29-07-2025

(10.00 am)

Lady Hallett: Ms Hands.

Ms Hands: Good morning, my Lady. If I may call Claire Sutton, please.

Ms Claire Sutton

MS CLAIRE SUTTON (affirmed).

Lady Hallett: Ms Sutton, thank you very much for coming to join us and to help us.

Questions From Counsel to the Inquiry

Ms Hands: Good morning, Ms Sutton. You are here today to provide evidence on behalf of the Royal College of Nursing, or RCN, if I may, and you have provided a statement, and that is at INQ000587657.

I understand that your job title may have changed –

Ms Claire Sutton: Yes.

Counsel Inquiry: – since the statement was signed. So can you please tell us what your current job title is.

Ms Claire Sutton: My current job title is Head of Independent Health and Social Care.

Counsel Inquiry: Thank you. And how long have you held that role for?

Ms Claire Sutton: The job title changed on 1 January of this year. It’s exactly the same role, it was just to bring me in line with the colleagues.

Counsel Inquiry: Ms Sutton, you’ve got a very quiet voice.

Ms Claire Sutton: Sorry.

Counsel Inquiry: If I may ask you to speak a little bit louder and perhaps into the microphone. Thank you.

And is that a role that you held during the pandemic?

Ms Claire Sutton: No. So I joined the Royal College of Nursing in August 2022.

Counsel Inquiry: What was your role during the pandemic?

Ms Claire Sutton: I was a digital transformation lead at the National Care Forum.

Counsel Inquiry: And is it also right that you are a registered nurse with experience in nursing homes, as well?

Ms Claire Sutton: I am.

Counsel Inquiry: The Inquiry has heard about the role of the RCN in other modules. Today, of course, we’re focused on the role of the RCN in adult social care.

So if I may start with the RCN’s role in central government planning around adult social care prior to, or at the start of the pandemic.

Ms Claire Sutton: Yeah. So the RCN has always engaged with government and with other agencies in order to support the voice of nursing and provide the voice of nursing across health and social care, and that was prior to the pandemic and during and since.

Counsel Inquiry: And was that the position in each nation?

Ms Claire Sutton: Yes.

Counsel Inquiry: You have explained in your statement some of the extra support, I suppose, that the RCN provided to your members during the pandemic, and to the general public, as well, and that includes the RCN call centre and the RCN Care Home Network. Could you please briefly explain each service and the benefits that it brought to the sector during the pandemic?

Ms Claire Sutton: So the RCN call centre, otherwise known as RCN Direct or RCN D, is the primary contact route for members who need to contact the RCN for advice or resources. We are, of course, both a professional body and a trade union, so it enables members to be able to contact us for questions and queries they may have on both aspects of that. The Care Home Nurses Network that was set up during the pandemic is a Facebook group that was set up to support peer-to-peer interactions and sharing of best practice, and challenges that they were encountering throughout the pandemic.

Counsel Inquiry: And when was that set up?

Ms Claire Sutton: I don’t know the exact date but I think it is in my witness statement.

Counsel Inquiry: And was that – was the feedback from that that it was helpful during the pandemic?

Ms Claire Sutton: Yes, I think because certainly working in social care, it can be quite isolating for nurses. In a lot of social care settings, both care homes and possibly even more so in homecare settings, you may be the only nurse on duty. So having that route of being able to contact and speak with peers was really helpful and members reported that and indeed, the page is still active and still used regularly by members now.

Counsel Inquiry: Thank you.

The Inquiry has heard about staff shortages and retention issues in the sector going into the pandemic. And you have certainly addressed that at some length in your statement. One of the mechanisms introduced to try to mitigate the impact of those shortages were powers for the Nursing and Midwifery Council to establish a Covid-19 temporary register, and that applied to both health and social care sectors.

Just to clarify, that did include those working in adult social care, as well, didn’t it?

Ms Claire Sutton: It did. So people who joined the Covid temporary register as a registered nurse, it wasn’t specifically just for NHS nursing roles; it was for nursing roles across health and social care.

Counsel Inquiry: And the creation of that emergency register, was that something that the RCN supported?

Ms Claire Sutton: Absolutely, with caveats that nurses should be supported in exactly the same way that we would expect nurses that were on the full register to be supported, with access to training and employment pay, terms and conditions.

Counsel Inquiry: Yes, and what were the RCN’s experiences around support, supervision, and implementation of the register?

Ms Claire Sutton: By and large, it was a positive thing.

Counsel Inquiry: And was that case across the whole of the UK, or were there issues in some of the nations?

Ms Claire Sutton: I’m not particularly aware of specific issues in any of the devolved nations.

Counsel Inquiry: Okay. I think you said in your statement that mobilisation in Scotland was quite slow and that there was poor implementation in Wales. Are you able to help us, perhaps, with some of the reasons for that?

Ms Claire Sutton: I think in terms of actually placing nurses in roles, it wasn’t always particularly straightforward – more so in social care, as well, really. And I think a lot of that is because there isn’t that centralised recruitment in social care. So social care provision is tens of thousands of different organisations and each of those organisations employs their workforce themselves.

So the implementation of ensuring the employment checks and getting people onboarded and commencing in work in social care was a little bit slower, I think, than the NHS.

Does that help?

Counsel Inquiry: Yes, thank you. Was there engagement with the RCN about implementation and how that could be improved?

Ms Claire Sutton: Engagement with the RCN on this and a number of other things was not necessarily consistent. So we found that different governments – particularly early on in the pandemic, and of course this was quite early on, the temporary register – was not always easy to achieve. Certainly in Wales, in particular, the engagement with Welsh Government wasn’t always as rapid to get started. Scotland, a little bit better. There was more kind of collaborative working and the RCN were invite to contribute to much more discussions in Scotland. Again, Northern Ireland, there was good communication and good consultation of the RCN in decision making.

Counsel Inquiry: Were you able to discern any differences about the pre-pandemic relationships in those different nations which perhaps informed the strength of those relationships and that engagement during the pandemic?

Ms Claire Sutton: I think the early stages of the pandemic were probably quite similar to what they – the relationships were at that time. The RCN always seeks to be involved and provide that voice of nursing where decision making and policy making is being undertaken. It’s not always necessarily a popular decision to have the RCN there. As I mentioned, obviously we are a trade union and a professional body, as well, so it’s not always – we’re not always immediately invited to be a part of any consultation, but we will always seek to be a part of it.

Counsel Inquiry: Just finishing on the topic of the register and the temporary emergency register, you’ve said in your statement that as of July 2020, there were approximately 14,000 people on the UK-wide register. Do we know the breakdown between healthcare and social care in that figure?

Ms Claire Sutton: No, so the NMC register, the normal full register doesn’t break down between nurses that work in different areas particularly, so I don’t think anybody would be able to provide you with the details of how that 14,000 was broken down.

Counsel Inquiry: So are we able to say whether it was an effective mechanism for increasing capacity of the adult social care workforce during the pandemic?

Ms Claire Sutton: I don’t think we could be that specific, really.

Counsel Inquiry: Thank you. Your statement also includes some positive accounts from staff of resilience and supporting one another, embracing opportunities for change. But there were also problems for providers and staff caused by the staff shortages, and if we can have on screen, please, INQ000587657, page 113.

This is taken from your statement, and two of the responses to the surveys that the RCN carried out during the pandemic.

So at paragraph 377a, we can see a nursing – somebody responding said:

“I work in a nursing home that cares for 81 residents. It is divided into four units. One of the units were short staffed, and on top of that, one of the care assistants working there became acutely ill and needed to go home, leaving the unit very short.”

And then at paragraph b, somebody else said that they were struggling “with staffing levels to provide safe effective care to residents, but was overruled by senior management directors, and made to work short staffed.”

Were those type of concerns widespread, in your experience?

Ms Claire Sutton: Yes, they are themes that are common across social care, both prior to, during and since the pandemic.

Counsel Inquiry: In terms of the retention rates, the RCN survey that was undertaken in 2021 showed that 52% of those working in care homes were thinking about or actively planning to leave their job. Did you hear whether the reasons for that were related to the pandemic?

Ms Claire Sutton: I don’t think we know the specific reasons but it’s certainly a very high figure of nurses that expressed that they were either considering or are actively looking to leave their current roles.

Counsel Inquiry: And in terms of if there were a future pandemic, how do you think we could improve support to ensure that there isn’t such a negative impact on retention rates in future?

Ms Claire Sutton: I think social care often feels like a second-class citizen, a poor relative. And there are so many reasons for that, and they are reasons that go widely beyond anything that could be – you know, becomes a recommendation from this. But I think having – if we were to have parity of esteem and equity of access to the same resources and the same testing and PPE and everything that the NHS have got, then that would definitely support social care to not feel that they were the poor relative, and would boost staff morale and hopefully go some way towards changing those perceptions around whether people would want to stay in their job and improve staff retention as a result.

Lady Hallett: I understand that; obviously it makes perfect sense. But isn’t the problem that you’re then getting the state to step in and, for example, provide PPE for their – for the employees of a private company?

Ms Claire Sutton: So although the majority of social care is delivered by independent private companies, the majority of that care is funded by the state, so local authority-funded social care, continuing healthcare and funded nursing care that’s funded through the NHS. And I think that although there are lots of private companies that are providing it, they’re not all for-profit. There are, you know, areas that are still being delivered directly by local authorities or through not-for-profit organisations, commissioned by local authorities and NHS to deliver that care.

Lady Hallett: Thank you.

Ms Hands: A slightly different topic but still focused on the workforce, and that’s around data collection.

At paragraph 319 of your statement you have referred to a meeting that took place between the RCN and the Association of Directors of Adult Social Services at the start of May 2020, where both organisations agreed that the recording and reporting of deaths of health and care workers were inadequate.

Did any action or changes following that meeting, to your knowledge?

Ms Claire Sutton: Not to my knowledge.

Counsel Inquiry: And are you able to help us whether the recording and reporting of deaths of care workers did in fact improve during the pandemic?

Ms Claire Sutton: The recording and reporting of the deaths of care workers throughout the pandemic is very difficult to do. The – in order for an occupational death to be recorded, you – it has to be clear that it is an occupational death. And this, the Covid virus, was endemic in society. So if a healthcare worker was to contract the virus and to unfortunately die as a result of it, the difficulty comes in ascertaining where that virus was contracted.

Counsel Inquiry: Do you think it is something that needs to and perhaps could be improved in a future pandemic?

Ms Claire Sutton: I think it would need to be improved in a future pandemic. I think it’s very important to be able to capture how the workforce are affected by any pandemic situation, and I think that there would need to be thought put in. And, I’m sorry, I don’t have the answer as to how it would be done, but I think there would need to be consideration as to how that could be better captured.

Counsel Inquiry: Thank you.

Moving on, then, to a different topic, and that’s IPC guidance and measures for the sector. You have included in your statement some of the concerns and experiences that the RCN and its members had, including some through the RCN D, the call centre that you mentioned at the start.

So if we could have on screen, please, INQ000587657, page 49, paragraph 173(d) to start with. Thank you.

Again, so these were concerns that were raised by a member working in a care home in England at the very start of the pandemic in March, and they said that:

“[They worked] for a care home and there [was] nothing in place to protect us during this pandemic … no senior leadership in place, no PPE, no instruction on how to deal with this pandemic or what to do if one of our residents gets symptoms of Covid-19.”

Then paragraph (f) – thank you – another member said that:

“[They had] been informed that there [would] be masks delivered to the [nursing] home but staff are not to have them unless there [was] a concern of an outbreak within the … home.”

And the member was unsure if they:

“… should be given beforehand to prevent [an] outbreak as the past week, patients have cost and spat on me.”

And that was from a member working in a care home in Scotland, again in March 2020.

So again, Ms Sutton, were those reflective of experiences that you heard from your members?

Ms Claire Sutton: Yes.

Counsel Inquiry: I’d like to turn to look at some of the guidance in a little bit more detail, if I may. The first guidance issued by Public Health England for social or community care and residential settings on Covid-19 was on 25 February 2020. And that recommended that the best way to reduce any risk of infection for anyone is avoiding direct or close contact, within 2 metres, with any potentially infected person.

Are you able to tell us how practical it was to implement that advice and to avoid close contact with a potentially infected person for nurses providing care in the adult social care sector?

Ms Claire Sutton: Impossible. You can’t provide care, direct care and support, to individuals if you can’t get within 2 metres of them. These are some of the most vulnerable people in society who have really high care needs, and in order to be able to provide that care to those people, you would need to be able to be in close proximity to them.

Counsel Inquiry: It also advised in that guidance on 25 February that face masks did not need to be worn unless an individual was infected and it had been advised by a healthcare worker.

Are you able to help us as to whether there was sufficient access to tests at this time to know if the care worker or recipient of care was positive for Covid-19?

Ms Claire Sutton: It was very difficult to access tests at that time. This was also around the time that there wasn’t the understanding of asymptomatic transmission, so in order to be able to be access a test you had to be able to answer a series of questions that demonstrated you had particular symptoms in order to be able to get an appointment to go and get a test. To then go and get that test, you would have to go to a test site that, in the main, you had to drive to. Many people working in the social care sector don’t have access to a car, they’re not able to drive to a test site to be able to get it. The distance to travel to some of these test sites was lengthy. I can recall myself needing to access a test around this time, and I live in Southport and was sent – they wanted to offer me an appointment at a test site in Blackpool, which as the crow flies is about 7 miles, but it’s well over an hour’s drive.

So there were a number of different barriers in place that made it extremely difficult for people to be able to access testing at this time.

Counsel Inquiry: Finally the guidance said this, which you’ve included in your statement as well:

“It [remains] very unlikely that [people] receiving care in a care home or [in] the community will become infected.”

So if I may, what were the RCN’s views on this statement being included in the guidance at this time?

Ms Claire Sutton: I don’t know how they could possibly have said that, how somebody living in a care home would be less likely to contract it than somebody living in any other setting. It just didn’t make sense, in terms of that guidance.

Counsel Inquiry: And to your knowledge, did that pose any risks or cause any issues for staff trying to implement the guidance?

Ms Claire Sutton: Yes, because if the guidance is suggesting that it’s a low-risk environment but you feel that it isn’t and you’re struggling to access things like PPE, those things add up to making for a very difficult situation for an individual nurse who is wanting to implement that guidance, or a manager, an operator of a care home who is wanting to implement it to keep their staff and their residents safe.

Counsel Inquiry: The next guidance from Public Health England was published 11 days later on 13 March 2020.

If we may have it on screen, please. It’s INQ000325233, page 3. It’s at tab 9, should you need it in the bundle.

Now, this guidance recognised that much of the care delivered in care homes will require close personal contact. There was a change in the guidance there.

And if we can go down to page 4, please, it recommended that:

“Staff should use personal protective equipment (PPE for activities that bring them into close personal contact …”

Then just further down the page 4 – thank you – it said that no PPE was required unless the care worker or recipient of care was symptomatic.

Was the RCN consulted or engaged by Public Health England or DHSC around this time to provide any expertise or input into the guidance?

Ms Claire Sutton: I’m not aware, but it may be something that a colleague could answer.

Counsel Inquiry: Thank you. Looking, then, at this advice, was it clear enough for those that were trying to implement it on the ground, as we’ve just discussed, as to when and what PPE they should in fact wear?

Ms Claire Sutton: No, because it still refers to not requiring PPE if an individual is asymptomatic. It refers to the use of things like fluid repellent masks and face coverings, but it doesn’t acknowledge other aspects of care that may be delivered. So it’s certainly still not clear enough and specific enough for the care sector, for the reality of what happens. And although it does recognise in this guidance the – that care is delivered in close proximity to individuals, it still stated that if an individual is asymptomatic, that PPE wasn’t required.

Counsel Inquiry: Now, that’s obviously focused more on care homes, and just staying with the chronology, you have explained in your statement that the RCN was invited by the Academy of Medical Royal Colleges to comment on PPE guidance for secondary care, again produced by Public Health England, and that’s at the end of March 2020, so a couple of weeks on now, and at may help to have you are response to that on screen.

So that’s INQ000587657, page 54, paragraph 189 – thank you. You say:

“The RCN was astonished at the limited nature of the draft revisions of PPE guidance in that it continued to apply to acute hospitals only. The RCN highlighted the absence of consideration for those nurses and healthcare assistants working in the community to the CNO [Chief Nursing Officer, I assume, for England] via email on 28 March 2020.”

So in the RCN’s view, was there adequate guidance for staff working in the community at this time?

Ms Claire Sutton: No. So at this point the guidance was very tailored towards acute hospital settings, so it didn’t recognise social care and other community settings.

Counsel Inquiry: Did you raise those? Obviously you raised them with the Chief Nursing Officer for England; did that get any response?

Ms Claire Sutton: Not that I’m aware of.

Counsel Inquiry: So approximately a month later, on 27 April 2020, was the publication by Public Health England of how to work safely in domiciliary care guidance. Can you recall whether that allayed your concerns about any gap in the guidance?

Ms Claire Sutton: I don’t know. It may be in my witness statement, I can’t recall that.

Counsel Inquiry: Okay. That’s fine. Just returning, then, for a moment, to earlier in April 2020 and dealing with the topic of asymptomatic transmission and infection which you’ve referred to. You say in your statement that the RCN highlighted the emergence of evidence suggesting Covid-19 was being transmitted by asymptomatic carriers with Health and Safety Executive at the start of April 2020. Do you know if that was also raised with the Department of Health and Social Care and/or Public Health England in the context of the adult social care sector at that time?

Ms Claire Sutton: I think it was. I think one of the issues that came up quite a lot is that we would raise things but we wouldn’t necessarily receive acknowledgement or receive a response to things that were being raised. So we were quite persistent in raising things, and certainly in the written evidence, we have provided many examples of where we have raised things with various departments, but we haven’t always, to the best of my knowledge, received a response to that, but then there have been changes to guidance subsequent to it. So there is at least hope, I think, that our concerns were being addressed and I appreciate that at the time everybody was incredibly busy and probably didn’t necessarily have time to be replying to emails.

Counsel Inquiry: Perhaps a broad question, but are you able to help us as to when the RCN says that the risk of asymptomatic transmission should have been included in the guidance?

Ms Claire Sutton: A specific date?

Counsel Inquiry: Well, is it earlier than in fact the period that we’re talking about?

Ms Claire Sutton: It was very early on in the pandemic that we raised those concerns. I think it was even prior to March that asymptomatic transmission was very clearly becoming apparent through the evidence, and that that didn’t seem to be getting taken on board.

Lady Hallett: What about the issue that age was very much a risk factor? And obviously an awful lot of people in care homes are likely to be of a particular age. Was that an issue that the RCN raised, and therefore you oughtn’t just to be looking at acute health settings because of the age being such a predominant risk factor?

Ms Claire Sutton: We raised that. We raised about – around other demographics. We raised around demographics of the workforce, because certainly the social care workforce is a slightly older workforce, and therefore at increased risk.

The social care workforce is also more diverse, in terms of minority ethnic groups than general population, and we raised that because the minority ethnic groups were also groups where the risk factors were increased.

So we were constantly raising these various risk factors and issues.

Nursing is an evidence-based profession, and the evidence was all pointing towards these various risk factors, including the asymptomatic transmission.

Ms Hands: Thank you.

Just finally this on this topic: do you know if the RCN are working with UKHSA now to develop IPC guidelines for the sector in case of a future pandemic?

Ms Claire Sutton: I’m certainly not, or –

Counsel Inquiry: Not aware?

Ms Claire Sutton: Well, I’m not aware and I’m certainly not working with anybody, but we do have a professional lead for infection prevention and control, so if that was ongoing at the moment it would more than likely be that person who would be doing it. So I can certainly find out for you.

Counsel Inquiry: Thank you.

Are you aware as to whether the RCN and its members had a relationship with health protection teams during the pandemic?

Ms Claire Sutton: The RCN has regional offices and there will be areas of the country where there are stronger regional relationships. And health protection teams are, in the main, regionally based, so there will certainly have been areas where there was stronger relationships than in other areas. But I think that’s probably quite indicative of many things.

Counsel Inquiry: Do you know whether they were overall supportive and helpful in helping, kind of, care home providers but also staff implementing guidance and undertaking risk assessments where that was advised in the guidance?

Ms Claire Sutton: I think, again, that was quite regionally inconsistent. So there were some areas where the support for implementation of the guidance was very strong and there were some areas where maybe it was less strong. And I think that this was one of the reasons why having really clear guidance that was produced from the centre was so important, because having regional inconsistencies around the support to understand the guidance just makes it even more confusing and muddies the water even more.

But in the absence of having very clear, very tailored guidance, there was certainly value from where there were strong working relationships with regional and local health protection teams.

Counsel Inquiry: And just bringing these two topics of the workforce and IPC together, I’d like to ask you a little bit about training and education for the workforce in this area.

You say in your statement that the care home sector was unprepared psychologically and physically for the realities of residents and staff becoming infected and how this might be managed in a largely unqualified workforce with limited IPC expertise, education, resources and equipment, including the use of PPE. And you have also included the results of an RCN survey which showed that only 52% had reported receiving training on what standard PPE to wear, and when.

In your view, was there sufficient training on the use of PPE for nurses working in adult social care before the pandemic?

Ms Claire Sutton: For the use of PPE for the care that they were delivering day in, day out, yes, probably. But this was a very, very different situation.

And I think the context of what social care is, it’s an individual’s own home. And whether that is receiving care in their own place of residence, where – through domiciliary or home care, or living in a care home, they’re not acute hospital settings. So you would use PPE if you had an outbreak of something like norovirus, but you wouldn’t routinely be using high levels of PPE. So there wouldn’t be lots of routine training in the use of PPE in a hypothetical respiratory pandemic situation.

So, no, it probably wasn’t adequate, but yes, it probably was adequate for the amount – for the levels of care that were going on day to day.

And I realise that’s a very vague answer. I’m sorry.

Counsel Inquiry: Do you think it would be helpful to have that training embedded in normal times, in preparation for a future pandemic, should there be one?

Ms Claire Sutton: Absolutely. I think that would be a really good thing to have for future pandemic preparedness. To have that background knowledge of what you may have to step up and roll out quite rapidly to have that background knowledge and training in place would be very beneficial.

Lady Hallett: To cope with a pandemic which may have a virus with different characteristics, the training is going to have to be “This is what you’re going to have to do for this kind of virus. This is what …”?

Ms Claire Sutton: Potentially, yes, and I don’t think it needs to be particularly extensive training but I think there needs to be a basic background level of training and understanding, and then the ability to roll out rapid training. It’s so difficult to be able to predict what any future pandemic characteristics may be like but there does need to be a background level, I feel.

Ms Hands: And would you include domiciliary carers in that as well?

Ms Claire Sutton: Absolutely. They are a fundamental part of social care.

Counsel Inquiry: One of the packages that was introduced in England around May 2020 was the Enhanced Health in Care Homes package which delivered additional IPC training for every care home from the NHS. Do you know if the RCN was consulted or involved in the implementation of that programme?

Ms Claire Sutton: I think we have been involved in Enhanced Health in Care Homes throughout. Again, this was another thing that, it is centrally created but the delivery of it is delivered within individual locales. So there is kind of – it isn’t necessarily a hundred per cent consistent, that delivery across every area.

Counsel Inquiry: A topic that the Inquiry has heard much evidence about over the last few weeks is that of movement of staff between care homes –

Ms Claire Sutton: Yes.

Counsel Inquiry: – and to a much lesser extent, in domiciliary care.

In the first – in the early guidance from Public Health England on 13 March 2020, which we were looking at before, the guidance was for care homes to share the workforce between providers and services. Do you know if the RCN had any views on that at the time that it was published?

Ms Claire Sutton: I think the concerns that the RCN has around that are twofold. One the, kind of, infection prevention control aspects of it, the professional nursing aspects. But also, the fact that, as I mentioned earlier, social care employers make up tens of thousands of different organisations, with tens of thousands of different sets of pay, terms and conditions for their workforce. So it isn’t necessarily feasible to expect individuals to be working across different employers as well as different workplaces.

Counsel Inquiry: And you have referred in your statement to some of the concerns that you had around proposals to regulate movement between care settings. Could you perhaps just explain to us what were some of the practical difficulties in reality that you saw with those proposals, were they – should they be implemented?

Ms Claire Sutton: So the social care workforce is predominantly female, it’s made up of many people who have part-time contracts or zero-hours contracts. People may have multiple roles at different employers. And some of this is by choice, because that fits in with an individual’s work-life balance. They choose to have jobs where they may work some days at one care home, an evening at another.

Within the NHS, for example, it’s really common for people to turn up at work and be told “Ah, we’re overstaffed on this ward, please can you go and cover the shift on the other ward.”

That’s the same level of movement of staff as people going from a care home to another care home. But the guidance was to restrict that movement between care homes, which isn’t feasible for the workforce, and ultimately risks leaving individual recipients of care without their care being delivered.

Counsel Inquiry: You have referred already today to some of the issues around access to PPE and, indeed, you’ve included many examples in your statement – you’ve also included, sorry, many examples of around when you raised those concerns, both centrally, with central government, and local government and public health as well. So can you help us with whether those concerns led to any changes or improvements in access to PPE?

Ms Claire Sutton: I don’t know whether we could attribute us raising our concerns to changes that were made in accessing PPE. I think there were changes that were made and those changes that – were made after we’d raised concerns. But whether or not we could confidently say that was as a result of what the RCN did, I don’t know.

Counsel Inquiry: You have also included in your statement the results of the April 2020 PPE survey by the RCN, which received around 1,300 responses from adult social care, in which approximately 58% of respondents said that they had felt pressured to care for a patient without adequate PPE.

So do you think there was adequate access to suitable PPE available in the care sector during that period of time in the first wave to allow staff to follow the guidance that we’ve been discussing?

Ms Claire Sutton: No, definitely not. I think – we have numerous stories, numerous examples, many of which, as you mentioned, have been included in the witness statement, of members reporting that they were unable to have access to adequate PPE. So I think the voices of our members very much would say: no, there was not adequate PPE available at that time.

Counsel Inquiry: In terms of improving access, you’ve provided a couple of examples of how it improved in the devolved nations. So, in Wales, you’ve referred to the establishment of cells by the Welsh Government assisting with access. And in Scotland, the introduction of the Social Care Triage Hub. So, in both of those examples, how did they improve access? And, in future, do you think that they could be introduced sooner to make sure that there’s access at an earlier date?

Ms Claire Sutton: I think in both of those examples, and in examples in England as well, with having central procurement, they certainly improved the situation, and definitely, the sooner the better.

Put most simply, the way they improved it in the main is that they helped individual care provider organisations to be able to be overcome the issues that arise of just not having the buying power. If you are a small care provider or care home fighting in a market to be able to procure PPE when the other people that are trying to buy the same PPE are a massive NHS trust, you don’t have the buying power to be able to be do it. And the cells, triage system and central procurement routes went some way to overcoming that.

Counsel Inquiry: And is it right that you have recommended that adult social care should be considered in pandemic stockpiles, or that there should be a system by which the care sector can rapidly access sufficient PPE in a future pandemic?

Ms Claire Sutton: Absolutely.

Counsel Inquiry: Moving on then, if I may, to testing.

What were some of the barriers or issues that your members faced with access to testing, and how did that compare to those that were working in the NHS, perhaps?

Ms Claire Sutton: So, as I mentioned earlier, the ability to be able to access a test was very difficult. Members working in the NHS were able to access tests through their occupational health, through their hospitals, in the main, if they worked for an NHS trust with a hospital base.

So it was just very, very difficult for members of the social care workforce to be able to access tests. In fact, in order for them to be able to access tests, in the main, bar a few exceptions where some NHS trusts did open up their testing groups to social care staff, social care workforce was accessing tests in exactly the same way that the general public were.

Counsel Inquiry: And you have recommended that there be parity of testing in the care sector with that of the NHS in your statement; is that right?

Ms Claire Sutton: Absolutely.

Counsel Inquiry: Just staying on the topic of testing for a moment, and I’m at paragraph 100 of your statement should it assist you, but on 16 April 2020 the RCN asked the Care Inspectorate Wales to launch a review into actions taken or not taken in relation to care homes. And they responded about a week later, indicating that although it was not within their gift to secure testing, they had been seeking testing for residents and staff in care homes for several weeks.

Firstly, are you able to help us with what led to the RCN requesting that review?

Ms Claire Sutton: Reports from members.

Counsel Inquiry: And were you satisfied with that response?

Ms Claire Sutton: I don’t … the response wasn’t ideal, but the response was honest, so they provided a response. It’s better than nothing.

Counsel Inquiry: I think you’ve explained how, in September 2020, concerns around access to availability of testing continued, so is it fair to say that the situation didn’t improve until later on in 2020, in Wales?

Ms Claire Sutton: It took a long time for it to improve, and I think where it did improve, it improved slowly.

Counsel Inquiry: Moving on to a different topic, and that’s DNACPRs and advanced care planning.

Now, is it right that the RCN was involved in a UK Government Ministerial Oversight Group on DNACPRs and advanced care planning from around June 2021?

Ms Claire Sutton: Yeah.

Counsel Inquiry: Did your involvement in that group make any meaningful difference or see any changes in those areas and can you provide some examples of the issues that were discussed?

Ms Claire Sutton: I don’t know particularly whether it provided any meaningful impact. I can certainly find out for you. Obviously, it pre-dates my time at the RCN.

I think certainly in terms of DNACPRs, we were able to communicate the – what we were hearing from our members. We didn’t hear widespread reports of DNACPRs from our members, but there are – there are many potential reasons why that might be, and I mean, they probably are in the realms of hypothesis really, but residents certainly of care homes where nurses are delivering care are people who are often very frail and often possibly are approaching the end of their life anyway. So the people with the highest need and, therefore, probably most likely to already have a DNACPR in place, would be residents of the services where our members are more likely to be working.

So it wouldn’t be abnormal for our members to be seeing quite high levels of DNACPRs in their day-to-day roles.

Counsel Inquiry: And for that reason, do you think it would have been helpful to have that sort of involvement in such a group earlier on in the pandemic?

Ms Claire Sutton: I think so, definitely.

Counsel Inquiry: The Inquiry has heard through its Every Story Matters about the integral role of district nurses in delivering end-of-life care at home during the pandemic.

We don’t need it on screen, thank you.

So this was – that was one of the quotes, but thank you.

Was there a change in responsibility for nurses in care homes and district nurses in delivering end-of-life care, including, for example, administering medication or facilitating access to healthcare during the pandemic?

Ms Claire Sutton: I mean, I think nurses working in nursing homes are very used to delivering end-of-life care for individuals. Residents of care homes without nursing would be probably calling upon usually NHS nurses, so district and community nurses, to provide that support. And I think that there were certainly times when it was difficult for health professionals to be able to attend in some social care settings because of restrictions that were put in place.

Counsel Inquiry: Do you know if the RCN was approached either by central or local governments or care and nursing homes directly to provide training to staff who were being asked to take on more clinical responsibility?

Ms Claire Sutton: I don’t, but we do produce lots of training resources, educational resources, and many of those resources are available to all nurses and nursing support workers, not just RCN members. So we do make a lot of our training and resources available for people to access without having RCN membership.

Counsel Inquiry: Professor Sleeman and Professor Barclay, experts to the Inquiry, have explained how training on end-of-life and palliative care for nurses is not mandatory once qualified, and that training is essentially up to local arrangements and funding dependent.

So do you think embedding such training for all care professionals in preparation for a future pandemic would be beneficial?

Ms Claire Sutton: Absolutely.

Counsel Inquiry: Lastly on this topic, the RCN, with Marie Curie and other organisations, developed an end-of-life community charter in March 2020. Which included ethical guidelines for best end-of-life and palliative care during the pandemic. What led to you developing those principles in the charter?

Ms Claire Sutton: The voices of our members, the clear need for that to be provided so that our members and the wider workforce were equipped with the best guidance and knowledge to be able to provide and deliver the care that they were doing.

Counsel Inquiry: And to your knowledge, was it used in practice?

Ms Claire Sutton: I think so, yes.

Counsel Inquiry: Moving on to a different topic, and that’s staff pay.

So, in the RCN survey undertaken in 2020, this topic was covered, and 48% of nursing staff working in the sector said that improved sick pay or leave would have made them feel more valued, and 89% of black and 78% of Asian respondents working in adult social care were worried about their financial circumstances, and that was higher than those working in the NHS.

So were concerns raised by the RCN around Statutory Sick Pay for those working in the sector and perhaps the impact that that had on self-isolation decisions?

Ms Claire Sutton: Yes, we raised that.

Counsel Inquiry: Do you feel they were listened to and acted upon?

Ms Claire Sutton: Um … possibly. It’s – as I mentioned earlier, it’s very difficult to say because obviously this was a very rapidly changing time and – and things were changing. And it would be fantastic to be able to sit here and say: we said this, therefore this change happened. It must have been because we said it. But actually, I suspect lots of people were raising the same concerns at the same time, and I hope that our voice was a part of what caused changes to happen.

Counsel Inquiry: The Inquiry has heard how a statutory sick pay scheme in Wales was introduced later than the rest of the UK. Did you hear any concerns about that specifically?

Ms Claire Sutton: Yes. So we had members contacting us throughout, expressing their concerns about their worries, about their financial situation, and we were continuously raising this with all four governments to try to contribute to the discussion to improve the situation for the social care workforce.

Counsel Inquiry: And then in regard to the Infection Control Fund in England, in your experience, was there widespread access to the fund for those actually on the ground, and was it effective, essentially, in limiting staff movement?

Ms Claire Sutton: I think it was very difficult for people to access it. It was a very complicated process for people to be able to access it. And I think that the limiting of staff movement, as I’ve mentioned, isn’t always necessarily feasible, and I don’t particularly think that the fund was easy for the workforce to be able to access to support that.

Counsel Inquiry: And then in regards to psychological support for the workforce, you have set out a number of initiatives and guidance in your statement that was issued nationally during the pandemic, to support adult social care staff with mental health and wellbeing. You have also said that access to a support package from the government for adult social care staff was later than that for the NHS; is that right?

Ms Claire Sutton: It was.

Counsel Inquiry: And in September 2020, the RCN called for access to support and counselling – sorry – to continue. Did it in fact continue?

Ms Claire Sutton: RCN’s counselling service, or …?

Counsel Inquiry: Sorry, no, that was around the support package that was provided.

Ms Claire Sutton: I don’t know to what length that continued. I know that there was certainly some, again, regional differences. So some areas the NHS opened up their services to, to social care employers and workforce within their locations. I think that certainly there was a point when NHS could access things quite readily, and it was very difficult for social care staff to be able to do that. There was access to – there was a particular app that had been developed that people could access. You needed an NHS email address to access it. So whilst nobody explicitly said you couldn’t have it, and in fact people were saying yes, you can have it in social care, but it was just so difficult to access, that it just became an additional barrier.

So I think that – we talk about having an integrated health and social care system. The Department of Health and Social Care oversees both aspects and working together to provide that support for individuals, but the equity of access seems to be so difficult to get on a level playing field that I think that needs to be considered for future. How would that be opened up to ensure that the 1.6 million people in social care can access the same as the 1.4 million people that work in the NHS?

Counsel Inquiry: I think another framework or area of support where it was also rolled out in adult social care after the NHS was the Adult Social Care Risk Reduction Framework. Now, this was intended for employers to support vulnerable workers but also to encourage employees to make decisions about their risk of infection and possible adverse outcomes from Covid-19. And I believe the RCN was asked to review drafts of the framework in around May 2020.

Are you able to help us with what feedback you provided, and whether that was reflected in the final framework?

Ms Claire Sutton: Certainly we fed back that initially it was very acute hospital focused, and that it needs to be – needed to be much more recognising of the diverse settings across health and social care, in order to be of use for the workforce.

Counsel Inquiry: And do you think that was achieved in the final version of the framework?

Ms Claire Sutton: It was better.

Counsel Inquiry: Do you know whether it was widely used or accessed?

Ms Claire Sutton: I don’t know whether it was widely used or accessed but I suspect that that would probably be the authors of it might be the best place to answer that.

Counsel Inquiry: The RCN produced a Covid-19 workplace risk assessment toolkit, not until December 2021, so sometime after. Was that for use in adult social care as well?

Ms Claire Sutton: Yes. So, I think, although that launched quite late, that was the – a culmination of lots of other things that were launched iteratively throughout the process, that was kind of pulling it all together into a very neat toolkit that indeed continues now.

Counsel Inquiry: And was that produced in response to what you were hearing from your members, as well?

Ms Claire Sutton: Absolutely, and in the absence of very clear, straightforward guidance that was applicable to relevant settings from other sources. We were producing our own guidance and, as I say, by December 2021, had collated that into the toolkit.

Counsel Inquiry: You have set out number of recommendations in your statement and we have already discussed a few today. Are there any others that you wish to draw to our attention this morning?

Ms Claire Sutton: I think for me, if I could wish for three things for the next pandemic – because it will happen – parity of access, equity of access, to training, to testing, to PPE, to ensure that health and social care are on an equal footing.

That the workforce capacity, whilst it is outside of the scope to be able to fix it here, if there is more recognition of the social care workforce, then there may be more sharing of that expertise across the settings. Yeah.

Ms Hands: Thank you.

My Lady, those are my questions – (overspeaking) –

Lady Hallett: Thank you very much, Ms Hands.

I think the first question is Ms Campbell, who is just there.

Questions From Ms Campbell KC

Ms Campbell: Thank you, my Lady, and thank you, Ms Sutton.

I ask questions on behalf of the Northern Ireland Covid Bereaved Families for Justice, and my question focuses of the issue of communication between you and your colleagues and the Northern Ireland Department of Health. And so it’s important that I should preface the question with the reference that’s in your statement, we know, and also in your evidence this morning, that generally communication between the Department of Health and the RCN, or your colleagues in the North, was positive. In fact, at times, you indicate it was excellent, particularly I think at the early stages of the pandemic?

Ms Claire Sutton: Yes.

Ms Campbell KC: But at paragraph 433, towards the end of your statement, and you’re dealing at this point with autumn 2020, you refer to a series of lack of responses from the Northern Ireland Department of Health to your colleagues, the Independent Sector Nurse Managers Network, ISNMN, about concerns around two things. The first was the changes to the testing regime in care homes which had come in without any engagement, you indicate, with care home representatives on 3 November 2020.

And in relation to that, you indicate that there had been correspondence issued I think on 6 November, followed up on 9 November – sorry, of December, followed up again on 7 January 2021, and no response received. Do you recall that aspect of your statement?

Ms Claire Sutton: Mm-hm.

Ms Campbell KC: And you also referred to correspondence around the same time and queries about the care home implementation arrangements, which required care homes to provide monthly updates on the implementation of guidance, including Care Partner guidance, which we know was issued around this time. And there was correspondence on 15 October, 22 October, 30 October, 1 December, and attempts to arrange a phone call on 15 December which were ultimately unsuccessful.

So, against a background of positive communication at earlier stages, do you agree that, firstly, these issues of testing in care homes and the implementation of arrangements around Care Partner guidance were not just interrelated but were amongst the most pressing issues facing staff in care homes in autumn 2020 as we go into the second wave?

Ms Claire Sutton: Absolutely. And the Independent Sector Nurse Managers Network is a group of RCN members who are independent sector nurse managers, so they are managers of nursing homes, and they were very much telling us that those were issues at that time.

Ms Campbell KC: And they were issues of such significance that your colleagues in the Independent Sector Nurse Managers Network might reasonably have expected replies and engagement from the Department of Health; is that right?

Ms Claire Sutton: Yes.

Ms Campbell KC: Well, how do we interpret, then, the non-response that you indicate that there was? Does it reflect that around this time there was insufficient engagement on these important issues from the Department of Health?

Ms Claire Sutton: Certainly that lack of response shows that, yes.

Ms Campbell KC: Do you know whether a response was ever received in a constructive way around either of those two issues, the testing and the implementation of Care Partner guidance?

Ms Claire Sutton: I don’t personally, but I can certainly find out.

Ms Campbell: Thank you.

Thank you, those are my questions.

Lady Hallett: Thank you, Ms Campbell.

Now it’s Mr Stanton, who is over there.

Questions From Mr Stanton

Mr Stanton: Thank you, my Lady.

Good morning, Ms Sutton. I ask questions on behalf of the Covid-19 Bereaved Families for Justice Cymru. I have questions on two topics, both specific to Wales.

First, at paragraph 208 of your witness statement you state that:

“… there were initial difficulties engaging with the [Welsh] Government …”

And that’s something that you’d mentioned earlier already in your evidence.

And:

“… that it very much seemed that care homes were a second thought after the NHS in Wales.”

Again, something you’ve dealt with already.

Are you able to give an indication of the action taken by the RCN to encourage the Welsh Government to treat care homes as a higher priority, and of any responses you received from them?

Ms Claire Sutton: So we did – the director for RCN Wales did write multiple times to the Welsh Department, and to the best of my knowledge, at times did not receive responses. I think that we were very, very keen, and pushing often to be included in conversations, and certainly once the cells were created, there was more interaction there, but yeah, I don’t know – does that help?

Mr Stanton: Yes, it does. And is that the nature of the initial difficulties that you mentioned, or is that something separate?

Ms Claire Sutton: No, I think that is the nature of it. I mean, I think it’s very difficult, because obviously, the context is that at the time, everybody is so incredibly busy and everything is changing all the time. But it still requires that engagement with, you know – we are the voice of nursing. We can be there to represent the issues that are facing the profession, and our membership in particular, and it did feel to the organisation at times that it was really pushing on a locked door. And it took persistence to be able to get through that.

Mr Stanton: Thank you. That’s helpful.

The second topic concerns the suspension of inspections, and at paragraph 100 of your statement you refer to a request made by the RCN on 16 April 2020 to Care Inspectorate Wales to carry out a lessons-learned exercise once suspended inspections had been resumed to identify best practice and avoidable harms. However, Care Inspectorate Wales declined to do so.

Having regard to the suspension of inspections and the subsequent refusal to carry out a lessons-learned exercise, do you think Care Inspectorate Wales provided sufficient oversight of care homes in Wales in order to safeguard residents’ rights and quality of care?

Ms Claire Sutton: I think the initial suspension of inspections, that decision was made based on risk, and the risk to individuals residing in care homes and working in care homes, but also the risk to inspectors of going across multiple locations.

I think key is that declining to address the lessons learned, and to analyse the success of that. And I think that you need to be able to do that in order to be able to learn from something, you have to be able to reflect upon it and learn whether it was the right decision, and – so yeah.

Does that really answer your question?

Mr Stanton: Yes, it does. Thank you very much.

Thank you, my Lady.

Lady Hallett: Thank you, Mr Stanton.

Next, I think we have Mr Straw, who is that way.

Questions From Mr Straw KC

Mr Straw: I don’t know if my microphone is working at the moment, I’ll just wait for it to come on. Ah, there we go. Thank you.

Ms Sutton, I represent – I represent John’s Campaign The Patients Association, and Care Rights UK.

At paragraph 383 of your statement you share stories about staff stepping in for families at the end of life, and, for example, and I quote:

“What I as a nurse struggled with most was when we had people approaching the end of their life, we were the only source of comfort and support they had in between attending to our other residents. We were the only ones allowed to be there to hold their hands, to tell them it was going to be okay and we also had the duty to convey information to family members who were left helpless at home, standing at their loved ones’ windows in all weathers, not being able to say a proper goodbye to tell them they loved them and hug them one last time.”

Do you agree that meaningful contact with loved ones at the end of life should have been facilitated to mitigate these difficulties caused to nurses as well as the serious harm caused by the separation to the dying person and their loved ones?

Ms Claire Sutton: Definitely.

Mr Straw KC: Can you helpful us with what specifically should have changed to better facilitate that contact? Was the a problem with the guidance being too restrictive or how it was interpreted? Or what should have changed?

Ms Claire Sutton: I think nurses are very good at carrying out risk assessments, and I think had the – had there been flexibility in the guidance to enable nurses to be able to ascertain whether a visit at that time was safe and could be facilitated, then nurses would have been ideally placed to be able to make those decisions with the best interests of those residents, their loved ones, and their staff in mind.

Mr Straw KC: So could they have been in a good position to do the balancing exercise between the harms, on the one side, caused – that we’ve – that are explicit in the quote that you have in your statement, against the risks from Covid and so on that there might be of allowing visitors?

Ms Claire Sutton: Yes, and I think it would be individualised to each person. You would make that risk assessment for that individual resident in their situation rather than blanket decisions.

Mr Straw KC: Thank you.

A different topic. I’d like to ask about people providing essential care, so as distinct from social visitors. Would you agree that an essential carer should have been treated as part of the care team and therefore have always been given access to the person they cared for?

Ms Claire Sutton: Yes.

Mr Straw KC: And how could that have been better facilitated?

Ms Claire Sutton: Again, I think nurses are ideally placed to be able to make risk assessments and be able to facilitate things in the safest possible way in that individual setting. Care homes, for example, are all different. Some of them are huge, purpose-built buildings. Some of them are very small, converted Victorian homes. The nurses, the managers, the people who are operating those services are the people who know that building, they know their residents, they know their staff, and they are able to make a decision to be able to facilitate things in the safest possible way to the best outcomes for their individual residents that they’re supporting.

Mr Straw KC: One factor that my clients have drawn attention to in this context is that if an essential carer is allowed in, that takes the burden off other staff or other nurses. Again, would that be something that nurses would be in a position to assess and understand and balance?

Ms Claire Sutton: Yes.

Mr Straw KC: At paragraph 393 of your statement you identified problems in some Scottish care homes, for example you referred to a 16-bed dementia unit where staff shortages and high agency usage caused things like lack of continuity, poor handovers, concerns about compromising person-centred care. If essential care supporters had been given access and treated as members of the care team, would that have alleviated some of the pressures that you’ve described?

Ms Claire Sutton: It may have done.

Mr Straw KC: Were these issues in Scotland representative of broader experiences reported to you by your members?

Ms Claire Sutton: It it’s certainly something that members did report across the UK.

Mr Straw KC: And did the – in response to this type of feedback, did the RCN take any action? And if so, what was that action?

Ms Claire Sutton: We did report the thoughts and the expressions of our members to the respective governments, and we did make it clear that, you know, nurses are really well placed to be able to support these things happening in a safe way.

Mr Straw: Okay, those are all my questions. Thank you very much.

Lady Hallett: Thank you very much, Mr Straw.

I probably shouldn’t say this, but if only so many more witnesses just said “yes” or “no” to a question. Thank you very much indeed for your help, Ms Sutton. It has been extremely helpful.

I know at times you’ve apologised if you’d not known the answer. I promise you, I’d far rather have that response, “I don’t know” or – rather than people making confident assertions which aren’t based on evidence.

So it has been extremely helpful. Thank you for the help that you’ve given to the Inquiry and for coming today, and thank you to any help – I don’t know if colleagues helped you prepare your statement?

The Witness: They did.

Lady Hallett: And thank you to them as well.

The Witness: Thank you.

Lady Hallett: Very well, I shall return at 11.30.

(11.13 am)

(A short break)

(11.30 am)

Lady Hallett: Ms Paisley.

Ms Paisley: My Lady, the next witness is Helen Wildbore.

Ms Helen Wildbore

MS HELEN WILDBORE (affirmed).

Lady Hallett: Thank you for coming to help the Inquiry, Ms Wildbore. I hope we haven’t kept you waiting.

The Witness: No.

Questions From Counsel to the Inquiry

Ms Paisley: Thank you for attending to give evidence today and for providing your witness statement dated 2 December 2024. And that statement has been co-signed by Rachel Power on behalf of the Patients Association and Julia Jones on behalf of John’s Campaign; is that correct?

Ms Helen Wildbore: It is, yeah.

Counsel Inquiry: Can I deal, firstly, please, with the broader overview of the three organisations, noting of course that there is a lot more detail provided in your statement.

You are Director of Care Rights UK, which was formerly the Relatives & Residents Association, which is a charity focusing on the rights of people in care. Throughout the pandemic, you state, “our small team worked tirelessly to provide support and share the voices of people seldom heard and raise their issues and concerns.”

You also explain that Care Rights UK has an advice line and through that, it was in direct contact with individuals at the sharp end of the pandemic which has given Care Rights UK a unique insight into the experiences of families dealing with Covid-19 and measures taken to manage it.

Can you please assist us with whether your organisation had a focus on any particular nation during the pandemic, and if that is still the focus today?

Ms Helen Wildbore: So when we were the Relatives & Residents Association, during the period that the Inquiry is interested in, we were focused on England. As Care Rights UK we now have expanded our focus to be UK-wide.

Counsel Inquiry: Can I just ask you to keep your voice up ever so slightly? I don’t know if it’s possible – maybe if the microphone could come further forwards.

Ms Helen Wildbore: Is that better?

Counsel Inquiry: That’s better. Thank you.

Would it be fair, then, to say that your evidence has been informed by many real-life accounts of people drawing on care and their loved ones throughout the pandemic?

Ms Helen Wildbore: Yes. So you mentioned we’re a small team. At the time we had two advisers running our advice service. We handled around 2,000 calls and emails, with bespoke one-to-one advice for people, providing further support as requested, as needed, around kind of letter writing, et cetera, and for some people we supported them for many months, sometimes years, as the issues persisted.

And we would hear from people every day, who were facing the anxiety, the trauma, of what was happening in care settings, mostly hearing from the relatives and friends of people supporting people needing care but sometimes directly from people using care services directly, and it was so difficult in preparing this to try and think of which stories to share with you, which voices to share, because every day we were hearing the devastation and the loss and the irreparable damage that was happening inside care settings.

Counsel Inquiry: And we’ll go through a number of the voices that you have shared.

In respect of the co-signatories to the statement, Julia Jones is the co-founder of John’s Campaign, and John’s Campaign, their initial focus was to ensure that the family carers of people with dementia in hospital were always welcome to support them, and it now campaigns for a legal right to a personal care supporter for every individual and its values are: get it right for dementia and you get it right for everyone. And it continues to support vulnerable people and their families within the health and social care system; is that correct?

Ms Helen Wildbore: It is, and we are campaigning with them for that change in the law around a right to a care supporter. It’s a joint campaign alongside rights for residents.

Counsel Inquiry: And Rachel Power is the Chief Executive at The Patients Association. That was founded in 1963, and it’s an independent charity campaigning for improvements in health and social care for patients. It’s dedicated to supporting the rights and interests of all patients and their families?

The first topic I’d like to ask you about, please, are the three organisations’ major concerns regarding the adult social care sector going into the pandemic. And in your statement, at paragraph 25, you explain that the structure of adult social care in the UK is complex, confusing, and not fully understand (sic) by those who work in the sector, let alone those who rely on it or make policy in relation to it.

What concerns did this give rise to, insofar as how your organisations felt that decision makers would be able to understand the sector and make key decisions in respect of it?

Ms Helen Wildbore: So we had a lot of concerns before the pandemic, during the pandemic, after the pandemic, about the lack of understanding of social care, from the very top of government through the Civil Service. The sector is hugely diverse, both in terms of the types of care settings, people getting support in care homes, supported living, support in their own home, rehab centres, et cetera. But it’s also very diverse in terms of the people who need support, and that diversity spreads across the type of support that they need, as well as age and the different needs that people have, very individual needs.

And from our perspective, as well as our co – Core Participants, we support people to navigate through that maze of – most people don’t think about social care until they need it, and often when they need it they can be in a point of crisis, with lots of emotions running around. People can often feel a lot of fear about the future in social care. But also, from the kind of relatives’ and friends’ perspective, of the people supporting that person needing care, there can be a lot of guilt, around they might have been providing that care themselves as a family carer up until that point. And I think the pandemic just made all of that a lot worse. And I think the guidance that we saw coming out during the pandemic really just demonstrated that lack of understanding of the sector.

Counsel Inquiry: And do you think understanding the complexity of the sector is something that needs to be focused upon in pre-pandemic planning, for example, and should there be more engagement with stakeholders at the stage before the pandemic actually hits?

Ms Helen Wildbore: Absolutely. And I don’t think you can understand social care until you understand what it’s like to be a person who is relying on social care and relying on care and support services to live an independent, dignified life. And so I think there needs to be much more understanding within the government and within the Civil Service, and I think that involves training for those – for the people who were making those policy decisions that have such an impact further down the line on people’s lives.

And I would say part of that training should be very hands-on, practice based, and it should involve speaking directly to people who are using and relying and drawing on care and support services, and the family and friends, about what that feels like and how those policy decisions do impact them.

Counsel Inquiry: At paragraph 28 of your statement you confirm that Carers UK estimated that by June 2020 there were a total of around 13.6 unpaid carers. Going into the pandemic, what do your organisations feel were the main risks surrounding unpaid carers and how they may be impacted by the response to the pandemic?

Ms Helen Wildbore: I think our concerns about what were happening to unpaid carers were very similar to our concerns about what was happening to people who are drawing on care and support services, in that it was very clear that people – that lack of understanding of the sector that I spoke about, and how that impacted the policy decisions that were being made and the guidance that was being written, we were concerned that there was a huge gap between what was happening at government level to make those decisions, without people in those rooms who really understood social care – and I know other witnesses have spoken to that, about the representation of social care when those decisions were being made – and what that meant for the people on the ground who were either relying on care and support to live a dignified life, and the people supporting them at home, family carers, to live a dignified life, and the gaps that they were having to fill that were left by neglect of social care over many years, by many different governments, the lack of support for people who need care and support, and the lack of support for those family carers.

And I think we saw that play out during the pandemic, and we saw the devastation that is caused when you don’t understand a sector, you’re making decisions about that sector that you then don’t follow through and monitor what’s happening on the ground, and the impact of those decisions, and you’re not talking to, engaging with, or even listening and hearing people who are at the very sharp end of those poor decisions.

There was very little engagement with people directly who were being affected, and even when they raised their voices through organisations like myself and the other campaign groups, the stories were there. The impact was there. We knew what was happening and they were shouting about what was happening, but still it didn’t lead to any change in policy. It didn’t lead to any change in even understanding about the sector.

Counsel Inquiry: And just two more points on going into the pandemic, please.

At paragraph 32 you explain that all three organisations had concerns that social care has traditionally been viewed as isolated from and separate to, healthcare services, and concerns were also held regarding the prioritisation of healthcare over social care.

How do your organisations feel that that affected the early response of decision makers in the pandemic?

Ms Helen Wildbore: I think the focus seemed to be on institutions and I think that led to a lot of very poor decisions being made, and that had a terrible impact on the ground for people who were relying on care and support services.

Counsel Inquiry: Is it possible to, perhaps, give an example –

Ms Helen Wildbore: Yes.

Counsel Inquiry: – of one of those poor decisions, please?

Ms Helen Wildbore: So I think the messaging around “Protect the NHS” led to policies that were detrimental to people needing care. It put people’s lives at risk, for example the decision around discharging people from hospital into care settings without testing. And I think what was lost sight of was the fact that these services exist to serve people, and in future, a change that is definitely needed is a focus on people not institutions, and a focus on the people who are most at risk, and the kind of services and support that they need, and how those services need to protect them.

And again, I think engagement with people who have experience of those services, and social care needs to be as highly valued as NHS and health services, and there’s lots I can say about that, in terms of the reform that’s needed of social care, but I think we were coming into the pandemic in such a poor place with social care. And that – those problems just got worse during the pandemic, and we still see them today.

Counsel Inquiry: Can I just pick up on the point you raised about “Protect the NHS” and the messaging. Do you think, then, it would be useful going forwards if there were similar-sized campaigns that focused on the care sector or do you think joint campaigns may be a way forward? So specifically on messaging, how could that be addressed?

Ms Helen Wildbore: I think the messaging needs to focus on the people. It shouldn’t have focused on any institutions because, as I say, those institutions are only there to serve people. The whole point of the NHS and the whole point of care services is to support people to live well and to support them with problems that they have with their health and any kind of support needs that they have around care. So it should never be about the institutions. It should be a focus on why they exist.

Counsel Inquiry: Just finally on this point, your statement outlines that for years your organisations have worked to emphasise the importance of including those who draw on care in the very decisions that will impact upon them and affect them, and equally the significance of including their relatives or representatives in those conversations. Had there been a greater focus on person-centred care and had it been more recognised, are there any particular decisions that you think may have been different?

Ms Helen Wildbore: Well, what we saw was that person-centred care was just completely lacking in the approach that was taken to the pandemic. Person-centred care is about treating people as people, and not as objects to be moved around, not as statistics, and I’m afraid that was the approach we saw that was taken during the pandemic, and I think the public health response failed to see people as holistic people in terms of their holistic health and wellbeing, and there was far too much focus on protection from the virus without balancing that against the protection that was needed from the very measures that were being put in place to manage the pandemic. And I think there was a kind of lack of understanding of the support that loved ones provide.

So guidance that was saying, from March 2020, to stop all visits from family and friends, but then couriers – in the guidance it said that couriers were still allowed to visit as long as they washed their hands. I mean, the lack of understanding of what that caring role is and how it’s fundamental for that to continue. And other guidance was making exceptions for that. We saw in hospital guidance that there were exceptions for family carers and there were exceptions around if a person would experience distress without, you know, the support of their carer.

And it was far too late in the pandemic that we finally saw that coming in, in guidance for care services – around, I think it wasn’t until December 2020 that it first recognised essential carers, and then the essential caregiving role didn’t come in until March 2021 which was a whole year after the pandemic had started.

Counsel Inquiry: I want to ask you more questions about that in detail, but just before we move to that topic, can I ask some specific questions, please, about the work that Care Rights UK was involved in during the pandemic, and we’ve already touched upon the advice line at the start of your evidence and you’ve explained that that was a vital source of support for people.

Was Care Rights UK able to take those accounts and feed them into the government at all?

Ms Helen Wildbore: So we were trying. So I have some – I pulled out some – to remind myself before this, I pulled out some of our engagement. So we – the former Care Minister came and gave evidence to the Inquiry and said that there was no representation for people in care during the pandemic. And I think that just speaks to the kind of lack of awareness of the sector because, as we’ve seen during this module, there were organisations providing that voice. They just weren’t engaged with. And so from our perspective, as we were then The Relatives & Residents Association, we had been around for 30-odd years providing that advice service for older people needing care, and we had been writing to the government and the regulator from quite early on in the pandemic, in May 2020, and it wasn’t until John’s Campaign took legal action against the government guidance and as part of that – dropping that legal action, they insisted that the government listen to and engage with us.

So at that point we were finally asked to join the Covid Adult Social Care Working Group of stakeholders in the summer of 2021.

Counsel Inquiry: If I could just pause you there, in fact, that’s my next question. I understand it was quite late, in fact, during the pandemic that Care Rights UK were involved. Can you provide a broad overview of that group? Was it useful, would it be useful for the future?

Ms Helen Wildbore: So my understanding was that that group had only been set up to deal with the pandemic, and then it ceased. I can’t remember when it ceased, but I can provide dates because I’ve got an email trail with me pleading with the government not to close that group because at that point when they closed it, there was still guidance that was still having a terrible impact on people’s lives in adult social care.

Counsel Inquiry: And that’s something you touch upon –

Ms Helen Wildbore: Yeah.

Counsel Inquiry: – in fact, I think, in your statement for anyone listening.

Was it effective while it lasted?

Ms Helen Wildbore: So when I joined by the summer 2021, my reflections of it are that by that stage risk-averse approaches had already been so embedded across the approach to the pandemic that it took immense efforts to get even small changes and even small shifts in approach.

So if I could just give an example, there’s an iteration of the government guidance, it was being reviewed in October 2021, of the visiting guidance – and remember, by that stage, in October 2021, most of the country was back to normal. And I was asked to review that – changes to that guidance, and I totted it up. In total I made 62 comments on what I thought was inappropriate and wrong with that guidance. Ten of those were where I thought it was discriminatory and I pointed out to them where it had the potential to breach Equality Act, Human Rights Act. There were four instances in that guidance where there were blanket approaches still being taken. There were six instances where the guidance was actually taking us backwards rather than forwards, and in 15 places the guidance was contradictory to either something else in that same version of the guidance or something else that they – in different versions of guidance.

And my overarching comment at that stage was that a massive overhaul to that guidance was needed, given where we were with the rest of society and other restrictions being lifted, the country almost being back to normal. And I said it needed to start from the place, from an approach of focusing on rights and focusing on wellbeing, with infection prevention control measures obviously added in where they were necessary and proportionate to identified risks. And that was because we needed to – a shift in approach and we needed to delineate that shift in approach to end what we were seeing of closed cultures that had kind of been developed and embedded during the pandemic.

There was some improvements that were made as a result of that, a kind of clearer focus on autonomy and rights, but it was a constant battle. And though, in the next version of the guidance, I think it was in November, the very next month, we were asked to look at something in the guidance again, and there was a positive piece in the guidance that had been taken out, even though I pleaded with them to keep it in around if people have capacity to make decisions to go out and leave their care home, they couldn’t be stopped from doing that without a kind of legal framework to do that.

And so we – I – there was a sort of persistent request to the Department of Health and Social Care to meet their own legal obligations under the Equality Act, under the Human Rights Act.

Counsel Inquiry: And can I just ask, in the event of a future pandemic, how do you think it is that we can ensure that the voices of the sector are heard? So is it through working groups? Is that the way to do it? Are there any other ideas your organisation has?

Ms Helen Wildbore: Well, I think what was useful about the working group was that it gave the government and it gave the policymakers a route through to the sector to hear what was happening on the ground, and to hear the reality of what it’s like to be at the tail-end of the decisions they were making.

So I think those kinds of routes definitely are good, and that’s why I wanted it to continue at least until the guidance had fallen away and there were no longer restrictions on people relying on care services. As long as the group has proper representation on it.

I mean, there were – we weren’t invited until the summer of 2021, and we were only invited as a result of John’s Campaign insisting that we be engaged. There was no representation from people who were relying on services directly, or their families. It all came through organisations. And I think – so the structure and the make-up of the group needs to be correct for that to, you know, to – for it to do its job properly. But also how that group operates and at what points it’s brought in to engage, so that it’s not too late to have any kind of impact on what the guidance said, but also that the experts’ voices on that group are listened to and respected, and action is taken as a result. If I could just give you an example of that?

Counsel Inquiry: I’m just conscious I have a lot of topics that I wish to explore with you, but I do have another question if I can.

Lady Hallett: Just before you ask it – I know you’ve got a lot to tell me, and I do understand, but we’re okay for time today so if could ask you to speak more slowly.

The Witness: Sorry.

Lady Hallett: It’s all right. You’re not the first and I’ve no doubt you won’t be the last witness.

Ms Paisley: In respect of the evidence that that group was receiving, one of the things you note is that a member of SAGE in that group said that there was an evidential black hole around the impact of isolation, that the harm was overwhelming. What more could have been done to collect evidence to provide to that group by the government, in your view?

Ms Helen Wildbore: Yes, so that was as a result of us consistently asking to see that evidence. So we had actually submitted a rewrite of the guidance to the stakeholder group, which started from a position of: these are the rights, these are the lawful restrictions that can be put on their rights, these are the infection prevention control measures that should be in place as a precaution.

That was supported by several members of the stakeholder group, including the organisations you’ve heard from already, National Care Forum, National Care Association, as well as Care England and Ark(?), from the provider side, and the Alzheimer’s Society as well. That was rejected within 40 minutes of me submitting it to the department, which is not long enough to even talk about it with your civil servant – you know, your civil servant colleagues, let alone present it to a minister as an approach that was supported by so many of those voices in the stakeholder group.

And that’s what I mean about those voices. If you’re going to collect those people around the table, and hear from them, you have to respect the views and the suggestions that they make to you.

And as a result of that, the response we got back said that they – the clinical evidence, the clinical advice wouldn’t support that kind of “light touch” approach, is what we were told it was, even though it was based on legal duties that were in place at the time.

And then, as a result of that, we then requested the evidence. We said “Well, are you actually collecting evidence of the harm being caused by isolation?” We were constantly told that they were taking advice on the clinical evidence around the harm of Covid, but we were constantly asking “Well, are you balancing that against the harm of the restrictions that are being put in place?”

And that’s what led to the SAGE colleague coming to one of those meetings and admitting that.

And I think they – there wasn’t enough being done to hear those types of stories. Whether there was data, whether it was kind of statistical, hard data or not, there was certainly story after story that we were hearing, that our colleagues were hearing, other organisations were hearing. And we were getting them out there, we were putting them in the media, we were inviting to the government, to the regulator, telling them these stories and these examples. And they weren’t heard.

So there was plenty of opportunity for them to stop and take stock of the impact of those restrictions.

Counsel Inquiry: And can I just move on, please, to a slightly different topic. In your statement you say there were very few other sources of support as key agencies and professionals who had legal duties to protect those in receipt of care stepped back. And you discuss the CQC, who paused routine inspections.

What were the concerns about the lack of routine inspections during the pandemic?

Ms Helen Wildbore: I mean, we had concerns about the CQC’s approach to its regulatory regime before the pandemic, I should say that. But what we saw during the pandemic was the CQC abdicating its responsibilities, pausing those regular inspections, which actually never properly returned and that led to the Secretary of State recently calling them “not fit for purpose”. But that vital role of the regulator in maintaining minimum standards was so important during a time of crisis because that’s when the people using and relying on those care and support services really needed them the most. And it left people at risk, people who were at risk of abuse were abandoned when the services and the systems designed to protect them backed away, CQC, as well as safeguarding teams. People at risk of neglect, when we saw services stretched, I mean, staffing issues were a problem before the pandemic, got much worse during the pandemic itself, when people were themselves going off sick, and at the same time, care workers were being asked to fill the gaps left by other services when health professionals, et cetera, stayed away.

But also the vital role of the regulator in monitoring those sort of everyday indignities that wouldn’t be as serious as abuse or neglect, but they’re sort of what it’s like to be on the tail end of a poor culture, that has been a poor culture over many years.

Counsel Inquiry: And you explain, in fact, that your organisation wrote to the CQC a number of times to express your disappointment with their role during the pandemic, and the CQC has provided a supplemental statement to the Inquiry, and at paragraph 14 – and just for reference it’s INQ000587795, but I don’t need to have it on screen, thank you – it says they sent a number of letters in response, and they say that those letters clarified how the CQC was continuing to monitor and inspect:

[As read] “… how we were sharing information and data within the sector, and the support that we were providing, and in our 20 May 2021 letter, we also provided clarity on our role in relation to visiting in care homes.”

Did their responses allay your concerns or did you continue to have concerns throughout the pandemic?

Ms Helen Wildbore: They didn’t allay our concerns at all. I’m afraid their responses were dismissive. We would send them evidence of harm alongside those letters, which as I said, seemed to make no difference. They were defensive. They read as almost CQC trying to justify their actions, trying to justify their position, and there was a massive focus on what they couldn’t do, as opposed to what they could do, and we had actually set out in our letters requests for them to be proactive and to actually take some action to try to represent the voice of the sector, but also to ensure that the sector was meeting its legal obligations.

And that’s what CQC is there to do. Those minimum standards are set down in law, in their regulations. And I think the response was also quite submissive. I think there was – the public health voice seemed to dominate, and I think – I’ve got an example in terms of the – at a time, I said CQC – during a crisis, those minimum standards become so important because it was also at a time when family and friends who were there to support people relying on care services couldn’t be there to carry out their normal role of the eyes and the ears on ground, to spot concerns, and the guidance that CQC issued alongside the government guidance, we were really worried that that was encouraging breaches of its own regulations as well as breaches of legal rights.

So they had, in their guidance in May 2022, so again the country is back to normal, and guidance at the time – government guidance at the time said that there was – let me start again.

So there was the government guidance around isolation after hospital appointments in May 2022. There was no reference in CQC’s guidance to person-centred care. There was no reference to the need for individual assessments, and what was most concerning about that to us was that it was in a section of CQC’s guidance which said it was best practice, good practice, and that was inconsistent with the government guidance at the time, which had been updated weeks before that, which obviously creates lots of confusion for people.

So that’s what we wrote to the CQC about. One of our letters was specifically about that guidance, and they did amend it and they said in their letter they were going to amend it, but there were still concerns around how it was amended. It was still encouraging breaches of those regulations in sections that were called “good practice” and we actually wrote back to the CQC privately to offer to help them to rewrite the guidance, but that wasn’t taken up.

Lady Hallett: Can I just – I’m sorry to interrupt.

Can I just go back to points you may have heard from other witnesses. I do understand the concerns about suspension of inspections, of course I do. Obviously, as you say, you haven’t got the usual eyes and ears because you haven’t got other visitors, you haven’t got health professionals, you haven’t got family carers, and the like. But as far as the CQC were concerned, it was a balance of risk, wasn’t it? It was a balance of risk, obviously to their inspectors going into the care homes but then a balance of risk, the risk of infection to residents and to staff in care homes.

I appreciate that you think they took the – that they weighed up that risk wrongly, but presumably you accept that they were right to balance the risk?

Ms Helen Wildbore: Absolutely balance the risk. That’s what everyone was trying to do. I think what they did was they put too much focus on the risk of – that the pandemic posed whilst at the same time not putting enough focus on the risk that those restrictions and the measures that were taken in response to the pandemic posed.

They didn’t seem to factor very much at all in the approach, and I think what that led to is a sort of – we ended up in a kind of upside down world where non-statutory guidance was given precedence over legal rights, and I think CQC’s response shows that the government’s approach, you know, to the way it managed the pandemic shows that there wasn’t enough focus on the harms that were being caused by the restrictions put in place, and – of course you reduce footfall, of course you do that, and of course you use infection prevention control measures to protect people and take precautions.

But I think, from our perspective, there were certain bottom lines that should never have been crossed and I think health practitioners backing away, safeguarding teams backing away, the pause on routine inspections, all of that left people at risk. And I think what I’m saying is there hasn’t been as much focus as there should have been on that risk and on the harm that that caused.

And I think …

Lady Hallett: Can I just pursue, while you ponder what you were going to finish your answer with, yes, by not having the safeguarding teams and the CQC routine inspections, it put people at risk. But again, that is a question of the balance of risk.

And as I understand it – and don’t think this is necessarily my view, I’m just putting forward the other side of the argument – as I understand it, at the time when inspections were suspended, the focus was then on stopping this virus running through the entire country causing how many – goodness knows how many deaths and how much suffering, and of course nobody knew then how long it was going to last.

And so if you’re then balancing the risk of neglect or abuse against the risk of a fatal virus getting in a care home where there are many vulnerable residents, isn’t that a fair balancing of the risk at that time? I appreciate you may say it went on too long, I do understand all of that, but when the decision was actually taken?

Ms Helen Wildbore: And you can see in the early stage of the pandemic and the fear of what this pandemic could do, and the people who were most vulnerable in terms of older people, disabled people. So I don’t envy them at all making these difficult decisions, and I have a lot of empathy for the decision makers who were having to weigh up that balance. And you’re right, we didn’t know how long it was going to go on. We didn’t know – but we could look to other countries to see what was happening and we had seen what was happening in Europe and other parts of the world, and I think there wasn’t enough of a kind of learning of lessons from what was happening around the world, but also, a learning of lessons from what was happening here, around how long that was going on for.

And so yes, CQC paused routine inspections at the beginning thinking they were doing the right thing in terms of not spreading the virus, not taking more risk into those kinds of settings, but the longer that went on, the more that other risk of the isolation of people in those care settings became far too great.

And even at that stage, there didn’t seem to be a change in approach. And even CQC saying that they were using – they were focusing on risk, they were trying to balance those risks but they were also focusing on care settings and people most at risk, well, how were they doing that? How were those judgments being made at a time when people in care settings were unable to be with their vital support networks that they’re used to, who, for people who might have communication difficulties, might not ever be able to speak out about concerns that they had about their care, particularly around abuse or neglect.

They – it will – all those other professionals are not there to be the eyes and the ears, when families and friends are not there to be the eyes and the ears, you’re only relying on whistleblowers and on people themselves speaking out about their poor care, and how – the barriers that people had around that, if they even had the ability to speak out about poor care. Do they have a phone in their room? Could they call CQC directly? Did they – you know, how were they ever going to speak out about that themselves, and having the confidence to do that, when the person that you’re complaining about is the person who is providing you with very intimate personal care?

And the fear that people have – this is a consistent theme on our advice line, before the pandemic, during the pandemic, and today – is the fear that people have of raising concerns and issues about their own care, or on behalf of a loved one, because of a fear of what will happen, repercussions, the fear that the care will get worse, or that they will be – they will face restrictions around visiting. People can be – often we hear people being evicted for raising too many concerns about their care.

Lady Hallett: I think we’ve moved beyond my question now. I’ll hand back to Ms Paisley.

The Witness: We have, sorry.

Ms Paisley: Thank you, my Lady.

Can I change topic then, please, to essential caregivers. What is the significance of the role of an essential caregiver and what are the risks for individuals in receipt of care if they don’t have that support?

Ms Helen Wildbore: So can I focus first on the role of an essential caregiver? I think the use of the word “visiting” has – misses the many, many roles that a person plays when providing support to somebody in a care setting.

It’s not only about company and companionship and love, but the many roles that a relative or friend might take in terms of a carer. They might themselves get involved in providing that care.

As we’ve said, they’re the voice, they’re the eyes, the ears, the advocate for that person, raising concerns on their behalf. They might be the only person that that person would tell if they were in pain or if they were at risk of poor care.

They provide – they are the memory of that person. They prove a link back to, you know, previous homes and relationships. They might be the translator for that person. They can pick up queues and signs, particularly if somebody is no longer able to verbalise. They can pick up when someone might be in pain or when there might be something that they’re trying to communicate.

And so that essential support is – can be practical but is also emotional, and I think what we’ve been calling for in terms of the right to a care supporter is not about visiting; it’s about the kind of vital support that people have from the person who knows them best and the person that they have chosen to be there, to be their eyes and their ears and their voice when they need it.

And so the kinds of roles that people were playing during the pandemic, and before and today, support – with eating, for example. So there was someone we supported, a woman called Rosemary, who – her husband used to go into a care home to support her to eat, six hours a day. When he was refused access, even though he brought his own PPE to try to, you know, follow the IPC measures, Rosemary refused to eat and drink, and he told us that she starved herself to death.

As I say, there are many roles that people play supporting people to live well with dementia, for example. So one of the people we supported, Helen, would go in and see – when she was allowed in, to see her mum, and provide that stimulation. She had taught herself what – how to support somebody to live with dementia, and so she would play music and songs that would remind her mum of previous times, and hold her hands, albeit with gloves on, just to provide that kind of physical contact that can be so important for people with dementia.

Counsel Inquiry: And if I can just – I think you’ve, actually, in fact, answered my second question, which was the risks, but I think you’ve covered that in the evidence you’ve given.

In the event of a future pandemic, then, does your organisation believe essential caregivers should be able to continue attending a care home or a care setting under all circumstances?

Ms Helen Wildbore: So I think of course you, in a future pandemic, you reduce the footfall, and we’re not saying open door policy. And like I say, what we’re calling for is not about visiting; it’s about vital support. So what we’re saying is that people should be able to nominate a person or, potentially, if there is different support they get from different people, multiple people, who they should never be isolated from, because what that person is providing them is so vital for their care and support that they should be seen as part of the care team. They should be their partners in care. And they should be treated in the same way as a care worker would, with all of the same precautions around testing and PPE, et cetera.

Counsel Inquiry: And did any nation in the UK, that you’re aware of, get this right, or is any nation taking steps that you think are adequate in respect of essential care?

Ms Helen Wildbore: Well, we did have essential caregivers written into the guidance eventually, and I know that happened across in Northern Ireland, as well, and across other parts of the UK. What we’re saying is that guidance was not enough. We saw so many people who were refused an essential caregiver even when it was in the guidance. In fact, one woman, Ann Ablett, she asked for – to be the essential care supporter for her mum when that was allowed in the guidance. She was refused, and then when she came back to them and said this is what’s in the guidance, she tried to push that, her mum was evicted from her care setting and, actually, her mum passed away before that eviction notice could take place.

But what – we saw huge variety and variation in the response to that being in the guidance. Many care settings welcomed essential caregivers in, recognising that they played that vital role and, in fact, some care settings had never stopped people performing that role from visiting because they recognised the mental health implications and the kind of the physical health implications of cutting people off from that essential support.

But for other settings we saw huge problems with the essential caregiver role only being in guidance, and so that’s why we’re calling for a legal change for it to be a legal right, and we, as a response to our campaigning, the government – previous government – brought in a new fundamental standard on visiting, so Regulation 9A is now a new fundamental standard.

Counsel Inquiry: Can I ask you, then, a question about Regulation 9A, please, and the Inquiry heard evidence from Michelle Dyson about that. Is that a positive step and do you have any – does your organisation have any comments or concerns?

Ms Helen Wildbore: It’s very welcome, and it should always have been a fundamental standard.

Visiting and contact and companionship with the people that you want to maintain relationships with in health and care settings is absolutely vital and it should always have been a fundamental standard. But what we see is huge problems with that on the way that’s being implemented on the ground now.

So Regulation 9A has been in force for a year, it came in in April last year, and from what we hear, through our advice services, is that that is not working. So we are supporting people who are still facing restrictions on visiting, and they’re trying to use Regulation 9A to challenge those restrictions and being told by the care provider that they don’t need to follow that.

So if it’s not working now, it’s – what’s going to happen if there is a future pandemic? And if there is a sort of crisis point, I fear the same will happen as with the rest of the fundamental standards that just went – fell by the wayside when the pandemic hit.

And so the issues we have around Regulation 9A is that it’s – it’s not guaranteed. It relies on the CQC monitoring it. CQC can’t investigate individual complaints. And the CQC’s own evidence to this Inquiry said that it was too difficult for them to monitor breaches of visiting guidance.

So we need a shift. We need a culture shift and we need to shift the power back to the person, and allow them to choose for themselves, to nominate who that care supporter is, and that will respect their autonomy and their choices around whether they want one or not, and if so, who it is.

And then it will shift the power back to the person as opposed to it being, as it is at the moment in the regulations, a duty on providers that is monitored by CQC. This will be a legal right that sits with the person.

Counsel Inquiry: Can I change topic again, please.

And I appreciate the significance of giving a voice to those that you represent, but if I could invite you not to use full names, if you can just use first names, if at all possible, please.

Ms Helen Wildbore: Sorry, sorry.

Counsel Inquiry: Now, Care Rights UK undertook a survey on healthcare experiences of those living in care homes during the pandemic. You explain that this was undertaken in May 2023, but it was carried out with the aim of collecting information on the healthcare experiences of people in settings during the Covid-19 pandemic with the benefit of hindsight.

And you say that these findings illustrate what you were hearing day in, day out, through your advice line.

Now, your statement deals with the requirements at points in the pandemic for mandatory isolation following visits to healthcare facilities outside of the care home upon a resident’s return, and you say this had a chilling impact upon people’s ability to access healthcare. And one example is a response to the survey which said:

[As read] “Mum delayed going for X-ray until after Christmas. She would have been isolated over Christmas 2021 for 14 days. She was in considerable pain and her mobility was affected.”

And so did your organisation hear evidence that people were effectively having to choose between being isolated on one hand or living in pain on the other?

Ms Helen Wildbore: Yes, we did. And that led to impossible decisions for people about whether they would seek health support that they clearly needed.

There’s another example of a woman in a care setting begging their daughter not to remind care staff about appointments for cancer, because they were so anxious about isolation that would result from that. And I think there should never have been blanket rules. Blanket rules by their very nature are not human rights compliant. They don’t take into account individual needs and the needs for those individual assessments that are so important.

All of this should have been done on an individual basis with an assessment of risk, both the risk of Covid as well as the risk of harm from isolation. And precautions like testing, PPE, et cetera, can be used in both the health setting where they’re getting their health needs met, and in the care setting when they return, to manage those risks.

Counsel Inquiry: So, in the view of your organisation, it may be that isolation might be appropriate where there are risks but there should be steps taken, such as testing and PPE, to try to mitigate those risks and reduce the length of isolation. Would that be a fair summary?

Ms Helen Wildbore: Yes, although I do have some concerns about the blanket use of isolation, and I think that’s – we heard so much harm that was being caused by those isolation measures, not only after visits out, including health appointments, but also when care homes had outbreaks and went into lockdown, homes went into isolation, visiting was restricted again.

And those isolation periods caused untold suffering to people around – so we have people who said that they were longing for some wallpaper to look at so they didn’t have to look at white walls. People told us “I’m barely existing.”

There were people who were self-harming, withdrawing and hitting themselves in frustration, biting their arms because they couldn’t verbalise their distress. People who were strapped in their chair for 14 days. We supported somebody whose food was left on trays outside their room, and so they didn’t eat, and their family had to move him from that care home.

Counsel Inquiry: And so this is the significance of assessing in each case, then, in the view of your organisation undertaking a risk assessment tailored to the individual?

Ms Helen Wildbore: Absolutely.

Lady Hallett: Sorry, just pausing there. Again, I’m not saying this is my view, I just want to put to you something just in case, because I have to consider all arguments.

If you’re the hospital giving somebody an appointment and you’ve got all sorts of measures in place to try to stop the transmission of this deadly virus, how do you carry out an individual risk assessment for the individual in a care home when it comes to working out how or when they should isolate or for how long? I just don’t understand how a system that was creaking, as we know, to cope with this deadly virus, how the individual hospital is meant to carry out the risk assessment and not insist on having a 14-day isolation period? And it wasn’t, of course, just people in care homes, and the like, in receipt of care who were subject to breaches of their rights; we all were, because we were all told we had to do things that normally our rights would be protected.

So I’m not understanding how it would work. That’s all.

Ms Helen Wildbore: Yeah, so I think that’s a really good example of where a health service and a care service have to work together. It may be impossible for a health practitioner to assess that person over a screen or over the phone to assess the risk for the hospital themselves, and that’s where the relationship with the care workers comes in, in terms of carrying out that risk assessment. They know the person, they’re providing that support to that person every day.

Involving that person in that risk assessment is absolutely vital, hearing their voice, hearing what impact that’s going to have on them in terms of the impact on their health of not receiving that support, but also the impact if they are asked to isolate for 14 days afterwards. Involving the person’s family or, you know, their chosen representatives in that conversation too, to help make a decision about what is best for that person, as, at the same time, trying to protect the health workers, the care workers who are going to be supporting that person, but the other patients and the other people living in that care setting as well.

And I think we didn’t see any of that. We didn’t see people being involved in those risk assessments, and we didn’t see the voice of people supporting them, their family and friends, who, like I say, for people who are non-verbal, for people who have difficulty communicating, those people can pick up on those signs and those little cues that people give, to assist health and care workers with that, and I think too often people, relatives and friends are seen as part of the problem rather than being part of the solution. And –

Lady Hallett: Yes, thank you.

Sorry, I’m going to hand back to Ms Paisley.

Ms Paisley: Thank you.

Can I please ask some more questions about the survey and some of the responses you received. And so can I have on screen INQ000273449, please, at page 13. And this is in respect of end of life. And so the experiences of those in receipt of care and their loved ones’ experiences. And just to read some of these responses: “Great distress to us both. Still upset by the memories of those difficult last months of her life. Not even allowed an end-of-life visit. The manager told me ‘she’s close to the end of her life but not quite there yet’. On a video call my mum pleaded with me to visit. Video calls were very difficult as she couldn’t see or hear properly.” Another one reads: “An unhappy and difficult death. Anguish for family, lasting trauma.”

“Dad died without good end-of-life support. I experienced PTSD.”

“Devastating impacts, no support to me as the person having to face such horrific circumstances alone and no support for my mum stuck in a room dying alone. The carers don’t have time for emotional support and especially when they were dealing with 22 other deaths in the rooms around them.”

At paragraph 124 of your statement, you explain even when guidance did allow visiting, some care providers enforced stricter restrictions than required by the relevant guidance at the time, including because terms such as “end of life”, which allowed for exceptional visiting, were not clearly defined. What is the importance of properly defining terms such as “end of life”, and do you think that that had an impact upon some of the responses that we’ve seen here?

Ms Helen Wildbore: Yes. I think, for me, this one of the most inhumane aspects of our response to the pandemic. The lack of palliative and end-of-life care led to unnecessary suffering, and trauma for loved ones who were witnessing that suffering. People dying alone and being denied a dignified death because of isolation from loved ones until it was too late. And the cruelty of allowing end-of-life visits and then, when they happen and the person rallies because their loved ones are there, those visits being withdrawn again. And that terrible – the emotional rollercoaster you go through as the person who is dying but also the person who is there to say goodbye.

So that happened to someone we were supporting, Lesley, who had been in care for seven years, and her husband John supported her to eat and drink, and he was allowed end-of-life visits but then they were withdrawn when Lesley started to eat and drink again when she responded positively to him being there. And John described that as unbearable.

And for the people who are left behind, the bereaved families, the anger, the guilt, the trauma that I don’t – some people will never recover from. And I think the inconsistency we heard around “end of life”, whether it meant final days, final weeks, sometimes it was final hours, when the person was already unconscious. And it wasn’t until December 2020 that the guidance was amended to say that “end of life” should mean the last year. But the guidance was inadequate. It was not clear and it came too late when poor practice had already been embedded. And I think there was a lot of fear from providers about doing the wrong thing. And I think when we heard the Prime Minister blaming care homes for the high death rates in care, saying that too many care homes didn’t really follow the procedures in July 2020, I think that just embedded the fear.

And I think, looking to the future, we need proper training on end-of-life care for care workers. We need to ensure access to palliative care for people in residential care, we need to embed that last year of life as standard practice, and we need to ensure that people’s choices and autonomy around how they want to end their lives are respected, which includes recognising the importance of loved ones in supporting a dignified death.

Counsel Inquiry: Can I just ask two follow-up questions on what you’ve said, please. The first is in respect of healthcare workers visiting into the home. So we’ve touched upon visits out and the isolation that followed that, but in the view of your organisation, should there ever be restrictions on healthcare workers visiting inside residential settings?

Ms Helen Wildbore: I think there are some people who are so fundamental to providing basic good care that they should never be kept away. And I think palliative care workers, health professionals, safeguarding teams, you know, regulation inspectors, all of those people are so important for protecting people who are in the most vulnerable of situations, in a care home, in a care setting, where the power imbalance is so skewed and they feel completely – people can feel completely powerless in those kinds of situations. And when family and friends are being kept away, those people, those professionals become even more important.

And for people who have no one – there are many people in care settings who have no family and friends, those professionals become their eyes and ears and their advocates. And they’re too important to keep away. There should never be blanket rules on that. And I think it has to be a managed response. We have to use the infection prevention and control precautions that are there to protect those workers whilst carrying out that vital role.

Counsel Inquiry: So the significance of PPE for the sector, then, this underscores the importance of that.

And then my second question was, in terms of how the guidance communicated these, the phrase “end of life”, and you also raise “exceptional circumstances”, which is another phrase, do you think that there should be a very clear prescriptive definition of what is meant by that, or should there be examples of what may constitute those definitions, so that there can be a risk assessment? Do you have any views on how that could have worked more appropriately?

Ms Helen Wildbore: Well, I think it’s going to be different for every person, and I think we have to – and this is why blanket rules never work – we have to take into account the person and their individual circumstances, their individual needs, but also their choices and what they want. And again, family and friends can be really important in supporting that person to make those decisions, but also, if the person has already lost consciousness or doesn’t have capacity around making those decisions for themselves, family and friends become really important in making sure that those previous wishes have been respected.

And I think embedding last year of life, we have to take advantage of being outside of a crisis, what we can learn from this pandemic, and embed that good practice now before we hit another crisis point at some point in the future. Which may not be another pandemic; it could be anything around the corner in terms of an outbreak of flu or whatever it is. Embed that good practice now, and talk to people, engage with people, get that guidance now as good as it can be, whether that includes things like examples – I mean, we’ve got some terrible examples from the pandemic to share with practitioners around what bad looks like but also what good looks like. We have to learn those lessons now, so that we’re ready for the next – (overspeaking) –

Counsel Inquiry: And stakeholder engagement is crucial to that?

Ms Helen Wildbore: Absolutely.

Counsel Inquiry: I have one final topic, please, before I move on to some final reflections, which is DNACPR decisions, please.

If we can have back on screen, please, the survey at INQ000273449, this time at page 15.

And again, if I may, I’m going to read some of the quotes here:

“It was explained to me that NHS was too busy to cope during the pandemic so decisions were made to not actively keep someone alive if their age and condition meant the outcome would not be in the NHS’s interests.”

Another one states:

“Coerced to comply.”

Another one states:

“Given my mother’s emaciated state, [resuscitation] would have broken her ribs. We agreed it would not be in her best interests to attempt it. However, what later became clear was that DNRs were being used as a shorthand for ‘do not treat’. This was my mother’s experience. The hospital put her on the palliative pathway within 2 days of her hospitalisation against our wishes … I had to go through the CoP to get my mother discharged home, where she lived another 14 months.”

And you explain in your statement at paragraph 235 that:

“Respecting individual autonomy, facilitating open and honest communication, and involving designated representatives in the decision-making process are essential to prevent inappropriate or coerced implementation of DNACPR decisions.”

How important are those principles going forwards for the future?

Ms Helen Wildbore: Yeah, absolutely. I think the practice that we saw, the poor practice that we saw around do not attempt resuscitation, again, a completely unacceptable response, and should never have been allowed to happen. It’s an example of how existing laws fell by the wayside in response to the pandemic.

Counsel Inquiry: And can I just ask, were there a handful of examples that your organisations were receiving or was this more widespread than just one or two examples?

Ms Helen Wildbore: Luckily for us, we weren’t overwhelmed with examples directly to our advice service, but we did get them, and when people came through with them, what the overwhelming sense of that was the fear. The fear that if this has been made, this decision has been made about my relative without my relative knowing, without me knowing, what else is going on that we don’t know about when something as critical as this is being made without our consultation? And it just added to that feeling of complete powerlessness that relatives and friends were already feeling by being, you know, shut away and not involved as in, you know, not able to carry out their caring role and not involved in those conversations as they should be.

When we did the survey, obviously we saw that it was much more widespread, and other organisations have also attested to how widespread it was. And it’s hugely concerning that something so important as that was – which, you know, has legal rights and duties attached to it, that that just fell away, and we saw poor practice coming back in that made people feel that their lives were worth less. It devalued the lives of older people, disabled people, and made them feel that they were dispensable.

Counsel Inquiry: And then just my final question, please, which is to ask you to reflect upon the evidence that you’ve given, and aside from anything that we’ve already been through, is there a particular lesson or recommendation you would ask this Inquiry considers, please?

Ms Helen Wildbore: Yes. So I would have talked about our rights to care supporter because that’s an absolutely fundamental change that came out of the pandemic that we know has been a problem before the pandemic as well, but we’ve already touched on that.

Lady Hallett: We’ve touched on that.

Ms Helen Wildbore: So I will say that I think human rights provides a vital safety net which is more important in times of crisis. It is – I mean, our sort of understanding of human rights and our human rights laws today came from crisis. They were written after World War II, and they provide those basic minimums, and that safety net, as standards below which no one should fall.

And they also provide a very practical tool as a framework to help us to make decisions, and our response to the pandemic should have focused on – started from the point of human rights and those minimum standards, and we should have used the framework that human rights gave us. And if we had done that, many of the problems that we came – we saw coming out of the pandemic could have been avoided, in terms of blanket policies and the degrading treatment that we’ve talked about.

And my recommendation, what I want to see for the future, is for human rights laws being used as the bedrock for a response in a future pandemic, and using that framework, and those basic standards, so that no one ever falls below that. And that means mandatory training for health and care staff, not just on how the laws work, but everyday practice.

I used to provide that training, I was at the British Institute of Human Rights training care workers, social workers, health workers, on how to do that. And when you train them on the law, but also how it applies to their every day, you can see those lightbulb moments happening where they see that this is actually a really practical tool that can help them make the really difficult decisions they have to make every day, but it gives them a legal hook for that and is values based and picks up on many of the reasons that they went into those jobs in the first place: because they want to treat people with dignity and respect and ensure that no one is ever left in degrading conditions, et cetera.

And so that’s my plea for that training to be mandatory.

Ms Paisley: Thank you, that’s all my questions.

Lady Hallett: That completes our questions for you. Thank you very much indeed, Ms Wildbore. You’re obviously a very passionate advocate for your cause, and a very good one.

It must have been extraordinary distressing for you and your team, some of the calls that you had to receive, so thank you for – to you and your team for all the work that you did to try to support people at a really desperate time.

The Witness: Thank you.

Lady Hallett: And thank you for your help with the Inquiry.

Very well, I shall return at 1.45.

(12.41 pm)

(The Short Adjournment)

(1.45 pm)

Lady Hallett: Ms Hands.

Ms Hands: My Lady, good afternoon. May I please call Francesca Humi.

Ms Francesca Humi

MS FRANCESCA HUMI (affirmed).

Questions From Counsel to the Inquiry

Ms Hands: Ms Humi, good afternoon. You are here today to give evidence on behalf of the Frontline Migrant Health Workers Group, or if I may, FMHWG for short.

You have produced a statement for the Inquiry which can be found at INQ000474919. And that statement is co-signed by the other organisations that make up FMHWG.

So is it right that that consists of two trade unions and a group of community organisations known collectively as Kanlungan?

Ms Francesca Humi: Yes, correct.

Counsel Inquiry: And that you are an affiliate member of that group?

Ms Francesca Humi: Correct.

Counsel Inquiry: And FMHWG represents precarious workers, including in adult social care, such as migrant workers, individuals on visas attached to their employment, low-paid and undocumented, and the majority of people that you represent are from an ethnic minority background; is that right?

Ms Francesca Humi: Yes.

Counsel Inquiry: Is it right that you represent people across all of the nations of the UK?

Ms Francesca Humi: Yes.

Counsel Inquiry: So any evidence you give today, is that reflective of individual experiences across the UK?

Ms Francesca Humi: Yes.

Counsel Inquiry: By way of background, if we may start with some of the data for the adult social care sector at the start of the pandemic. And you have provided some statistics at paragraph 25 of your statement, and if I may just summarise those, it states that in 2019, 35% of care workers and 56% of homecare workers were on zero-hour contracts; one quarter of the national care sector workforce were from ethnic minority backgrounds; and 82% of social care workers were women. Is it fair to say, therefore, that a significant proportion of those working in adult social care could fall within the groups that you represent?

Ms Francesca Humi: Yes.

Counsel Inquiry: Now, the experiences of precarious Filipino migrants during the pandemic were summarised in a Kanlungan report as follows:

“While the UK is celebrating care workers and key workers as heroes, the workforce of informally employed migrant carers has remained invisible.”

So is that an accurate summary of how this group felt during the pandemic?

Ms Francesca Humi: Yes, and that’s because of the visas that they were on. Like you mentioned, they were sponsored by specific employers, sometimes on a health and social care worker visa but also a lot of our members were brought to the UK on an Overseas Domestic Worker’s visa which is a form of visa that ties an individual domestic worker to their employer who brings them to the UK, and the nature of that work is happening within a household, within a domestic setting, which means that the way their work is happening is invisible and has very little public visibility.

On top of that, the nature of the work that they’re doing, so care work, which ranges from, you know, administering medication, cooking meals if they’re not – if patients aren’t able to cook meals for themselves, or, for example, you know, doing personal hygiene, helping them bathe. That is all work that is not celebrated in the UK, and is not – and does not receive a lot of solidarity from the general public. And so that, combined with the visa conditions, including some of our members who were undocumented combined with being from an ethnic minority that is not officially counted on the census in the UK, Filipino is counted as “Asian other” on the census, which means that the community isn’t counted, and that any disproportionate impact of a pandemic or deaths from a pandemic can’t really be quantified that easily through national statistics.

All of those things combined meant that the community was highly invisibilised.

Counsel Inquiry: Thank you. Do you think that that complex kind of web was understood by policy – by decision makers who were making policy and guidance during the pandemic?

Ms Francesca Humi: No, I don’t think so. I think the problem is that, in general, decision makers really fail to fully understand the breadth of the adult social care sector, and fail to understand and acknowledge that, for example, domestic workers, which are part of the domiciliary care workforce, are actually a vital part of the caring workforce and perform work that is required because people want to be able to receive care within their households, within their homes, when their relatives or loved ones can’t provide it themselves, and really fail to see that there was a whole chunk of the workforce that was operating on a more informal basis, meaning without formal contracts, sometimes being paid cash-in-hand, sometimes being paid as low as £2 an hour, and without any of that proper support from the state or even from employers who sometimes didn’t even recognise themselves as employers.

And I think government also failed to really recognise how immigration policy was directly negatively impacting health outcomes for both patients and also for the workers who were providing that frontline care.

Counsel Inquiry: Thank you. And we’re going to return to some of those topics that you’ve just mentioned there, but how can we ensure, do you think, that that does not happen in a future pandemic?

Ms Francesca Humi: Yeah, so in the case of migrant domestic workers, it wasn’t always this bad. Before 1998 there was a much better visa, which allowed domestic workers to apply for regularisation and to renew their visa and then eventually to get indefinite leave to remain and to sponsor their family to join.

The current visa doesn’t allow them to do that. That pushes people into exploitative work, once they become undocumented, and that leads to very poor working conditions and then poor health outcomes for the people they’re caring for, because people aren’t able to work with the adequate support and the adequate tools necessary.

Counsel Inquiry: Sorry, if I may just stop you there, I think my question was more – and, please, it’s my mistake in the way I asked the question, but what I meant was, how can we ensure that their voices are heard in decision making and by policymakers in a future pandemic?

Ms Francesca Humi: I think actually, firstly, acknowledging that these communities exist and that they are doing this really important frontline work, and reaching out to community organisations and resourcing those community organisations for their time, engaging with trade unions that represent organisations. I think there’s a really strong contrast between the experiences of workers who were members of UVW and IWGB who were able to collectively bargain and unionise in specific care homes versus the experience of domestic workers who work for individual employers and then don’t have that bargaining tool.

So, certainly a strengthening of workers’ rights in general.

And I think that really actually accepting that migrant workers are part of the workforce and should be granted equal workers’ rights in the workplace with their British counterparts.

Counsel Inquiry: Moving on, then, to the topic of access to sick pay or alternatives like employment benefits to allow staff to self-isolate during the Covid pandemic if they had suspected or confirmed Covid-19. You’ve alluded to, in your evidence already, around most migrant workers or a lot of them being on visas with perhaps no recourse to public funds or perhaps even an informal employment contract. So what kind of barriers did your members face in accessing any financial support for self-isolation during the pandemic?

Ms Francesca Humi: Yeah. So there’s the case of Bella, who is a care worker and is a member of UVW, and she talks about how the Statutory Sick Pay entitlement that she received was not enough; it was below her hourly pay, and that hourly pay was already quite low. So on top of that, if you’ve got Statutory Sick Pay that doesn’t actually afford people the opportunity to rest and recover from being sick, then your choice is: do you keep working through your illness, or – and, you know, earn at least at minimum wage, or do you take time off and then risk not being able to put food on the table?

And she talks powerfully about how that choice was really, really difficult to make.

And I’d say, you know, at Kanlungan we represented workers who were working for private households but also in care homes who didn’t necessarily have that Statutory Sick Pay, and what I’ve found really striking from hearing about those two experiences is that actually people who had Statutory Sick Pay and people who didn’t have any kind of sick pay entitlement had very similar experiences of feeling like they couldn’t afford to actually go on sick leave. They couldn’t afford to stop working because of that lack of adequate sick pay and because of all of the costs associated to being a migrant in this country.

Counsel Inquiry: And I think one of those examples is included in your statement of – from Camila, who did not have any contractual sick pay.

If we could have your statement on screen, please.

It’s INQ000474919, page 53, paragraph 166. Thank you.

And:

“She recalled [that] ‘some people would say, “I feel sick, I don’t know if it’s covid or not but I have to pay my bills. With covid or not I have to come to work”. Some people said, “I can’t do the test, I don’t care, I need to pay the bills, that’s it”.’ She explained that the home was not ‘really trying to find out if people were sick’, as the reality was that they needed staff to come to work as they could not afford the higher agency rates paid for cover staff.”

So did you hear examples of people going to work with Covid-19 symptoms, or returning to work earlier than they might otherwise have done, perhaps due to their own personal circumstances, or due to staff shortages?

Ms Francesca Humi: Yes. People felt that they couldn’t take the sick leave that they really needed in order to recover. They felt they had to keep going because they knew that there were massive shortages within the care homes and that if they didn’t return to work then, you know, who would be able to cover their shifts?

But I recall having a phone call with a Kanlungan member and we – she called me because I was supporting her with her immigration status, and she told me that she was working as a carer for a private household but that she was feeling really sick, and on the phone call I could hear her coughing and struggling to breathe and she said, “I can’t take the time off because I have to work tomorrow because I need to be able to pay, you know, for – I need to save money so that I can send remittances back home. I need to save money so that I can renew my visa.”

And I really had to, kind of, talk her out of going to work and saying, you know, “If we can order a test to your house, if we can get you groceries, if we can get you medication, that would cover you for at least a week, will you promise me that you wouldn’t go to work and that you’ll isolate and just rest and take care of yourself?”

And she agreed and we were able to deliver that support, like that care package to her house, but if, you know, I hadn’t been there to speak to her, she would have gone to work and continued to work and, you know, care workers understand the risk that that brings but when you’re trying to decide between, you know, having food on the table and supporting family back home potentially, versus not working, like, it’s a really, really difficult decision to make and they weren’t being supported by their employers either to take that time off.

You know, that responsibility is also on the employer to be giving people sick pay especially if they’re expecting personal care work during a pandemic. It’s normal that your carer might get sick.

Counsel Inquiry: I think another topic that you’ve explained was affected during the pandemic, in particular due to what you describe as chronic understaffing is work allocation and changes to individual’s responsibility.

So if we could have your statement on screen again, please, INQ000474919, page 16, paragraph 42. You say this:

“Outsourced workers, typically working through agencies, were frequently relied on to fill the gaps when pre-existing staffing shortages worsened during the pandemic. It was widely reported that they had to take on increased workloads and job variations without training or consultation, including, for example, the provision of medication to care home residents …”

Are you able to help us with what impact that had, that that change of responsibility and work allocation on staff, and also on residents’ care, if you know?

Ms Francesca Humi: So this meant that care workers in care homes were being asked to do work that was outside of their remit, outside of their qualifications or training, and that the risk was being passed on to the least well paid and to the most already exploited part of that workforce within the care home. So again, Bella, who is a UVW member talks about being told by the nurses that, you know, well, if you’re already going to go and do personal hygiene for this patient, then you might as well be giving the medication because, you know, the care home had clearly made an assessment that some staff were okay to expose to higher risk, as a way of safeguarding the rest of the staff from exposure to Covid.

And we spoke to another care worker, Lorena, who was a member of the Filipino Domestic Workers Association and she experienced the same thing of being told by the nurses, “Here’s the medication, you go into that room and you give it because I don’t want to go near that patient because we think that they have Covid.”

I can’t necessarily speak to the impact that that had on patients but I, from speaking to those workers, they did not feel good about that and also there’s a fear of, you know, what – the responsibility that they’re being given, and also, if you’re going to be asked to do work that is above, you know, your current duties or your roles and responsibilities, then you also need to be paid at a higher level if you’re going to be taking on more responsibility, and that clearly didn’t happen.

Counsel Inquiry: And did they report to you whether they received any additional training to carry out those responsibilities?

Ms Francesca Humi: No, none of the – as far as I can recall, none of people that we have spoken to in the context of Module 6 received further training, and actually, on the contrary, we spoke to several workers who told us that they at the very beginning requested training, wanted to understand more about measures to prevent the spread of Covid-19, and asked, you know, care homes or their employers, you know, “What would be the specific plan to stop the spread of the virus?” And they were refused and that training did not take place.

Counsel Inquiry: And to your knowledge did that continue or was that training provided but later on in the pandemic?

Ms Francesca Humi: I’m not sure.

Counsel Inquiry: Okay.

You’ve briefly touched on it there, but you had referenced in your statement, as well, that you had understood from some of your members that they had been disproportionately allocated to areas with a high risk of infection in care homes. Are you able to get an idea as to how widespread that was amongst your members?

Ms Francesca Humi: Across our members at Kanlungan it really felt like the whole community was being put on the front line and our evidence from Module 3 also attests to that, for the healthcare sector. And one of our members, who was based in a Kent care home, was systematically allocated to high-risk patients. She was a nurse in a care home and she was systematically being allocated to high-risk patients to, you know, Covid-prone patients. But I think it’s also that it’s about the allocation but it’s also about the nature of the work. If you are a domiciliary carer or a domestic worker and you’re going to people’s houses then the nature of your work is going to expose you at a disproportionate rate, especially if you’re not living in with your employer, and you have multiple employers, and you’re taking public transportation to go to your different patients’ homes, then that is increasing the amount of exposure that you could be facing with every job that you have.

Counsel Inquiry: And you have provided some examples in your statement of the impact that this had on the mental health and wellbeing of some of your members.

And if we could have on screen, please, INQ000474919, page 29, paragraph 78.

This is coming back to Camila. And she reported that she’d been working every day on a 12-hour shift having usually worked three days a week, and she said:

“My mental health was not all right. I wanted to have a break from the care sector and I didn’t feel safe”.

Every day she got home from work exhausted but had to immediately wash her uniform and get in the shower each day to protect her family.

Other members who have been included in your statement have reported feeling in constant fear of falling sick with Covid, and some of the other issues that we’ve already discussed around the fear of not being able to go to work.

Was there mental health support for your members that were working in adult social care?

Ms Francesca Humi: So Kanlungan took it upon itself to provide that mental health support, and when I started working there in 2020, we were just starting to have programmes to support Filipino frontline workers in Tagalog, so one of the national languages of the Philippines, and we thought that it was so important for workers to have a safe space away from their employer to talk about what was going on at work, to process grief, and to get basic mental health provision, because, you know, firstly, it’s very difficult to get mental health support through the NHS, and on top of that, for workers who are undocumented they couldn’t access that mental health support through the NHS anyway.

But, you know, there were some cases where maybe their employers were able to provide it. I know that the NHS opened up a, like, phone line with Filipino language speakers available, but the uptake was very, very low because people were so concerned that if they talked about how difficult their working conditions were, if they talked about how they were being bullied or, you know, systematically allocated to Covid wards or Covid patients by their manager that it would get back to them and that there would be negative consequences for their work, and then therefore their visa, because, you know, their right to work also controls their right to be in the UK.

Counsel Inquiry: And do you have any suggestions as to how that could be improved if there were a future pandemic to ensure that they did feel confident coming forward?

Ms Francesca Humi: I think something that would be really important is a firewall. So a mechanism through which, you know, the NHS guarantees patient confidentiality with regards to both employers but also with data sharing with the Home Office because people worry that if they present themselves to the NHS and they’re undocumented that they’re also going to be reported to the Home Office and detained and then deported. And similarly, that there are ways of safely reporting what is going on at work without that fear of immigration enforcement.

You know, the impact of immigration policy cannot be overstated on how it impacts migrant workers in all aspects of their life, including mental health.

Lady Hallett: I’m sorry to interrupt, I thought that – in M3, I thought I heard something about there being some provision whereby data would not be shared with the Home Office. Have I misremembered?

Ms Francesca Humi: I think – so the basic mechanism of charging in the NHS, so – through which patients who haven’t paid the international health surcharge are charged 150% in order to access the NHS, that basic level of data sharing is still in place because each hospital or NHS trust will have an overseas team that assesses patients about whether or not they need to pay that surcharge or to pay that 150% –

Lady Hallett: I thought the surcharge was lifted for all Covid patients?

Ms Francesca Humi: It was, but then it wasn’t lifted for long-term – like secondary – what’s classified as secondary care. So, for example, if you have Long Covid, then that would the surcharge would still apply. And the vac – it was lifted for the – for vaccine access as well, but there was such a level of distrust amongst undocumented community members that, you know, they didn’t feel like they could safely get the vaccine with the NHS because there was still that fear that they might be reported.

Lady Hallett: That I understand, the level of distrust, but what I was just trying to get at was what was actually in place and what wasn’t.

Ms Francesca Humi: I can’t speak to that because I can’t remember off the top of my head, but I know that for Module 4 we submitted quite a lot of evidence on that, so that is what –

Lady Hallett: I will check the evidence. Thank you.

Ms Francesca Humi: Yeah.

Ms Hands: Thank you.

So one of the other topics that you have addressed in your statement, which the Inquiry has received lots of evidence about already, and that’s around the restricting staff movement between care homes, and in your statement – we don’t need it on screen for the moment, thank you – you said that:

“… the control measures put in place … often failed to appreciate how common it was for care workers to have more than one workplace. This meant that care workers frequently travelled between care homes on public transport and were unwittingly able to carry the virus from one care home to another. One interviewee noted that the phrase that was used at this time was ‘the carers are the carriers’.”

Would it be right to infer from that evidence that many of your members were not able to follow the guidance on restricting staff movement?

Ms Francesca Humi: Yes. And for a lot of cases with our members, that guidance wouldn’t have applied to them anyway if they were working for, like, individual households.

I also think it’s really important, like – that framing, like, needs to be pushed back on because it is – if the sector is pursuing profit over patient safety and over staff safety, then they’re going to be making decisions that prioritise profit. So, for example, not providing enough sick pay, not providing people with PPE, not providing people with like testing and tracing.

And so it’s really – it’s the for-profit care sector that is the carrier of the disease. It is not the workers. Because they are being submitted to their working conditions and working for a for-profit care sector pushes profits to be prioritised over care and over safety.

Counsel Inquiry: Did your organisation or the others that make up FMHWG take any action to raise the issues that your members were having with complying with the guidance?

Ms Francesca Humi: I can’t speak off the top of my head for IWGB and UVW, but at Kanlungan we engaged with the Hackney Civil Society and voluntary sector meetings that they were organising with Hackney – North East London – sorry, the North East London NHS Trust, and we also engaged with the Greater London Authority. We met with Sadiq Khan and we also gave evidence with the London Assembly about the impact of Covid in general on the community.

But it was very – we also submitted evidence – I can’t remember exactly what the – what the title of it was, but I think it was in 2021 the government called for submissions and evidence on racial disparities and racial inequalities in the UK, and we submitted evidence to that report to highlight the impact of Covid on the community.

Counsel Inquiry: Was any of that particularly in regard to restrictions on staff movement that you can recall?

Ms Francesca Humi: It – not as – I can’t recall right now.

Counsel Inquiry: No, that’s no problem.

It has been suggested to the Inquiry by Matt Hancock that one potential way to improve staff restriction in future could be for two care homes who may currently employ people part-time to instead take fewer people to work full time, whilst also allowing someone in a care home on a zero-hours contract to do another role somewhere else if there weren’t any hours coming from the care home.

Do you think that would be practical or even possible for your members?

Ms Francesca Humi: I don’t think so, because – because of the way that the immigration system works, where people are being sponsored by a specific agency or a specific care home, and because of the overrepresentation of migrant carers within the care sector, I think that could be very, very complicated, actually, to put that into practice.

But also, I think the priority would be for people to have better pay and better working conditions and, as part of that, better sick pay. Not just this consolidation which, you know, I just – yeah, I can’t speak to how that would really work in practice.

Counsel Inquiry: Thank you.

We’ve briefly touched on the topic around training for clinical care and additional responsibilities that some of your members were asked to take on. And I want to briefly ask you about training on following and implementing IPC measures and the use of PPE, either from employers or the NHS or perhaps even voluntary organisations. So are you aware of there being any training on those topics for members that were working in care homes?

Ms Francesca Humi: No, I’m not and, in fact, a lot of our members, both UVW and Kanlungan, had to make their own PPE because they weren’t getting access to the right kind of PPE at the time, or enough PPE.

Counsel Inquiry: Sorry, I was just asking about the training for the moment.

Ms Francesca Humi: Oh, yeah.

Counsel Inquiry: Training on the use of PPE, donning and doffing, but also following IPC measures. Were you aware of training for those topics?

Ms Francesca Humi: No, not as far as I’m aware.

Counsel Inquiry: And what about for domiciliary carers? Were you aware of any training for them?

Ms Francesca Humi: No.

Counsel Inquiry: Do you think it would be helpful to have training perhaps outside of a pandemic on those topics to prepare for a future pandemic?

Ms Francesca Humi: Yes, definitely. But I would question how that would be possible, given the current care sector is so fragmented and it’s, you know, it’s private companies, private care homes, who then employ agency staff and there’s a level of fragmentation and privatisation that means that, you know, I don’t know how it would be possible to get that staff training equally delivered and across the whole sector in the same way that, you know, if there was some kind of NHS training for nurses, for example, that could be much easier to deliver because you have one solid workforce that then can receive the same quality of training.

Counsel Inquiry: A slightly different topic now, if I may, and that’s just around guidance that was issued by the government and public health bodies. Was it available in a range of languages from the outset?

Ms Francesca Humi: No. It was available in some languages but Kanlungan had to lobby and push for Filipino to be one of the languages that they systematically translated the guidance in.

Counsel Inquiry: Do you know when that started?

Ms Francesca Humi: Um, I think it would have been in either spring or summer 2020. Because we were already seeing the high death rates in the community and Kanlungan was doing a community death monitoring project because we felt that the deaths that we were experiencing in the community weren’t being properly accounted for, and so that was around the time that we realised: okay, the community is being disproportionately impacted by Covid-19 because of the frontline nature of their work, and part of that is – part of that was because of working conditions and immigration policy but part of that was also lack of resources in community languages.

Counsel Inquiry: And we’ll return to that topic in a moment.

If I may just ask you about the adult social care risk reduction framework, which the Inquiry has heard about, which was produced by the Department of Health and Social Care, and published in June 2020, and that was intended for use in all social care settings or social care interventions and was guidance for employers on how to support workers who were more vulnerable to infection or adverse outcomes from Covid-19, including due to ethnicity. So were you aware or were your members aware of the existence of the framework?

Ms Francesca Humi: No, and I think that’s quite damning, actually, that we – UVW, IWGB and Kanlungan represent a very wide range of care workers across different settings and across different workplaces and in all of the consultation and community engagement that we did at the time, but also that we’ve done in the context of this Inquiry, it didn’t come up once.

Counsel Inquiry: How do you think awareness could have been improved for that sort of initiative?

Ms Francesca Humi: It’s a good question. I think working with unions and working with community organisations that have that inbuilt trust with their members would be a very powerful way of making sure that that message is being delivered, but I just, again, like, because of the nature of how fragmented the care sector is, you know, a worker might be getting training with one of their employers, with one of the agencies, or one of the care homes but then is that – are they receiving the same message or the message in the same way with their other employer? So I think going through unions and community organisations would be really key.

Counsel Inquiry: And in general, do you think that the increased risk to Covid-19 for individuals from ethnic minority backgrounds who work in the care sector was properly recognised in the guidance and in local actions that were taken to protect staff and workers?

Ms Francesca Humi: No, I think in general it was not, it was not adequately recognised, and I think the recognition that, you know, our community members were getting in the media, for example, or even through, like, policies that were – that some of the policies that were taken up was really because as, you know, speaking as a member of the Filipino community, we were pushing and pushing and pushing and trying to raise the alarm in every way that we could.

Counsel Inquiry: You touched briefly, a moment ago, on some of your members’ experiences of access to PPE. And you’ve included some of those examples in your statement.

So if we may have on screen, please, INQ000474919, page 49, paragraph 145. And this is, again, Camila’s experience of working at a care home where she says:

“I used a machine to laminate. I then got some plastic – elastic, sorry – from one of my leggings, as at that time we were not allowed to buy anything. So I put it around my head. And I had to help my colleagues with this – I had to use the laminator. Later I improved this with putting some foam around the head.”

Then at paragraph 146, she recalled that they had to use plastic shoe protectors for their hair, and that the sanitiser gel that they were given burnt their hands with how much they were being asked to use it.

And then at paragraph 147, she reports that they were eventually provided with masks, that they were given one single-use surgical face mask for each 12-hour shift, and she and Victoria recalled that they were supposed to change their masks regularly but were unable to do so because of shortages, and that many workers had similar experiences.

So were those kind of experiences widespread amongst your members?

Ms Francesca Humi: Yes. So members of the Filipino Domestic Workers Association, which is now the United Domestic Workers Association, made their own face masks. One member taught herself how to make face masks by looking at, by watching YouTube videos and getting the supplies, and made about 50 face masks for members. At Kanlungan we distributed face masks to members and they would have been part of the, like, care packages that we were giving to members that were isolating.

And also, not just for people having to make their own PPE or source their own PPE, but in some cases workers were reprimanded for wearing PPE in their places of work, so one Kanlungan member as early, I think, of January or February when Covid started to be gaining international attention in the media, got very – was very, very anxious about it and sourced her own face masks, and came to work, and was told by her manager to take it off because it would scare the patients.

And I mean, I can’t imagine being, you know, you’re trying to protect yourself, you’re trying to protect your patients, and you’re told by management that – essentially that you’re doing the wrong thing. And we heard a lot of similar evidence of, yeah, people having to source their own and then either being reprimanded or being told not to wear it or, yeah, having to make their own out of inadequate materials.

Counsel Inquiry: And was that the same across domiciliary care and care homes and amongst those that were – employed and outsourced agency workers? Were you hearing the same issues from all of those areas?

Ms Francesca Humi: Yes. So especially for domiciliary carers, their employers – again, because I think a lot of these employers didn’t really consider themselves to be employers, so they didn’t think of themselves as having the normal responsibilities towards a worker that other employers would have, so they sometimes wouldn’t source PPE for their workers. Or, again, if you have – if you’re working across multiple households and multiple employers, then it’s also easier for the employer to pass the buck and be like: well, you know, if you’re doing more shifts with this employer, then maybe they should be the one sourcing it. Or, you know: this isn’t – you’re not actually a worker, this isn’t that kind of arrangement so I’m not going to provide it for you.

But, also, we heard cases where employers were willing to provide PPE but weren’t able to source it because they were having to buy it at the shops like everyone else. There was no system for them to, you know, get priority access because they were employing a care worker.

Counsel Inquiry: And another area where you have described problems that your members had was around access to Covid-19 testing.

Ms Francesca Humi: Mm.

Counsel Inquiry: And you’ve described it in your statement as a general unavailability, which forced the group’s members to seek out public testing facilities.

But what you have also explained in your statement is that there was some fear amongst some of your members around registering the test results or taking the test at all.

So, first of all, when did access to Covid-19 testing improve for some of your members working in care homes and in domiciliary care?

Ms Francesca Humi: I can’t say for certain but I would, like, hazard a guess that it was probably once that first big wave and lockdown – of lockdown was over, but maybe we could check the evidence and see if there’s anything specifically about that.

Counsel Inquiry: Were you aware of individuals or employers choosing not to take a test for fear of what we have already discussed around registering the results or that it could be positive and not – therefore not being able to attend work?

Ms Francesca Humi: Yes. People were scared of testing because of what – because of that, but also they were scared of registering because it was on the NHS website, and they were scared of giving their name to the NHS.

You know, some of our members had been undocumented for five, ten years, with very little contact with state institutions, and then on top of that you’re dealing with, like, the stress and the fear of the pandemic, and then you’re being told that: now actually you can trust this institution, that, you know, you’ve been told previously would share information with the Home Office, but now you should register and give your address and give your name so that you can get a test at home.

So we would often assist people with ordering the tests on their behalf so that, you know, that risk was [allayed] and we tried to make it as clear as possible, you know, that they were not gathering that information. And that information, as far as I’m aware, was not passed on for immigration enforcement.

Counsel Inquiry: Thank you.

Your statement and evidence has highlighted some of the immense work undertaken by the organisations that make up FMHWG to support its members, and you’ve summarised some of that work in your statement as well.

Are you able to provide us with an example of some of the support that maybe each organisation provided that really made a meaningful difference to the community?

Ms Francesca Humi: So, speaking first for Kanlungan, I’d say that the biggest work that we undertook was organising pop-up vaccination clinics for our community members, and we did that in partnership with Hackney Council. And that was genuinely, you know, life-saving work, because people who previously thought that they wouldn’t be able to access the vaccine – and especially for people who were working in the care sector and who’d been told that if they didn’t get the vaccine that they wouldn’t be able to work, that, you know, they’d have to provide proof of vaccination in order to keep working, people were really scared of – you know, basically the choice was: well, not get vaccinated and then lose your job, or get vaccinated and risk being reported to the Home Office and then detained and deported.

And so having that vaccination clinic meant that people were able to safely access the vaccine. We had one person who came all the way from Scotland so that he could be vaccinated.

But we also did a lot of immigration support and campaigning, and we really pushed for all undocumented people to be regularised, to be granted status so that they would be able to access the healthcare system equally and on an equal basis to any other person in the country. And we also did a lot of firefighting around issues around regularisation and some, sort of, fraudulent people claiming that, you know, you could apply for amnesty if you just paid £5,000 and then that would get you your visa, because they were taking advantage of the fact that the government had labelled it a vaccine amnesty for undocumented migrants, which then led to a lot of confusion because that was taken as, like, amnesty in terms of your immigration status.

So, yes, I would say that that was the biggest work we were doing.

For IWGB and UVW, I know they were able to unionise staff in care homes, and through that they were able to actually get better working conditions and better contracts and pay for their members. And I believe that IWGB was also involved in a judicial review, but I can’t remember it off the top of my head.

Counsel Inquiry: That’s no problem. Thank you, that’s very helpful.

There are just two more topics I wish to cover with you. The first one is around workforce deaths in the care sector. Now, you’ve briefly touched on this already, and how your organisation forms the view that it was difficult to count the numbers, and that perhaps the true mortality rate wasn’t known or wasn’t being reported. And I think you’ve said in your statement that it must have been significantly higher than recorded.

Can I ask you what informs that belief?

Ms Francesca Humi: So the way that we were monitoring the number of deaths amongst Filipino migrants in the UK was by searching on the news, including local news, looking at NHS trust websites to see when they were announcing staff deaths and if they disclosed the ethnicity of the person. We also scoured Facebook groups and other forms of social media and then whenever we had doubt, we would try to contact a relative and try to get that confirmation.

That is an actually flawed process and there were certainly community members who died that we weren’t able to count, and also because, you know, for community members who were undocumented, then their deaths wouldn’t have been reported and if they weren’t being shared on Facebook groups or if people in the community didn’t come to us to ask for support, so we were sometimes contacted with – by family members, actually, in the Philippines, asking to cover funeral costs, and –

Lady Hallett: Take a drink. Take your time.

Ms Francesca Humi: You know, we were being …

Lady Hallett: Deep breaths.

Ms Francesca Humi: We were being contacted because they didn’t have anyone else to turn to, and many came forward, but certainly others didn’t, and that would have slipped through the cracks.

And on top of that, it wasn’t data that the government was actively collecting because that would have been very damaging for them. But, you know, we were able to get access to some data and some statistics that told us that in May of 2020, 22% of all Covid-19-related deaths amongst NHS nurses were Filipino, despite Filipinos making up 3.8% of the NHS nursing workforce, so that’s a really disproportionate impact. And then that same research from the Health Science Journal, which I’m just going to read so I don’t get it wrong, they found that 83% of ethnic minority health and care worker deaths were migrants and 36% of those were from the Philippines, which is huge.

Ms Hands: Yes.

Ms Humi, would you support improvement to the collection and quality of data on ethnicity of the adult social care workforce including migrant health care workers in future?

Ms Francesca Humi: I think yes, Kanlungan would support that, but I also – you know, that is not the only solution. Because if people who are on precarious visas continue to be exposed to disproportionate risk, you know, even if you’ve got great data about it and you can count those deaths, it’s not going to actually prevent those deaths happening in the first place.

Counsel Inquiry: And the final topic that I’d like to ask you about is around a mandatory register of the adult social care workforce, for England. In regards to where it is mandatory in Wales and Scotland, to your knowledge did that cause any problems for your members who are, perhaps, undocumented migrant workers?

Ms Francesca Humi: I don’t know if the register would have even – if that process would have even been able to contact them and, you know, actually register them. So I’m really not sure.

Counsel Inquiry: Would you have any concerns about it potentially deterring people from joining the profession from the backgrounds of the people that you represent, if there were a mandatory workforce register in England?

Ms Francesca Humi: Yes, it would, because if people who are currently undocumented or have really precarious immigration status had to register, then I would imagine that that would prevent a lot of people from entering the care sector.

And also, it – like, on paper it’s a good initiative and it’s a good idea and I think, you know, care should be regulated in a way that improves health outcomes for both patients and workers, but the reality is that people hire undocumented people or people with limited leave to remain or precarious immigration status because they know that then they won’t have to pay them minimum wage.

Like I said, there are people that I worked with who were being paid, you know, £2 an hour, or living in and therefore being on call constantly. And so part of the appeal of hiring someone who has a precarious immigration status is knowing that they have very little ability to push back and to fight for their rights. That if they’re working for an individual household, there’s limited bargaining and unionising power. And also in terms of pay, that people can get away with paying people very, very little, because they take advantage of that situation.

And so creating that register, I really wonder what that would do for people who maybe want to be – who don’t want to be paying people more or maybe can’t afford to do that, and actually are relying on our community members very much.

Counsel Inquiry: You may feel that you’ve already answered it, but do you have any suggestions for how some of those barriers and issues that you’ve just identified could perhaps be overcome to support people to join such a register?

Ms Francesca Humi: I mean, it’s always going to come down to immigration policy, and so actually facilitating regularisation for all people, going to a pre-1998 overseas domestic worker visa so that people can actually continue to renew their visa and then be regularised.

You know, the government has announced scrapping the Health and Social Care Worker visa, which, you know, I’m not sure – isn’t going to improve the working conditions of people working in the sector right now. But this system of tying individual workers to their employers and, you know, that – and that being a way of controlling the worker as well, just has to stop. And that would be a key way of actually improving the working conditions and improving the – just people’s human rights and dignity and their ability to thrive in this country.

Counsel Inquiry: You have provided a list of recommendations in your statement, for which the Inquiry is grateful, and obviously we’ve already discussed some today. Are there any others that you wish to highlight now?

Ms Francesca Humi: I mean, we haven’t – I haven’t touched on this explicitly, but the no recourse to public funds condition needs to be scrapped, because actually one of the reasons why Statutory Sick Pay is so inadequate is because people who are on visas in the UK can’t access other public funds. So if you were to develop a long-term disability and you wanted to access benefits to, you know, support your life through, yeah, welfare support, when you’re actually not eligible for that, and support for Long Covid falls in that category.

Lady Hallett: I think maybe going beyond the scope here.

Ms Hands: Yes.

Are there any others?

Ms Francesca Humi: The group is pushing for a national care system similar to the NHS as a way of actually creating a more cohesive and equal workforce.

Ms Hands: Thank you, Ms Humi.

My Lady, those are all the questions for Ms Humi.

Lady Hallett: Thank you very much indeed for your help, Ms Humi, and for the help that, obviously, you supplied to your members during the pandemic. I hope you haven’t found it too distressing.

The Witness: No, that’s okay.

Lady Hallett: But it’s been really helpful and I’m very grateful to you for coming along today and, obviously, for the material in your witness statement. And don’t worry if, as I often do, on the Tube on the way home you realise something, we’ll take into account what’s in your written witness statement. So thank you very much.

The Witness: Thank you.

Lady Hallett: I think it’s probably best if I rise now for our afternoon break, albeit a bit early, because of the next witness.

Ms Hands: Grateful, my Lady.

Lady Hallett: I shall return at 2.55.

(2.41 pm)

(A short break)

(2.56 pm)

Lady Hallett: Ms Cecil.

Ms Cecil: Indeed, my Lady. May I please call Joanne Sansome.

Ms Joanne Sansome

MS JOANNE SANSOME (affirmed).

Lady Hallett: Ms Sansome, thank you so much for coming over. I gather you’ve flown in specially today to join us.

The Witness: Yes.

Lady Hallett: And thank you for the help you gave us for the impact film, too. I was watching it again earlier today. So thank you for coming along and thank you for what you’ve done so far.

The Witness: Thank you.

Lady Hallett: Ms Cecil.

Questions From Counsel to the Inquiry

Ms Cecil: Thank you.

Ms Sansome, you are here today to provide further evidence in relation to your experiences during the pandemic.

And if I may begin, you describe yourself as a person with a disability; and what condition do you have?

Ms Joanne Sansome: I have cerebral palsy.

Counsel Inquiry: Thank you, and in terms of your background, you explain that in 2016 you complete your Master’s at Queen’s University, Belfast, exploring the participation of disabled people within public and political life.

Ms Joanne Sansome: Yes.

Counsel Inquiry: And since – well, since that and indeed before then, you worked to further awareness and understanding of disability rights. In that capacity, you are an active member of the Disability Research of Independent Living and Learning, otherwise known as DRILL?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And the National Advisory Group of Northern Ireland, and you continue to be a member of the Northern Ireland Social Care Council Participation Partnership, along with a variety of other advisory roles that I won’t go through now –

Ms Joanne Sansome: Yes.

Counsel Inquiry: – but they’re all in your statement.

In that capacity, you’ve also helpfully provided to the Inquiry a witness statement on behalf of Disability Action Northern Ireland. That, of course, speaks to the wider impact of the pandemic.

Ms Joanne Sansome: Yes.

Counsel Inquiry: And in due course – of course, my Lady has already seen that statement, and it will be published, but today we’re here to concentrate on one aspect of that statement, which is the impact of the pandemic on you and your experiences.

In addition to the impact film that my Lady has referenced, you have also contributed to the Inquiry’s record for this module in Every Story Matters.

Ms Joanne Sansome: That’s right.

Counsel Inquiry: Thank you. If I can begin, then, by focusing upon the aspects of social care that you received during the pandemic, firstly, may I start by asking what type of accommodation did you live in and –

Ms Joanne Sansome: I live in supported housing, in south Belfast. It’s 24-hour support. And it’s domiciliary care, but it’s supported 24/7. And there’s 22 people that live in the building, and the accommodation ranges from self-contained apartments to one-bedroom en suite, and shared communal areas.

Counsel Inquiry: My understanding is that you have one of those apartments within that building?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And in terms of domiciliary care, you have care to support your personal needs –

Ms Joanne Sansome: Yes.

Counsel Inquiry: – is that right?

Can I take you back, then, to March of 2020, and the outset of the restrictions that came into place, into force. In the impact film for Module 2C you state that, for you, the pandemic started on that day, 15 March, and that day was your last day in society. What did you mean by that?

Ms Joanne Sansome: Well, that day, when I got up, I had no – no clue of what was ahead of me, and I was going shopping with my dad, which was my normal for – for my food shop. And on the way to the store, it came on the news. And me and my dad always went for a cappuccino after we did the grocery shop, and – and whenever we were in the café, I remember saying to my dad, “Oh, we may enjoy this, in case it’s our last cappuccino for a while.”

But I was joking.

And then, when we got back to my supported housing, the manager was waiting on me coming back and she said to me, “We’re going into lockdown.”

And I was like, “What does that mean?”

And she said, “Oh, it means that you won’t be able to go out and no one will be able to come in.”

Counsel Inquiry: How did that make you feel?

Ms Joanne Sansome: I was kind of in shock. I didn’t really know what to think. And I said to her, “But will my dad still be able to come? Because he – I have food intolerances, and he does most of my cooking and freezes it for me just to heat.”

And she said, “Oh, yes, your dad will be your designated Covid supplier for however long.”

And I said to her, “What does that mean?”

And she said, “Oh, he’ll be able to bring you stuff but he won’t be able to, like, be with you.”

And I said to her, “How long will that be for?”

And she said, “We don’t know yet.”

And so dad went home, and I thought it will only be for maybe a few days, a couple of weeks or something like that. And it was my birthday on 27 March, and it still wasn’t sorted. And I was, like: is anyone allowed to come for my birthday?

And at the beginning, I had to pick a day for my dad to come, as my Covid supplier. And I jokingly picked a Friday because I knew my birthday was on the Friday, that – because it was close. And so that day my dad put in – put my presents into my flat, but I had to go and sit in the bathroom if he was in my living room, or outside if it was a nice day, while he was in my flat putting stuff away. And I used to call them “fabulous food Fridays”. That’s what it became known as during my lockdown period, which was – how long? – 700-plus days. And I only know that because I kept a diary.

So, yeah, it was long.

Counsel Inquiry: Just picking up on your Fridays, those were the days that your dad visited –

Ms Joanne Sansome: Yes.

Counsel Inquiry: – as effectively your weekly permitted essential supplier?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And each Friday he would bring treats?

Ms Joanne Sansome: Yes.

Counsel Inquiry: Baked items from him and your mum?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And I believe that became known more widely as “fabulous Fridays” because of the treats; is that right?

Ms Joanne Sansome: Yes, because he made treats for all the care staff too, and things. I guess it was their way of showing appreciation and helping in some way but it was just weird, it was very weird.

And as time went on, and restrictions didn’t ease, the support building started to allow people that were normally office workers within the support service to come in to have – do cleaning and have coffee with us, and I don’t mean this to sound bad, but part of me resented it because I was like, if they can come in with a mask, why can’t my mum and dad? So yes, it was just very – it didn’t make sense. It didn’t make sense.

Counsel Inquiry: So, effectively, office workers were coming in to have chats and provide company, but that was at a point when the restrictions meant your mum and dad were not able to visit –

Ms Joanne Sansome: Yeah.

Counsel Inquiry: – and see you?

Ms Joanne Sansome: Even though they were on furlough.

Counsel Inquiry: Just turning to your dad and picking up on what you’ve just explained in relation to him being your permitted essential supplier, he also, in addition to providing treats and, obviously, seeing you, was involved in cleaning your apartment; is that right?

Ms Joanne Sansome: Yes.

Counsel Inquiry: He sorted out the laundry exchanges for dirty and clean clothes?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And also brought other weekly supplies and organised those for you.

Ms Joanne Sansome: (Witness nodded)

Counsel Inquiry: How important was it to you that your dad could continue to assist you in those ways?

Ms Joanne Sansome: It was very important because even though I wasn’t allowed to be in the same space as him, it was different from being on screen, and I guess it allowed me to keep some sort of normality, because I was still getting the same food and things like that that you wouldn’t normally think about.

Like, he was able to tell me how my mum was, how my brothers were, without a whole host of people being on screen along with us if we were on a family Zoom call or, so yeah, even though we weren’t in the same space, it still allowed me to have a bit of a connection, I guess.

Counsel Inquiry: There’s still some level of personal contact –

Ms Joanne Sansome: Yeah.

Counsel Inquiry: – that was – you were able to have, even if you were, as you explained, sat in a bathroom while he was sat in your living room?

Ms Joanne Sansome: Yeah, and sometimes my mum phoned me while I was in the bathroom, if dad was Hoovering or whatever, and it was – I can’t explain it, it was just very surreal, if I think back on how long it lasted for too, 700 days and more is a long time. I kind of stopped counting after the 700.

Counsel Inquiry: That is a very long time. Can I ask you about the domiciliary care package that you had. Because in addition to your dad supporting you, you received care within your apartment?

Ms Joanne Sansome: Yes.

Counsel Inquiry: What impact did the lockdown and the restrictions and the pandemic generally have on those services?

Ms Joanne Sansome: It had a lot of impact at the very beginning, especially, because staff were getting sick and because there was a shortage of PPE at the very beginning too, and it was so scary because we were being told to keep social distance and whatever, but a lot of my own calls are of very close contact in nature, so whenever they had no PPE or they were wearing cloth PPE, that you were being told wasn’t – wasn’t effective, in the media, that was really frightening.

I guess I was lucky in a way because of my ties with Queen’s, I was able to reach out to the Covid team at Queen’s and they got us some PPE alongside another organisation that made the cloth ones as well. So – but that was definitely the most probably scary time, because it was just at the beginning, and all you were hearing on the news was people dying and yeah, it was scary.

Counsel Inquiry: When you say Queen’s, that’s the Covid-19 team at Queen’s University in Belfast, isn’t it?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And it’s – in fact, the supported housing accommodation was finding it difficult to get PPE, there was a shortage, and you effectively made those contacts to secure some?

Ms Joanne Sansome: Yes.

Counsel Inquiry: The Inquiry has also heard evidence about staff shortages during this time. Was that a problem in your supported accommodation?

Ms Joanne Sansome: Yes, there was one day in particular, I remember that there was only two staff on the whole day for all 22 of us. And they did their best, and it was crazy. At that time I just kept thinking about my friends in other situations that lived in their own homes but needed care, and they weren’t getting any care. Like, I know some people that were stuck in bed for days at the beginning because of the shortages, and again, things that able-bodied people would take for granted, things like partially sighted or people that couldn’t read their meal, they weren’t getting stuff like that read to them anymore, and it wasn’t seen as something essential. And I know of one person that had – they had – both him and his partner are blind, and they have three children and one of their children had a rash and they phoned their GP and the GP told them to take a photo of the rash, two blind people, take a photograph of the rash, so it was stuff like that because they didn’t have any support worker at that time to take the photo for them, so things like that need to be considered.

Counsel Inquiry: Absolutely, and we’ve heard, Ms Sansome, other evidence in the Inquiry of things that were considered non-essential in terms of life-sustaining aspects of care were, certainly by some local authorities, unable to fulfil at various points.

Ms Joanne Sansome: Yeah.

Counsel Inquiry: So that is certainly evidence that the Inquiry has heard more broadly, as well.

In terms of the impact upon you, obviously you received personal care of different types. Am I right that that affected things such as your ability to have showers, to clean, to do all of those things for yourself, as well?

Ms Joanne Sansome: Yes, yes, there was days you didn’t always – you weren’t always guaranteed a shower or your full care, allotted care time for that day. And the staff really, really did their best, but sometimes it wasn’t possible. So definitely going forward, I know the pandemic was unprecedented and whatever at the time, but going forward, things like that need to be planned for how to mitigate those types of situations. And I’m not really sure what that would be, considering the hospitals were so crowded with Covid itself, and so I’m not sure, but that needs to be something that’s co-produced and co-created and co-designed with people that use the services.

Counsel Inquiry: And that is one of your primary themes of your witness statement, is the need for proper co-production –

Ms Joanne Sansome: Yes.

Counsel Inquiry: – with people who have disabilities and their carers?

Ms Joanne Sansome: Yes, because we understand what we need. We live – we live it. Other people might see a specific element of it but they don’t live the whole thing, so they – you can’t legislate for what you don’t know or only understand in part.

So, to get the holistic picture, you need a collective voice. And that’s what co-production and deliberative democracy has the potential and opportunity to deliver, and that needs to be – come out strong in the report, in my opinion.

Counsel Inquiry: Thank you.

May I turn to pick up on the impact of the visiting restrictions. You’ve touched upon them already in relation to not being able to have your family to visit, but what you do describe in your statement is that your laptop became your digital window to the world in that regard.

Ms Joanne Sansome: Yes.

Counsel Inquiry: How successful was that to communicate with family and friends?

Ms Joanne Sansome: Sometimes it was fantastic. I had so much positive experience out of being able to use my laptop independently.

I always wanted to go to Crip Camp in America. It’s a camp for disabled activists. And it’s run in California every year. And for one reason or another I was never able to go, and during the lockdown they ran a virtual Crip Camp and I went every day. And we had a ball. It was fantastic. And I’ve still kept in touch with so many of the activists that I met during that summer. And we also met with Barack Obama as well, so it was just a real good experience that came out of Covid, I guess.

So it’s important that I say that too. There were some good things and that was one of them. It brought the disability community very much closer together, as a global community, fighting for equality and rights that we had tried before but never succeeded. But the technology that emerged due to Covid allowed for it.

And sadly, it has fell away a little bit and – well, more than a little bit – since the world has got back to so-called normal.

Sadly, despite all the promises of everywhere building back better, I don’t think we have, in relation to, certainly, the community of people with disabilities. I think our legislations and our rights haven’t been updated in any way significant. In actual fact I think there’s been a huge rollback with our rights and the benefits and the welfare reforms. So I don’t think they’re living up to that statement, “Build Back Better”, and that’s sad, because that was – that rolled off their tongue every day during the pandemic. And there’s no evidence of it, in my opinion.

Counsel Inquiry: Ms Sansome, if I can just pick up on one of the things that you’ve just mentioned, and that’s really in relation to some of the positive experiences that you had during Covid.

You’ve explained about the camp you were able to attend and, indeed, the meeting with Barack Obama. You were also able, during that time, to complete a chapter for one of your books?

Ms Joanne Sansome: Yes.

Counsel Inquiry: Another one of your books, The Routledge Handbook of Disability Activism. It won the Taylor & Francis most Outstanding Handbook Award –

Ms Joanne Sansome: Yes.

Counsel Inquiry: – is that right? And you were also, as I understand it, able to continue your work with the Social Care Council Participation Partnership and the Co-production Strategy Working Group; is that right?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And those were all things that were being facilitated by Zoom calls and remote technology and your ability to use your laptop independently?

Ms Joanne Sansome: Yes. And sadly, not every disabled person can use their laptop and their technologies independently.

Counsel Inquiry: And you set out within your witness statement some of the problems that those people faced?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And certainly the Inquiry will have regard to – (overspeaking) –

Ms Joanne Sansome: Because there was at the time of Covid, the pandemic, there was projects to help alleviate that, but they’ve since lost funding. So that’s sad because it’s still very much needed and that should never have been lost. That was one of the things that they should have kept.

Counsel Inquiry: Thank you. As I said at the outset, for you, because you are able to use that technology, it was one way of having visitors. It was one way of seeing your family and friends. Another way, as I understand it, in your supported accommodation, was by having people, when the restrictions were relaxed, able to visit in the outdoor spaces.

Ms Joanne Sansome: Yes.

Counsel Inquiry: How did that work? They’re obviously better than not having visits at all, but I know you raise a number of issues in relation to those.

Ms Joanne Sansome: Yes, our outdoor space – well, there’s a wee small courtyard in the very middle of the building, and – and it’s like a goldfish bowl, because there’s windows all around it, and it’s tiny. And then there’s the car park. So – so that is essentially our outdoor space.

And the car park is overlooked by other neighbouring apartments with balconies, and so you didn’t have the opportunity to have any private outdoor visits, really. If you had an outdoor visit, everyone joined in. It was like a community event. And even the balcony neighbours, as we called them, they would have, like, shouted over in the mornings and stuff, “How are you today?” Because the weather was so good, we were outside a lot, because that was our only way of seeing people, I guess, off screen.

So – and some people in my supported housing, it felt like they were trying to do – outdo Sir Captain Tom the amount they walked around the building and they were practising for the Paralympics because – but it was boredom, it was boredom with people as well.

Counsel Inquiry: And one of the things that you raise in your statement is that certainly in the future, people need to reflect on what took place in the pandemic and look at how you could facilitate better visits in terms of buildings functions.

Ms Joanne Sansome: Yes.

Counsel Inquiry: Later in the pandemic you are able to go home to your mum and dad’s for coffee in a socially distanced setting outside in the garden; is that right?

Ms Joanne Sansome: Yes, that was during the time when were allowed the bubble with another household. My bubbling had to be done outside because I was on the clinically extremely vulnerable list, and at that time I still didn’t know why I was on that list, because not all of my, even though we all had disabilities and we all lived in supported housing, not all of my neighbours were on that list. And it wasn’t clear ever why we were put on it and why we weren’t. And it wasn’t until lockdown lifted and I was able to start going back to my urology appointments that one of my urology doctors just, I said to him, on the first appointment, “Why was I on the clinically extremely vulnerable list when my other – some of my other neighbours weren’t and they have the same disability?”

And he said, “You were on it because of your bladder. You weren’t on it because of your disability.”

But that was never explained at the time, it was only afterwards.

So I guess in the future, they need to explain to people why exactly they’re on those lists or aren’t on those lists because whenever, particularly when the restrictions started to ease and the world started to go back, to normal, supposedly, that it was before and people like me that were on the clinical list were still being told to shield, that was very difficult. That was when I felt most, most isolated, and because all the, like, online technologies that I had used to cope during the lockdowns, they were all starting to become sporadic as well, and I felt like I was constantly having to remind people I’m still being told to shield. And that wasn’t, that really wasn’t a nice experience.

Counsel Inquiry: No, indeed. And you point to the February 2022 announcement, the Freedom Day, as it was billed, when it was announced that all of the remaining restrictions would then become government guidelines, and you pose the question: freedom for who, and at what cost? And is that the point at which things became particularly difficult?

Ms Joanne Sansome: Yes, because no one knew, and especially at that time I think, if I remember right, we were coming up to an election, and I guess the cynical side of me was like: oh, are they only doing this because they want to look good for the public, the general public? And so I was a bit hesitant, and but again, that’s because they always said, “We’re following the science” but they – you were never sure what was science and what was political spin.

Counsel Inquiry: And in terms of the phrase “Freedom Day”, did you consider it – and you’ve already answered this to a large degree – did you consider this was freedom for you?

Ms Joanne Sansome: No, no.

Counsel Inquiry: If I can now move to when your supported accommodation experienced an outbreak of Covid and in particular the Omicron period. We’re talking about later in 2021 moving into 2022, that Christmas and winter period.

You explain in your statement that your manager tested positive for Covid and as a consequence, your supported living building decided to enforce a ten-day lockdown –

Ms Joanne Sansome: Yes.

Counsel Inquiry: – effectively cancelling, in your words, Christmas?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And stop you going home.

Ms Joanne Sansome: Yes.

Counsel Inquiry: At the time the national restrictions did not require that. What action did you take?

Ms Joanne Sansome: I phoned the PHA, the Public Health Authority, and I told him, I forget his name, but it was a male, and I said to him “We’ve just been told that our building is going into a ten-day lockdown because our manager has tested positive for Covid and she was in the building.”

And he said, “Oh, well, you have to do whatever your support provider of your care is telling you to do.”

And I said to him, “But the restrictions for the general public is a lateral flow and if you don’t test positive, then you’re free to go out and whatever.”

And he said, “No, you have to do whatever your care provider is telling you”.

And so I ended the call, and I was angry.

Counsel Inquiry: Did you take any further action?

Ms Joanne Sansome: Yes. I – because of all, I guess, the campaigning and activism things that I’ve done, I knew some of MLAs at the time.

Counsel Inquiry: Just to pause you there for those that are following, that’s the ministers of the Legislative Assembly?

Ms Joanne Sansome: Members of the Legislative Assembly.

Counsel Inquiry: Assembly members.

Ms Joanne Sansome: So I phoned one of them and I said what was happening, and they said, “I’ll phone you back.”

And they phoned back about maybe 15 minutes later and they said, “You’re right, you’re a member of the public, and as long as you test negative on Christmas morning, you can go home.”

And I said to them, “Is that the same for everyone in the building?”

And they said, “Yes.” So, and they said, “And we’ve already notified your support staff of that.”

So on Christmas morning we all did the lateral flows.

Counsel Inquiry: And did you test negative?

Ms Joanne Sansome: Yes.

Counsel Inquiry: Did you go home?

Ms Joanne Sansome: Yes. But it was the worst wait for that one line because I don’t know how I would have felt if it had have been two lines, but I was one of the lucky ones because three other people tested positive on that morning. And they weren’t allowed to go home. But they lived on the other side of the building that had no shared communal spaces and only a bedroom with an en suite each and they weren’t even allowed out of their rooms because they tested positive, and they had Christmas dinner by themselves, because they weren’t even allowed to eat together in case they had different variants. So that’s how crazy it was. Even if you had it, you weren’t allowed to be with other people that had it on Christmas Day.

And even though I was allowed to go home, all I could think of when I was eating my Christmas dinner was those three people sitting in their rooms on their own. So it wasn’t nice.

Counsel Inquiry: Thank you.

If I can move to a slightly different topic, and it’s about the access that you had to medical care, and in the hospital. And you do explain within your witness statement the majority of your routine dental and hospital appointments were delayed or cancelled. What impacts can those delays or cancellations have on your conditions and your health?

Ms Joanne Sansome: They can have a lasting impact that you live with every day afterwards. For example, I have a jaw that clicks a lot. It’s a rare jaw condition, and it’s so rare that I get called into the Royal Victoria Hospital dentistry department a lot for the students to look at my jaw. And so – and that can lock at any time. And during the lockdown all dentists was cancelled, as you know, because they were the ones doing the Covid testing in the tents. And two of my wisdom teeth came up, and I know it might sound like, oh, it’s only wisdom teeth, but I was so worried at one point that – the impact that that might have on my jaw, because other wisdom teeth had come up in the past and I had had to get them out because of my jaw not having enough space in my mouth and stuff.

But thankfully, that was okay. But I also had ongoing urology appointments delayed quite significantly, and it can’t be proven but my bladder health has really rapidly deteriorated since then, and I can’t help but wonder, is that part of the reason? No one can give me a definitive answer to that, but urology appointments were cancelled because even specialists were sent to the Covid wards, and clinics and things were left as empty wards in hospitals to help out with the Covid wards.

I think, going forward, that there needs to be some distinction made that regular clinics and stuff can stay as long as they meet the required safety elements put in place, because I really truly believe that that was one of the detrimental things to my health and ongoing conditions. And I just think it was one of the worst things that happened in the pandemic, and we’re still living with, really, the NHS was kind of collapsing before the pandemic. Now, it has collapsed in my opinion. And they need – they really need to work at building it back because we can’t – all the way through Covid, it was “Save the NHS”, and now it’s “Oh, there’s no money to save the NHS.”

Counsel Inquiry: Can I ask you about one possible solution that you include within your witness statement, and you explain that you were the first resident of supported housing to be signed up for the Hospital at Home service?

Ms Joanne Sansome: Yes.

Counsel Inquiry: Can you briefly explain, what is the Hospital at Home service?

Ms Joanne Sansome: It’s a service that if you’re already a patient of district nursing or community nursing, that if your consultant can sign you off to go home, they – you go to A&E and they plan your treatment, and once that’s all in place, they sign you to go home with the Hospital at Home service coming out to give you your treatment.

And I’ve had two experiences of that now, and it’s a fantastic service. One of the times it allowed me to leave the hospital ten days earlier than what would have been the case otherwise. And for three days, while they were coming up with my plan, and my treatment plan, I was actually in A&E long stay for the whole 72 hours. So, as you can imagine, I was overjoyed to get home with Hospital at Home and I was even more overjoyed when it was such a good service.

And I got all my medical treatment with the nurses that – that I knew, and plus I was still able to use my normal domiciliary care package and be in my normal environment. And I healed quicker because of it, because it was with people that knew how to help me and support me.

Because quite often in hospitals, nurses aren’t used to dealing with people with extra, complex needs due to disability, and so it makes it harder, because you have – you’re not well, plus you have to, like, teach people how to look after you, while you’re not well. So the Hospital at Home is fantastic, in my experience.

Counsel Inquiry: Thank you. And in terms of your care review, obviously you have frequent care reviews. Normally undertaken face-to-face, but in the pandemic, it was undertaken, as I understand it, by telephone?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And you explain while you are able to use digital devices and technology –

Ms Joanne Sansome: Yeah.

Counsel Inquiry: – your care manager was not?

Ms Joanne Sansome: Yes.

Counsel Inquiry: She had difficulties – they had difficulties actually using the technology?

Ms Joanne Sansome: Yes.

Counsel Inquiry: What impact did that have on your care review and your plan?

Ms Joanne Sansome: Well, it wasn’t face-to-face, and – so she was relying solely on my voice and what I was telling her. And when they come out to do a review normally, they’re able to read your notes in your files, and they’re able to maybe see the condition in which you live, and just see any general signs of good care or neglect, either way. And over the telephone, that, in my opinion, that was a very missing element, and it could put people at risk, potentially.

I’m quite able to speak up and say if I’m not getting something that I should, but there’s other people that you heard, even just this morning, that would be afraid to speak in that regard. So face-to-face is definitely needed for that type of thing, even if it is online.

But all professionals in that area do need to be kept up to speed on modern technology. And it’s not good enough when they just assume that: oh, they’re a service user, they probably won’t be able to use it, so we don’t have to worry about learning it.

It should never be that, because we’re all different, and although some disabled people can’t use technology, there’s a lot that can, and – and specifically a lot of people with autism or neurological issues or disabilities, they actually like interfacing with the screen opposed to reality. So there is evidence out there that that works, that works for some people better than face-to-face.

Counsel Inquiry: In fact, I’m going to bring you on to a related topic in relation to some of your observations, and that’s your experiences of inspections in terms of the Regulation and Quality Improvement Authority. And you describe within your witness statement one inspection during the pandemic that was an in-person inspection.

Ms Joanne Sansome: Yes.

Counsel Inquiry: But they were not able to come into rooms to conduct private interviews. Instead, they met everybody in the open doorway of their rooms –

Ms Joanne Sansome: Yes.

Counsel Inquiry: – is that right? What impact did you see that having or could it have had?

Ms Joanne Sansome: Well, as I’ve said before in previous answers, our outdoor space was far from private, and so if you were having a private issue, you wouldn’t want to tell someone standing at your front door. And not just because the care provider could overhear, but because your neighbours could overhear private, confidential details about your personal experience and life.

And I think to mitigate that in the future, if you are able to use technology, they should say to you, “If there’s stuff today that you would have liked to have spoken about but didn’t, is it okay if we follow up with you over Zoom or something?”

But there was nothing like that. And although it was kind of good that they come out and did the face-to-face, because at least – one of the first questions she asked me, I’ll never forget it, was “We’re just out to check how you’re doing.” And I thought: they’re out to check if I’m still alive from Covid. Because it was at the, like, pretty much I think it was the first summer of the pandemic, anyway. So it was pretty early on.

Counsel Inquiry: Indeed, since then, you’ve had, most recently, in fact last week, an unannounced inspection visit; is that right?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And as a consequence of that, you’ve been able to compare those experiences?

Ms Joanne Sansome: Yes.

Counsel Inquiry: And on this occasion they were able to conduct private interviews, obviously not in – subject to the normal, the Covid restrictions?

Ms Joanne Sansome: Yes.

Counsel Inquiry: But they also gave everybody questionnaires to send back after the inspection?

Ms Joanne Sansome: Yes.

Counsel Inquiry: Is that something else that could be done within pandemic conditions to try to enable people to be able to speak freely?

Ms Joanne Sansome: Yes, yes.

And I also noticed, in comparison with other inspections, that this one was very general. Where before, in the past, they’ve always been very focused on an issue or a topic, and this one was general. And I think that was a good thing, because I think sometimes, if they’re too focused on a topic, they could potentially miss stuff if they’re only questioning people around a specific area, and so I thought the generalisation was good, because it allowed you to have a co-produced agenda with them. Maybe that’s not to –

Counsel Inquiry: Perhaps to give an opportunity to express things that are not within the topics they identify?

Ms Joanne Sansome: Yes, yes.

Counsel Inquiry: May I now turn to a distressing subject, and that’s in relation to the do not attempt cardiopulmonary resuscitation notices and letters that we’ve heard were disseminated during the pandemic to various individuals. You did not receive such a notice, did you?

Ms Joanne Sansome: Not that I’m aware of.

Counsel Inquiry: But you were at the time aware that others in similar positions to you had done so?

Ms Joanne Sansome: Yes.

Counsel Inquiry: How did that make you feel? What impact did that have on you?

Ms Joanne Sansome: I thought it was wrong, and – very wrong. And I was glad when the World Health Organization stepped in to correct it, but in that correction they come up with a points system which was, in effect, the same outcome, only it was less evident because people like me would have scored differently than an able-bodied person or – not just an able-bodied person, a healthy person. So technically we were still more susceptible to not being saved over a healthy – someone that was deemed healthy, and more, I suppose, societally worthy of saving their life. That’s what it felt like. So even though they’d done away with the do not resuscitate, that points system, in a way, was still a do not resuscitate, only invisible.

Counsel Inquiry: Were you concerned that such a notice would be – would apply to you, or that you’d receive a letter of that nature during the pandemic?

Ms Joanne Sansome: I always just hoped I wouldn’t have to go, I wouldn’t have to go to hospital in that regard. And I’m very thankful that I didn’t, because I did get Covid at one point, and I was very lucky because it only affected me that I had a sore throat. That was it. I wouldn’t have known that I had Covid, only I did a lateral flow for actually a urology appointment, when urology started to come back, and they phoned me and they said, “You’ve tested positive for Covid.”

And I laughed. I thought they were winding me up. They were like, “No, you have. You’ve tested positive. You need to isolate. We’ve already notified your care.”

And right enough, the next thing the carers were at the door and they were dressed like something out of Star Trek, Darth Vader.

But I can laugh about it now, but at the time I was like, “I feel okay, are you sure you haven’t mixed my results up with someone who is really sick? They could be spreading it.”

And they were like, “No, it’s definitely you.”

And so then, for maybe a day or two, I was thinking: I still don’t feel sick. But I kept waiting, thinking: well, they told me I have Covid. And I was still going to my online meetings and people were saying to me, “You don’t look like you have Covid.”

So it just highlighted to me that even though I was on the extremely vulnerable list, there was more – some people who were not – didn’t have any underlying health issues or disabilities, and Covid hit them harder. So – so, again, I would like to know – kind of, in the future, I would like for that list, maybe for the requirements of that list to be co-produced, because I know they were doing their best because it was unprecedented, and they didn’t know, so I’m not having a go at them in any way.

If anything, I’m glad that Robin Swann was our Health Minister at that time, because he stood up against a lot of legislative criticisms, and from within the Legislative Assembly itself as well as the general public, to safeguard us. And even though he grounded me for 700-plus days, I will always be thankful that he did stand up in the unknown. So we can’t kind of diss the legislators for legislating in the way that they did in the unknown. But that being said, I do hope that they learn from it, and co-produce and do things better if it ever happens again.

And that includes building designs and air purification and things like that.

Counsel Inquiry: Thank you.

Turning to a related but different topic, sadly, four of your neighbours in your supported accommodation passed away during the pandemic period when there were restrictions in place. These were not from Covid.

Ms Joanne Sansome: Yes.

Counsel Inquiry: But nonetheless obviously the restrictions in relation to the funeral proceedings applied.

Ms Joanne Sansome: Yes.

Counsel Inquiry: What impact did that have upon you and your ability to grieve your friends?

Ms Joanne Sansome: Well, we couldn’t obviously go. Before Covid, we all would have went to anyone’s funeral who passed away. That was kind of the done thing. And then Covid hit and we didn’t do that. And some of them were at the very beginning, so there wasn’t even the online service.

It was very strange, being handed, like, a card in memory of a person, and not having that same closure that you were used to, I guess. It still feels very surreal and – again, I guess that was unprecedented too, but that was one of the hardest things for people during the pandemic, that they couldn’t grieve in their normal process and way, and I guess that was never really addressed in any way, even as the lockdowns were – the restrictions were kind of lifted. It was just – gradually it went back to normal and services were live streamed.

Which was a nice thing, because, for example, one of my aunts in Australia died – not of Covid – and – after the pandemic. But unlike my other relatives who passed away in Australia, I was able to go to her funeral. So that was a nice thing to came out of Covid.

So I think we have to think about what was good that came out of Covid and what we need to keep as – because a lot of what I think we needed to keep is starting to disappear.

So, yeah.

Counsel Inquiry: Thank you.

And Ms Sansome, just finally, importantly, you’ve shared your experiences in a number of different forums, including obviously today at the Inquiry. What was the most important point that you sought to get across then and you seek to get across today?

Ms Joanne Sansome: I really think co-production and deliberative democracy is key to living up to that slogan of Building Back Better. And I think legislators have to get past the fear of it and embrace it, and for what it is: it’s an opportunity for everyone to be involved in the legislations that’s going to shape society and their daily lives. It’s an opportunity for everyone to have a voice, and everyone to be heard, and ensure that “nothing about us without us” becomes reality in all legislation, not just visibility legislation, because all legislation impacts disability.

We are intersectional of all communities, the disability community. So we need to be included in all legislations going forward. And that is a way to do it, because deliberative democracy, it draws on the statistical data of the census and ensures that there is a proper cross-representation of society, giving recommendations to the legislators. It doesn’t take over the role of legislators, it assists legislators and builds trust in the legislative process, and that is sadly lacking in today’s society and that is one way to build it and build a better society and live up to what they said, and build back better.

Ms Cecil: Thank you very much, Ms Sansome, I certainly think that’s taken on board in terms of co-production in relation to what you would say are lessons to be learned for future pandemics.

Thank you, my Lady. Those are the questions I have.

Lady Hallett: Thank you very much indeed, Ms Sansome. I think I can confidently say that no other witness to this Inquiry can say, “As a result of the pandemic I met a former president of the United States of America.” That’s a first. So I am glad at least something positive came out of it.

You have been an extraordinary witness, and I am delighted you were able to join us. Thank you so much for all your help and taking the trouble, with, obviously, your supporters to come over here today. I hope you feel it’s been worthwhile because I certainly do. So thank you very much indeed.

The Witness: Thank you. And if there’s anything further, I can do to assist …

Lady Hallett: Well, you’re obviously an extremely effective campaigner, so I’m sure that if anything else occurs to you, you’ll let us know too, but we’ll let you know.

The Witness: Yes, thank you.

Lady Hallett: And safe journey back to Belfast tonight, I gather.

The Witness: Thank you.

Lady Hallett: It must have been a very long day for you.

The Witness: Yes, I land back in Belfast at 11 tonight, so, yeah.

Lady Hallett: That’s not very good. I’m sorry it’s been such a long day for you.

The Witness: That’s okay. It’s been a really good experience.

Lady Hallett: Good. Delighted.

The Witness: Thank you.

Lady Hallett: And I hope we’ve looked – I’m sure, knowing how efficient the team are, I’m sure you’ve been looked after.

The Witness: Yes, they’ve been fantastic the whole way through –

Lady Hallett: Smashing.

The Witness: – so they have.

Lady Hallett: Thank you very much indeed.

I shall return at 10.00 tomorrow.

(3.59 pm)

(The hearing adjourned until 10.00 am the following day)