WATCH: Bereaved families give evidence to Covid-19 Inquiry

WATCH: Bereaved families give evidence to Covid-19 Inquiry

when she wasn’t, she would almost certainly beckon me in, say, just come on through. And I’d have to again explain that I couldn’t do that. Um, it was very hard. I mean, obviously, I was pleased to be able to see her in some way possible, but it just really wasn’t acceptable. I wasn’t able to give her the quality and amount of care that I’ve been used to and wanted to. And uh it was all always very distressing leaving her and her going back to her room. I don’t know how much you know there was no no regulation. I have no idea. I asked questions sometimes but again it was that I don’t want to be too pushy because they you know I phoned every morning to see if there were pod or garden slots and generally they were very good and if there were slots because it was a it was a large care home they let me in and I thought if I start pushing too much they’re going to stop that so again I held back
and throughout this period um how was your mother’s health well-being deteriorating without a doubt. Yes. Yeah. And certainly in terms of the in terms of the visiting guidance and the different restrictions that were put in place, you explained within your statement that there was a lot of confusion and there were often competing guidance issu um aspects of guidance either from national government or the local authority or indeed other organizations or the care home. Is that right?
That’s absolutely right. And and again it just added to my stress and trauma of the situation. you know, the one time in particular, I remember that we were in uh tier one as an area which said that visits could be allowed um but um our local public health deemed apparently they told me at the care home that visits um weren’t safe to continue and so they uh they followed the local advice and and stopped the visits. And if I can just then just pick up again on something that you were you mentioned briefly earlier in relation to obviously you weren’t able to know exactly what was going on or taking place in the care home in terms of visibility because you weren’t there.
Um but you had one concern about whether or not she was being taken to the communal areas and be and obtaining stimulation in that respect. How did that concern um come about? It came about via one Skype call in particular and it was it was um a Saturday afternoon and she was in bed which concerned me. I you know I didn’t know if there was a problem with her health. It turns out that there wasn’t. Um but they just hadn’t got her up that day. they were kind of I guess the staffing we know was often a problem and I think they were just taking it in turns a bit with residents that they um they got ready and and got up. But it really worried me that for someone in her position who relied totally on others. She she was losing her memory. She’d lost her mobility. She’d lost her family, it seemed, to her, and she was, you know, she was in her bed on a Saturday afternoon, mid to late afternoon. And I thought, I’ve no idea how often this might happen. And I didn’t even know if if on the days that she’d been got up, whether she’d been taken from her room in her chair to the lounge or not. So, I just I just don’t know. And again, they weren’t questions that I could often ask. It depended sometimes, you know, who was with her and and and when I felt I could, I’d say, “Is mom going to the lounge later or has she been to the lounge?” But again, it was a bit of a lottery as to what I could say or do. And you touch upon the impact of isolation upon those with dementia and Alzheimer’s within your statement
and certainly in due course. That’s what we’ll be hearing from Professor Banerjee, an expert in those matters. And of course also the every story matters um record which records which effectively um records the same sentiments. Um I just want to move on if I may to um immediately prior um to your mother contracting COVID within the home. But just before I do that just touching on an occasion when your mom needed external medical care
and how was that organized? Did you have any difficulties accessing that medical care? Not not really. Um I think the situation that you’re referring to there that um I I spoke um as I did when I phoned in the evenings obviously it would go through to a member of staff and and I was told that mom’s oxygen levels were very low and obviously I was hugely concerned about that and I knew from um an incident before lockdown where we’d had um the rapid response team out that they could do that and so I requested that they bring in the rapid response team and they did and they they put her on oxygen. Thank you. Um now I just want to turn to um so I say January later in January of 2021 when um your mom contracted COVID and you explained that she had no real symptoms of COVID and appeared asymptomatic. Is that right?
She did. I mean she was by this stage on the oxygen but she didn’t appear to be struggling with her breathing. There was no coughing. Nothing that suggested to me that she had COVID. It did seem asymptomatic. Yes. And were you able to see your mom initially following that diagnosis? No. No. Um and there came a point where you were aware that she was approaching her end of life and at that stage um were arrangements made for you to visit? There were arrangements about probably five, six or so days before her death. Her room, I think I said, was in the corner of a courtyard, a big open area, and I was told that I could go and see her through her bedroom window, through her patio doors. Um, and so I obviously leapt on that and I I took a a garden chair with me and hot this was January 2021 and hot drink and layers of clothing and my mobile phone and I went and sat outside her patio door for as long as I could until someone said, “You should leave now or it was dark and she wouldn’t have been able to see me anyway.” Um, but bizarrely I had to be on my own. I couldn’t take my husband or a friend with me. It was just me, despite I could see no reason, no logical reason why that would pose a threat to anyone. Um, but anyway, I I was I was able to do that. I I had my phone. They put a mobile phone in a black bin bag on my mom’s shoulder and I was able to talk to her. I did have conversations then. Um but um obviously she became more ill and in the last 48 hours of her life I was allowed end of life visits. I’m not sure why end of life had to mean those last hours. Why it couldn’t have been before? Um, it makes no sense to me who determines what is end of life and and and why can’t there be more dignity than having to speak to mom through a plastic bag. By the time I was allowed in um probably the first 24 hours I she was conscious, she was aware who I was, but she wasn’t communicating with me. She was non-verbal. Um, and then when I went in the next day, she was she was unconscious. So I just
I’m just going to ask you um a couple of questions if I may about those visits. You’ve explained you were only allowed to go on your own.
Yes.
Is that right? Your husband would often wait in the car outside for you.
Yes.
And in terms of those visits, you would also have to wear um PPE equipment. Is that right?
Yes.
And that would involve a face mask, an apron, and gloves.
Yes. Um, and in terms of her room, you also explain in your statement that that the lay the layout and how it looked changed.
It did.
And became more clinical.
It did.
Yes.
And how did you feel about that? How do you feel that impacted those visits with your mom? Again, it didn’t feel like a home, her home. Um, it felt more austere and unfriendly and intimidating to her, I think. Um, probably one of the worst times was after I’d been told she had COVID or had tested positive for COVID. Um, clearly she’d seen the changes to her room and clearly seen perhaps a difference in what staff were wearing and um, and she said to me on my nightly phone call, “Is this it?” And that’s the most awful conversation I’ve had to have. And obviously I I tried to reassure her. As I said right at the beginning, she’d been an incredibly strong and resilient woman throughout her life. Very powerful, very admirable, and um you know, very matterofactly is this it? But I couldn’t say yes, it is. You know, I think perhaps I was in denial a bit myself because she was asymptomatic and because, you know, she was she was so strong. I thought perhaps she could pull through it naively of course, but you hope for the best in these situations. Um, but it was very difficult and I think the change in the environment put that idea into her head too.
And in terms of your in terms of how you were able to visit, you were still socially distanced as I understand it. So you were still a meter or so away from her. Yes.
Um, at the end of her bed.
Yes. So again, it seems so cruel. I couldn’t be posing any kind of threat at that point. Um so as I said for 10 months even as she lay dying I could have no physical contact with her and you know I remember I remember when I lost my dad in 2010 and he was dying. I promised him that I would look after my mom and I just felt I’d let her down so badly. Um and that guilt just is with me always and with and certainly um you but you were there when she passed away with her. Yes.
And you stayed for a while after that as I understand it with her.
I did. Yeah. One of the nurses went to tell Mike who was in the car park what had happened and he was allowed to come around to the door to check on me. But he still wasn’t allowed to come into the room which again makes no sense to me.
It must have been an incredibly lonely experience for you.
It was distressing. And I just want to touch if I may then on to the funeral arrangements. You explained that it was really at this point that you were able to touch your mom again for the first time as part of those end of those end of life rituals and the curt and the care that was being um undertaken by the undertakers. Your mom had paid for a funeral plan herself. She’d set it all up. Um but they were unable to facilitate that and so you chose understandably um to to to move to a different um undertakers who could facilitate that.
Yes. Yes. And did that bring some level of small level of comfort to you?
Excuse me. Yes, it did. Ultimately, there was a lot of additional trauma that shouldn’t have been there really. But again, you know, I think funeral directors were following guidelines just as care homes were following guidelines. So, they were making their own decisions. There was no law to allow, you know, people to have the comfort and humanity of of of being with loved ones living or dead. Um, but it was a huge relief to me. Yes. To be able to find a provider and the original funeral home did actually help me in finding someone who would allow me to visit. And yes, I spent as much time as I could with my mom while I could,
of course. And then as you you describe then a a funeral taking place um in accordance with the restrictions at the time, socially distanced and
and all of those um restrictions in place. If I can may if I may turn on really to one aspect of um her legacy, if I may. um you’ve been since subsequently involved in the in quite a significant amount of campaigning work and that’s covered within your statement in some detail and also working with one dementia voice. Yes.
And one aspect that you are that you consider to be very important is about granting either a family member or a friend firstly within the pandemic it was key worker status.
Yes.
But more more broadly um now a legal right effectively. Absolutely. and it and you very and you’re a supporter of what’s called Gloria’s law. Yes. Would you like to tell us just a little bit about that? I know that’s important to you.
It’s absolutely critical to me, you know, um after my experience and and witnessing my mom’s deterioration through a screen. That didn’t have to happen. She could have had she could have had the comfort and love of a family member and uh she could have had my support continually with her health and well-being. And to have been denied that to me seems absolutely immoral um against all human rights I believe. And so um quite a shock to me. I did become a I I am a campaigner. Um you know I I didn’t choose activism. I was activated. I uh really really passionately believe in Gloria’s law which is the legal right to a care supporter and it absolutely has to be legal because we saw what happened with guidelines. Everyone uh approached them differently. They changed all the time. But to give someone legal status and that peace of mind and reassurance, I think is absolutely critical for a humane society.
Thank you very much for sharing your story with us. Um I have no further questions, my lady. You’ve become a very eloquent campaigner. So you may have missed your vocation, I think. Thank you very much indeed for helping the inquiry. I know it doesn’t help for me to say it, but you did keep your promise and you did look after her to the best of your ability. So um I don’t think I’ll forget the image of you sitting outside in January wrapped up in in English winter. Um um well British winter. I’m so sorry for what happened at the end, but try try to remember the positives of your life together and we shall investigate the negatives.
Thank you so much, my lady.
Thank you very much indeed.
Thank you. As I said earlier, really really it shouldn’t be care home managers and politicians deciding whether we can care for our loved ones. It really isn’t. I think there’ll be many people who um obviously remember the awful number of deaths during the pandemic but hadn’t really appreciated this particular point that you’ve made so eloquently. So thank you very much indeed.
Thank you my lady. My lady, the next witness is Mrs. Judith Kilby. Repeat after me, please. I do solemnly
I do solemnly
sincerely and truly sincerely and truly
declare and affirm declare and affirm
that the evidence I shall give
that the evidence I shall give
shall be the truth
should be the truth
the whole truth
the whole truth and nothing but the truth
and nothing but the truth
please
thank you very much for coming along to help us sorry we kept you waiting for a short time I hope you are warned and if any stage you need a break please just say I’m sure as young has told you but you may find it easier to get it over So, no liability. Could you start by giving us your full name, please?
Judith Kilby. And um you’ve provided a witness statement dated the 2nd of May, 2025. That’s atq614380. Yes. Um is it right that you have a background in nursing?
Yes, I do. Um, and you’ve worked in um nursing homes before. Nursing home and and care homes.
And care homes. And you’ve also worked as a business manager for a specialist care home group.
Yes, that’s correct.
So, it’s fair to say that you’re fairly knowledgeable and experienced in in the way that care homes operate
generally. Yes.
Um, but you’ve come today to talk about your personal experience. Is that right?
That’s right. Um and that’s in relation to um one particular care home in Scotland that your your dad was in um and sadly died in on the 10th of May 2020.
Yes. Um before we talk about um your dad’s time in the home um could you just tell us a little bit about your dad please about his his character, his sense of humor, what he liked to do?
He was a jordi. He had a great sense of humor as I think many of them do. Um he loved nature. He loved um the environment. He always stood up for people that he felt were mistreated. He taught all his children lots about nature and and you know we were hounded by what’s that bird when we went for a walk. He never had any peace. Um and he invested those interests into all of his grandchildren as well. He I never heard him say a bad word about anyone. He was a a sociable, happy person.
Is it right that he had eight grandchildren?
He had eight grandchildren. Yes. And he loved spending time with his family. Yes. Very much so. And he was very practical. He always wanted to help when he came to visit. So he was Yeah. very genuine person. Is it right that um your your dad was diagnosed with Alzheimer’s? Yeah. shortly a couple of years after my mom died. Um but that Alzheimer’s manifested just really in short-term memory loss. He never changed his personality or lost his sense of humor. Was always grateful. Um and wasn’t someone that would wonder. He you know he was still driving before he um went into the home after after the stroke.
Um and when you say it really just affected his short-term memory. Um, did he need constant reminding for example to take his medicine?
Yes. Latally at home we were having to ring up and and remind him and and you know plan meals for him and that kind of thing to make sure that he he looked after himself.
Um, you you mentioned that he was um still driving. He he he was fairly independent, was he? He was very independent. um loved getting out for drives in the countryside and yes so he he relied on his car because he lived in a small village and and that took him to all his activities. Um one thing in particular that he very much enjoyed doing is going to a place called healthy hearts. Is that right? Yes. Yes.
And is that somewhere where he would go and exercise and socialize? Yes. He had a stent put in many years ago and and that was part of the local health board offering which was cardiac rehabilitation. So he went for something like 15 years twice a week and he would do volleyball and aerobics. Did that Sorry to interrupt you.
Sorry. And that continued um up until he had that that stroke
and and was that very much um a support for him after your mother died? Yes, it was because she used to go sometimes with him and just take part in the exercises, but it was a a structure for him. You know, he he would mark his calendar because of his memory. He’d have a a red heart on each of the days that he went to Healthy Heart. So, his calendar always told him which day it was. Um, you mentioned that your your dad had a stroke. Was that in September 2018? Yes, it was.
And and you were with him at the time? Yes, I I’d spoken to him on the phone the night before and came off the phone and said to my husband, “I feel dads, there’s something wrong. He says he’s not depressed, but his voice is weak. It’s thready. I’m going to see him tomorrow.” So, I I was called down to see him. Found him confused and unstable on his feet and he had a stroke in front of me. So, I knew there was something happening and and I was right. And is it is it right that as a result of that he spent three weeks in hospital?
He did. Yes.
And it was after that that the decision was made that he should go into a care home.
Yes. He wouldn’t have managed at home immediately following the stroke. So the decision was made then.
Um could I ask you just to slow down a tiny bit?
Sorry, Mrs. Kilby. Thank you. So he went into a care home in Scotland. It was a small care home. Is that right? Yes. And um it was based in Scotland but had a head office in England.
It did. Yes. Um your dad made a full recovery from the stroke, didn’t he?
Completely.
And in January 2019, um you arranged for him to start attending Healthy Hearts again once a week. Is that right?
Yes. Because of the nature of the home, it was so small that he would be lucky if he’d walk 20 steps from one from A to B. and there wasn’t a garden per se. There was a little courtyard out the back. So, I felt that for his mental well-being and mobility, he needed to be doing some activity. So, felt that it was time to try it and spoke to healthy hearts and the home who agreed and but they the home couldn’t take him because they didn’t have the staff capacity.
So, the the home um was nearby Healthy Heart. It was but they weren’t able to to help that. So, so is it right that you did a a 100mile round trip to to
once a week? It wasn’t twice a week at that point. It was once a week and my and if I couldn’t do it because I was away with work, my husband kindly um would step in and and do that. So, we felt it was important to keep dad mobile and keep him in that environment.
And were you able to see any benefit in him attending?
Massively. He would he would forget where he was going and say, “Where where’s this place?” And as soon as he walked in, well, even before you walked in, you’d walk through the car park and he’d see a face he recognized and start chatting to them. And muscle memory was there when the music started. He knew what aerobics he was going to do to each particular piece of music. So, it was really beneficial for him. Yes.
Thank you, Mrs. Kilby. Um can we now move on please to um some of the um infection prevention control measures um at the home because it’s it’s right isn’t it that that you had some serious concerns about the measures that are in place there.
I didn’t feel that they were really understanding or set up to to do proper infection prevention and control.
Okay, we’re going to go through some of those concerns. M
um it’s right, isn’t it, that your dad’s birthday was on the 12th of March, 2020, and that’s the last time um you were able to see him in person? Yes. And on that day, did you take him out um to the countryside with some tea and and some cake?
We did. It was something my parents did often. They would take a flask and go out and and sit somewhere looking at nature. Um we made it very clear to the home that that’s what we were doing and ma um emphasized that we weren’t taking dad anywhere near people. We wouldn’t have taken him into a cafe or anything. Um because we were really concerned about the co situation. So that’s what we did. And and why did you feel the need to to tell the home where you were going and and the fact that you weren’t going to go near people? because we felt that they hadn’t quite grasped the enormity of what was coming and and having seen the images on TV in Spain and Italy in care homes, we were acutely aware of it and really wanted to hammer that point home.
And and when you said this to the manager, do you remember what the manager’s response was? I asked him about reducing footfall through the home and urged him to do so and was told we haven’t been told to lock down yet. When you got back um to the home um they had very kindly prepared some birthday cake. Is that right?
Yes.
Um and your dad blew out the candles and shared his cake with the other residents. Um were were they together in the same room when they did that? They were there were a few residents in the room but they all congregated. It was there were few numbers in the home. So they would congregate around a large dining table. So we didn’t see him having the cake with them but they they got him to blow out the candles and then they were taking the cake to the table for everyone to share. And I remember thinking at the time, I didn’t say anything to them at the time, but thinking this is maybe normal practice in the past, but this is you’re not aware of the CO issue. This shouldn’t be happening now.
Did did it appear to you that the staff understood what the potential risks were?
Not at that time. No.
Um, you say that there was some hand gel available at the care home?
Yes, there was.
Um, and visitors were encouraged to use that gel. Yes. Um
were there any other um measures in place that you could see?
Not that we could see at that time. No. Um and it’s right, isn’t it, that that day you you waited for him outside the toilet so you could remind him to wash his hands?
Yes, cuz he was mobile and independent in that way. Um but I wanted to make sure that he didn’t just wash his hands and just run them under the tap. I wanted to make sure he did it properly.
And was that something that he needed reminding do
not to wash his hands? No, but to to use the gel or to wash his hands thoroughly. Yes. Uh is it right that a week later um there was a review due um in regard to your father and and and you um suggested meeting remotely for that?
We actually said we wouldn’t come in for it because we didn’t want again emphasizing the footfall through the home. So we wouldn’t we wanted to do that remotely. Yes. and um the manager’s response was to meet in the conservatory instead which would avoid going into the home. What were your concerns with that?
We refused to do that because we said that although you’re we’re meeting in the conservatory, you’re meeting us and then you’re going back into the home which is the same as us to my mind going into the home. Um, can I ask you about the recruitment of staff, please? Um, in April 2020, um, is it right that, um, that you saw a notice, um, from, um, I think you say in your statement that it was public health Scotland, but could it have been the the local public health teams? Which statement? Sorry. In your witness statement, you refer to um a statement from Public Health Scotland about capacity and and offering staff support if needed. Um do you know if that that could have been from the local public health teams rather than public health? It may well have been. I certainly when I heard of them planning to bring staff in, I did find in in writing um something that said that to contact the local team or the team. I thought it was Public Health Scotland um who would help with staffing. And um is it right that you saw an advert from the care group um advertising for temporary staff?
Yes, they were advertising within their own network on Instagram advertising for temporary staff.
Um you say that they were asking particularly for school levers and shop assistants. Do
do you know why they were asking for those in particular?
Presumably because they were low paid and they would be available. Do you know if they took up the offer from the local public health teams for extra support for staffing?
I don’t know if he even approached them. And it’s right, isn’t it, that soon afterwards there were indeed some um new staff at the care home. Yes, there were several youngsters. Um when you say youngsters, I think in some cases they were teenage offspring of of the care staff.
Certainly of people that were associated with the home. Yes.
And and do you know what kind of jobs they were given? Were they given any um jobs relating to personal care? I was asked I I asked about this and asked if they would be given appropriate training and was told that they would be given suitable training for the tasks they had to complete. So I assumed it would include personal care. Um do you do you know what PPE they were given to wear?
I don’t think at that time anyone was wearing PPE. I I don’t think the guidance had come through at that point.
But is it right that you you at that point very concerned about their knowledge of PPE and IPC measures? I was. On the 18th of April 2020, the manager came in with symptoms. Is that right? Yes.
Um and and he thought that it was just a cold.
Yes.
Um and I think the next day he did a test. Um I think you say because he wanted to prove that it it was just a cold.
Yes, he did.
And and in fact the test came back positive. Is that right?
Yes.
Um do you know if there was any policy or protocol um in place at the time about what staff should do if they had symptoms? I don’t know what their own policies were. I think certainly there were staff that were isolating after that. So I think they they did stay away from work, but obviously he’d been in with what he thought was a cold um which proved to be CO. And on the 21st of April um you emailed the home to ask about testing of residents um and uh and staff uh and that’s because of the um recent Scottish guidance that had been issued.
Yes. Um and and can you tell us what your particular concern was? My concern was that as their head office was based in England that this they appeared to be following England centric guidance and I didn’t think they were very aware of what the local guidance was saying and I wanted to make sure that if there was testing available that they were aware of that because up until that point there hadn’t been testing for every resident. And did it change after that? I believe shortly after that there was people there the testing was for show people showing symptoms and very quickly after that pretty much everybody albeit not on the same day was showing symptoms and therefore tested but they were tested in batches of a couple of people at a time. Can I ask you about the isolation of of residents? Um,
there came a time, didn’t there, when your your dad was isolated. Um, and it was decided to isolate him in the lounge area. Um, whereas all of the other residents, I think, were isolated in their rooms. Um, can you tell us why it was decided that your dad would be isolated in the lounge?
I think because he was mobile and sociable. It was decided by the home along with my power of attorney siblings that isolating him in in inverted commas isolating in the lounge was the best thing for him. No attempt was made to isolate him in his room. Um and when you say an inverted commas isolating is that because um it was really um the hub of the building where staff would go um during their breaks and people would go in and out.
Yes. The two sides of the building were connected by the lounge. So to get from one half of the building to the other, everyone went through the lounge. So it literally was the hub of the building. So, you were concerned that your dad was at greater risk by being there. Um, do you remember what your manager’s response was to your concerns? His response was that, “Don’t worry, we have new guidance coming. I’ll send it to you to show the PPE that we’re we’re going to be using.” And reassured me that nobody would be allowed in the lounge without a mask. And was that um guidance saying that PPE should be worn for all sessional care? So that that was a mask, apron, and gloves that would start when entering a resident’s room and end when leaving.
Yes. And my my concern there was that what was a session in dad’s case, if he was being brought from his room upstairs, down the stairs, along the corridor, and into the lounge, where did the session start and end? And where did the PPE changing start and end? Do do you know if the care home had sufficient PPE to follow that guidance? I believe they did. And I know that in the early part of the pandemic um before lockdown, the manager actually traveled to south of to middle of England to get extra PPE from their head office as well. I think it was available in Scotland and they sourced their own. And um did your dad have any handwashing facilities in the lounge area?
No.
Um and your concern um is it right was that he would then be touching door handles and and things like that that staff and other people would be using?
Yes. because he would take himself to the toilet and touch things on the way and and if he wasn’t escorted to do that, how did anyone know that those things were clean? Um, is it right that the day that the guidance came out um your dad and several other residents started displaying symptoms?
Yes. And um your dad’s test came back positive on the 25th of April 2020. Yes. Along with four other residents.
Yes. Um is it right that the next day um you heard that staff were traveling um from the Midlands um to help out in in the home?
Yes. and and your concern about that was that they may be bringing COVID with them into the home.
They were coming from an area that was a hot spot at the time for CO and my concern was that there may be different viral strains. They another concern was that you weren’t allowed to travel those distances and you weren’t supposed to be moving people from one home to the other, let alone from one country to another and also concerned about the quarantining of those individuals and testing. And
did you raise those concerns?
I did.
What response did you get?
I was assured that they would be um appropriately quarantined and and tested.
And do you know if that happened? I don’t know for certain, but they were in the home within a couple of days. So, I I doubt very much that that happened.
And in terms of their uniforms, um is it right that um rather than wearing scrubs or uniforms that could be put through a hot wash, they were um wearing t-shirts, but otherwise just their own clothes.
Is that applied to all staff? I think the guidance came out about um bagging of uniforms and washing them on the premises in a hot wash, but they literally the home issued t-shirts and in some photographs they came down to people’s elbows. So, and they they wore their own trousers or or whatever as well. Um on the 27th of April, um you called the home. Um, and your your dad was COVID positive at this point. Is that right?
Yes.
And um you were told by a staff member that your dad was had had a lovely time playing in the lounge with balloons with some of the staff. Is that right?
Yes.
And why did that cause you concern? Well, obviously I wasn’t there and I wasn’t able to see, but the idea of a co sick person playing balloons in a lounge didn’t seem to make any sense to me on any level. I mean, they may have blown them up with a a machine. I don’t know, but it didn’t make any sense to me. And I was also concerned that if there were sufficient staff to play balloons in the lounge, why were those staff not being utilized to help isolate my father in his room? Um, which could easily have been done as there was an office next door. Um, and it’s right, isn’t it, that in the following days you also saw some photographs of your dad um, and staff members standing fairly close to him. Um, were they wearing PPE?
No, we were sent a photograph from a relative who went and visited through the window. Um, and it showed the staff member standing less than 2 feet from dad in a long sleeved shirt buttoned at the wrist, no apron, no mask, no gloves. And is it right that that you found out afterwards that that staff member in fact had a cough when he was looking after your
When I spoke to him after dad died, he said, “Well, actually, today’s the first day that I haven’t had a cough.” Um, your dad became a bit unsteady on his feet. Is that right?
He did. Yes. Um, and and started having to be accompanied to the toilet. They volunteered that they were now accompanying him to the toilet because he was unsteady. And that just screamed to me, why weren’t you doing that in the first place to make sure of the the hygiene and the infection control? And on the 1st of May, he started showing signs of poor balance, um decreased mobility, and labored breathing. Is that right?
Yes. Yes.
Um an ambulance was called on that day. Um, did they say that they were not minded to take him to hospital?
Yes, they did. Um, it was suggested that he have a sample taken to see if he had a an infection, a urine tract infection.
Yes. Um, and um, in fact, he had some antibiotics and he got a little bit better. Is that right?
That’s right. And um is it right that he was moved or on the 30th of April um the suggestion was made to move him into a a room downstairs. Um but your concerns about that was that that room had been previously um lived in by a resident who had died of COVID.
Yes.
And um who was going to be carrying out the cleaning of that room? The staff in the care home did the cleaning also. So they didn’t have a cleaner. I was concerned that if they moved dad to that room, everything would have to be cleaned as per the the guidance, which would have involved long floor to-seeiling curtains being cleaned thoroughly and furniture cleaned. I didn’t see how that was going to be done in the in the co circumstances. So the the cleaning was going to be done by the staff and is it is it right that that day four staff tested positive for COVID? Yes. Um along with um some further residents I think eight out of nine.
Yes. um you were sent some further photographs um of your dad
um and um you you were quite upset um by one in particular. Um do you remember the photograph I’m talking about where you turned to your husband and you and you said your dad was dying?
Yes. We, my husband and I had been for a walk and we got home and a message came through from my brother. Um, sent me a picture of dad taken through the window and I barely recognized him and I just took one look at it and turned to my husband and said, “Dad’s dying.” You you also received a video the following day.
Yes. How did he look in that? gray, disorientated. Dad was musical. He could recite long poems and he was trying to clap along to music and he couldn’t even coordinate his hands to clap. He was clearly to me clearly hypoxic and extremely unwell. Um, and it’s right, isn’t it, that in fact at 11:30 p.m. that day, um, he was very unwell with low oxygen sats and the manager called 999.
Yes. Um, they told him to call 111.
Mhm. They did. Sorry. Not Mhm. Yes.
Um, and and do you remember what the doctor said? The doctor said, “We don’t we don’t take COVID positive residents to hospital. Order the end of life pack.” And and and did it appear to you at the time that your dad was in need of a end of life pack? It appeared to me at the time that dad needed oxygen and support and I knew that he needed help if he was going to recover. Is it right that you yourself called 111? I did. I it was I think in in the end it was possibly 2:00 in the morning before I managed to speak to somebody. But I’d read in the press for a statement from the local medical director a week earlier saying that there was absolutely no barrier to care home residents with CO going into hospital and that they were sitting at 55% occupancy and there was absolutely no reason why they wouldn’t be admitted. So I knew that was the case and what I did was challenge why that statement was made because that wasn’t Scottish government guidance and it wasn’t local guidance. And the doctor on 111 was extremely aggressive and said to me, “So you want me to admit your father now?” And I said, “No, I want my dad to be given the treatment that he needs when he needs it.” And he reluctantly then agreed to send the CO team in the following day. And is it right that when the the CO team came to the home um and the consultant saw your dad um he he agreed that your dad was not at the end of his life?
Yes. It was a sheep. Um
a she. Sorry. She she I made sure that I spoke with her. She said, “Your dad is certainly not end of life. His chest is clear, but he needs rest. Um, so we’ll set some parameters.” There was a long conversation about which I referred to as the tipping point. How do we get intervention for dad before he passes that tipping point where it’s not going to be helpful? And that’s why she set up the parameters that she did. And was it agreed that if his oxygen saturation fell below 92% the CO team should be called? However, if they fell below 88% that should trigger a 999 call.
Yes.
And and your dad should be taken to hospital if needed. Um she she said that his chest was clear but he was exhausted and needed rest. Is that right? and uh reassured you that there was um no blanket policy of not admitting care residents.
Yes, she did. Um over the next few days, um is it right that you remained anxious and distressed? Yes, I was.
Sorry.
Yeah, very much so. It was like everything we were thinking about all the time. You you were obviously worried about your dad’s health. Yes. But is it also the case that you were concerned that the staff that were looking after him were were not trained or knowledgeable about the signs to look out for?
Yes, they were measuring pulse oxymmetry. Um but I didn’t feel that they knew the signs of hypoxia and that’s because of various calls they they’d made. So when when they had called for help for dad and they were asked by the person on 111 is he distressed the statement back to the the doctor was no he’s not distressed but he was sitting in a chair all night. He was sitting in a chair all night. He never did that. He was doing that cuz he couldn’t breathe. But they didn’t understand that what respiratory distress looked like. He wasn’t aggressive or distressed. Therefore he wasn’t distressed. They couldn’t report properly to the medical staff. And um when you say he was he was sitting all day, it’s right, isn’t it, that he he was in fact moved to that um resident’s room that we discussed earlier?
Yes. And um is it right that rather than having his chair moved from the lounge um you saw from photographs that he was in fact sitting in the the chair that belonged to the previous resident who had CO?
Yes.
Um and do you know if that chair had been cleaned?
It was a fabric chair. It was a a friend of mine’s mom who had died in that room. Um I knew it was the same chair. Dad’s bed was not his bed. It was the same bed as that lady had. And I don’t think anything had been deep cleaned. It may have been cleaned, but to my knowledge, the curtains were never taken down. Um, I saw the personalized things, his photographs and things in the room, but I could clearly see it wasn’t his own furniture. And, um, your dad became unwell again that day. He he developed a rash. Is that right?
Yes. Um but by the doctor by the time the doctor came the rash had gone.
Yes.
And the doctor said not to call again unless his oxygen stats dropped below 75% sustained period.
Yes.
Um that was inconsistent with what you had been told previously.
It was inconsistent with what I’d been told and I believe it was inconsistent with life. Um, and in fact, the night before your dad died, he had sats of 85% and had been grunting all night. Is that right?
Yes. Is it right that you were told in the afternoon um that your dad was nearing death?
Yes, I was told in the morning that he was grunting all night, which rang alarm bells for me. Um, and then got a call later to say, “Your dad is end of life. It could be days. It could be hours or it could be days. And we jumped in the car immediately. Um you you you live 90 minutes away. Yes.
Um from the home. Um did you get there in time? No.
To see your dad?
We pulled over about 3 miles away cuz I got a phone call and we didn’t get there in time. No. Um, one of your brothers was there with your dad. Is that right?
Yes.
Um, and he was in in full PPE.
Yes.
He was able to sit with your dad as he passed away.
Dad wasn’t conscious or aware at that point, but he was in the room with him. Yes. And is it right that you um decided not to go into into the room? Yes, cuz our son drove us there. Our daughter came from her home and and we were all outside. My brother was beckoning for me to come in, but knowing that the home was full of CO and the dad was already gone. I wasn’t prepared to go in, but my brother had signaled to me that he was he said, “Come in. I’m keeping him warm for you.” He had wrapped a blanket around him to keep him warm for me getting there. Are you okay to carry on?
I’m fine.
Um, and I in your statement you you summarize um the last 17 days of your dad’s life by saying that he had struggled for those days and died struggling to breathe without any oxygen, supportive fluids or end of life medication to alleviate his distress. Yes. You also mentioned the last words your dad said to you on a video call. Do you remember what those were?
When are you coming for me? You say those words will haunt you forever.
Yes. Um, can you just tell us a little bit more about the impact that your dad’s death has had on you and your family? It’s had a huge impact, which is why I’m here because I want to prevent other people going through this. Had an impact in making you feel isolated from friends and colleagues as they got back to normal. It made my daughter suffer from real health anxiety and very very anxious about both of us as her parents because of seeing the loss of her granddad to the point that we didn’t hug one another until we were all vaccinated. So, and you know we we’ve lived with it. We’re very aware of CO and and there’s still anxiety when we go into crowded places, but we’re we’re all doing fine now and back to normal, but it has had a lasting impact on all of us. And you talk about um the funeral um and and you say about that um that there were no hugs, no collective memories of dad and his life, no celebration of a life well-lived, but rather a complete absence of the usual support in the grieving process. Is that right?
Yes. It was no no grandchildren could be there. There were only 10 people allowed. He had four children. They had their other their partners. So there were no grandchildren. Um, our son gave us a letter to put in the grave. I don’t know what that said, but that was all he had. Thank you. And um, since your your your dad’s death, the Scottish Co Breieve group has been a big support to you hugely because finding people on Facebook in the early days that actually got it and understood what you were going through was was a huge support. Um, and I was part of the early group that started work on looking for inquiries and wanting to make that happen. Um, those are all the questions I have. Thank you very much for coming to assist the inquiry.
Thank you,
Kilby. Um, when you suggested things to the manager of the care home with your experience, how did they take it? Did they think that you were interfering? Did they think you were being helpful? What was the response that you got? I tried to be very balanced in what I did. And I was very aware being a nurse that every time somebody phoned, it was pulling them away from what they were there to do. And as there were four of us and one sibling was ringing every day. I would I would email and message rather than than phone. I w I was aware also of the hygiene of passing phones around. Generally speaking, it was it was taken on board, but and seemed to be appreciated. But I’m I’m not sure that it actually was because there were statements made by the manager, things like we’ll be out of the woods now. We’re on day 14 and I had to tell him that the average person, elderly person died on day 18 to 21. And I was told, “You’ve dashed my hopes.” I thought we were out of it. So I I think they I think they were at best incredibly naive. Um the quote the comment was made we have a mild version here. From um your experience I mean you obviously you’ve got a great deal of experience within um business manager care home group. Um, have you managed to analyze whether this was a the lack of um implementation of IPC measures was was particular to this care home or this group of care homes or um have you worked out whether this was something that others in your group have found in other care homes? I believe that it probably was happening in many care homes. I think the absence of care inspector going in, GPS going in and relatives going in meant there were no checks and balances. How did people know what was going on? I kept close to it by looking at WhatsApp messages by there was a WhatsApp group for families and I kept a breast of all the guidance and things and when when something needed flagging I flagged it. But it was trying to get that balance right to not intrude. I don’t think we know what was going on in care homes. The doors were shut and we didn’t have access to see that. So I would imagine if what was happening in my dad’s home was probably happening in varying degrees across the board.
But by this stage, as you say, we’ve been seeing photographs of the impact of COVID and um awful impact particularly on the um more elderly. Um, it’s extremely concerning as obviously you were at the time that that care homes who catered for the most vulnerable weren’t conscious of what they should be doing.
Oh, I agree. Thank you very much indeed for your help.
Thank you.
And I’m sorry you went through what you went through. You obviously did your very best.
I did. And I think that’s one of the hardest things that I did my utmost. I guided and helped at every step of the way to try and get the right care for dad um and fulfill my promise to mom that I would look after him.
You did your best and I did my best and I know I did. Thank you.
Thank you very much indeed. Um we’ll break now and I shall return at 22. Thank you, my lady. The next witness is Agnes McCusker. Your right hand behind me, please. I swear by Almighty God
I swear by Almighty God
that the evidence I shall give
that the evidence I shall give shall be the truth
shall be the truth the whole truth
the whole truth
and nothing but the truth
and nothing but the truth.
Thank you. Please take a seat.
I don’t know how long you’ve been at the hearing. I hope we haven’t kept you waiting too long and that you’ve been looked after while you’ve been here. Uh no um Lady Hallet I was very glad to have been here to have watched the previous two participants and I feel it has helped
good and you’ve heard what I’ve said to them obviously. Um if you need a break please just say but you may find it easier if we yeah
and plow on but it’s up to you. All right.
Okay. Thank you. Can you start by giving us your full name please?
Yes. My full name is Agnes McCusker.
Thank you. Um, you’re quite softly spoken. Could I ask you just to try and keep your voice up, please? Okay. Thank you.
Um, it’s it’s very important that your evidence is heard. Um, I if it’s if it helps, you can try and bring the microphone closer to you. Okay. And this one. Thank you. Okay.
Um, thank you very much for coming today. Um, you’ve come to um, tell us the story about your mother. Is that right?
That’s correct.
Um who uh died in a care home in Northern Ireland?
Yes.
Um on the 12th of April, 2020.
Yes.
Uh was she about 94 years old at the time?
She was 94 when she went into the nursing home. She was she would have been coming close to her 96th birthday. Um and she’d been living in the the care home for about 2 years.
Yes, that’s correct. Um, prior to that, did she live with your brother?
She did. She lived at home. Um, she lived at home with my brother for she she had never been in or out of hospital, so she’d lived with him. Um, and various members of the family would would call with her. Yeah.
And was she very active and and mobile?
Yes. Well, all all of her life she was. In recent years, she wasn’t as active, but was able to do her housework, was able to make herself and and my brother some lunch, dinner, tea for anyone who called, did all her own cleaning, washing. Um, I could have gone out on many a day and found her taking all the ornaments off some unit and cleaning them all. So, she always kept herself busy. She never sat down until it was, you know, near time at night to go to bed. And um is it right that that the reason she ended up going into a home is that she had a fall?
Yes.
Um and then she um struggled to get a care package in place.
She got a fall and had to go to the local hospital where it was diagnosed that she had a a fracture of her pelvic bone. And although they said they couldn’t do a lot for it, they would keep her in for a week under observation and they changed her medication, took her off quite a few medications that they said she never needed to be on. And they then said when she was getting home, she would need the help of two people to help her initially. And um she was visited then by the physiootherapist and the occupational therapist and a social worker then became involved with us in terms of trying to get her a care package. She lived in a rural country area and the care package at either side of her only stopped in the towns closest to them and my mother lived in the middle. So they tried for weeks to get a care package and as time went on, we then had to make a decision with the nursing home if my mother was going to stay there because the time had run out in their words for them to find a care package and the home wanted to know if she was staying or if she was going home to her own house.
Um, and did she suffer another fall against the radiator?
She suffered two more falls. Um, one was on her 94th birthday. We went to the nursing home with a birthday cake and all her family turned up to find that she was sitting at the front door in a wheelchair waiting to be taken to hospital for an X-ray. Um so she was taken for an X-ray and thankfully hadn’t broken anything and then subsequently returned back to the nursing home again um where she was placed in nursing care. The home had two separate parts. They had a nursing care section and a residential section for a small number of people at the back of the home. And um when COVID came, was your mom living your mother was living in the resident in the nursing section? Yes, she was.
Um and and did you try and get some um physiootherapy support for her to try and get her back on her feet? Yes. Um physiootherapists had called out at the home and uh we were never informed of when they called or who they spoke to. they would have probably needed a family member present, but we weren’t told when the physiootherapist was coming to the home. So, while we did inquire, we were told that the physiootherapist would come in once every so often and take my mother for a short walk and determine what her mobility issues were. And we are just led to believe that that did happen, but we never saw it happening. But her mobility didn’t get better. So she was unable to get back on her feet by the time the pandemic came.
Yes. She she she was initially walking with the help of a walking frame. Um and then she had another fall but the other fall occurred when they moved her from nursing into residential. And we had great issues with her going to residential because we were told that the people in residential had a certain amount of mobility, could if they wanted go in and make themselves a cup of tea in a small kitchen, and that um in their opinion, my mother only needed one person to help her, but she couldn’t manage on her own. So being in residential, she wouldn’t have had the one person there with her and um we tried to get the home themselves to move her back to nursing care and they said no and then I approached the social worker who initially put my mother helped my mother to get the placement and she said she would have a word in the nursing home and they said no um we think she’s she’s fine in residential. But but she she she did move to nursing and that’s where she was.
Yes.
When the pandemic hit and and did she have her own room?
She had her own room. Yes.
And um C could you tell us about her hearing please?
Yes. Uh when my mother was a child, she developed a bad ear infection and she knows she remembers that uh the her relatives, her parents took her to the local doctor at the time and he um told her that the infection although she didn’t feel anything had been there for some time and that it might affect her hearing as she got older but she subsequently lost all hearing
in that area. in that ear. And at one stage when she was maybe in her 70s, they took her in and completely sealed the in the eard drum. So she had no hearing in that ear and she wore a hearing aid in the other ear. And um is it right that she was very good at lip reading although her hearing wasn’t very good?
Yes.
She she relied on that to understand.
She did quite a bit of the time she relied on on looking face to face at us. Um and and um just continuing with her her health generally um she was never diagnosed with dementia but um is it right that you suspected that she might have mild dementia?
Yes, we suspected that she had um what I suppose we would have termed older age possibly forgetfulness but it wasn’t noticeable when her own immediate family came in to see her. She she noticed everything about us. She recognized things. She knew the grandchildren when they came in. Um she may not have remembered who was in three or four days before it, but she was alert and you know knew what knew what what she was eating. She knew things that were going on on a day-to-day basis and she recognized the staff. So So she knew the staff. She she recognized
um her children and is it right that that she had seven you’ve seven children and 13 grandchildren. That’s right.
And um although she she did have some memory issues when when when when the children the grandchildren came to visit her, she recognized them. Yes.
And she she was able to remember who’d been to see her that day.
Yes. Noticed small changes like haircuts and things.
Yes. Small changes like haircuts. if you had something that she hadn’t seen before, a new outfit, something like that. She um and she loved, you know, she loved to get the newspaper brought in and she would read that in between visits of the daytime and the evening and when you were in the next visit, she would tell you something that you know she had read out of the paper. So although at an advanced age, she was fairly with it. Um and in the two years that she was in the care home um before the pandemic hit, is it is it right that um her her many grandchildren and children visited her on a daily basis? Um possibly not on a daily basis because most of them worked during the day. The ones who were available just dropped in and out. It was open visiting so they didn’t have to wait to visiting hours. They dropped in and out for 10 minutes, went around to see her either in the sitting room or in her bedroom and all seemed happy with her. You know, she she would tell us who was in and uh they were just delighted to see her. And did your mom did your mother enjoy those visits?
She did. She did. Um your mother was quite a quiet person. Is that right? That’s right. Um, was she able to um ask staff for for things that she needed? She was certainly able, but she possibly came from a generation where you don’t bother people if they’re very busy. The nursing staff have lots to do in here. And unless this is something really important, she wouldn’t have she wouldn’t have asked for help. Um whereas when her children came to visit um you or your siblings would ask the nursing staff for things um on behalf of your your mother.
Yes.
And is it right that um she she wasn’t um the best at eating
um in particular they I think they served rice quite a lot at the care home which your your mother wasn’t greatly fond of.
No. Um, and so is it right that that you and your siblings would bring cooked food for your mom that that you knew that she liked?
Yes. Not not so much in terms of meals cooked because I probably thought that wouldn’t have been allowed. things like yogurt, custard, things that we knew would boost either her lack of eating during the day, um drinks, um maybe a scone instead of her having the rice at night, which she didn’t like. It was made quite in advance and it wasn’t very appetizing. We would bring her in. We also we also brought in tea. Um we she didn’t like the tea because she told the staff initially when she went there she didn’t like a lot of milk in her tea but they would continue to pour in half a cup of milk and then top it up with tea. So she then she would leave leave it sitting and wouldn’t drink it. So we brought in the tea bags and made the tea in the home and brought it down to her and she absolutely took it. But that only happened when her own family came in.
And was she fond of tea that you brought? Yes, she was. Um the home that your mother was in um closed down fairly early. Is that right? When when the pandemic hit in March,
um you were informed um that uh there would be no visits and and the clo the house was the home was closed. They closed on the 18th of March and I was informed by a phone call and on that particular day my brother who lived with my mother was on his way to the home. Uh he went every day and he would always stop at the local shop and go in and get her, you know, fresh chilled drinks, um yogurts, uh maybe biscuits, the usual things, and bananas, things that he knew that if she didn’t eat the tea, he obviously wasn’t giving them to her before she had her meals. He was waiting to see had she eaten during the day and then he would give her. And the home rang me while I was collecting grandchildren at our local school. And I said, “But my brother’s actually on his way and he will be there any moment.” And they said, “No, you have to phone him and tell him that he can’t come in.” Now, this was minutes after the home officially closed to the public. And I said, “But could you let him in just to give in the things that he has bought?” And they said, “No.” Um, did they give you um much more information than that?
Not at the time. They just said, “We’ll monitor it as it goes along. This hopefully won’t last.” And um I immediately was concerned that if it went on any longer than two or three weeks even at that stage that my mother would um go downhill because you know your own mother best and you know what affects her. If she was resilient and outgoing and asking lots of questions, I probably wouldn’t have been so doubtful. But knowing her personality and knowing that she wasn’t a big eater, my fear was that without seeing a family member, any family member, or even just one, that she would deteriorate. Was that a conversation you had with the home? Well, I didn’t for the first week or so because at this stage we all very blindly thought that we would get back in. Um, we thought as time goes on, surely someone will get in because I’d never heard of a situation where a relative couldn’t visit someone ongoing and no no word of when this would when they would change things. And initially they didn’t say anything about um when they thought it would change, but we didn’t hear anything for weeks. We just rang the home.
Um the the home was was closed for a while. Um did you get much information from the home as to how your mother was doing? No, we didn’t get any information unless we rang different family members. So, instead of us all ringing and asking the same questions, myself and uh my brother who did live with my mother at home were the usual two that rang and then we would ring each other and see you know that. So, they basically said, “Your mother’s fine. she’s sitting in her room or she’s you know and at one stage I asked um is she eating and the nurse her reply was well you know your mother’s not a big eater anyway and I said yes but with us coming in we have helped her to nourish her with healthy foods not bringing her in junk or things like that but bringing her in healthy foods and without us getting into the home, we’re concerned. Did they suggest that you could bring some food in for her?
No.
Um, if if you and your siblings weren’t ringing the home, um, were you getting any information from them?
No. Did you get any policy documents or
We got no policy documents,
any explanation as to what was going on?
No. Absolutely none. Nothing. Nothing in writing and nothing by phone. Did you feel like you really understood how your mother was doing? No. I I I I spent every day wondering how she was doing because the same response was given. Should I phone during the day or should I phone at night? Which of these cases am I going to get more information? Um, and it was it was virtually the same regardless of whether it was during the day. The staff would change over at 8:00 and the night staff would say, “Well, I’m only in, so I can’t really tell you an awful lot, but surely there’s a passing on of information from the daytime staff to the nighttime staff.” And um, no, I we weren’t given any information.
Um, and is it right that the um the home had changed hands? Yes. during this time. Um, and so, um, you presume that there was also a change of staff, but but were you told about this and who who who knew staff were? Uh, no, we weren’t told that there was a change of hands. We I received a letter. I received a letter probably on behalf of the rest of the family and um I actually have the letter here. The letter changed from uh Four Seasons Health. Yeah, sorry. Sorry. The letter ch the the home changed hands and we weren’t told by the home. I got a letter to state this and that um they had said in the letter that due to CO restrictions um visitors would not be allowed into the home with the exceptions of end of life care. Um and I think you say in your statement also that that with the change um and with COVID happening, you notice that there were more agency in bank stuff. Is that right?
Yes. And the only reason I know that without being in the home and without being told that there will be other staff members when I rang up the names that I was given from the person answering the phone were not the names that we knew from when we were in visiting
and and um therefore not not the the staff that your mother knew either.
Yes, that’s right. Um, and is it right that you you were phoning the home every day to to check on your mother? Yeah.
And you were just always told she’s in her room, she’s fine.
Yeah.
Um, one of the other concerns that you had was that her chair um was in a place in her room which was quite some distance from the buzzer um which she would have to ring if she needed help.
Yes. Um do you know if that changed at all? Well, the only reason I know that um is because I was in the home on on an occasion before CO and my mother I think maybe she just hadn’t been feeling well one day and she they had set her out in her armchair. They normally would have taken her to the day room and sat with all the other residents and on this particular day she was sitting at the chair at the window and the buzzer was on the opposite side of the room. Now, I’m assuming that in some instances a connection can be made to to lengthen the buzzer to have it near her, but on the occasion that I was there, that wasn’t the case, and I feared that if she had wanted to call a nurse, she had no means of doing so. Um, can I ask you about Mother’s Day? Um, it was Sunday the 29th.
Yes.
Um, you asked if you could go and see her. Um, and you’re allowed to to see her through her window. Is that right?
That’s right. Um, so they brought her into her sitting room. Um, and um, is it right that your mother was waving at you and trying to ask you to come into the room?
Yes.
Um, she was. Yeah.
You tried to get her to understand that you couldn’t and and and why you couldn’t. Um, did she understand why you couldn’t come in and see her? My firm belief is that 100% she didn’t understand. She she was waving me to come in and I was having to shake my head because there was a very top window open with all the residents sitting underneath it. No member of staff came in and stood with her in the room to explain to her that I couldn’t come in. um she wouldn’t have understood CO but I subsequently gave her a Mother’s Day card and wrote on it that there was a bad flu and that I couldn’t come in but I was hoping to be in soon and that I had to leave it like that because I didn’t know and I thought it sounded better to say I knew she could read the card and I knew that it might give her hope if she felt that at least someone is going to come in to see me soon. So I I I I subsequently gave in the items to the home and um was anything suggested in terms of uh remote calling, FaceTime or anything like that for you to be able to keep in touch with your mother?
No, no FaceTiming or remote call. One nurse did suggest um her bringing again a nurse that I had never known or heard tell bringing her phone down to my mother and she suggested that maybe we could FaceTime but we felt that my mother’s hearing wasn’t good enough and that seeing us on the phone and not being able to hear us it would have been confusing for her. So we we didn’t do it.
And and was there a also a suggestion or or was this the same occasion that you’ve just described where a nurse had suggested using an iPad? Yes, I think I think one of the staff did suggest using an iPad. My mother given her age was not familiar with technology. She would have used the phone quite a bit at home and while she had her hearing aid in, she was able to hear us quite well on the phone. But we didn’t get the opportunity to phone her. No one made the suggestion and it just didn’t happen. Um and and you talk in your statement about the terrible impact that not having those visits from her family must have had on your mother. Can can you tell us a little bit about that, please? Well, I felt she would have felt abandoned. Um that’s the only way that I can view it. Um she she would have been used to daily visits during the day and at night and if she needed something, she knew that her family were there to back up what she maybe felt she couldn’t relate to the staff or in some cases thought the staff were too busy. She she would tell us um on a couple of occasions her hearing aid broke down and um my brother took it off, had it fixed, brought it straight back, she would have done without the hearing aid, maybe rather than ask someone in the home, can you fix this for me or can you send this off? Um without seeing familiar faces like ourselves, she didn’t sit generally in large group sittings. Um she went up to bed every day during the day for an hour, got up again and then the staff would put her back to bed at night for us coming in. So we were able to sit in her room one to one. Um she was a private person who probably didn’t like to speak in front of lots of other people in the room. So we had onetoone with her. We sat beside her bed and just chatted away for any length of time. There was no cut off time to go home apart from obviously not overstaying past 9:00 and I felt that when I phoned first of all and and inquired about her they said your mother’s in her room I felt is she in her room every day sitting um after after a while she’s bound to have had an impact on not seeing familiar faces and faces of her family.
So, you you were worried about her her day-to-day needs perhaps not being met because she wasn’t
one of those people who felt like she could actively ask for it and you were worried about her degree of social contact.
Yes, she she would have she would have she would have asked the nurse who would have been in maybe working with her in the room. She would have told her if she’d had pain or she would, but she wouldn’t have actively sought them in the home unless they they were near her. Yes. Um there was an occasion at the start of April where um you spoke to the home um and you were told that um your mother had a cough um and you offered to go to the pharmacy and get the prescription um and bring it to the home. Is that right? That’s right.
Um, and when you turned up at the home, you were in full PPE. Um, was the nurse who took the items from you in in full PPE? No. The nurse came to the door and she was one of the nurses who had been there for quite she’d been there certainly from when my mother went there. She came to the door and opened it and her first words were, “You can’t come in.” And I said, “No, I I know that.” And uh I gave her the medicine and um she was wearing her uniform. She wasn’t wearing a mask and she had an apron, plastic apron. Um you say that looking back um there was a a lady um in the care home who had dementia and um you think that perhaps your mother got COVID from her. Um is it right that she this lady with dementia she would walk in and out of rooms be wandering corridors?
Yes.
Um and um your view was that the staff weren’t effectively able to isolate her? It seemed like they couldn’t isolate her because she was constantly walking around. Um, and my mother was a little bit um afraid maybe is the right word. And so I spoke to one of the staff at supper time one night and expressed that my mother was a little bit concerned. The lady wasn’t doing any harm, I have to add, but she was wandering in and out. And the person I spoke to said, “Well, you know, she has dementia. There’s nothing we can do about it.” And that was that.
And is it right that that that lady um passed away a week or two after your your mother did?
Yes. Um on the 7th of April 2020 um the home rang to say that they suspected that your mother may have COVID. Is that right? Yes. They they rang to say that my mother felt clammy and had a little bit of a cough. Um they said that they were going to isolate her in her room.
Yes, that’s right. And when you asked whether that meant that staff would still go in and out, they said yes.
Yes. They said the staff would go in and out, but they wouldn’t be fully gowned.
So, um, they said they’d be wearing aprons and gloves. Is that right, but but not be fully covered up in PPE? Yes. Did Did they give you an explanation as to why they weren’t going to be wearing full PPE?
No. I I’m assuming that at at that stage they didn’t have PPE and then a day or two later um they confirmed that your mom did mother did in fact have COVID. Yes.
A critical care team arrived
um and they had her in oxygen.
Um you you spoke to the doctor. Is that right?
Yes. The doctor rang me from the home and that was the first indication that I knew that um when the result came back that my mother indeed had CO and they said her oxygen levels were falling and they would um I think it was called the critical cure team. they would administer oxygen when needed and that they would come back to the home the following day. And I said at this point, um, can I get in to see my mother? Can any of her children get in? And she said, well, the home are saying no, but I will go and ask. And she did go and ask and returned and said uh you just her immediate family can come to the home in the evening time, not that evening but two evenings later and you can go outside into the courtyard and see your mother through the window.
Um and is it right that that the seven of you took it in turns to go up to the window and Yes. and see your mother? Um and what was your mother’s response on seeing you? Well, my mother, we were shocked, but my mother was wheeled over to near the window. A member of staff was fully covered in PPE in the room and my mother’s bed was taken from that side of the room to the side where the window was and she had an oxygen mask on her. And the first person that went in, whichever one of my siblings went first went in, from that until the last one went in, she smiled at each one and told the nurse their name. Um, and is it right that um that was the last time you saw your mother?
Yes. After that, you you carried on ringing to see how she was doing. I inquired again, could I go in? And they said, “No.” And I said, “Look, if I can get PPE myself, can I go in and go out to the courtyard and see her through the window as we previously had done?” Um, and they said, “No, there’s no visits allowed.” Did Did they say why they why you couldn’t see her from the courtyard? Didn’t give a reason, but I think they were still using the It’s the public health. it’s not us argument. Um was there any discussion with you or your siblings about palative care or end of life care? Um no there was no discussion from well yes when we heard she had co I suppose we we’re we’re just like everyone else you hope that she will recover from it and um as days went on she stayed much the same she didn’t go downhill in in a matter of a couple of days she rallied for a bit with low oxygen levels and then And I rang the home one day to see had the acute care team returned to to see how she was. And uh the person who answered the phone, the nursing person said, “No, we can do that ourselves.” And I said, “No, well, it’s just that the acute care team informed me that they would return to the home and um they would subsequently let me know how she was doing with her oxygen levels, how she looked, um if in their opinion she was in danger.” And they said, “Oh, no, no, we we can do that.”
Um and is it right that you asked the home um to let you know if um if things went downhill?
Yes. And um you received a phone call early on Easter Sunday which was the 12th of April.
Yes.
Um to say that your mother had passed away.
Yes. Now I had I had rang the home the previous night on the Saturday night. Different members of my family had rang throughout Saturday and everyone was told she’s sleeping. She’s she’s okay. She’s sleeping. She’s a little bit clammy. Um, but as the day staff were were about to change their shift, I rang before they changed their shift and I said, um, I would like to see my mother, but I I also want to be informed about how she is. I want to know if she’s getting worse and I don’t mind at what time of the night someone rings me, but I will be available and I would like to be able to come up to the home and see her
and she assured me that there would be two members of staff on that night and that um I could ring them anytime I wanted.
Um but you didn’t receive a call until
No, I didn’t receive any call. I rang the latest that I felt I wanted to ring was about 11:00 p.m. And uh they said, “Oh, your your mother’s sleeping. She’s she’s the same as she was earlier on. Um she’s not eating. She’s just taking sips of water.” And I suppose because I heard that she was only taking sips of water, I just made the assumption that she’s not very well, but no one told me that. And and when you received the call saying that she had passed, um you asked whether anyone had been with her when she died. Yes.
Um had anyone been with her?
The nurse said no. Um you asked if you could bring some clothes in for your mother after that. Um were you able to do so? No, we were told we weren’t allowed to bring in any clothes and that we weren’t able to come up to the home at any time of the day. Um, and that they wouldn’t be doing anything until the doctor had confirmed the death. So, we just then subsequently contacted the funeral director. And and you give a very vivid description in your statement of um going to the home um not really understanding what was going on.
Yeah. Um not being given any information and then um the undertaker coming um spending some time in the home and then taking your mother away leaving all of you just standing there. Um the funeral took place the next day. Is that right? Yes. Um, just going back to the undertaker did go to the home and uh, he had to wait around for quite some time before he was admitted inside. When he got in himself and two other people who I believe he he was he had to take with him to get my mother ready, if ready is the right word. And we expected to be called in when they had done that. Um we expected to be called into the home to see our mother for the last time. Um and to say our goodbyes, but um after do that.
No, we weren’t allowed to do that. Thank you. Um and and and you you attended the funeral the next day. Um and and you said in your statement that there was there was no wake. Um that you were all outside, just the children spaced out.
Yeah.
Um and then she was taken to the church graveyard and wheeled um in her coffin there. There was no mass, no service, just prayers with only 10 of you allowed at the graveyard. That’s right.
And afterwards, you all had to go home to your own houses. That’s right. Yes. We obeyed the rules. Um, we weren’t allowed, we were only allowed to have 10 people, no grandchildren, no one else at the church. Um, the priest said you you can only come over and stand. The immediate family have to stand spaced out around the the the grave. We did that and uh no one else was present. So yes, there were just a few prayers said and uh my mother’s coffin was lowered into the ground. Um and then we went home to our own houses and subsequently I think the next day or two days later, the graveyards were closed. Now in Ireland and in Northern Ireland, funerals are different. And I believe they’re different to what they are in England in so far as we have what’s called a three-day wake. We have the day that the person’s remains come home from a hospital or a nursing home. We have the next day where people call to offer support to to speak about the person who has passed away. And in our case, my mother had a very long life. So a lot of people would have had stories to tell. um her grandchildren would have loved to have compared stories. Um they still do. Um so yes, we were denied the opportunity of doing that of of meeting up. Neighbors couldn’t come to the funeral. Um and they couldn’t come to her house. And um I can sum sum it up if I was trying to think of what my mother would have made of it. She would have been absolutely shocked to think that in her dying days and moments she never saw a family member. she um was totally reliant on the limited number of staff that were there and uh try as I might I can’t imagine what went through her mind. Thank you. Um, and is it right that you went to the home a few weeks later to collect her belongings and um you had some concerns about
um the the degree to which IPC measures were um adopted in the home. Um, and an example you give is that when you when you went to the home to collect her belongings, there were um delivery people and and workmen going in and out of the home without any PPE on. Is that right?
Yes. Well, I had to ring the home myself to ask, could I come up and collect my mother’s belongings? I didn’t get a phone call about that. And they said we have to keep them here between a week and six weeks. That’s the rules for co
and I said that’s fine. Sorry. I’m sorry to interrupt. Um, you also mentioned that the the home was short staffed even before the pandemic.
Yes. Um, and and you can imagine that it only would have got worse during the pandemic.
Yes, that’s true.
And is it right that you also um don’t think that the home had much PPE? Well, they didn’t have any PPE until after my mother died. um a local group uh were able to ask for funding and the local group went around five or six nursing homes in the general area of where my mother was uh in the city of Arma itself. they went around and gave out uh PPE staffing from the day an hour my mother went in was an issue lack of um during the day it wasn’t too bad but from 8:00 at night until morning time there were times when there were was one assistant And on on a night when we could breathe a sigh of relief going through the door, there were two care assistants. And what it meant when my mother needed the toilet, it became an issue to the extent that we almost our blood pressure and our anxiety levels rose as we went through the door because we knew as soon as we got in our mother would ask us, I need to go to the toilet. We couldn’t find and she was in bed at this stage. So, she needed an assistant or a nurse to get her up and help her out. We spoke to the manager about it. We spoke to the social worker about it. Um, the social worker at first couldn’t believe that I was telling her there was one one assistant at night and I don’t know if anything changed, but it certainly couldn’t have changed for the better. Thank you. Um and just finally um obviously the home was having to follow guidance and and were struggling with work uh with with workforce um staff numbers um and things like that. But do do you think that the home did enough to um care for your mother and uh to take into consideration um your family’s um needs? Well, if they were to say they were following guidelines, I don’t understand any guideline that keeps a family member out from a dying parent in their last hours. If they didn’t get injuring CO, that was bad enough. But end of life cure to me is a human right. It’s a right to be able to see your parent, sibling, whoever would be in a nursing home. And given the context of where my mother was placed in the home, I never needed to go near another resident, I could have gone in round the back in through the courtyard and my mother’s room was facing out, which is the the place we went to see her when they told us she had CO. So why keep people out? We’re not going in to have parties. We’re not going in to have fun. We’re going in to see our dying relative. Why keep them out? Why were the inspections not carried out? Why was someone not going into the home and saying, “You need to do this. The RQIA weren’t in. The public health authority weren’t in. I don’t know if my mother’s room was cleaned. I don’t know anything about what happened from the 18th of March until the 12th of April. Thank you. Um, we’ve covered quite a lot, but is there anything um in particular that you you would like to No, I think I think we’ve covered Thank you.
port of the issue.
Thank you very much for coming to assist the inquiry. Thank you very much indeed your help. I don’t know. I can’t remember if you were at the meeting when I first went to Northern Ireland to consult about the terms of reference. I don’t think I was. But um one of the very first things I learned from going around the country from bereieved family members was um how different bereavement is during the time of a pandemic. And you’re talking then about the three-day wake that you would normally have. I mean, as I understand it, the three-day weight, the idea is that you
get your grief out, that you share the joy of the person’s life, and that you do it as a as a group of loving family and friends.
That’s right, Lady Howlet. Yes, that’s right.
Well, I’m I’ I’ve very much um understood that point that people wish to make and I’m really grateful to you for your help. I appreciate it. Can’t have been easy. No, thank you very much indeed.
Thank you really, Helen. Thank you. And thank you. Right, we will sit later before lunch to try and finish the next witness before we break.
I’m grateful. Um just pause just for a moment, my lady. Thank you. And if I may call Helen Hall, who’s just making her way in now. Don’t trip over the step.
No, I I’m I’m recovering from a broken leg.
Oh, no. Oh,
I know. Yeah. Yeah. I’ve I’ve got a broken foot and a broken knee, but we’re fine. Um, are you okay to stand to take the oath?
Yes.
Right. Affirming, aren’t you?
Yes. I’m not I’ll do either.
It’s your choice.
We’re a Christian. I don’t mind.
Yeah. Go on. You could hold that and repeat after me. I swear by Almighty God. I swear by a might almighty God
that the evidence I shall give
that the evidence I shall give
shall be the truth
shall be the truth
the whole truth
the whole truth and nothing but
and nothing but the truth.
Thank you. Please
thank you.
I’m sorry you’re the last witness of the morning, but I promise you we’ll we’ll sit on into the lunch hour so that you can complete your evidence before we break.
Okay. Thank you.
Thank you very much for waiting.
Thank you.
Thank you. Um Miss Hoff, um you’ve helpfully provided a witness statement to the inquiry. For those following, that’s INQ0000587649. Um, but you are here today to speak about your experiences of the pandemic in owning and managing a care home and your personal experience involving your husband Vernon. Is that right?
I am. Thank you. Um, at the time the pandemic began in January of 2020, um, you and your husband owned a nursing home in Rexom. Is that that position? Yes. Um, you have a background in nursing yourself.
Yes.
In fact, you come from a family tradition of nurses. We do.
Your mom, your sister, and you.
Yeah.
Yeah. Um, you purchased the property that was to become the nursing home back in 1987. And over time, that’s grown in. It grew in size.
Yes. Um, it began with 22 residents and subsequently up to 40.
Yes. Um there was a nursery as well in the grounds on stage. Your sister ran that. She did.
It was a family affair effectively.
Um you and your family have always lived on site.
Yes.
So it was both your home but also your business. Yes. Um you worked within within the home initially as well um doing far more nursing. Is that is that the position? Yes.
And then over time what happened? So I I when we first opened I was there full-time. my sister helped out working night shift and uh my mom would do a few shifts but over time um I took on more staff because the home became more for one of a better word bureaucratic. So there was a lot more paperwork to be done as an owner manager than there was in previous years. So I went down to about three shifts a week and the rest of the time was in the office. And just to get a sense of the size of the home, um, in terms of staffing, you had, um, 12 trained nursing staff members,
you had 35 carers, which would increase up to 45 during holiday periods.
Um, five domestic staff.
Yes.
Um, two activity coordinators for the residents.
Um, two maintenance staff,
five kitchen staff and an administrator to help you with um, your duties in terms of management. And then also your husband Vernon took on a full-time role within the home, too. um he undertook maintenance but also um a lot of a lot of care in relation to the residents in terms of in terms of doing chores and different things for them
entertaining the entertain patients. Yes.
Okay. And and so that’s really the position as at the start of the pandemic. Yes. In terms of the home. Um just um touching on how you viewed those patients and residents within the home. Um what would you how how would you describe them to you?
Um well we were we’re a nursing home so we had very poorly patients. So on our our ground floor it was we had quite poorly patients. So it was a bit like very intensive nursing upstairs. They were less intensive nursing and we did have a few patients that were classed as residential patients. In other words, they could self-care, but they were mainly there as a partner to somebody who’d say had a severe stroke and their husbands came in with them or they came in because they were quite local and they wanted to come to us. I didn’t have many residential patients. They were mainly I mean residential classed as residential but they we categorized them all as patients but some about four or five were self-care and the rest were all quite heavy nursing patients um and they were just like our extended family really in terms of Veron’s role in relation to your patients can you just give an insight into what his what he would do his role before the pandemic is His role was um he did all the general maintenance then. He did um the decorating and painted the gardens in particular. His father used to do the gardens when he was alive as well. Um and then he he’d go out and do all the all the shopping for the for the cat. We had deliveries but there were other things that we would get in here there and everywhere for specialized things that patients wanted. But he would also see to them having the patients have their their newspapers and if they wanted anything in particular, if they fancied fish and chips, he’d go and get it. But he was he he did a lot of running around outside of the home as well as the maintenance in the home.
And I understand in relation to um your patients within the home, you’d also take them out on um day trips and things like that when possible. He would he would take them up to the garden to the poly tunnel um where he they would do lots of planting with the patients those who were interested in gardening. But if we would if we arranged day trips we often arranged like trips on the canal in Flangos and things then he would take them in the van and he would accompany the carers who would taken the patients and and to bring them back and arrange to to f people back into. He would also pick up day patients from their home and bring them back in. Um, and he occasionally would take the odd patient up to the pub next door in a wheelchair if they fancied a drink in the pub or wherever, but he he he was we were there all the time.
Indeed. I’m now going to turn, if I may, to the outset of the pandemic and you explain within your witness statement that you start to become aware um of what is going on in China as initially.
Yes. I I read I was working a night shift and I was reading on my phone from um uh the Lancet that that this there was a possible SARS outbreak again in uh in China coming our way which at the time they were saying that it was like a bird flu and it wasn’t it wasn’t possible to humans which is the first time they said that as well. So, so we were aware that something was going on in China uh back really in November in of 1919 of not 199 of 2019.
Um and I I became a aware of I was starting to pick up articles about this because I was a bit concerned that it was going to start coming across to Britain at some point. But we were still we weren’t uh we weren’t fully aware of it coming to us really until about the February of 2020 and we we were away at the time and and my son was going skiing and he was concerned that he wasn’t going to get back to Britain because Italy and Spain and places had already began to lock down. Um China is already locked down by this time. If I can just pause you there really just to come back to the home itself. It was at that point that you described that you began
I began stockpiling your own
P. I began stockpiling then PPE uh in in the February I thought well we’re going to we’re going to start with another pandemic here.
It’s right to say that you’ve had some experience in terms of infection control measures previously in relation to other outbreaks whether it’s norovirus um seasonal flu for example which is
the swine flu few before Yeah. Now, in terms of um official guidance and contact with local authorities and and um other organizations in that respect, you had a meeting, do you recall on the 10th of March?
I do.
So, not long after you became more aware of it in late February.
Yes. Yes. Um there was a meeting between you, the local authority, other care home providers, VP cluster leads, so effectively a health and adult social care meeting.
And in relation to that meeting, that covered broad issues. Is that right? In relation to recognizing um potential symptoms of COVID 19.
Yeah.
Um reducing any cross infection, managing any potential outbreak within the home, um and infection and prevention control. I just want to bring up, if I may, paragraph 19 of your witness statement. Yeah. Because within your statement, you set out that you made a note at the time.
Yeah.
Of upsetting messages as you as you described them that you heard at that meeting. And I just want to go through them if I may with you briefly. Now um this is what you came away with that firstly older people will not be ventilated.
Was that said in the meeting?
Yes.
They would it was that that older people would not be considered for ventilation was their terms. Yeah.
That second indeed you go on then it goes on then to specify the care home population will not be considered for ventilation.
Yeah. And is this your note here? In fact, there were virtually no admissions from care homes into hospitals at all
afterward. Yeah. After that, that’s the after that that’s your experience of it through the pandemic.
Yeah.
And that then in terms of um access to um medical care, one GP will be allocated per care home.
Yes. With most consultations conducted over the telephone.
Yeah. And indeed in your your experience was that following on from that um no general practitioner attended the
care until well into 2021.
Y
and so that it follows from that that there were remote or video or telephone consultations. Yes. Which unfortunately wasn’t good in my care home because of the Wi-Fi coverage. It was quite poor. We’re going to come on to that later in a little bit more detail, but essentially these were the messages that were being sent right at the outset of the pandemic to you as a care home manager.
Yeah. Now around this time also there were policies being instituted in relation to the discharge of patients from hospitals into care homes.
Yeah. And you set out within your statement your experiences in that regard.
Yes. Now, you say that was not something that was unusual in and of itself.
No.
Um, in that there were obviously established procedures in place for the discharge of hospital residents into your care home and had been for for many years.
Yes.
It was it was effectively a regular occurrence.
Yes.
If you had a bed and you’d be in contact with that hospital every week.
Exactly. To see if you and if you had any bed space available. Um so from around early March again you were contacted then about um potential free bed spaces um which would enable individuals to be discharged from hospital and free up the hospital um beds in that regard. There was no mandatory or routine testing at that stage. What was your response? My response was to to the local health board was uh the only way I would accept any patients from the hospital would be if it they came with a written negative COVID swab. And I wanted it in writing that it was it come as a negative COVID swab. And the the response I got was that that may not be possible to do that. And I said, well, they don’t come and they their response was they were going to report me to CIW for bed blocking. Were you reported?
I don’t know. I said you can report me to who you want, but nobody’s setting foot over my nursing home without a negative COVID swab.
And did that remain the position
the whole time? And so in terms of the first patients from hospitals that would have been in in um accepted into your um care home, when roughly would that have been? Can you recall? Where was
with a negative test?
Oh, that that happened quite soon afterwards that when when we got patients coming in from there. I would say probably um again March time when we were first having patients coming in quite poorly patients by this time. They were they were having negative swabs. They it was written down that they were tested negative for CO before they came to me. And was that before the roll out um across Wales of the mandatory testing prior to dis hospital discharge? Do you know? I don’t know. I don’t know if it was before that. It probably was because it was quite early on that as soon as we knew I I’ve got a friend who works in a hospital and so um we were saying, you know, she was on a on a ward where she was treating patients with COVID. So, I knew that I didn’t want anybody from hospital that tested positive
with COVID.
And in your statement, you say that you were concerned about the pressure being applied.
I was
on on both you and other care homes. What What enabled you to say no?
Because I’m I was an owner. I was an owner and a manager. And I did say to public uh to the local health board, I hope you’re not putting pressure on other homes like you are with me on managers because managers may not be able to say no, we’re not going to take people with an or or we’re not going to take people only with a negative swab. If you’ve got a homeowner that’s got eight empty beds, then the owner may say, “We want them filled regardless.” whereas I had the choice to say no, they’re not coming into my home. I’m not sure that every manager had that choice. I don’t know, but I did say that to public health to the local health board.
Thank you.
That I hope they weren’t putting that pressure on them.
I want to turn now to the subject of um infection prevention control guidance. That was also something that was discussed at that 10th of March meeting. Yeah. Um but just dealing with how that guidance developed and firstly um how realistic it was aspects of it were social distancing as you set out. You advised that you had to remain 2 meters apart. Yeah.
Um was that realistic in your care home in your nursing home?
No, it’s impossible to begin with. You can’t move anybody’s thing on your own. You can’t nurse a patient without touching them. But also you need two carers. If you’re moving a patient safely, you need at least two carers with every patient to to be able to move them. And they’re going to be less than two 2 m apart. I mean, we were advised at one time that their recreational room, which was outside, their chairs should be set situated 2 meters apart outside and then when they came in the home, they’re in the same room handling the same patient. that the guidance was it was nonsensical really.
You explained m much of the IPC measures that were put in place within your nursing home or as a consequence effectively of your previous experience of training. Yes.
In relation to infection control.
Yes.
Um just um picking up on one of the practical um consequences of that within the home. You split the nursing home into three um separate sections and areas. Is that right?
Yeah. Three zones. And you had a red zone and a green zone. Yeah. Yeah.
Well, they were designated red and green.
Um, red zones were where people with any symptoms of COVID or suspected COVID were moved to and then the green zones obviously um business as normal effectively within the nursing home.
In terms of the staffing of those areas, were there designated staff that would only work in the red the red zones and only work in the green zone?
Yes. And I understand that it was only you and Vernon that would cross between them.
Yes. And that was because you had the capacity to change your clothes effectively and and and um and shower um and and and take those precautions. Um with regard to the red zone, um after a patient was moved out of a room and into the red zone, um what what did you what did you do with their room? Their their room if they if I mean we didn’t have testing there. So if they had symptoms during COVID um while when we did have testing if they were in that area then uh they would you know they didn’t always pass away uh with COVID. So some patients didn’t but before we had the testing if they developed any sort of symptoms of what we thought were COVID then they stayed in that red zone until those symptoms were well and truly passed and that could be for up to a month. But I did have poorly patients obviously that died in that red zone. My my problem was that patients soon became aware of this area and they didn’t really want to move their own bedrooms. It’s their home. They didn’t want to move to that area because they also realized patients weren’t coming from that area. So they were a bit reluctant to move into that zone. And you explained that became particularly difficult after testing was instituted and people were asymptomatic presenting with no symptoms.
Exactly. Because we realized after testing that you they we could have had potentially our patients in the green zone that were COVID positive. In terms of um isolating them in their own their own rooms, did that pose practical challenges?
Definitely.
What what were those discuss? because everything where the patients are in communal areas, you needed less staff to to observe what the patients were doing. Most most patients are encouraged to get up at most days. There are obviously poorer patients that couldn’t, but most patients were in communal rooms. When we decided that it was safer to keep them in their individual rooms, it it it took a lot more staff to to be able to take their feeds in there, to feed certain patients, to take their food. So it had to be done once you’d moved from one area then sometimes we’d have to take some staff off there to go to another area to do all the feeds. You could be doing 12 to 15 feeds for patients who couldn’t feed themselves. So it took a lot more staff rather than being in a communal dining room. So staffing wise it posed a massive problem indeed.
We’re going to come on to the staffing difficulties that you experienced of course but just turning then to staff and um their facilities. I understand you also had a dirty changing room for them to be able to change in and out of their clothes and that then their clothes would be laundered at the nursing home. So they would remain there. Um
in terms of ventilation within the nursing within your nursing home.
Um you explained that the nature of the building posed its own challenges in that regard.
Yeah.
In the first wave um it was relatively straightforward because you could have the windows open, the doors open, it was spring summer. But as it got to winter, was that possible? We we did ventilate the rooms as best we could, but no, it’s you you can’t have the windows wide open when it’s very cold outside because of the risk of them getting hypothermia. So, it it it was very difficult to ventilate rooms. Um once a patient had left a room, we could we could deep cleanse a room and ventilate it when when a patient had left a room. But while they were in, ventilation was difficult. Now I want to just ask you about um access to suitable personal protective equipment PPE.
Yeah.
As we’ve been referring to it for both um the staff and that you employed and also your residents. You explained that at the beginning you began to stockpile it. Yes.
You ordinarily have some but not not sign not significant quantities.
No. Um is it right that within the nursing home itself you got through a huge amount of PPE because of the nature of the services that you were providing? Yeah. Um, in terms of your carers, they were all trained by the nursing staff and you in relation to how to how to use that PP appropriately and correctly. With regard to um supplies, you encountered difficulties yourself from your ordinary suppliers. Is that right? I did.
And what happened there? They they told when we were um after after the the uh lockdown they told us that they couldn’t supply to us anymore because they were only supplying public health England and and I did the own fortunately I knew the owner of the company because when he was first setting up in business he came to me personally um and and I supported his business throughout and I spoke to him directly and he did agree to send us PPE. me. Um, but he said, “But I I can’t do this for other homes. I don’t know what happened in other homes, but that’s how I got mine. Only by knowing the owner of the company.”
And even with that supply, um, you were still significantly
Oh, I bought a lot of things off Amazon.
Yes. Amazon and DIY shops, local DIY stores. You were also um assisted by the local community as I understand it in terms of them making um thicker gowns, masks,
um theater gowns effectively, arms coverings and other other aspects that you sought and and they they gratefully supplied.
Yeah. our our the village the the the people who were from the village and and also carers relatives made us full masks with with a um a filter in between them and and the operation gowns from duvete covers that old duvet covers that I supplied. Yeah. You explained that in terms of the local the local authority um they provided the surg some surgical mask plastic aprons and gloves but also on one occasion provided goggles.
Yeah. Yeah. And the inquiries heard um already from in both in earlier modules and indeed from experts in relation to the fit not always being appropriate for for the workforce. Did you find that they that those goggles were similarly not fit for purpose in relation to your female staff?
The first the first lot of goggles we were given um they were in a box. There was 600 pairs and they they didn’t fit the staff at all. So Vernon drilled every set of goggles so we could thread um elastic through them at the back to keep them tight to their eyes and fit their head. So we drilled every single one of them. And then it was either a month or six weeks later we were told that they were inappropriate. They didn’t work. So we were to throw them all away. And then you also separately to that had visors made by a local factory.
A local factory made as visors. Yeah. In terms of um costs, you touch upon this within your statement. You explained that the costs of PPE effectively skyrocketed. Absolutely. Yeah. A box of gloves went from being a pound for 100 to10 and more.
Thank you. Um dealing now, if I may, with testing um for your staff and for your residents. Again, you were given details of um testing arrangements initially on that 10th of March meeting.
Yeah.
Um that it would be managed by Public Health Wales on a telephone um booking appointment system and that in terms of that you were having to send your staff to testing centers initially, but soon after that tests were withdrawn.
Yes.
Because they were being prioritized at the time um effectively for the hospitals.
Well, I I didn’t we didn’t know why they were closed down. So, so we had drive-thru uh testing centers quite lo local to us and then all of a sudden they closed. So, we were having to send staff who was symptomatic to test centers uh because they would only test people who were symptomatic. Um one one member they were having to go into England and one member of staff drove to Manchester airport to get tested because there were no test facilities in Wales. And if you looked for it online where you could get a test, it would say every single day no tests available. I want to just tee all if I may with a very practical difficulty that arose in relation to your patients.
Yeah.
Um when you’d considered that they needed a test, you explained the process as was set out by um Public Health Wales that you’d contact the GP.
Yeah.
Um to arrange that and then that in due course um a testing kit and swab would be um brought to you. Yeah. Um but that typically took 48 hours to arrive. What was what was the real life consequence of that?
Well, if if um if you’ve got a very poorly patient and especially if it’s on a weekend, it would take longer on a weekend. But um if you got somebody who was poorly then usually by the time Public Health Wales or the local health board brought one to the home, then um they were dead because they, you know, it just took too long to get them. And I did ask on one occasion, could I use that swab to test another patient and they said to me, “No, they’re all they all got their names and uh written on them.” And and I said, “What happens to it now?” And they said, “They’ll be disposed of.” So it simply could not be used.
No. Couldn’t be used for anybody else.
Now, in relation to testing, um you wrote um to various politicians.
Yeah.
Um and local assembly members on a number of occasions. urging effectively wider scale testing testing to be extended to all care home residents and staff.
I just want to bring up if I um may um one of the emails that you sent on the 4th of May. It’s the INQ598472. This is one of the emails as I say that you you sent and this is your response in due course. This is dated the 4th of May.
And you explain you you set out this here, don’t you? Yeah.
Because what you say is your evidence is showing the very elderly can be asymptomatic until they become suddenly very ill. Yeah.
And then they do not survive longer than 48 hours. And so and you explain, you ask for the test, it takes 36 to 48 hours and by that time the patient is dead. The swab is um wasted. And importantly, what then happens is that that person is not recorded as no
as having COVID 19 because they’ve never been tested.
No. Thank you. I’m going to turn now um if I may um back to the situation um involving the deaths of of residents within your home. And you explain that in the in terms of the preandemic position, it was not unusual. You’d have um a couple of deaths a month from natural causes. And you’ve explained why that is. it’s owing to the cohort of people that you look after um and reflected that demographic. With regard um to the pandemic um you explain within your statement that the types of patients that you often had changed. Yes. And that they were much closer to end of life. Yes.
Themselves and were deteriorating rapidly. Yeah. And so and consequently the number of deaths that you and your colleagues experienced um rose significantly during that time. Um, do you recall the first death of a COVID 19 positive patient of yours?
I do.
Um, can I just ask you um some details about that if I may
on that on that occasion? I understand um that he it was an elderly gentleman who had no lady.
A lady Oh, my apologies. A lady who had become unwell.
Yeah.
And that you requested um a test again from Public Health Wales as we’ve already been through. Um that test subsequently came too late.
Yeah.
In the day. Um but I want to concentrate if I may upon um your requests for um medical assistance and oxygen in particular.
Yeah.
Um her oxygen levels were low.
Yes.
And you sought um a prescription. Is that right? That’s right.
And what response did you get?
Uh the this this lady became quite quite poorly very quickly. She was she was a very fit lady and um I noticed she she became quite poorly. her temperature was rising and um she did start with a bit of a cough. So we we rang the GP. Of course with with the Wi-Fi you don’t we couldn’t get an accurate picture because the Wi-Fi would break up so she couldn’t see her. So I said to the to the GP, she was a locom GP. She wasn’t a local GP. And um I said I need some oxygen for this lady and some antibiotics. So she prescribed the antibiotics and she did say to me, “How do I do the oxygen?” So I said, “Well, you write me a prescription. Will you come and pick it up? Then we take it to the chemist and then we get some oxygen or whichever body we where we take the prescription to and we get the oxygen.” So she said that well the the prescriptions will be here tonight. So we we picked up the prescription from the from the um GP’s practice. By this time it was six o’clock, so everywhere was closed. So I couldn’t get any oxygen. So the very next day I rang the G her own GP who was then back on duty. And I said the same thing to them. Um this lady’s deteriorating overnight. She’s very poorly. I need some oxygen. Um I need to pick we’ve picked up the antibiotics. I need the oxygen. I need it ASAP because our our oxygen levels are dropping down. and she prescribed end of life drugs and we never ever got the oxygen ever. Indeed, you um deal with more generally the issue of oxygen within your statement explaining.
Yes. The the sad thing with this this lady is and it’s it’s it’s hard because the we knew this was our first she was having a drink sometimes. She was out of our first COVID death and she was a lovely lady. Vernon had to go in the room and she just said, “Help me, Vernon. Help me. Help me. I can’t breathe.” Cuz we we couldn’t open the window for it. And I just made him get out because he’d never seen anything like this. We’d never seen anything. It was literally she was literally gasping. But uh and we couldn’t do anything. We didn’t have anything to give her. But he he got very distressed, but not as distressed as her. But she so so it was literally like taking a fish out of water and and they couldn’t they couldn’t they’re suffocating and they couldn’t breathe and without that relief of the oxygen although it’s little we we knew there was not much we could do but there was no relief for this woman. It was horrific. and and unfortunately Vern saw that he didn’t he didn’t get involved with the death of patients but that was horrific and she was just begging him for help but yeah it was by the time we got the swab for her she she’d gone she’d died unfortunately horrifically indeed and in your statement you set out how important oxygen often is in providing that comes out
effectively. Yeah, it it did give them relief. Yeah. Um and just if I may just draw that document back up on screen, your email, you make that point very forcefully there. It’s the one that ends 598472. Um you explain that you have no oxygen generally on site because it was decided a few years ago that you could not keep it there even for emergencies.
No. um it had to be prescribed but instead of um GPS prescribing it they give you end of life drugs instead.
Yeah.
You explain that relatives would be horrified.
Yeah. Yeah. That’s that that’s how we easily it was indeed. And you go on um to provide um a very vivid description below that which is as a patient’s oxygen um saturation level drops with this disease with COVID, they’re gasping for breath and you cannot give any oxygen relief at all.
No.
And as that’s the only treatment um for COVID 19, you found that disgraceful because they’re obviously available at hospitals. Yeah. Um touching then on and continuing on down, you explained that paramedics do not want to admit from care homes.
No. Any of those showing COVID 19 um symptoms.
Was that your experience in terms of your patients? Yes. Within the home?
Yeah. At that point, they were not left they were left with no oxygen relief or any further treatment. this lady as well hadn’t she didn’t get swabbed so she wasn’t counted one of the numbers and I knew it was co in general terms um in with regard to access to health care and hospital treatment um did you experience any other just moving on um to that general topic now if I may um you also had experience of patients um with unrelated
yes
um COVID and related um illnesses to COVID 19.
Yes. Who ambulances refused initially to take to hospital.
Yes. Um that was involving um diabetes with blood sugar levels lowering. Yeah.
But also where occasion fell and was and and received a fracture.
Yes. Yeah. With with the case of the gentleman, he came in um for restbite care. He was waiting for an operation and is he developed an infection. So we’d got a slight temperature. So the um ambulance men said because he got a slight temperature when they came because he he was semicroed because of his his diabetes and I we can give glucose as a nurse but I can’t um sorry we can give um insulin if it’s if they’re hyper but if they’re hypo I can’t give intravenous glucose. So um without getting there we rang an ambulance well the GP told me to ring an ambulance. So the the paramedics came and because he got a slight temperature obviously because he got an infection, they refused to take him and it took me 3 hours to argue for him to be admitted into hospital. And and the ambulance was outside for 3 hours until somebody from ambulance headquarters admitted to take him in. And they said to me, they weren’t local ambulance men. I don’t know where they were from, but they said to me, um, the hospital aren’t going to be very pleased with this. And I, and I went outside the building, and I did say to the ambulance men, it’s not up to you to play God here. You’re just taking in poorly patients into hospital. You don’t get to decide, unfortunately, who lives or dies in this home. But they weren’t very pleased with me. But that was how I felt. I felt that nobody’s speaking up for the my patients. Thank you. And I just want to move to a related topic which is do not attempt um cardopulmonary resuscitation notices. And you explain in your statement that um all GPS have put in place DNA CPRs
on their patients. Was that all of your all of your patients in the care home?
Yeah. Yes. I came back from a meeting and and 50% of them had already had the the paperwork in place because they they’d been sent to them and then they they had all had DNRs in place. And was there to your knowledge any consultation with the patient or their families?
No. I I managed I managed to speak to some of the patients relatives before they this was slightly before lockdown. This was happening. This was before lockdown and two of the rel relatives um I managed to get in touch with them and they got hold of their GP and it was removed because they they didn’t agree with it. They spoke to their parents about it and they didn’t want it in place either and it was removed. That’s the only two um prior to lockdown if there were if where there were um those notices in place would nonetheless that individual be taken to hospital if necessary? What if if what sorry
if there was a notice in place um for for an individual patient of yours? Yes.
Would they nonetheless be taken to hospital for treatment? Yes.
Did you see any change in that during the pandemic?
Yes. Um we we found that um ambulance drivers and paramedics were were not happy to to transport any patients to hospital if if that needs like when that lady fell unless there was a DNR in place. Okay. And I’d never come across that before. So it that that was a relatively new consequence to me.
Thank you. I now want to move on if I may just to you’ve touched upon the impact upon your patients already in the home.
Um obviously um things were significantly restricted. Did you see any decline in them their their mental, cognitive and physical abilities as a consequence
of being isolated?
Being isolated.
Yeah. What what what the what we did was those who could um we gave them all or I asked the relatives to bring in individual mobile phones so they could speak to them over the phone because we we didn’t as I say we didn’t have very good Wi-Fi so they they couldn’t FaceTime anybody or their relatives but yes they did become they became quite sad and isolated but I must admit they they knew what what what was going on even though my patients were quite poorly me. I didn’t have many with dementia,
so they knew what was going on and they were they were quite happy to be isolated from other patients, but um but their their mental health did suffer because of that,
of course. And you explain, and I’m not going to go through it in detail, the um various steps you took to try to ensure that people could have visits.
Yeah.
Um including um effectively building an atrium type visiting booth so that pe so that individuals could come. That was during the second wave.
Indeed. During the second wave, so they could they could speak um to their relatives and have those visits.
Yeah.
Um and in terms of your staff and the impact on your staff, how would you describe that?
They were terrified. They worked non-stop. Um those that could there were some that had they couldn’t come to work anymore because they were shielding. They had relatives of their own home that they were they were protecting. So a lot of staff then went off to be furoughed really because they couldn’t do that. Um but people with with young children we they were terrified. They didn’t know who got COVID who hadn’t got COVID if they were taking it home to their families. So we we had a caravan on site. So a lot of of staff and we had an annex upstairs an attic upstairs. So a lot of the staff didn’t go home at all till their days off. So they came on duty and worked their shift and then they slept on site and then they came back to work until their days off and then they would leave everything behind and go home so they so they didn’t risk taking it home. But they were all absolutely terrified. And after after and but as you say, they were they worked so hard. But after after we lost that patient, they became increasingly worried because we we knew that that was an abnormal death and we knew it wasn’t a normal average death. And so we knew this lady had got COVID. So a lot more staff went off um that had got young children who were frightened. And at at one time there because it was spring and summer as well, we had a lot of hay fever sufferers. Of course, because we got no testing at all, if they got the slightest sniffle, they weren’t allowed in. So, in one week alone, I had 15 staff off with hay fever symptoms, but I couldn’t get any of them tested.
Indeed. and just dealing with those staff shortages. I understand that where you did where staff were unable to work that you um or or other members of staff would effectively be picking up those shifts, working double shifts.
We were we were working 16 20 hours. Yeah.
Um because feed so there was he was allocated five patients who were who who we would sit and chat to and give them their breakfast and give them the so in between doing all this he would come in. So we’d get up give them their breakfast. these five patients or take their breakfast to the rooms or feed those who needed feeding. And then he he’d start and do his bit and then he’d come back at lunchtime and do his five. Then he’d go back out and and get some more supplies in or repair whatever we had to repair and then come back at tea time and then you know feed them feed the five patients again every single day. This was so if if every one of them or one of them would say they fancied fish and chips or they fancied something, he’d go and get them something different because these five patients were were his. So he was he would treat them to a cherry or whatever and go and take them sherry or a glass of whiskey. But um yeah, his his workload did increase. But also what also um affected that unbeknown to us was he was watching this on the TV. Well, we both were every single day. We didn’t There was a rule in the house that we don’t norally put the TV on till 6:00 at night unless grandchildren were there. But this was on from morning till night. Our TV was on when we were watching what was developing every single day. And um when when um Boris Johnson said that they were going to test in in care homes, there was such a relief for us all to start being tested. And and on that very same week, uh, Mr. Drakeford turned that around. He he said they won’t be doing it in in Welsh care homes in in Wales because he didn’t see well in fact his words were the resources would be sp better spent spent elsewhere. Um, we just we just sat back in the chair and he just said to me, “What do we do now?” And I said, “I don’t know. I don’t know. we just keep working. And you explain you explain very vividly in your statement that Vernon began to lose weight. He did.
Um
he became as you say more depressed effectively.
Yeah.
Um he’d seen an awful lot of horrific situations arising within the home in terms of people dying at that stage.
Um and you tried to reassure him
at various points including saying soon we we will have some rest bite. We will go on a break.
Yeah. I I said to him at the end of June said the end of June, we’re going to Spain no matter what. We are going to June. We are going to Spain. [Applause] That’s the last thing I said to
No, I appreciate that, Miss Hul. Um and sadly, um on the 21st of May, um you were notified, weren’t you, by an officer? Well, this was on the Wednesday, the 20th. And he we were having a glass of cherry outside, funny enough. And I said, “We’re going to go to Spain.” And then he came back down and said, “How are we going to go with this with this epidemic, with this pandemic?” And I said, “We put our g our gloves and masks on and we just go. We just go.” And then on the Thursday, um he he’d gone to to work as I well he had gone to work. He’d even fed his patients. He’s fed his patients and I thought he’d gone shopping and then the police came and told me that unfortunately he’d been found in the police car park and had shot himself in the police car park. I think that’s
Thank you, Mr. Hoff. I think that’s as far as we need to go today. Thank you very much.
You’ve been so extraordinary brave and I know it’s in your statement and members of the public may not know, but
given how you were treated by certain sections of the media
Yeah. Yeah.
When your husband’s death became public.
Yeah.
Um I I can’t tell you how impressed I am by the courage that you’ve shown.
Oh, thank you.
In um coming to tell us because what you’ve had to tell the inquiry and indeed the public is so important. Um it’s obviously it covers all sorts of different aspects of the COVID pandemic and we are extremely grateful to you. Thank you. I I just think the public should know
exactly
that it was extremely hard. We had nothing in the care homes at all. Nothing. No help.
I hope you feel it’s been of help. I can’t imagine what it’s like reliving it all. Yes, it’s fine.
Well, thank you very much indeed. And we’re going to break now and I know that um a representative will come and see you and talk to you
um before you go. So, and don’t forget we also have counseling team here if you need it.
That’s all right. Thank you. I shall return at 20 Carrie,
my lady, may I call please, Professor Laura Shalcross. after. I do solemnly
I do solemnly sincerely and truly
sincerely and truly declare and affirm
declare and affirm that the evidence I shall give
that the evidence I shall give
shall be the truth shall be the truth
the whole truth
the whole truth
and nothing but the truth and nothing but the truth
thank you professor shross thank you for your patience we got to as soon as we could but thank you
professor your full name please
uh Laura Jame Francis Shross
I hope you have in front of you your statement ending uh 61317 77 dated the 2nd of May of this year.
I do.
I’m going to ask you, professor, a number of questions about what came to be known as the Vivaldi study. But before I do, can I just introduce you to everyone? I believe you are the professor of public health and translational data science, director of the Institute of Health Informatics at UCL, and you hold the National Institute for Health and Care Research research professorship.
Yes, that’s right. You are um trained as a junior doctor. Yep.
Uh you trained in epidemiology and population health. You have had a number of uh research published in high impact journals. I won’t name them all. And you have um conducted a number of pieces of published research on infection um that are relevant to adult social care.
Yes, that’s right. And if anyone wishes to um read more about the professor’s um background, they can do so at paragraphs three to five of her statement. May I um turn though please firstly to the Vivaldi project. Um could you just help us please um it was set up uh by you to look at national COVID 19 in care homes. It was funded by the department of health and social care. Is that right? Yes, that is.
And then in due course subsequently funded by what came to be known as the UK Health Security Agency.
Yes, that’s right.
And just as an overview, can you tell us what was the study set up to do?
And so do you mean for the survey initially? Well, there’s there’s two parts of the study. There’s a survey and a um study. But just generally speaking, what was the aim of Vivvaldi?
Okay. So very broadly speaking, the aim of Vivaldi was to generate evidence to support the public health response to COVID in care homes and we did that as you said through a survey which was done very quickly and through a cohort study which was done over a three-year period ultimately.
Can I put it this way? Was it designed to try and understand why there were such high infection rates in care homes?
Yes, that’s right. So it was really recognizing that we didn’t have the data or the evidence that we needed to understand what was going on. And so a research study was our way of trying to generate that information quickly. Right. And was also designed to try and understand what disease control we called it sometimes IPC measures could be used to try and mitigate the risk of the disease in care homes.
Yeah. Exactly. So yes. Now, I think you um first got involved when you were approached by Professor Susan Hopkins of PHE as it then was on the 8th of May of 2020.
That’s right. Right. Can I ask you though at the outset given that there was involvement by PHE and funding by the department of health and UKHSA in due course um do you consider that Valdi was nonetheless a independent study of the infection rates and like in care homes?
Yes absolutely I do. So the so we had complete when I say we the research team had total control over the design and the analysis of all the data in the study. So if anyone were to think that because you were being paid by the department and UKHSA you were therefore singing their tune would that be right right or wrong?
That would be absolutely wrong. Thank you.
As far as research products are concerned, forgive me because I’m not an academic so I don’t necessarily know that much but I mean it’s perfectly common for government departments whereas to sponsor research that remains independent even though they may be the purse holder.
That’s right. So for for example the National Institute for Health and Care Research received their funding from the government um but all the research is done independently and that’s a very uh traditional model that’s used for research. Yes.
Thank you.
Thank you very much. Um I think you set out in your um statement professor that you were involved in a number of meetings um convened by the health data research UK organization which brought together a number of researchers and in due course became the study that you set up. Is that right?
So my recall is actually that it was only one meeting for health data research UK. It was more that the individuals who attended that meeting, some of those people then became involved in the SAGE social care working group.
Thank you very much. And that brings me on to the Sage uh social care working group. I think that uh from May 2020, the 19th of May 2020 onwards, you began attending the Sage Social Care Working Group to report on progress. That’s right.
So you’re asked to set it up by Professor Hopkins on the 9th of May. From the 19th of May onwards, you’re reporting on progress. And I think it’s a few months later that you actually start to um produce the findings and report those as you go along.
So I I would say that we um that the attendance at the sage social care working group was more as part of that group and being somebody who was involved in research. So partly for the catch 19 study as well and our formal reporting was initially to the data debrief group at the department of health and social care and there was a a very much a requirement that we would report into that group and as we started doing that it made sense to do the same into the sage social care working group. Let me deal with that straight away. I think you say at your paragraph 14, there were two formal mechanisms by which Valdi’s results were shared. One was with the DHSC data debrief group. That’s right. Is that correct? Which met on a Thursday and then you also reported into the SAGE social care working group which met on a Friday.
That’s right. But we were funded and commissioned via the data debrief group in pillar 4. So that was really the line management for the study. Given though that you were um attending the SAGE meetings on a Friday, how receptive did you find SAGE to the Valdi project and its findings in due course? So I would say once we were fully established and we were generating useful evidence absolutely very receptive everybody was very keen to have as much data as possible to try and inform uh policy and decision-m I would say at the beginning when we were setting the study up and this was particularly as the emergence of the data within NHS foundry occurred uh there was perhaps a little tension about different types of data and uh which kinds of data might be priority poritized. So I I think it took a bit of time for the value of what we were doing to be acknowledged. Um but once we were up and running, absolutely everybody was very receptive to the information we were putting out.
Can I just ask you please about some of the things you just said in that last answer because people may not be familiar with the various data streams and how they’re collected and collected. Just tell us what what is the NHS data foundry.
So NHS foundry was set up during the pandemic to support the response. uh it was um uh managed by NHS England and it brought together lots of different kinds of data sets including the testing data in one location to enable people to conduct research using those data sets to support the pandemic response and so it was an incredibly valuable source of information for us in the Vivaldi study and so when you said there was perhaps a little tension between different types of data can you just give us a flavor of what that tension was please
I think there are wellestablished systems that are used for public health disease monitoring. Um, and this was a new one and it was just taking some time for that for the for the quality of the data the opportunities around this data to be made clear to everybody. So I think it was largely around the unfamiliarity. It was just a new thing.
May I ask you this? Did you get any sense that there were people at Sage or in the DHSSE data debrief meetings that didn’t want to know how bad the infection rates were in care homes? I don’t think I’m well placed to answer that question. So I I work closely with colleagues at the Department of Health and Social Care and I think that some of the navigation of of how to maximize the impact of our work was done by them not by me and so I was one step removed from it. Can I go back to the beginning when Vivaldi was set up and I think you say that you um first attended a SAGE uh social care working group meeting on the 19th of May. I’d like to ask you about a paper that came out the week before and if it helps you professor it’s in your tab 14 in your bundle and could I have up on screen please 253601. This is a um paper called the care homes analysis from the 12th of May of 2020. So the week before you started at attending the meetings. First things first, did you see this paper at the time? I don’t recall seeing this paper at the time. If we go please to page two of the paper, we can see at the top there a number of questions that uh were to be considered by Sage. some of which seem to impinge on some of the work that Vivaldi was doing potentially. They wanted to know does Sage support the conclusions presented about the characteristics and vulnerability of care homes based on moderate data? to sage agree there’s strong confidence there’s been a decline in all cause mortality in c by the 12th of May we’re talking about there’s recommendations on testing does sage support the need for further data collection and does sage support the recommendations on f future research uh uh priorities and then can I just ask you about the next bit um are there any proposed next step expand analyses to consider risks in domicillary care Were you asked as part of Aaldi to look at the impact in relation to domicillary care at all?
No, not at all. No.
Do you have a view though given your understanding of the social care sector and your previous involvement in research as to whether there is in fact enough research on the impact of infectious diseases on the domicillary care side of the care sector
purely in relation to the pandemic. So I think that this was a gap that was identified um but it was also recognized how difficult it was to try and address it and are you able to give us a flavor of those difficulties? I think one of the key challenges is around data and identifying the population and it’s hard to do that in care homes but it’s logarithmically harder to do that for domicillary care and that that’s the one of the key challenges but I I really had I I recognized it as a problem but it was not something that I had any involvement in.
Thank you. Can I just turn to page um five though which may be something more within your remit of this document and one can see there that this um paper recognized some data gaps and if one looks at the second bullet point a data cap gap was considered to be better linkage between hospital discharge notes and care home readmission would help to assess more accurately the connectedness stroke transmission from hospital and care home settings and vice versa. they would discover uh explore options moving forward. Did you have any difficulty when you were conducting the Vivaldi study of linking hospital discharge notes and care home readmissions? It’s just as a general question.
I mean my my first question would be what do these words mean exactly? Because hospital discharge notes, there’s no way that we would be able to get access to that information. If they mean routine data about dates that people were discharged from hospitals and dates that people were admitted to care homes, that was something that we could do potentially. Um, but it’s but it’s quite challenging because of of issues around the data. And what I would say is that this particular report preceded my involvement.
Yeah. Yeah. So do I take it from that that when we come on to look at what access to data uh Valdi had it did not include hospital discharge notes?
No.
So you didn’t know patient A left with this medication these care needs they’ve been in and had that treatment done. Nothing like that at all.
Sadly that information does not exist in an accessible format. Okay. Um at page six of this document there is reference to largecale uh implementation of testing in care homes and it said there that it’s central to preventing and managing outbreaks. testing can only support reduction of infection rates if coupled with actions to reduce contacts with positive cases and infection control more generally. And then if one looks there’s bullet points and I’m going to summarize them as um recommendations as to how to potentially address that problem. Testing clearly high-risk uh care homes that had not reported an outbreak. testing residents and staff, weekly regular testing. Looking at those bullet points there, professor, do you agree that those recommendations are necessary and that we need to know the answers to those um particular outcomes? So I think broadly speaking we needed testing in care homes and some of these um points are around trying to prioritize the kinds of testing recognizing that testing capacity was very limited at this point in the pandemic. We’re going to come on to that when we look at some of the results of Vivaldi in a moment. um you attended I think in due course 31 of 38 meetings of the social care working group and presumably you also attended a similar number of the DHS uh C debrief group. Can I ask you uh this in relation to DHSC? How helpful did you consider DHSC to be in helping get Valdi up and running? Um so in terms of the project management support we received it was it was excellent. So I I I really felt that we were able to move very quickly. Um we were able to problem solve so to do things at a pace that is not usually possible for research. So examples being ethical approvals will usually take six weeks. We were able to get this done in a couple of days. um we needed to problem solve around things like accessing PPE um how do we dispose of PPE and care homes that are taking part in the study and all of these were solved quickly by working in partnership with DHSC so that those elements of the study worked really well. Uh you say in your statement though um we were able to get the survey and the cohort study very quickly up and running with strong project management. However, there was a lack of clarity about how the commissioning and funding processes would work for the study. Can you just give us an idea of what you meant there? Yeah, and I guess I should preface this with it’s it was such an unusual situation to be in. It’s not normal that you set up a research study in this way. So we started the work. Um I was very lucky that UCL were quite willing to um be supportive and there were financial implications that were just um put up with by the university. But I think as time wore on it became clear that this was not going to be a six-month project. And so we were funded for 12 months in the first instance and we had to then rebid for funding which meant writing business cases which meant and and this was quite um It was time consuming in a sense. Um we had to justify u certain requests for um for you know computers or for additional laboratory testing those kind of things and uh it didn’t feel seamless. I think when you’re working with organizations that are used to interacting with universities a lot of this is understood. Um we were working quite often with consultants who’ve been brought in from other companies and so it it took up a lot of time. So I think it could have been more streamlined in how we were working together from a a commissioning and funding perspective. That was particularly in relation to the cohort study.
All right. Well, we’re going to come on to the cohort study in a moment, but just um standing back for a moment. You said sort of the pace was good at the beginning. Can you give us an idea of how long normally it takes to set up a study and how long it took to set up Vivaldi?
Wow. Uh so um normally uh you would well in terms of funding it could take 12 months. So that’s the kind and writing protocols you would take two months perhaps to write a protocol. We were writing protocols in 24 hours. Um everything was being done at blistering pace because we recognized there was a desperate need for information and we were trying very hard to support that. Can I see please disagree with this if if I’ve got it wrong, but if the sort of the bureaucratic nature of perhaps some of the um things that need to be gone through were lifted, did that help speed up the process? But in normal time, afraid bureaucracy reigns.
Yes, that’s absolutely right. And and we’ve definitely seen the return of bureaucracy post pandemic. Um yes. Okay. Um can I ask you please about uh your paragraph nine professor and the vivaldi study itself and why you say it was necessary to set up this study. Yes. Um so so I think the striking when I started doing this work I’m sure everybody in this room was very aware of the newspaper headlines about deaths in care homes and the tragedies that were unfolding. Um but what was very clear is that there just wasn’t any data to support that. And so if you can’t measure infections or measure outbreaks or find out what’s happening to people who’ve been infected, it’s very difficult to know how to how to try and help. And so uh there was a real need for data and evidence to try and understand what was going on and as you said earlier to try and identify the kinds of strategies that might work to try and reduce the spread of infection and outbreaks. I mean I think up on our screen is start of your paragraph n where you say there are no systems which routinely monitor infections or hospital admissions in individual care home residents or staff. Obviously there are the notifications to the public health teams when there’s an outbreak.
But you say establishing a research study was arguably the quickest way to address the gap in evidence on the burden of COVID 19 in staff and residents. All right. So this was needed to be done otherwise we weren’t going to know roots of transmission and how best to potentially what measures might mitigate transmission.
Exactly. And also the ability to respond to the emerging questions. Can I ask you this? Um clearly there was the um public health teams that were notified when there was an outbreak of infection. Are you able to explain in what ways the reporting of infections to public health teams was an effective means of managing outbreaks uh in the first instance and what difference testing might have made uh to the managing of outbreaks in care homes? So the standard way this operates so precoid and obviously that was still the system in place at the beginning of the pandemic is that um uh care homes are requested to notify their local health protection teams when they suspect they have an outbreak. That’s usually done by phone call and then those health protection teams will go in and they will do some testing and it’s usually up to around five cases that get tested. So you are always going to be under ascetaining the number of people who have an infection and obviously when you have a pandemic like COVID you have a very big proportion of the home that are infected. So that was the setup at the start of the pandemic and that was how public health agencies were able to try and understand what was going on. But once mass testing was brought in, it gave a much clearer picture of the burden of symptomatic and asymptomatic infection and the extent of those infections and outbreaks.
Can I see if I’ve understood that correctly? So clearly there is an outbreak. The h public health team are notified. They will test perhaps five or 50 residents. Let’s say
that’s right.
The five might test positive. There’ll be five recorded cases. there could be 45 other people in the home that are positive and that would not be recorded in the the health reporting data.
So I I anticipate in that in that situation they would assume that many people had been infected but there wouldn’t be any testing data to to support that.
But you wouldn’t know the precise numbers of the remaining 45 people who were positive and who were negative. All right. Hence why you say there could be significant under reporting.
Yes. Um the study as you have uh alluded to a moment ago um was split into two different work streams if I can call them that a survey and the cohort study and can I look at each in turn and may we start please with the survey and if it helps you professor I’m at your paragraph 12 just tell us what was the survey designed to do and who was it designed to survey.
Yes. So, uh it was designed to answer two key questions. So, the first was how many people have been infected with COVID care home staff and residents in wave 1 and the second was to try and get insights into the kinds of strategies that might help to reduce outbreaks and infections in those homes. Um and it we did this by surveying care home managers. So, that that was the the population. I think you say in your statement that uh the care homes it was a one-off questionnaire of care home managers. Um we have I think at your tab seven a summary of the project. Can I ask please to call up on screen INQ544939 and go to page two please of the document. But set out there are the aims and objectives of the survey. So by speaking to the care home managers are going to collect data on the number of staff and residents in each care home to record care home characteristics. What is meant by the characteristics? So this is really trying to address those data gaps as quickly as possible. So the first is to say we don’t know how many people are in these care homes. So we can’t estimate the proportion infected because we don’t have the denominator. And the second around characteristics are things like is it a for-profit care home or a notfor-profit care home. Um what kinds of disease control measures IPC measures are being used in these homes to try and help us understand what seems to be working and what’s not working to inform policy on how to spread and limit the spread of infection.
Were there any um particular care homes that were included or excluded? Um so we so eligible care homes were those providing care to over 65s or providing dementia care and I think in due course the survey took about 30 minutes to conduct.
That’s right. It was conducted by Ipsos MI and there were um attempts to contact 8,634 of the eligible care homes. um they were analyzed and in due course it came out that there were 5,126 care homes that were included in the study and can you help us is that a large number of care homes to survey mediums give us a sense of the scale of that survey
so for a survey that’s large um and it I think that you may suggest that 56% response rate’s not very good but given given the pandemic given the other pressures on care homes that’s I In my view, that is actually a pretty good response rate. Uh it’s a lot of care homes that we were able to collect data on. The survey itself was conducted over the 26th of May to the 19th of June 2020. Is that right? And it was um asking though the care home managers about things that had happened before that date range. Have I got that right?
You have got that right. And the purpose of that was because because of the question that we’d been set. So we were trying to say how many people have been infected in wave one and hence we need to go back in time recognizing that the testing data wasn’t in place. So we couldn’t get this information easily from other sources from testing data itself.
We’ll come on to the specifics in in a minute. Um but can I go through um paragraph 27 of your statement professor which gives a little more detail to how the survey was conducted. You can see the dates there. The early findings were communicated online by the ONS on the 3rd of July. And then if you can see, professor, the main findings from the survey was an estimate of the proportion of care home residents and staff who tested positive based on the number of cases reported by the care home managers.
That’s right.
So this relied in part on any records or memory that they had of the residents and staff that had returned a positive test.
That’s right. And the reason we did it like that is because at that time people were getting tested in all sorts of different locations. And if they were tested in the care home, they might get recorded as a staff member or a resident. But if they went to a mass testing center outside the care home, we would miss them.
Ah, okay.
And so it was the best way to try and get that comprehensive assessment.
And the survey found there was 10 and a half% of care home residents who tested positive. Yes. And 3.8% of staff who tested positive. But I think you say at the bottom of that paragraph there, it was important to emphasize testing capacity in care homes was very limited during the first wave of the pandemic. So many individuals who were infected with CO did not undergo PCR testing.
That’s right.
So did you um can you help us? Were the care home managers asked any questions about whether people had the symptoms of COVID or was it literally did they test positive or did they not test positive? So we did ask about those things but because of the challenges of trying to ascertain what’s COVID, what’s flu, we were interested in who had tested positive. So of course this is an underestimate but we were trying to get some kind of baseline quickly to give us an idea of the sort of minimum proportion of people who tested positive.
All right. Can I ask you please though about something in the middle of that paragraph where you say that survey responses were linked to individual level PCR test results between the 30th of April and the 13th of June through the national testing program. Can you help us with how the survey responses were linked to the PCR tests?
Yes. So um when we as you can appreciate we were setting all of these studies up very quickly and lots of things were changing in the background. So when we started talking about this study, one idea was that we would use the testing, the mass testing data as our outcome so that we would not be asking care home managers, we would be using the PCR test results. But as things evolved, we realized the testing data wasn’t going to be there in time. And so we had a a roll out of um of one-off testing per care home. And so we use that alongside asking the care home managers. But whenever you design a research study, you have to say what your primary outcome is. So our primary outcome was asking the care home managers. And then our secondary way of trying to look at this was looking at the testing data recognizing that it was going to be even more limited than asking uh care home managers. Let’s come to the um findings in your paragraph 30 uh please professor. We’ll perhaps have it on screen and I’d like to take this a perhaps a lot more slowly than I have been to date. You had data from over 160,000 residents and nearly 250,000 staff members across the 5,126 care homes. Clearly, the proportions of testing positive, the ones we’ve just looked at. For the reasons you’ve explained, it would be an underestimate because it was based on the manager’s recall. The number of people infected of course were not necessarily tested in the first wave, but there were 53% of care homes that reported outbreaks and 40 sorry 469 care homes reported large outbreaks which are defined as what please?
Uh so we define them and this was an arbitrary definition that we created because there isn’t one to the best of my knowledge. So we define this as homes with more than a third um of the total number of residents and staff combined testing positive or those with more than 20 residents and staff combined testing positive. And this was really just to try and get an assessment of the difference between having an outbreak which at this point I believe was defined as just one one positive in the care home because everybody was making the assumption there were lots of other cases that weren’t being tested versus a large outbreak. Based on that, you concluded that almost half or all care homes remained vulnerable to COVID in July 2020 because they had not had cases in the first wave. And can you explain, professor, the significance of that finding, please, and as far as policy might be concerned? So, it’s really recognizing that um that the problem was going to continue that all of these care homes we could potentially just see a repeat of what we saw in wave 1 if we were not able to instigate effective control measures to try and reduce the spread of infection. A warning shot then for the waves that then came
yes
afterwards. um to paragraph 31 please. Clearly the other aspect of the survey was to look at use of de disease control measures as you call them to reduce transmission and the conclusions were that reduced transmission of COVID from staff was associated with adequate sick pay, minimal use of agency staff and increased staff to bed ratio. more staff per beds. Correct.
Presumably.
Yes.
Um and staff cohorting with either infected or uninfected residents.
Yes.
Can you help us with how the Valdi came to those conclusions please?
Yes. So um so we looked in Vivaldi at four different outcomes. So we looked at in risk the infections in residents, infections in staff, outbreaks and large outbreaks. And then in our questionnaires, we asked about those kinds of of measures. So things like, do you use agency staff? Do you never use them? Do you sometimes use them? Um, how often do your staff work across care homes? Very frequently, not very frequently, and so forth. And so we were able to look at the homes reporting in each of those categories and then compare that to the number of infections or the out risk, the number of outbreaks um in those care homes. And then by doing our epidemiological analysis that gives us a sense of which of those factors seem to be most strongly associated with the risk of infection and and outbreaks. And yeah, that’s that’s how so they were the findings that helped reduce the transmission of COVID. Looking at the findings in relation to increased transmission, Davaldi finded from residents that was associated with an increased number of new admissions to the facility. Can I just pause there? Does that mean admissions from either the community or hospitals?
Yes. Yeah. And poor compliance with isolation procedures? Yes.
So if you didn’t have good IPC and there were a large number of admissions, there was a likelihood of increased transmission of COVID in the care home.
That’s right. I think the phrasing of the question was about the difficulty in isolating residents and because obviously with residents with dementia, it can be extremely challenging to try and ask residents to stay in their rooms. Um if we just stay with your paragraph 31 um you can see there that you reported the results to the date of debrief committee on the 11th of June the social care uh sorry 18th and there’s I think 25th and I will come on to the different um meetings themselves in a moment and the task force and then to a final conclusions in July were the findings being refined if I can put it like that as the study progressed. Exactly. So we were accumulating data all the time as the as the questionnaires were being rolled out across care homes by Ipsos MI data was coming into NHS foundry and we were analyzing that in real time and then looking at those data and trying to share them as widely as we could because we recognized it was our job to try and inform policy making and yeah now you say it’s important to note that the Valdi survey was a cross-sectional survey which can identify associations between the risk factors for infections and outcomes but cannot be used to infer causality. Would you help put that into layman’s terms please?
Yes. Yes. So what that means is in a cross-sectional study you are asking questions about your exposures. So what I mean by that are things like did you use agency staff, how many new admissions you had. the the the factors that you are interested in as being potentially important and your outcomes, but you’re asking those questions at the same time, which means you don’t know if A and A causes B or if B causes A. Other kinds of studies let you start off by looking at at your agency staff and then you would follow people over time and see what happens. And that gives you a a better chance of being able to understand cause and effect, right?
But we weren’t able to do that.
No, not in this kind of study. Um, thank you very much. That that can come down. I think you said then obviously you were reporting as the findings emerged. There was a main message on the 11th of June to the data debrief to highlight the risk that staff working across multiple sites posed a risk to residents. on the 18th of June. Again, findings suggested that staff working across multiple sites might increase residents risk of COVID uh 19 and that staff working across the sites increase the risk of outbreaks. And on the 25th of June, you highlighted that regular use of agency staff was likely to be an important risk factor for infection in residents and staff.
Yes.
And so there we are now at the end of June 2020. Um can I just ask you about those meetings? Obviously you were reporting to the de data debrief and then into Sage as well. Was there any difficulty in you attending the Sage Care Home working group in June 2020 to present those various findings? Um so so my recall of this was that once we had findings to present it was there was an expectation on us that we would report in each week. Um so not difficulties associated with that that I recall.
Okay.
And can I um just conclude with dealing with the survey by looking at your paragraph 37 and I think professor there’s something you want to correct.
Oh yes
in paragraph 37.
Yes. So say well we’ll pull it up on screen because then I think people will be able to follow and and make the correction in their own minds. But you said the survey had a significant impact on policy because you could generate the results quickly time there was an absence of evidence. The findings suggested staff were more likely to infect residents than vice versa which informed the decision to focus limited testing capacity for COVID in the first wave on residents rather than staff. Um the setup of the uh social care infection control fund was supported by two of the recommendations from Valdi to minimize COVID transmission that movement of care workers between sites should cease and that care worker sick pay should be topped up by the government. That’s the nuts and bolts of that paragraph but help us with the correction that you’d like to make.
Yeah. So apologies for this. So in the sentence that begins our preliminary findings um I’ve accidentally reversed. So it should be uh so I’ll read the whole sentence for clarity. Our preliminary findings suggesting that staff were more likely to infect residents than vice versa informed the decision to focus limited testing capacity for SARS cof 2 in the first wave of the pandemic on staff rather than residents. So those two words have been reversed and apologies for that. No. So that does tend to suggest that it was staff that were more likely to infect infect residents than the other way round. Have I got that right?
That’s correct. Yeah.
That’s not to say that that was an intentional um infection by them. Uh quite the opposite. Hence why you then made the recommendations that sick pay should be topped up and there needed to be more work done in relation to movement of care workers between sites as a way of helping reduce the risk of transmission of COVID. Correct. Now um clearly you made the findings. Can you help with um what was supposed to happen with the findings thereafter and the extent to which you were aware that they were used to inform policy? So my understanding is that they were very much used to inform policy. um we were presenting this data everywhere all the time um and often at very short notice and uh I think the the credit to this really goes to my colleague in DHSC who was really trying extremely hard to make sure that everybody who needed to know about these findings knew about them. But I I think I think we were able to get the information under the noses of the of the people who were able to make decisions and and that was a a very serious priority for us. Given that on any view there are rather bleak findings coming from the Valdi study. Did you get any sense that people didn’t want to hear the results that Vivaldi was producing? Um I don’t know that it’s not that they didn’t want to hear the results. I think that perhaps at the beginning there was um were we were we treading on toes a little? there are organizations whose job it is to provide this kind of data and um and perhaps we were filling a gap that maybe it shouldn’t have existed. I think that but I think very quickly everybody was very focused on trying to trying to get the data that was required and so people just wanted data to inform policy. Um I’d like to ask you about the Valdi findings and the extent to which they impinge on the discharge policy to expedite um hospital discharges to care homes. And can I ask you please professor to look at your paragraph 38. I think as with most surveys and indeed studies, there are caveats that needed to be applied to this. And I think you say in your statement that the questionnaire that was devised um some of the questions were poorly completed by care home managers. Only 80% of the 5,126 care homes responded to the question about the number of admissions since the 1st of March. I that’s the question about admissions from hospital. Is that the question you mean?
Yes, that’s right. Yeah.
And only 40% of care home managers answer the question on the number of residents who returned from hospital and the subset with COVID 19. So those um perhaps unanswered questions by some of the respondents in your view um undermine or um mean that the favaldi findings don’t hold water.
So we deliberately didn’t report on the latter of those two. So we included new admissions because it was 80% complete and that seems like a a fairly reasonable amount of data and we also did multiple imputation on those as well I believe in our in our um in our work which is where you try and account for the missingness in that data but we didn’t use the other data sets because it was such a large proportion of missingness uh we just I I strongly felt it was too um it was too risky to try and draw conclusions based on that data and And I I I was thinking about this again and I think one of the reasons why it was incomplete is because those questions were added in late into the questionnaire.
Thank you. I think it’s important to remember in any event, as I think we’ve said before, we were relying on the manager’s recall of um who had come back into the care home and where they’d come back from hospital and whether they’d come back from hospital with COVID 19. And of course at the time in f certainly between 1 of March and about the 15th of April in England testing for CO 19 was extremely limited.
Yes.
I I think there’s also this risk of um reverse causality which is where the direction is the wrong way round and if you if people are very worried and concerned that discharge from hospital into care homes is causing this problem then they may be more likely to remember it. And so it’s this is a real challenge with asking people to remember what happened. You make the point at your bottom of your paragraph 39. You were unable to account for other routes of transmission such as ingress from in staff or visitors. Can you help us with what you mean by there and why we need to potentially factor that into the Valdi findings? Yeah, I I wonder if the easiest way to think about this is is the diagram that’s the uh I think it’s figure one um in the CMO technical report.
Could we have up on screen please? Um it’s your tab five, professor. Thank you. INQ203933 and I think it’s the one with the um all the roots into
is that the one you’re talking about? All right, just pause a moment while we bring it up on screen. 203933_0298. Thank you. It does it does appear in the technical report as well, but fact I think we’ve taken it out of a slightly different document. 298 at the bottom. There we are. Thank you very much. Um, this is a schematic showing all the different routes of COVID 19 into care homes, staff, visiting professionals, visitors of residents, residents leaving the care home for whatever reason, new admissions from the community, residents coming back from hospital, and indeed new admissions from hospital. So there’s seven potential routes by which COVID can enter the care home. And can you help us then by when you say we were unable to account for the other routes of transmission, why this document helps explain why you couldn’t account for those other roots?
Yeah, I I think this is a very helpful diagram because what it does is illustrate all the different ways in which infection can get into a care home. But I think it’s also important to realize that these changed. This was a dynamic thing. So early in the pandemic when people could still visit for example visitors could potentially bring infection in later in the pandemic that was no longer a mechanism. So so this is changing all the time and it also play probably played out differently across different regions in the country. You know for example perhaps uh we saw different patterns with ingress of infection in London early in the pandemic relative to some other parts. So the challenge is that if you really want to understand which of these roots is most important, you need to collect data on all of them. And that requires very good testing across all of these different mechanisms which we never had. And so in Vivaldi there are some of these that we’re able to say something about particularly the role of staff something about people coming in uh new admissions but we didn’t collect data on visitors. We didn’t collect good data on people coming in from hospital and so we can’t say we we cannot give accurate information on the relative contribution of these different mechanisms. And so to be able to say for example that um core staff were the main route of transmission, you would nonetheless need to test all of the others people on here to be able to work out that that that was the main route.
Yes, that’s my view.
So essentially you’d have to test everyone. Yes.
Um, and would a one-off testing regime tell you which was the main route of transmission?
It’s going to probably depend at different times in the pandemic. So, it’s a it’s a very difficult uh question to answer. So, you can uh say what is a route but not necessarily what is the main route or roots
in in based on data from Baldi. Yes. Um that brings me on um professor if I may to a question that you were asked by the um inquiry and I think could we have up on screen your paragraph 43. I think you are aware of uh comments made by Mr. Matthew Hancock in his module 2 witness statement and professor you should know he’s uh due to give evidence tomorrow but he said in module 2 could I have up on screen please INQ 613177_21 and paragraph 43 where we’ve set out in the middle there what Mr. Hancock said in that statement, he said in his module 2 statement, and it’s in the middle of the page, a widespread concern has been that patients who were discharged from hospitals were the main cause of infections in care homes. While I understand why so many people hold this view, we now know this is not the case. During the summer of 2020, I was made aware of initial evidence showing that movement of staff between care homes was the main source of transmission and I asked for urgent work to be undertaken to place restrictions on such movements. Now you were asked to comment on that um professor and I think you set out below. You say it’s accurate Vivaldi provided evidence supporting the important role of staff in transmission of infection and the risks associated with movement of staff. The survey did not for the reasons you’ve just told us provide evidence of the relative importance of different modes of transmission. Is that correct?
That’s correct. So based on data from Valdi and I’m aware there are obviously other sources of information on this point too. But based on data in Valdi yes that’s correct.
So it’s going beyond what can be concluded properly from Valdi. Yes. To say that movement of staff between care homes was the main source of transmission. If I were to substitute a source of transmission, would that be accurate?
Yes.
Right. Thank you. I think you are um aware that in due course there was a Sage consensus statement
um published. Um, would you just give me one moment, professor, to see if I need to to go to it? It was not published until the 26th of May of 2022. Can we call up on screen, please? It’s your tab four if it helps. Inq215624 2. And in fact, if we just flick over to page four, you’ll see that um diagram again. But if we have that in mind, the consensus statement, and go back to page two, please. The consensus statement found that studies showing that at least some care home outbreaks were caused or partly caused or intensified by discharges from hospital. Do the Valdi uh findings support that or not?
I I think Valdi we don’t make a major contribution on that but yes we are definitely compatible with that statement. Yes. However, based on the very much larger associations between care home size which is a proxy for all footfall. Does that mean the bigger it is the more more people are coming in?
Exactly.
And outbreaks hospital discharges do not appear to have been the dominant way in which COVID 19 entered care homes. Is were able to appine on that or not?
No. Um, but I think I think this is this is such a it’s a a challenging issue. So I think that the conclusions in this are compatible with Vivaldi. Um, for the reasons outlined with this diagram, we have these seven roots of transmission. There are various studies that are cited in this evidence. And I think it would be fair to say that there is no we don’t have a perfect study addressing this question but based on the data that we do have it does highlight the role important role of um of transmission from staff.
Yeah. Can I just look at the cohort study with you and perhaps then after that my lady it might be a convenient moment for a break. The cohort study was very different to the survey.
Yes. Can you tell us how the cohort study was set up please? And I’m it’s back in your statement if it helps you back to paragraph 12 and then various other paragraphs thereafter. So the cohort study was set up at the same time as the survey, but it was uh it was recognized it was going to take longer. And the initial question we wanted to answer in this was to get a more accurate statement on the proportion of care home staff and residents who’d been infected in wave 1. And to do this with blood testing, with antibbody testing and this is because we recognize that a very big proportion of people were not tested by PCR. Um and so we set out initially to do this study in in around a 100 care homes that were owned by Four Seasons Healthcare. And this was uh serial blood sampling in care home staff and residents to understand who had been infected. Professor, can I just make sure I understand and those that are following understand? Even though you may not have had a posit a COVID positive test at the time,
a blood sample taken later will tell you whether you had the COVID antibodies and ergo be able to say that even if you didn’t have the test, we know that you’ve had COVID. Have I got that right?
That’s exactly right.
Yes. So, you were looking at the blood sampling to try and not um get around the fact that there was no PCR testing, but just to see if we could have different numbers of people now with the COVID uh 19 antibodies.
Yes, that’s right. And um how easy or otherwise was it to obtain samples from people in care homes because presumably we need someone to go and take the blood sample.
Yeah. So immensely challenging for lots of reasons. Um but we were fortunate because we work very closely with the care sector on this um and were able to find a way to make it work within that setting. Um so some of the challenges are obviously many people in care homes are cognitively impaired conditions like dementia and so informed consent for blood sampling is not straightforward and so we had to talk to next of kin or nominated consultes staff members but we primarily worked with next of kin and to do that we were very reliant on staff within those care homes to support that process because we couldn’t go into care homes as a research team because all care homes were locked down at that point. So, so you’re really reliant on the staff going above and beyond to ring next of kin to say, would you mind if I took the blood sample from your relative, your loved one?
Yeah, exactly. And are you able to give us a sense of was there any resistance from the care home staff in the first instance? Secondly, was there any resistance from the next of kin to participating in the study?
So, we were really fortunate because right at the beginning of the study, we um spoke to the minister for social care and had a meeting with her. I I met with her and um the chief executive of Four Seasons Healthcare and we talked about the study. We talked about why it was so important, but we also highlighted that this was going to create additional workload for staff and so we had that organizational buy in and they were hugely supportive and we were able to fund people to act as project managers within their organizations. So, so actually um we didn’t really encounter resistance. Um it was I think everybody understood why this was important and um and and it was very much a shared endeavor. I cannot speak to what it was like being a frontline carer trying to negotiate that but that was the feedback that we had and people wanted to know their results which also helped a lot.
Yeah. Um notwithstanding that it added to the burden of the workload on the staff. I think you said there was a further challenge not just on them but you wanted to link the results of the blood testing in the residents to PCR test results where they were available and you wanted to link it to NHS data sets that were held in the NHS foundry. How easy or otherwise was it to be able to make those linkages? So there were two barriers. So the first is if you want to do those linkages you have to have an identifier you have to have the NHS number and lots of care provider organizations don’t hold that information. Most of them do now, but pre- pandemic they didn’t. And so there were real challenges around how you how you get accurate identifiers. And then there’s the challenge of data linkage. And that really is about putting the data sets in the same location and having the permissions and governance around that. And uh subsequent changes with the copy notice that I imagine we’ll come on to um it enabled us to to um find a way around that that was much more effective longer term. Professor, how long do Sorry to interrupt. Um, how long do antibodies stay in the blood? How long do they stay for? Uh, it depends. Um, so we could be confident we would have them for sort of four to five months. Thank you.
So, we’re conducting this study. It started in May, I think it was. So, it would still capture people who were discharged in March.
Yes.
Yeah. In fact, it would go back almost to the beginning of the 2020.
I think our biggest challenge is that not everybody survived to be available. So again we have the underestimation problem and there is variability in the duration of antibodies as well but
right so there’s that there’s there’s those two caveats to apply to the cohort study as well. You mentioned there coping notices control of patient information which essentially provides a legal basis for research teams to access data. How valuable was it to have the coping notices in place to enable the access to that data?
So incredibly valuable. Um the so it changed us from being a study where we could only include care home residents who had consented to blood sampling which was very challenging for the reasons we’ve just discussed to being able to collect data on everybody in those care homes. So all staff and all residents. And so that took us from a study of the sort of order of magnitude of thousands to ultimately we had over 70,000 care home residents and staff in our study. and and clearly the the power of our analyses and conclusions is much greater if we’re able to enroll many more people.
Right. Can we look please then at the key findings from the Vivaldi cohort study and your paragraph I think 44 is where it starts professor and it might be useful if we could call it up on screen. It’s 613177 uh 0021. Thank you. Um the cohort study alongside the survey was to get an accurate estimate of the proportion of surviving staff and residents who’ve been infected based on the antibodies and you wanted to what track what happened to the resident staff over successive ways. I think you explained that although it started out as a 100 care homes, did you say it go went to 700?
Uh so ultimately we had I think it was 340
340 forgive me. Thank you. And then there was the issues with uh linking it that we’ve looked at. But if we go on to paragraph 45, the first priority in the cohort study was to estimate the proportion of staff and residents who’d been infected. Using the NHS data foundry and blood samples, we estimated that 33% of surviving residents and 29% of staff had antibodies showing they’ve been infected in the first wave. So quite higher numbers than we looked at in the survey. And would you expect there to be higher numbers based on the um antibbody cohort testing?
Yes, absolutely.
So that was not a surprise. It was not I think that I think we were all surprised at how high it was. Bearing in mind these are survivors, but we absolutely expected it to be higher than the PCR testing because we were very aware that that was very limited in the first wave.
Or to put it another way, it shows you how much of an underestimate it was from the the survey results.
Yes.
Um the estimate for residents was approximately three-fold higher than in the survey. You say it’s not surprising. shows that many people who are infected in the first wave had not had access to PCR testing. And then um help us please really with the the next uh few sentences, professor, you say um to investigate rates of infection, we compared the PCR positive infection rates in residents and care home staff who had evidence of a previous infection of up to 10 months earlier with those who had not. And what did you find please? So, so the reason we did this, so this was before vaccines were available, um, one of the key questions was whether people could get COVID more than once. You know, how worried did you need to be if you hadn’t had it essentially? And so what we did is we looked at antibbody test results referring to wave one. So people could be positive or negative and then we looked among those positives and negatives, what was their chance of getting a new infection. and we found that it was very significantly lower in those who had had a prior infection highlighting that if you’d had it previously you had immunity. Um obviously that changed with the emergence of variance but at that point in time that was a really key finding because it did provide some reassurance um that yeah there was some protection. Yeah. So effective you’d had it and survived you were at lower risk of infection.
Yes. um and there therefore help inform policy to look at the places where there wasn’t that amount of immunity. They might need more protection if I can put it like that or different forms of protection but to give you an idea of how many people in care homes might nonetheless be protected by the fact they’d had it the first time round
and I think also importantly providing some reassurance to people in the care sector about the risk of if you at least if you have had it and survived then potentially your future risk is diminished. Right. Now, you mentioned just a moment ago that was before there was the variance as they emerged. Can I ask you please about your paragraph 46? Can you help me with um what Vivaldi found in relation to um I think it was the alpha variant that emerged in the autumn of 2020. Yes. So, and this is a a really good example of why data and data linkage was so important. Um so what we were able to to show is that um as as this variant emerged um because of a peculiarity about how the PCR testing worked, we were able to track the emergence of this variant across the southeast of England and there was good data on how it had spread across in the general population but no data on the care home population. The hope at the time was because we had a lot of control measures in place, care homes were protected and it wouldn’t get in, but we were able to show that the uh the variant had got into care homes and and the potential risks associated with that. And just finally, I think in due course Valdi was asked to look at um vaccines against viruses because there was a concern that co vaccines might not provide residents with adequate protection. But what did Ravalry find when you were able to factor the vaccines uh in?
So there was a lot of concern because for example with influenza vaccine we know it’s less effective in these older age groups. Um the clinical trials that were done of the vaccines excluded care home residents. Uh so we didn’t have any data. We were able to show that the vaccines were actually working very effectively in this population and substantially reducing the risk of infection. And so again that provided a lot of early reassurance um and also to support the roll out and uptake of vaccination in that population.
Yeah, I think it showed that there were vaccines did work. They were effective for 3 months after dose two but thereafter protection declined. Is that a fair summary?
And we we saw that pattern repeatedly because we kept doing these kinds of studies. So we saw after booster vaccinations within a period of approximately 3 months you start to see that waning hence the need for boosters. And so our data was also useful for the uh joint commission on vaccination and immunizations when trying to think about the timing and need for boosters in this population. My lady, a lot of data there, a lot to take in. Would that be a convenient moment?
It is. And I have had quite a tough morning.
Yes. I I appreciate that. I’m sorry.
If you’ll forgive us, we’ll take a break. Promise you we will finish your evidence this afternoon. I shall return at 22.
Thank you my lady.
All right. [Music] enough. [Music] You see your mom? [Music] [Applause] [Music] They’re going to do this drone shot straight after they kind of back. So really it’s just getting out dodge please. This is tall. [Music] [Music] Okay. Hello everybody. I’m Billy. Um, isn’t it fantastic to be here at number 10 celebrating you and the public service that you all do for your communities? I know all the hard work you do and as a teacher for the Royal Free Hospital School, I also work quite hard myself. I hope you’re having a really lovely time because you deserve to. Um I don’t know about you, but as I ripen with age, I’m shocking at remembering names. However, there are a few names that um I will never forget. One of those being Maggie, as in Maggie’s cancer centers, Claire Felen, my cancer nurse specialist throughout my treatment for breast cancer, and Trisha um my I have to get this right, post treatment stratified nurse, and she arranges all my checkups and she reassures me on a regular basis and alleviates my new fears. Um both of you will always be in my heart. So, thank you so much. Another important person to me is Karma. I first met him a year ago at the launch of the plan for change and I’m delighted to introduce him to you now. So, if you’d like to join me in welcoming the wonderful Dharma. Thank you, Billy. Thank you so much for that um introduction. Thank you for what you do and um it was really brilliant that we did the plan for change launch together um and that you’re now back here in the garden. Um and let me um address everybody here by saying it is really such a privilege to have you all here. And as I look around the garden, I see so many people that I’ve met before that I’ve got to know that have been part of my journey and shaped my thinking. and so many people as I look out who I’ve been humbled by uh what they uh do, what they give and that sense of public service that is in each and every person in this garden. So, thank you for coming to where I work. Thank you for coming to where I live to my house and standing in my garden. I’m sure we have I’m sorry we haven’t got more shade uh for this afternoon, but it is really that the very fact of having you here is hugely important to me and a real statement of intent about what matters to me. And for many of you, the things you’ve said to me, the things you’ve told me, my understanding of what you’re doing, why you’re doing it has all gone in uh to help me shape what we do in government. And that’s exactly how it should be because we said we’d be a government of service. If we’re a government of service, we should be talking to people in public service, taking on board what you have to say to us, and then distilling it together because you’re part of this into what we do in government. And for me, it’s a sense of really bringing you into government physically obviously into the garden, but in a much more fundamental way um to shape not just what we do, but the future of our country. So, thank you for being here. Um uh and um that plan for change was a really important testament to the difference that our public sector um can make whether that’s the NHS that um you know for so many lives Billy I mean it’s just uh uh has touched on their uh lives and then the lives of their loved ones um and Billy for you as well and we talked not just about your work at the Royal Free but your own journey um last time we spoke at some length and it was incredibly powerful and incredibly moving and you know in this garden we’ve got people from right across the spectrum and I was just having a conversation uh with four or five of the people here um and I asked them what did they think looking out on the garden of um everybody here and they said it’s a real sign of just how broad public service is. So many different people doing so many different things. There’s not just one or two strands to this. It’s across so many strands. So we have in this garden teachers, we have veterans, we have police officers, RNLI crew, firefighters, border force campaigners, medical professionals um including um those um who responded to the awful attack in Southport uh last year. And and I’d just say a word about that because that was hugely impactful on me. I went up to Southport the day after that terrible um incident. Um and I went up um to say thank you to the first responders um to the police, to um the ambulance crews and the paramedics um and the firefighters who had to respond to um the most challenging, the most awful of circumstances. Um, and I just wanted on that occasion to say thank you uh to them for what they had done. Not not a great public speech or display, but just a simple thing coming as prime minister to say to those that responded, “Thank you.” Um, and I could see on the faces of those I was speaking to, some of him, some of whom are here uh today, just how impactful it had been because it was always going to be. But all of them, and this is what really struck me, were back out at work the next day in uniform doing their job. And all of them said to me, “It was just doing my job.” I said to them, “It’s, you know, you say that, but it was much more than that.” But that spirit is what is captured in this garden. This sense of putting others before yourself, which is what public service is all around. So, thank you um for everything you’re doing, for the l the young lives in particular that you’re shaping because what we do for the generation that’s coming behind us is of real um importance. The opportunities you’re opening up, the protection you give to our country, our communities, and our loved ones. and for the lives that are saved by people um in this garden and that spirit as I say of public service of putting other people first. It’s easily said, it’s not so easily done and it requires absolute dedication and uh all of the um time and it is a wider commitment to making our country a better place. So, it is great to have you um here. Um just about a year since we got elected on a mandate for change to end the chaos to restore our public services desperately needed. My wife works in the NHS and on more than one occasion I’ve said the NHS is on its knees and she has corrected me in the past to say no. This was before the election. Uh it’s on its face. Um, and that is why we’ve done so much already to u make sure that we’re putting money, resource, support into our public services. I’m really pleased that the NHS is where we’ve put um a huge amount of resource um and support. And that means that our commitment uh last year, just before the election, I was saying this a year ago today, I said if you have a Labor government within the first year, we’ll do 2 million extra NHS appointments. I can tell you today we’ve done four million. four million. Um, and that is the difference it makes. Um, and that is what we’re doing not on our own as a government, but with you with others. Um, and that money into our NHS, bringing waiting list down, but more than waiting list down, we are also committed to an NHS fit for the future. So, not just the NHS as it now is, but fit for the future. We’re very proud of the fact um that the Labor government after the Second World War created the NHS. It’s one of the proudest things um that uh any Labor government has ever done. Our job is not just to celebrate that although we do. It’s to make sure that in decades to come others can point back at this government and say that was the government that picked up the baton and made the NHS fit for the future as we go um forward. Um because um you know whether it’s health or schools where we’ve also put a huge amount of money um it is about who you have in your mind’s eye, what the choices are that you’re making as politicians. Um and making sure with schools that every child has the best possible start in life. That has not been the case in recent years. um and making sure children arrive at school ready to learn, which is why we’ve done so much work on breakfast clubs, child care, to make sure that even at the age of four and five, children get the chance and then the chance to go through um and go as far as their talents will take them, whatever that may be. There should be no prescription of what a child should achieve in his or her life. But we should let them go as far as their talents will take them in whatever direction uh they want to go. moving then from free health to um prisons. Um and I’ll go a bit quicker because I can see people are beginning to wilt in the sun and thinking this is great here but uh uh get to the bit that says finally a bit quicker if you don’t mind. Um, but prisons, the biggest prison expansion since the Victorians, 1400 new places and without police, particularly investing in neighborhood police. And you all know from the work you do, the thing that people want most um is to know that they’re safe and sound in their uh community. And finally, and most importantly, we’re investing um in you because people run services. People are public servants. Um and we need to serve to care and protect um the people you you and all the people you’re representing here because you’re here in your own right but you’re representing millions of people um across the country. Um and we need to give you the respect and dignity that you and they um deserve. Uh and that’s why one of the first things we did was to give the public sector a payriseise to ensure that you to take a small example that our doctors were back on the front line not on the picket line. um doing the job that they want to do that they’ve committed their lives to. Um which has meant that working with the NHS we’ve been able to get those working waiting list down rather than um coming along as the last government did and saying it’s all your fault. It’s nothing to do um with us. So um that work of change has begun. There is a lot more to do, a lot more to do to change this country uh for the better. But we’re going to continue in the same spirit of public service. Um because I promised this would be a government of service. Um that is why you are here. And this is not a one-off for many of you. As I said at the beginning, this is a continuing disc discussion and conversation with me. So this is a one-off opportunity to be here in this place. It is my invitation to you to keep talking to me and to the government and being part of what we do. you are entitled to tell us what future you want for our country. Um, and we uh should listen to that and work with you to mold that for the future. So, thank you so much. Thank you for being here. Please enjoy. I know this is going to disperse immediately to all the shaded areas. But just before we do, I think I’m right in saying we’ve got a drone up that’s going to take a photograph of us. Not quite sure where it is. Um,

Bereaved families give evidence to Covid-19 Inquiry

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