack of thought that has been given to this problem. It’s clear that the Department of Health’s attempts to grapple with these issues haven’t yet begun.

And my Lady, turning to Care Partner guidance, because that lack of oversight and control of the care sector is brought into stark relief by the attempts to implement this guidance. We will of course revisit this in our written submissions, but you know the problems that manifested when the department sought to issue sector-wide guidance that was resisted by a significant proportion of the sector.

We recall again Sean Holland’s evidence of the department’s failure to fully consult with representatives of the independent care sector, the IHCP, apparently casually dismissing them as a small organisation who had, by then, had enough access already, and suggesting that the department’s approach of dealing with individual care homes directly was sufficient.

My Lady, we looked at the chronology of correspondence in the evidence of Robin Swann, letter after letter ignored, frustrations expressed by the IHCP about the lack of responses from the department, we learned just yesterday in the evidence of Claire Sutton from the RCN, were shared by her colleagues in the ISNMN who, over the same time, raised the same issues and faced the same wall of silence.

Simultaneously, we know that there were no enforcement attempts by the department, the RQIA, or any other agency. Even offers of more funding made too little difference.

My Lady, I stress again that many within the Northern Ireland Covid Bereaved reject the position adopted by those care homes that declined to implement the Care Partner guidance. It caused untold distress and harm, but the decision of the department in not engaging with the sector representatives to address the intransigence was very clearly part of the problem.

And the consequence of that impasse between providers and the department was felt most acutely by residents and their families.

The Northern Ireland Covid Bereaved corporate statement from this module reminds you of the evidence of Marion Reynolds, and you’ll need no reminder of her evidence in Module 2C about her own experience in trying to gain access in autumn 2020 to the care home in which her much-loved Aunt Marie resided, and the experience of Martina Ferguson who was one of those who campaigned relentlessly for Care Partner guidance and yet was also one of those who was consistently refused access to her mother Ursula, who lived in the care of a large, independent care home provider.

We repeat our concerns that the department’s self-congratulation on the development of Care Partner guidance in positioning itself as a world leader in patient-centred care is misplaced or, at the very least, premature. The guidance, which of course can properly be credited to the determination of so many of the bereaved we represent, has not yet been given statutory or even contractual protections, which provides little reassurance to residents and families in the care sector at present.

There is still, my Lady, much work to be done.

I touch briefly on the issue of hospital discharge into the care sector to note that the acceptance that you heard in evidence about the inherent weaknesses in the report of Dr Herity represents a subtle shift from the position previously adopted by the Department of Health both at the time of receipt of that report and up to and including the written statements in preparation for this module. At the height of the second wave in November 2020, under cover of a letter signed by the Chief Medical Officer, the Chief Social Worker and the Chief Nursing Officer, Professor Herity’s report was distributed to providers as evidence that the fears about the relationships between hospital discharges and outbreaks of Covid in care homes were, and I quote, “unfounded”.

In evidence before you, however, there was a shift from that position, an acceptance that the lack of widespread testing of patients meant that the risks that arose from hospital discharge of untested patients couldn’t be quantified. The Herity report was, as Professor McBride told you, a descriptive piece but there were limitations in terms of the study, the main one being that there was very limited testing going on at that point in time, and only the individuals being tested were those ones with symptoms.

That is, my Lady, undoubtedly true, but the concern of the Northern Ireland Bereaved is that the real-time shift by the department in their reliance on the Herity report in the course of this module in turn reveals an absence, at least until now, of any critical thinking within the department about the failures of the discharge policy during the pandemic, which doesn’t bode well for any future pandemic planning.

There is a clear need in our integrated system to consider what a future discharge policy would actually look like, including testing, appropriate facilities for isolation, contingencies where such facilities or tests are unavailable, and quarantine requirements. But again, there’s little evidence that that work has begun.

My Lady, given the limited time available, we will return to other issues in writing, including the realities for domiciliary care. And you will recall clearly the evidence of Hazel Gray, in Module 7, whose parents, up until their deaths, relied on the attendance of carers several times a day. Hazel told you of her shock at discovering that those carers were not routinely tested. That shock has echoed through the evidence in this module.

We’ll address the RQIA and the impossibility of having risk-led inspections, when, as you were told by Briege Donaghy, the methodology for assessment of risk-led inspections hadn’t been developed at the time that those in-person inspections stopped.

We will address too the experiences of social workers during the pandemic, and of course the impact on our massive workforce of unpaid carers, about which I have dressed you previously.

And we will seek to assist you in identifying recommendations that future-proof the social care sector, which will inevitably include the need to collaborate, to consult, and to learn based on an understanding and appreciation of what the care sector achieves and why it is so important.

It will include the need for parity of esteem between health and social care, so that each receive the necessary respect and investment, and that the communication lines between them, whether in an integrated system or not, are much better aligned.

It must include investment in the workforce, building workforce resilience by increasing staff recruitment, retention, training, guidance, pay, safety and psychological support.

It must also include investment in buildings. This module hasn’t heard much oral evidence on the topic, but the importance of having well designed, future-proofed buildings is addressed, we know, within the written statements.

The clear lines of responsibility that are needed for the procurement of PPE for care systems and health services.

We will address the need to continue to invest in technological facilities to support greater levels of virtual visiting in healthcare, for all of the reasons so eloquently stressed by Joanne Sansome yesterday, and the importance of implementing and maintaining a robust inspection regime.

Within care homes, we need to think about appointing trained infection controllers, not just for nursing staff but all staff should be trained in IPC measures.

And also, the prohibition or significant restriction on the movement of staff between care homes and the need to place Care Partner guidance on a statutory footing once and for all.

But above all, my Lady, what is required is an understanding that mental health, well-being, emotional support and personal assistance with basic care needs are as important as protecting physical health, and that the removal of contact with loved ones is, for many, a price too great to pay.

It was cruel, it was painful, and, my Lady, on behalf of the Northern Ireland Covid Bereaved, we suggest it must never be repeated.

Thank you.

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

Can I just repeat, I know you know and Ms Morris knows, everyone knows, but just in case someone is following online who don’t know, I will of course be paying extraordinarily close attention to any written submissions that people submit. Just in case people wonder why you’re having to go through – you and Ms Morris and Mr Stanton had a limited time, so thank you.

Mr Stanton. Closing statement on behalf of Covid-19 Bereaved Families

for Justice Cymru by MR STANTON

Mr Stanton: Thank you, my Lady.

My Lady, the overall closing statements on behalf of the Covid-19 Bereaved Families for Justice Cymru is as follows: the findings of the Vivaldi Study are a damning indictment of the failure to protect the most vulnerable within our society, and raise serious questions about the extent to which the right to life was protected.

The study found that 33% of surviving care home residents were infected with Covid-19 during the first wave, and that once infected, there was a 36% chance they would die.

To show how wholly disproportionate these risks were, the ONS estimates that as of 19 August 2020, just 1.8% of those living in private households in Wales had been infected, and the death rate in the general population was around 1%. This closing statement highlights four specific areas of failure, all of which contributed to the appalling outcomes in care homes in Wales.

First, testing failures. Testing decisions and policy in Wales were so slow, dysfunctional and reactionary that it’s hard to know where to begin. Emails from Care Inspectorate Wales following a meeting with Welsh Government on 22 April 2020 record that testing arrangements are fragmented and differ across Wales, there is no central lead for testing, and no one could answer the question who or what organisation is in charge.

Similarly, Professor Khaw confirmed during his evidence that there was a disconnect between Public Health Wales and Welsh Government at the ending of April. The Welsh Government’s position on testing has two key features. First, that the risk of discharging untested patients into care homes did not come what the fore until 15 April. Second, that it was not until 12 May that the balance tipped in favour of a programme of testing asymptomatic care home residents and staff.

My Lady, the Cymru group submits that both these submissions are false. In both cases, testing was required because of the risk of asymptomatic transmission. And my Lady, you heard in Module 7 from Professors Fraser, Nurse and Harries, the evidence of asymptomatic transmission emerged quite clearly throughout February and March 2020 through studies from China, Hong Kong, Italy, and the cruise ship Diamond Princess. And the US CDC study in early April provided strong evidence of high levels of asymptomatic transmission in care homes.

This evidence was not hidden from Wales; it was publicly available and well understood. And just yesterday you heard from RCN, the largest group of frontline professionals, that asymptomatic transmission was very clearly apparent from the evidence prior to March.

Given the extreme vulnerability of care home residents to care home infection, proper precautionary approach demanded asymptomatic testing both on discharge from hospital and routinely within care homes at the earliest opportunity.

The Welsh Government decided against this precautionary approach, and chose to prioritise testing elsewhere. But rather than own and explain this decision at the Inquiry, they have hidden behind the science.

My Lady, the evidence demonstrating that is will be fully set out in the group’s written closing statement. However, for today’s purposes, we highlight the following facts:

Public Health Wales met with Public Health England on 18 April 2020 to discuss the results of the Easter 6 study. Directly following this meeting, Public Health Wales produced a meeting note – at INQ000384504 – that includes the following statements:

[As read] “Covid-19 has proved highly infectious in closed settings. Once three or more cases are reported, there is around 50% prevalence in both staff and residents, despite apparent use of PPE. Most care homes will become affected over the next six weeks. There is also evidence of underreporting in deaths and of a rise in deaths in the care home taking. Possible measures to consider include: prevention of entry into the home and more testing in staff, including asymptomatic.”

This report was shared with the Welsh Government immediately on 18 April, such was its significance, and prompted the drafting of ministerial advice the same day.

This advice was not finalised until 30 April, an inordinate delay, given the serious risk to life, and when finally produced, it advised against routine testing based on a lack of evidence in favour of asymptomatic testing and a lack of testing capacity.

However, my Lady, an earlier version of this advice, at INQ000367477, which was commenced on 18 April, states something very different about the evidence in favour of asymptomatic testing. It states:

[As read] “Our current policy in Wales is to test all symptomatic residents and staff. Evidence suggests that this approach results in asymptomatic Covid-19 individuals, many of whom will go on to develop symptoms, not being identified and a source of ongoing risk to residents and staff. International evidence suggests that increasing testing in care homes for asymptomatic staff will provide added protection against the virus.”

Inexplicably, these warnings that accurately reflected the scientific position at the time were removed from the final advice.

The Welsh Bereaved are outraged to discover from Inquiry disclosure that the Welsh Government clearly knew, from at least 18 April, of the need for asymptomatic testing and yet continued to publicly deny its clinical efficacy until 12 May, after the damage of wave 1 had already been done.

This tactic of using claimed scientific advice to stifle debate and challenge sat uneasily with some of their scientists. For example, the message of the Welsh Chief Scientific Adviser for Health, Rob Orford on 27 March 2021, asking ironically, “Do we need some emergency science this weekend?”

The group submits that this cynical approach is now clearly exposed at the Inquiry.

The second failure is inadequate IPC and PPE.

In previous Inquiry modules the group has highlighted the inadequacy of face masks to protect against airborne respiratory infection. Helen Hough, who gave evidence on behalf of the group earlier in this module, is clear on this issue in her witness statement, stating:

“As nurses, we knew a surgical mask would not protect us. They do not fit your face, there are gaps at the side and they are designed to stop the wearer coughing or passing infection to a patient. They do not prevent a healthcare worker from catching infection from a patient by inhaling infectious aerosols, which is why I was asking for FFP3.”

Helen Whately also raised this concern in her oral evidence when referencing the lower rates of infection amongst ICU staff who had the benefit of FFP3 respirators. And she described the inadequacy of PPE and RPE in social care settings as “not good enough in light of the way Covid spread”.

Covid-19 was transmitting at high levels asymptomatically, and by aerosol. The lack of appropriate respiratory protection, coupled with the absence of effective testing regimes, and the very nature of adult residential care, which does not allow for social distancing and requires close personal care created a perfect storm for the virus to transmit rapidly amongst extremely vulnerable people.

The tragedy is that this was known from the outset by those on the front line like Ms Hough and the RCN, but ignored by decision makers.

Alarmingly, current IPC guidance for acute respiratory infections in Wales continues to recommend that social care staff use surgical masks when caring for suspected or confirmed Covid-19 patients.

Given the lack of adequate ventilation and isolation facilities in the majority of care homes in Wales, and the need for the provision of close personal care, the ability to apply a hierarchy of controls in these settings is extremely limited, and in these circumstances, the continued recommendation of surgical masks shows how little has been learned from the tragic events of the pandemic.

The third failure is that care home residents were deprioritised. Older people in Wales contributed more than any other group to the fabric of Welsh society and yet their needs and rights were overlooked and dismissed time and again.

Pandemic planning exercises gave almost no consideration to how the social care system might cope during a pandemic. And when the pandemic struck, care homes in Wales were wholly underprepared and inadequately supported.

Despite knowing that older people in residential care and nursing homes were the most vulnerable to Covid-19 infection, the overwhelming focus was on protecting NHS capacity, which resulted in the withdrawal of in-person medical care, a refusal to provide ventilation, non-attendance by ambulance services, and a race to impose blanket DNACPR notices.

The Inquiry has heard of the harrowing deaths of care home residents from Covid-19 without oxygen, palliative care, or medication to ease their suffering. Helen Hough knew that oxygen would give relief to her dying patients but many died without it, enduring unnecessary suffering.

Ms Hough felt that nobody was speaking up for her patients and she wrote to the Welsh Government officials in early May 2020, highlighting the disgraceful disparity between the treatment patients received in hospital and what could be provided in a nursing home.

Similarly, a survey conducted by the Welsh Local Government Association received reports from 59% of local authorities in Wales that residents were not receiving adequate medical treatment.

The Cymru Group agrees with Julia Jones of John’s Campaign that end of life should be understood as a period like infancy, rather than as an event. And a potential recommendation for your consideration, my Lady, is for there to be better preparation and training in this area to ensure a dignified transition over time.

As Professor Barclay observed earlier today, we may not be able to affect the outcome, but we can influence the journey.

Finally on this issue, Professor Banerjee, in his evidence said, that if your internal compass faces away from people who are old, then you may be more likely to decide that individuals don’t get a test, are sent back to their care homes, or sent back home, rather than afforded the extra care that can be provided in a general hospital.

The Cymru group submits that this tendency was displayed very clearly by decision makers in Wales, as the next and fourth section of the failure to prepare for the second wave demonstrates.

The second wave of the pandemic saw further huge loss of life in Welsh care homes. ONS data analysing deaths across England and Wales shows that Wales had the highest proportion of Covid-related deaths of care home residents in wave 2, 28.8%.

It was well known that there would be a second wave of Covid-19 and this knowledge meant that its severity could have been mitigated. Monthly reporting to Care Inspectorate Wales shows how the number of suspected and confirmed Covid-19 deaths fell to single figures in July and August before rising again in October, with then hundreds of deaths in November and December, reaching a peak of 460 Covid-related deaths in January 2021.

A summer lull provided an opportunity to take steps to prevent further loss of life. However, not only was this opportunity squandered, decisions were in fact taken that placed care home residents at increased risk.

The first was the decision on 25 November 2020 to intentionally delay the vaccination of care home residents, contrary to the explicit recommendation of the Joint Committee on Vaccination and Immunisation.

The reason that care home residents were the first JCVI priority cohort for vaccination was because of their extreme vulnerability and because vaccination had such a pronounced benefit. For every 20 residents vaccinated, one life was saved, compared to the need to vaccinate 8,000 people to save one life in the over-fifties cohort.

The requirement for ultra low freezer capacity for the Pfizer vaccine was known from at least 25 August 2020, and the failure to procure the necessary freezer storage and develop a delivery plan for care homes in the four months to December, given the known risk to life is inexcusable.

All UK nations faced this challenge but the response of the Welsh Government was by far the least effective. Vaccinations in Wales commenced on 8 December . However, by 26 January 2021, a month in which care home deaths from Covid-19 were as high as 20 per day, only around 67% of care home residents had received their first dose.

By 16 February, at the tail-end of wave 2, this number had risen to just 82%.

In contrast, Scotland reached this level over a month earlier, on 12 January, and Northern Ireland delivered vaccinations to care home residents on 8 December, the first day of the programme. And by 26 February 2021, all residents and staff in their care homes had been offered a first and second dose.

The Welsh Government’s departure from the JCVI advice was discussed in a Cabinet Office meeting on 12 January 2021 when it was noted that Wales had taken a different approach to other nations by prioritising NHS staff for the Pfizer vaccine.

This failure to provide life-saving vaccines until it was too late for so many vulnerable people is an unconscionable failure of the Welsh Government.

The second decision was to discharge hospital patients with low-level positive tests to care homes from 15 December 2020. The risk was described as low, however, there remained uncertainty, and the fact that the Welsh Government was prepared to take this risk with the lives of care home residents at a time when deaths in care homes were rising rapidly, having already suspended vaccinations and knowing the devastating impact of infection once it’s entered a care home, disproves the claims of the Welsh Government that the most vulnerable in Wales were at the heart of their decision making.

And my Lady, similar unsafe practices around this time are a feature of Ms Griffiths’s story, who you heard from earlier today, and whose father was admitted to hospital on 9 November 2020 with a Covid infection for just 24 hours, before being discharged back to the care home, while infected.

My Lady, in conclusion, the anger felt by bereaved families in Wales is not just rooted in the loss of their loved ones but in the neglect and indignity that they suffered, and in the Welsh Government’s refusal to accept their mistakes.

The Welsh Government needs to step up and take responsibility for what went wrong so that there can be learning and improvement and so that families can begin to move on. And if the evidence heard in this module does not convince them to do so, nothing will.

Thank you, my Lady.

Lady Hallett: Thank you very much indeed, Mr Stanton, I am genuinely grateful.

Right, I think – I don’t think anyone has been warned to continue this evening. Anyway, it’s been a very long and difficult day, so I think we shall end now and I shall return at 10.00 tomorrow.

(4.08 pm)

(The hearing adjourned until 10.00 am the following day)