29 October 2024

(10.00 am)

Lady Hallett: Mr Scott.

Mr Scott: Good morning, my Lady. May we please call Julia Jones.

Ms Julia Jones

MS JULIA JONES (sworn).

Questions From Counsel to the Inquiry

Mr Scott: Good morning, Mrs Jones. You’re here today to give evidence on behalf of John’s Campaign; is that correct?

Ms Julia Jones: Yes, indeed, and I’m part of a core participant group which includes The Patients Association and Care Rights UK.

Counsel Inquiry: Thank you. And we have a joint statement which is signed by yourself, and then two senior members of Care Rights UK and The Patients Association.

Can I just get a little bit of background just about your organisation because I believe you are the co-founder of John’s Campaign, is that right?

Ms Julia Jones: Yes, I am indeed.

Counsel Inquiry: And John’s Campaign came about as a result of an individual who – you phrase it as:

“… the observed deterioration and death of … a man living with dementia, when he was separated from his family support due to infection control measures taken in hospital.”

Is that correct?

Ms Julia Jones: It was almost like a microcosm of what’s happened now, yes.

Counsel Inquiry: And the point of John’s Campaign is about supporting vulnerable people and their families, where a person in need of support is being accommodated in any of the institutions of the UK, and in particular there’s a campaign for a legal right to a personal care supporter in respect of each individual rather than in respect of any health or social care institution. Is that right?

Ms Julia Jones: Yes.

Counsel Inquiry: And John’s Campaign, do you hear just from patients or do you hear from healthcare workers as well?

Ms Julia Jones: John’s Campaign wouldn’t function if it weren’t for the goodwill and the understanding of people working in health and care settings, so yes, of course we lobby particularly for people living with dementia, that’s where we started, and for their family carers, but John’s Campaign has no organisation apart from the goodwill of people working in hospitals, mental health units, care homes, any of the health and social care institutions.

Counsel Inquiry: When was John’s Campaign founded?

Ms Julia Jones: Ten years ago.

Counsel Inquiry: And just in terms of The Patients Association as well, I think a fair summary is that The Patients Association seeks to provide the patient’s voice in relation to the treatment that they receive in healthcare; is that right?

Ms Julia Jones: Yes. And I know that the CEO of The Patients Association is with us today and she feels passionately about the patient’s voice but also about patient partnership.

Counsel Inquiry: I think we’ll come back to the patient partnership. But if I can, please, take you to I think what is the central element of your statement.

If we can have up on screen INQ000283957, and it’s page 18, paragraph 41, it sets out there:

“As a Core Participant group, we have been and continue to be particularly concerned about the intense focus on infection control at the expense of many other (healthcare) issues faced by individuals we represent.”

You said it:

“… had a huge impact on the quality of the overall experience of care … for those who required it. It … significantly impacted the quality of … end of life period and death …”

Can you please expand a little bit about what you mean by that paragraph in terms of where the balance lies between infection control in a pandemic and the other aspects of healthcare that you believe there should have been more prominence put on?

Ms Julia Jones: When I said that our experience with Dr Gerrard, after whom John’s Campaign is named, was like a microcosm of what’s happened between 2020 and 2022, it was because he was a man living with dementia, living well with dementia, who was taken into hospital for a fairly minor procedure. But there was a norovirus outbreak in the ward and the default mode, then, of infection control was separation and isolation. No visitors, slam the ward door.

And my co-founder Nicci Gerrard’s family had no idea what this would do to her father. He simply lost all his – he lost his body weight, his power of speech, his continence, his mobility, because he’d been sundered from that framework that had been enabling him to live well with his condition. And we’ve learnt since then, and I know others of your witnesses have said, this doesn’t just apply to people who are living with dementia, it applies to so many people who need that additional carer support.

If the main method of infection control is separation and isolation, the damage and the danger is far greater than – dementia is incurable. You can survive Covid. You don’t survive dementia. And that was a known fact and we were deeply shocked that that wasn’t considered when the infection control guidance was set up.

Eventually there were some exceptions to the guidance and they were very welcome, but it made us wonder whether the infection prevention and control cell, as it were, had actually consulted with people outside of that cell, whether they had actually consulted with patients.

One of your witnesses, I think it was Professor Gould, said that she felt that patients and their families should have been part of the infection prevention and control guidance because they’re the ones who are going to have it done to them, I think is the way she put it.

So, it made us wonder whether people issuing that sort of guidance are sort of aware of the diversity of people and the diversity of needs and whether they’re obliged to take that into account when they’re drawing up these sorts of guidance.

Counsel Inquiry: Can I just – just to clarify, you’re not saying infection prevention control measures are bad per se?

Ms Julia Jones: Of course not.

Counsel Inquiry: You’re just saying that the balance in certain situations was wrongly drawn; is that a fair summary?

Ms Julia Jones: It’s one of those situations where the prevention can be worse than the disease for some people. My co-founder, Nicci Gerrard, went on television on March 13, 2020, and said, for people living with dementia, separation and isolation will be a worse risk than Covid. And that has proved to be true.

Counsel Inquiry: Do you think that there should be a different approach taken in pandemic times compared to non-pandemic times in relation to –

Ms Julia Jones: Yes. Yes, yes, of course. And that’s where one need to look at the difference between visiting and caring. So I think one would of course want to reduce footfall in health and social care institutions. And people themselves would wish this to be the case, people don’t want to go bringing infection into hospitals or indeed acquiring infections in hospitals. But if you know that the outcome for the person who you care about, who you support, is going to be dire without you, that’s where there needs to be flexibility – well, yes, flexibility and conversations.

Infection prevention and control needed to be much more complex and nuanced and appropriate for individual need in our view.

Counsel Inquiry: What would that have looked like? How would that flexibility have presented itself in a way that you thought would have been worthy – appropriate balance had been drawn? And I appreciate it’s very difficult to generalise at different stages of the pandemic, in different settings, but if you’re able as far as possible to give examples of how you think things could be done better?

Ms Julia Jones: Well, in the very early stages there was a complete visiting ban, but immediately there were exceptions to the ban made for parents of children, for people who were dying, and for women who were giving birth, and in Scotland, very quickly, people living with dementia, learning disability or other cognitive impairment where separation causes distress, there was an exception made for them.

In England, that did come, it came on April 8th, from NHS England. Unfortunately, by that time the very negative message had gone out.

Counsel Inquiry: Could you just tell us what that negative message is?

Ms Julia Jones: Yes. The negative message was: shut your doors.

And of course I also think that as the pandemic continued – and what I’m talking about is also relevant to Northern Ireland and to Wales, it’s not just England. As the pandemic continued there were sort of fluctuations and changes to guidance which unfortunately got people quite confused, and so I think there was a lack of psychological insight, in that when you sent out such a very negative message to start with, and where people are very frightened and where you’re looking at death statistics every night, so many people took no notice of all the nuances and the iterations of guidance, particularly, particularly when it became locally – you could make your own minds up locally which should have been a good idea but actually wasn’t.

Counsel Inquiry: Picking up that thread then. Why wasn’t it a good idea? Was it because of confusion that it caused? Was it because of difficulties in applying that? What do you think was the problem with that kind of set up?

Ms Julia Jones: Well, we became very aware of variability between the, particularly the English trusts but actually I think when you were speaking to Professor McArdle it was very obvious there was variability between the Northern Ireland boards as well, but some hospitals would listen and take the guidance and have an overall flexible attitude, that if the patient needed somebody and it was essential to their health then the essential person would be welcomed, whereas other hospitals would say no. And it could go down to a really micro level.

I had a very distressing incident in one of the hospitals I would have thought was one of our best John’s Campaign hospitals, one of the hospitals who had really taken on the idea of patient-centred visiting, but there was a gentleman, and he was non-English speaking, elderly and he’d had a bad – living with dementia, being cared for by his son and daughter-in-law, was taken into a hospital with no provision made for the fact that he didn’t speak English, and he got to the end-of-life state and they were now no – no contact, no support at all. He was moved then into a different ward in the same hospital for his end-of-life care, and the nurse said: but we’re a John’s Campaign hospital, he has dementia, you could have been coming in all through this time.

Think how those people felt. And of course in that case he did revive, he did start to eat, which he hadn’t been able to eat before, but sadly it was too late and they kept him better for a week or so and then he died.

Counsel Inquiry: Where do you think the flexibility in guidance should be built in? And it could be at more than one level. Should it be those who are creating the guidance? Should it be at regional level, Trust level, board level or ward level? Where do you think is the best place for that flexibility to be built in given your experiences of assisting people?

Ms Julia Jones: We, actually, I’m not sure flexibility is entirely the right word because what I actually think is that we have very good laws in this country, such as the Equality Act, such as the Mental Capacity Act and indeed such as the human rights legislation and I think if those pieces of legislation, particularly the Equality Act had been better observed then I think legislation – sorry – guidance would have been drawn up that was in accordance with legislation, and yes, flexibility then does come in, as Ms O’Sullivan was saying yesterday, people with learning disability for instance who should have reasonable adjustments made for them under the Equality Act not just because somebody is feeling kind, but because that is their legal right, then those people would have been better catered for.

Counsel Inquiry: And do you think that those who are, so sisters, other people who are working on wards, do you think they would have been assisted by a better rights-based guidance being given to them about when people could visit and the circumstances to which visiting should be allowed?

Ms Julia Jones: I do. I do. And I think there’s – I mean, obviously it’s also a communication issue. I think there’s a huge amount that could have been done to reassure and support ward sisters, ward managers, or the managers of mental health units or anywhere in the health and care system that actually it was okay to say, say yes carefully, say yes in consultation, but otherwise it felt that the default option was just say no, just say no, and that wasn’t best for patients.

Counsel Inquiry: Do you think there was a sufficient – this may be a question also for The Patients Association’s view on – do you think there was sufficient patients’ voice being put into the creation and the changing of guidance as it went along?

Ms Julia Jones: No, I don’t and I think that The Patients Association would, I think as I’ve already said, recommended that the patient voice should have been there in the drafting of guidance, but I also think if you look within hospital trusts, for instance, they have patient experience departments and I ask myself: were those patient experience departments well used during the pandemic? And I think, as with so many things, the answer will be in some cases yes, but in other cases no.

Counsel Inquiry: How do you think they were best used?

Ms Julia Jones: I think they would have been very well used as a clear point of communication, that if somebody was anxious about – if they felt that their relative needed this additional support, and they felt – perhaps they were aware of the guidance, perhaps they knew they should be entitled to it, it’s very hard when you’re a person in the community looking at a big institution like a hospital. You don’t know who to ask.

So if the patient experience departments were there, it would be a very good point of contact for families to say: I really think that my mother needs me in hospital or we’re really distressed that we’ve been told that our sister is on an end-of-life pathway but we’re not being allowed in to see her.

So in fact what very often happened was if they were savvy enough to know about John’s Campaign they might ring me up and I might find I did know somebody in the hospital and I could ring them, perhaps a lead dementia nurse, or perhaps I would need to go to safeguarding or the director of nursing and I would go to somebody in authority, I’d say, “Look, this is happening in your hospital”, and they would say, “Oh dear. No, no, that’s not our policy at all.” And so then they would go to ward level and say, “Actually, you should let this person in, it’s part of our policy.”

There was a huge gap between what happened at the top and what was written down in guidance but what was actually happening among very frightened people under stress and taking large and scary responsibilities.

Counsel Inquiry: It sounds like you had a number of those conversations. Is that gap between the top and those applying the guidance, was that a very common theme that you found?

Ms Julia Jones: Yes, and the sad thing is that of course only the people who were assured enough to – somebody told them about John’s Campaign or they found us in sort of desperation trawling the internet or on social media, those people could get through to me, or to Nicci, but people who weren’t confident and didn’t go on social media and didn’t use the internet, there were so many people who must just have taken their dismissal and they’ll be nursing the hurt until this day.

Counsel Inquiry: And it shouldn’t have been just because people made contact with you, it should have been available to everybody, I think you’d probably agree with that?

Ms Julia Jones: The experience of the pandemic changed us enormously. We used to believe that you could get things done by relying on people’s goodness and their wish to do the right thing, and in so many occasions that’s absolutely true, but we now feel that the power imbalance between patients and their families and the institutions of health and social care is so great that we now feel that there should be a legal right lying with a patient that if you’re a patient or a service user or a resident, and you need this personal support, you should have a legal right to have it.

Counsel Inquiry: Just a couple of things. You said “we” on a couple of occasions; who do you mean by “we”?

Ms Julia Jones: Well, so firstly I meant Nicci and I who changed our views. Then during the course of the pandemic we worked with other organisations, principally to start with other dementia organisations, but then we came closer to Care Rights UK, and to many care organisations and health organisations and I can now say – possibly it’s out of the scope of this Inquiry – that our statement that what we feel now is that a care supporter’s bill is needed, has been signed by over 80 English organisations, including, you know, people like Age UK. I think you would have heard Caroline Abrahams use the word “legal” in her evidence yesterday and that I think is what she was referring to.

Counsel Inquiry: So “we” is very broad when you use it?

Ms Julia Jones: It is. It is.

Counsel Inquiry: Can I just ask, and this is one the things about patient voices for The Patients Association. So The Patients Association was part of the voluntary sector Covid-19 briefing group with DHSC which I think was intended to be able to raise concerns from patients directly with the briefing group. Have I got that correct?

Ms Julia Jones: Yes.

Counsel Inquiry: Did The Patients Association feel like that group achieved anything?

Ms Julia Jones: That’s probably one for The Patients Association but I think that they felt that they didn’t feel that – they might have been listened to but they might not have been acted upon. I think in one or two of the other groups that they were part of, for instance, the group that advised on communication with people who were waiting for procedures, I think they felt they had some impact there but I think for a very clear answer I’d have to refer you to The Patients Association, but I don’t think they would be saying the things that they’re saying now so strongly about patient partnership if they felt it had worked through the pandemic.

Counsel Inquiry: And then just finally in terms of points of contact. You were describing earlier on when you were speaking to people in hospitals, and I think you gave three different examples of the type of people who you would end up speaking to. When you spoke to hospitals, did you tend to find that there was one person, one role, one individual maybe who had that same level of knowledge effectively asking it a different way, in each trust board that you spoke to, did the decisions about visiting and the application of guidance end up resting with the same position within that trust or board or was it just spread across different people in different hospitals?

Ms Julia Jones: Hospital trusts vary so much. We function by a system of pledges and we were able in 2018 to present pledges from all the English Acute Trusts to the then Chief Nursing Officer and say: look, these trusts have pledged to welcome carers 24/7. It was a big pledge they made but it was entirely voluntary and the way they would implement it was up to them. And it’s also true that across Scotland, Wales and Northern Ireland almost all trusts had made similar sort of undertakings but because trusts are such complicated and big organisations sometimes it would be that it was the dementia, lead dementia nurse who had made this pledge, obviously in consultation with a director of nursing.

Sometimes it would be the patient experience department. Sometimes you would find it had come from safeguarding because, you know, it was seen to have the presence and support of a family carer is a safeguarding measure. It can be proved to reduce the number of falls, for instance, and pressure sores and malnutrition, if you’ve got somebody there for an individual patient.

So I had to think and sometimes I would strike lucky and I’d realise we’ve got a John’s Campaign ambassador in that trust. Sometimes I would just have to try and – I’m afraid sometimes I just used Twitter or something to get a response and then find who I could talk to.

It was by no means ideal and that’s what I mean about that I think that every trust and institution should have a clear point of contact for the public. And, you know, I was acting as the public.

Counsel Inquiry: You’ve given a lot of examples of the impact and what could be done better. I think in your statement you’ve also been keen to set out examples of things that worked well. Can you give us examples in this kind of broad area about what worked well, good practice, things that should be adopted that happened during the pandemic?

Ms Julia Jones: I think even looking at your evidence from the spotlight hospitals you can see that there are some who – like, I’m thinking of Altnagelvin Hospital in Londonderry, you can see there’s a hospital where the culture of visiting, I’m using that word which – I try not to say “visiting” but that’s the word we’re all using, I’m talking about therapeutic care, you can see that that’s taken seriously. So in some of the hospitals that I know best, because John’s Campaign has been working for a while, the culture of valuing family care and a sort of open visiting culture in non-pandemic times has really taken root and that’s true of some of the health boards in Scotland as well.

So in those hospitals, because they believed in it, and because they thought it was the right thing to do, they would find ways to manage it. That’s the thing – clearly in a pandemic you can’t just go along as normal and nobody would wish you to but you can find positive ways round the regulations, you can find positive and safe ways to balance the risk of not caring for somebody in need and welcoming in a personal supporter.

Counsel Inquiry: Is this boiling down to what you were saying earlier on about trying to find a way to say yes rather than the default of saying no?

Ms Julia Jones: Yes, indeed.

Counsel Inquiry: I’m going to move on to patient experience reports.

If we can please have the screen INQ000283957. This is at page 21, paragraph 51.

I think The Patients Association provided or conducted a series of surveys, is that correct, during the pandemic –

Ms Julia Jones: Yes.

Counsel Inquiry: – about what patients find and their experiences. And just to pick out a couple of the highlights of this paragraph. So many people had treatments and other support postponed or cancelled. Lack of information about when services will restart. A risk of the voice and experience of patients getting lost in the need to get things done. Disabled people and people who are chronically ill have been told they’ve been left behind. And services for mental ill health have become even more difficult to access under lockdown.

In relation to each of those, about each of those points raised during the pandemic, do you have any ideas about how any of those features could be improved in the event of a future pandemic?

Ms Julia Jones: Yes. Some things could have been I think done quite simply. One of the features that comes out from those Patients Association surveys is the depression and anxiety, and indeed, well, the people who feel that they’ve been left behind, the people who felt that their life and health wasn’t of value. Those could have been alleviated by quite simple human relatively cost-free measures, making it important to ring somebody back, to keep them in touch with what’s going on, just normal human positive interactions and I can’t believe that if one had thought of it that way that there couldn’t have been the man or woman power able to do that.

And I think communication, such an enormous issue in every, every part of the pandemic, and could have been handled so much more proactively and so much more sensitively.

And while we’re on – The Patients Association particularly heard from many people who’d been sent out from hospital with inadequate follow-up, perhaps they’d just had a heart operation or cancer treatment and they were hurried out of hospital back home with inadequate follow-up and very little idea who to contact, and I feel I must say that we have to recognise who it was picking up the pieces in that situation, and that was in a vast number of cases it was the families of those people who came home.

Carers UK have drawn up an estimate that four to five million people found themselves needing to become carers, and that means carers for health, people who help somebody take their medication, help them do their exercise, help their mood stay up, try to find if there is a chance of them being referred onwards, those people add up to 13.8 million people, and the CQC in their State of Care report highlighted the strain on the health and well-being of those people, and I really feel that the contribution made by those people to the continued functioning of health in our four countries should be recognised, and I don’t think it was recognised.

Counsel Inquiry: And those were people who were put in that position because of decisions taken to discharge people earlier than they otherwise would have been had it been non-pandemic times, is that –

Ms Julia Jones: Yes, and people as the ambulance services said, who were left at home sicker for longer.

Counsel Inquiry: If I can just come back to the communication point and, as you said, these basic human elements of communicating with families or patients.

What do you put that lack of communication down to? Is it a lack of time of those who are on a ward or those who are treating other people? Is it a culture within NHS, HSE of not prioritising communication? Where do you think the fix fundamentally lies?

Ms Julia Jones: I think during the pandemic possibly everybody slipped into what they call command and control mode of issuing orders and indeed not encouraging alternative points of view, discussion and communication. I think that has an impact. I don’t think people like being treated in that way.

I think there are better ways to get the best out of people and if a little bit more psychological insight had been used, a little bit more sensitivity in the use of language, that wouldn’t have taken very much more time, and it would have been very much more productive.

But I don’t think the NHS is great on its communication, and I think that’s a great pity because if you’re separating people and you’re leaving one set of people in anxiety and ignorance and you’re leaving other people feeling frightened and abandoned by not facilitating communication you’re exacerbating that.

Counsel Inquiry: Communication was a feature, I think, that flows throughout the statement. You refer to communication in the context of communication about shielding, about the position in relation to DNACPRs, about people feeling able to access services during the pandemic when they otherwise may put it off.

Is that something that is at the heart of your experience that difficulties with communications in many, many different ways across the pandemic?

Ms Julia Jones: And also the sort of unspoken aspects of communication. So we can tune in our televisions, and we can listen to, you know, the people in suits telling us things, but they’re not really addressing our fears and they’re not giving reassurance and good communication handled better could have given us more reassurance.

If you take something like the do not attempt resuscitation issue which has been hugely covered, and very well covered during this Inquiry, it’s not only people saying, “Well, of course it shouldn’t have happened like that”, it’s the thought if you’re letting somebody you love go into a hospital where you’re not going to have any contact with them, and you’re not going to have – hear anything from them, you begin to feel, you have imagination, you’re human, you begin to wonder what is going to happen to the person I love in that institution? You’re frightened, so the whole feeling, and I’m afraid it was a true feeling that “do not attempt resuscitation” could segue into “do not treat” is extremely frightening and those sorts of fears need to be tallied and real reassurance should be given.

Counsel Inquiry: If I could, please, put on screen INQ000273424, page 5.

This is one of the reports from The Patients Association’s surveys and these are what appears to be a similar thing, they’re described as principles for ensuring all patients, disabled people, carers, and others are able to have the best possible experience.

Does that – do those principles, do they encapsulate what it is that you’re trying to convey about what you think were failings and what could be improved in the pandemic?

Ms Julia Jones: I think that’s a really excellent list and I feel fully in support of it:

“Recognise from the outset that the impact of the crisis will fall hardest on those who already face discrimination and inequality …”

And that’s a lot of people. And as Caroline Abrahams said yesterday, that includes older people, it includes disabled people, it includes people who are already socially disadvantaged, that’s a big thing.

Now, knowing that, surely the Equality Act, the Human Rights Act, those laws that we already have should swing into action and say: we’re a democracy, we value everybody, we’re going to do something for these individuals.

Counsel Inquiry: Would you be able to provide a practical example of how – please feel free to choose any of those principles, and more than one if you wish, about how those principles should be brought in.

In terms of the fifth one down:

“Provide clear, concise and timely communication, updated regularly, about the impact of the crisis on support and services, what is available … and how services may begin to restart.”

How do you think that should be done? Are you talking broadly to the population, are you talking to individuals using the services?

Ms Julia Jones: I think you’re talking to the individuals and their families using the services. I think what – reverting to yesterday and what Jackie O’Sullivan said about involving people like Mencap or the Alzheimer’s Society or Age UK when you’re drawing up guidance to make sure it’s going to relate to people’s actual life experiences, I think that’s a sort of fundamental and sort of structural thing.

I lost count of the number of times people said “I’d been ringing all day and I got no answer”. The Patients Association have a horrible example, just one of many, about a man who spent a whole weekend ringing the hospital, his local hospital, to discover whether his wife was still alive.

Let’s just think of that. That was not necessary. Somebody could have answered the phone in that hospital, found the information and reassured that poor man. It’s not rocket science.

Counsel Inquiry: Coming back to your points of communication. It sounds like it’s sort of about NHS and HSE and others listening, not just broadcasting.

Ms Julia Jones: Yes.

Counsel Inquiry: Do you think there was sufficient listening?

Ms Julia Jones: Putting themselves in the shoes of the patients who were at the heart of their services. The services are there for the patients. Family carers are sometimes a way of articulating that.

We heard good recommendations yesterday about how we should all do advance care planning. So somebody of my age should be doing – so I then appoint perhaps one of my children to have power of attorney for me. And that seems a good thing to do. Under the Mental Capacity Act people would have guardianship. Under the Mental Health Act there are people called the “nearest relative”. Now, all those people who had been appointed by patients to – in good times to undertake those functions in bad times, far too many of them found themselves just rejected, just not listened to, unable to do these emergency functions which they’d accepted the responsibility to do.

Counsel Inquiry: Do you mean in care settings or in hospitals as well?

Ms Julia Jones: I mean in hospitals. And that’s why I think Mr Wolfe yesterday was trying to raise the issue of consent to treatment, which I know your Ladyship heard. For people who are not able to consent to treatment properly, people – I’m going to say people with dementia again, but I’m also going to say people with learning difficulty, people whose first language wasn’t English, when they’re taken in and they’re separated from the people who have accepted responsibility for them, that’s not a situation that one should tolerate, because that’s them doing things to people without their consent, which is fundamentally opposed to what the National Health Service stands for. And it also inflicts great harm on the people who have said “I will stick up for you in your time of need, I will be your advocate”, only to find that they are not here. It shakes people’s faith in the system.

Counsel Inquiry: Do you think that during the pandemic, whether inadvertently or not, that there was a lack of recognition as the individual circumstances of people attending hospital?

Ms Julia Jones: Can I just say a straight yes?

But I – no, I won’t say it about every hospital, because I do know that hospitals who had truly understood the principles of patient support and carer access did do their best, and I’ve heard from John’s Campaign ambassadors in hospitals of the way in which they did facilitate access for people when they knew that the risk of not doing so would be so damaging for their patients.

And I think that, again, once a hospital is working on a positive, ethical basis, that’s a great strength, because we’ve heard too much about the distress caused to people working in hospitals and care settings because they knew that they were doing things they felt to be wrong.

So if one could do better in channeling the positive principles, those hospitals, those patients will, tangibly, do better.

Counsel Inquiry: Just drawing all the threads together, apart from what we’ve covered so far, are there any other recommendations you’d like the Chair to consider when it comes to writing the report?

Ms Julia Jones: I think you’ve allowed me to say them.

Firstly, that we play to our strengths and that the good laws that we have and the good people – you know, the good institutions we have within our institutions should be prioritised.

I would go further than that, and I know my friends at Care Rights UK would want me to say this, we feel that actually everybody working in health and social care should, as part of their training, have an understanding of the Equality Act and Human Rights Act and the Mental Capacity Act. Those really fundamental building blocks could be in training.

We understand that that’s all quite complicated, so that’s why we would like the very simple right for every patient to have this legal right to a care supporter, a personal support, at the times that they need it, and that should be a right with the patient.

And once you establish that, then the sorts of things that went wrong with planning – because pre-pandemic planning didn’t take any account of people in hospital settings with confusion. It didn’t take any account of people with mental health issues in the preplanning. It didn’t take any account of visiting issues in the preplanning. Now, once you know that your patients and your residents and your service users have this personal right, which comes in with them, and they know they’ve got it and their families know they’ve got it, then you’re going to have to plan a little bit differently, and better, and that would improve matters.

I know I must say about, you know, involvement in patient planning. I must say that for The Patients Association. And I must say for both The Patients Association and Care Rights UK that access to healthcare remains a fundamental equal right in our system and you really shouldn’t be saying to somebody, “I’m sorry you’re living in a care home, you can’t see a doctor”, “I’m sorry, you’ve got – you’re old”, or, “You’re disabled, this isn’t going to be available to you.”

I must say that very strongly for patients of the future.

Mr Scott: Thank you, Ms Jones. Those are all the questions I have.

Lady Hallett: Thank you very much, Mr Scott.

Mr Weatherby.

Questions From Mr Weatherby KC

Mr Weatherby: Ms Jones, I ask questions on behalf of the Covid Bereaved Families for Justice UK group. Just a few short points from me. I want to start with shielding decisions and public health messaging and mainly about The Patients Association surveys. So if you can’t help then obviously you’ll say so but I think you will be able to from the excellent statement that you’ve put in to the Inquiry.

One of The Patients Association services covered in that statement, and for the record it’s paragraph 138.1, found that two-thirds of respondents to the survey who had shielded had not been advised to do so by the NHS and that most people had shielded on their own judgment. And it also showed that there had been low levels of satisfaction with shielding guidance and there’d been confusion about it because of a lack of clarity.

If you’re able to say, does this indicate a problem with the reach of official advice about shielding during the pandemic? Or does it show a problem with public trust in that official guidance, or both?

Ms Julia Jones: I think it shows people’s caution and people’s fear. I think – and also people’s wish to protect others who they love. I think that – and there’s probably a confusion, and I probably shared it for a bit, between voluntary self-isolation and shielding.

Mr Weatherby KC: Yes.

Ms Julia Jones: I think a lot of people, particularly those who felt they had a vulnerable member of their family, did voluntary self-isolation, and perhaps – and also people themselves who felt they had a health condition and they were frightened chose to keep themselves out of society.

And I have often thought it was a great pity that when people are looking at infection prevention and control risk factors that somebody who had been voluntarily shielding, or self-isolating or whatever we want to call it, that wasn’t taken into any sort of account if they then wished to visit or care for the person at their heart if that person was taken into hospital.

It wasn’t listened to, and I think that’s a very great waste and a pity.

Mr Weatherby KC: Yes. Okay, what are the lessons going forward here? Are the lessons in terms of this issue of shielding guidance identifying groups like yours or Patients Association and to liaise with them about proper guidance, what it actually means to shield or self-isolate, and better planning generally? Are those are the lessons?

Ms Julia Jones: Well, clearly there are people who should have been consulted, and I wouldn’t say it was us, because we’re just, you know, a little campaign movement, but there are people, you know, with – you’ve had, you know, some wonderful witnesses representing clinically vulnerable groups, so of course I think those specialist people –

Mr Weatherby KC: Yes.

Ms Julia Jones: – you know, should have been involved.

But I think for many people the root anxiety, and this came out in The Patients Association surveys, was their feeling of disconnection from their GP. And I worry enormously – and I’m a bit digitally challenged myself – about how our relationships with our GPs are going forward. And I listened to, you know, the gentleman from the BMA saying: no, no, GPs know their patients best –

Mr Weatherby KC: Yes.

Ms Julia Jones: – these things should come through GPs. I’m not at all sure that that continues to be the case.

I think it would be wonderful if everybody in our four countries felt they had this personal relationship with their local surgery but I’m worried about it.

Mr Weatherby KC: Partnership?

Ms Julia Jones: Partnership, yes.

Mr Weatherby KC: I’ll come back to it, if I may, in my final question, but before I get there a final point on shielding: a respondent to The Patients Association survey highlighted the issue of invisible disabilities – again, for the record, paragraph 142 of your statement – and that included mental health difficulties. And these invisible disabilities were being overlooked in the public health messaging, the shielding guidance.

Again, it’s kind of the same question, but how should these invisible disabilities have been better accounted for and supported when advice was being offered during the pandemic?

Ms Julia Jones: I think there could – should and could have been a more sophisticated understanding of the impact of isolation on people, and I think that runs through everywhere, everything that you’re talking about, and the impact of disconnection.

I think perhaps we’ve all learned quite a lot through the pandemic about how people need each other for their identity and how people need to feel valued. If you’re in the situation where people are either voluntarily or on advice withdrawing from society, I think it’s extremely important to try to alleviate that.

Mr Weatherby KC: Yes.

Ms Julia Jones: And people have mentioned some of the excellent voluntary mutual aid initiatives that sprang up but I’ll bet you they only sprang up in certain areas.

Mr Weatherby KC: Okay.

Ms Julia Jones: I think those sorts of other ways of keeping contact, particularly for people who don’t have families to ring them up, should have been prioritised.

Mr Weatherby KC: So the guidance shouldn’t have missed invisible disabilities in the first place but should have addressed how local groups, for example, or support networks could have been –

Ms Julia Jones: And there’s potential for those difficulties being exacerbated.

Mr Weatherby KC: Yes.

Final point, and it’s rolling back to this idea of partnership, we know and we asked to be added to your document bundle, so I think you’ve probably seen it, there was a letter from Rachel Power, the chief executive of The Patients Association, sent to Sajid Javid just on his appointment as health minister in June 2021, so quite into the pandemic, and the whole letter was about the absence of a role for patients –

Ms Julia Jones: Yes.

Mr Weatherby KC: – within the pandemic proposals. And Ms Power was explaining to the new health minister really the importance of partnership. I’ll just read one sentence from it:

“The Patients Association exists to ensure that everybody can access the health and care they need to live well, and our priority is to secure equal partnership between patients and those who deliver the care they need.”

Does that encapsulate what is at the heart of all of these matters, that there is a need for a recognition that healthcare must involve the patient as well as the provider in this partnership? I mean –

Ms Julia Jones: I mean, I would make it a three-way partnership.

Mr Weatherby KC: Yes.

Ms Julia Jones: You knew I was going to say that. And Ms Power says it in her letter. Because for some people, advocating for themselves as patients, some people can do it, some people can’t. And that’s why I really feel we need recognition for the – what I’m calling the invisible army.

Mr Weatherby KC: Yes. And this letter and things like this letter, does this illustrate really that there was a lack of an equal partnership or a three-way partnership, as you put it, during the pandemic when it came to healthcare provision?

Ms Julia Jones: I think there always is. I think, as I was saying before, it’s the sick individual and the people who are worried about them and the big institutions, and anything we can do to break down that – and remember that the patient is the whole purpose of the institution. The institution – we weren’t there to Protect the NHS, we were there to help to save individual lives, to protect individual people.

Mr Weatherby: Thank you very much. That’s very helpful.

Lady Hallett: Thank you, Mr Weatherby.

Mr Wolfe, I think (unclear) might say you (unclear).

Questions From Mr Wolfe KC

Mr Wolfe: My Lady, I seem to have disappeared behind a screen, but I think I can just see you.

Mrs Jones, I just want to give you an opportunity, if you want it, to come back to a couple of topics and say a bit more if you want to.

The first relates to people with dementia in hospital during the pandemic and their particular experience. You’ve touched on the position of people with dementia generally.

What were the particular difficulties faced by people with dementia in hospital during the pandemic?

Ms Julia Jones: I think if you’d designed a system to make dementia worse you would have pretty well done what happened in the pandemic. And when you think how serious an illness dementia is – I was looking up some stats the other day, and from the period from 2019 to 2022, 2023, for women dementia was the biggest killer in all those years, dementia remained the biggest killer and very often it’s the biggest killer for the whole of society.

So dementia really matters. There is nothing you can do to cure dementia. You can only make it steady or you can make it worse. And all those things that happened to people with dementia in hospitals were – the move from ward to ward, the people dressed in masks, the emotional temperature of the hospital, people with dementia may not be able to express themselves very clearly, but they can feel very acutely and they can feel very aware and very frightened but there’s nothing they can do about it, and they’re out of their comfort zone and they’re away from the people who are relied upon to care for them and they don’t understand why.

How much more can one say?

Mr Wolfe KC: What, in simple terms, should have been done, could have been done to address those things, or perhaps was done in the best places but wasn’t done everywhere?

Ms Julia Jones: Yes, yes, thank you. It was recognised by NHS England, was recognised at the top levels in Wales, these are people with additional needs, was recognised in the guidance, but it wasn’t implemented. And why didn’t people check that it wasn’t being implemented? That’s what I don’t understand. It’s not that we just had a terrifying first month, we had two years, as Mr Weatherby has just said, there were two years of the pandemic to make these things better, and in the good hospitals people caring for people with dementia or learning difficulty were very often welcomed back in, in a careful way, to the benefit of the patients, and also to the benefit of the staff, because we realise how stressed and how exhausted all staff were. So if you’ve got somebody who says, okay, I’m going to help with this person, that’s a plus.

In our witness statement we mention the case of Claire who was caring for her husband – father, sorry, Bruce, who had Parkinson’s dementia and had had a heavy fall and so had to go into hospital, and she had recently had Covid, the risk to her was negligible, she’d had the jabs, all that, and so when she was able to care for Bruce, Bruce was recovering. Then, unfortunately, while he was in hospital he caught Covid and was then moved into a Covid area, at which point the ward door clanged shut, Claire was not allowed in, despite the fact that the risk to her, she’d been shielding, she’d had the vaccines, she’d had Covid, she was actually a medical aid worker. She was okay. She wanted to go in but she wasn’t allowed.

By the time her father was eventually allowed out again, and there was a lot of muddle about infection areas and non-infection areas, it was too late for him. His Parkinson’s treatment had stopped, because that’s very specific treatment and it hadn’t happened, his body weight had dropped, he’d deconditioned. Older people in hospital without stimulation decondition and you don’t get it back again. And so he just came out to die. And that was unnecessary.

Mr Wolfe KC: And had he been properly supported, including by his daughter, how would that have helped the staff?

Ms Julia Jones: Well, one would like to think that the overstretched staff doing their best in those circumstances would have welcomed the assistance.

With Parkinson’s, for instance, you must have your medication absolutely at the right time. Now, you’ve got a whole ward to manage and a lot of demands upon you. If you’ve got somebody looking at her watch and saying, “Ah, time for Dad to have his Parkinson medication”, that surely is a help? The trouble is I think that the exclusion and the saying “no” sort of became institutionalised, and care did suffer and ward staff were aware that their care was not to the standard that they wanted it to be, and in those situations perhaps you don’t want outsiders coming in because, you know, it’s just a little bit of psychology. If you’re not doing very well, you don’t want necessarily a loving daughter coming in and, “Oh, what have you done to my dad?” In fact you should say, “Oh please, come in, help us with your dad.” But it doesn’t always work like that.

Mr Wolfe KC: Could I ask you about a different topic, visitor guidance. So Dr Warne in his evidence to the Inquiry, described visitor guidance as an under-studied area, a misunderstood area. I’d imagine you agree with that. How could visitor guidance improve in terms of the things about which you’re concerned?

Ms Julia Jones: I think by differentiating between the social and the therapeutic aspects. So – and I’m not saying that it’s not great to have visitors if you’re in hospital, you know, the grape bearers, the chocolate bringers, they are lovely and they make you feel valued and they cheer you up and that’s all good and well-being matters, so all those things matter, but I think we’re talking about something very much more fundamental here and that is what I would call therapeutic visiting and that comes from the person who makes your life worth living. Because in hospital you might become very discouraged, you’re in pain, you wonder is it worth carrying on, and for many people there is somebody or some people who make life worth living and that’s why in your heart you carry on.

So I think – sorry, a bit of a non-answer. On a good hospital website you will see differentiated guidance for visitors and for carers. The Department of Health has just upgraded their visitor guidance to make visiting part of the fundamental standard, but what NHS England is trying to do is establish care partner guidance and make it much more obvious why staff should welcome this person if they’re willing to come, it’s a voluntary role, and if the person wants them. Nobody has to have anybody they don’t want.

Mr Wolfe KC: Final topic if I may. Different sort of guidance. The end-of-life guidance.

So Professor McArdle described the way in which the end-of-life guidance changed over time including in particular acute periods of Covid pandemic, limiting visits in extreme circumstances as they were called. Do you think that concept of extreme circumstances were sufficiently understood at the time?

Ms Julia Jones: I think it’s the single most horrifying and distressing aspect of the pandemic. The whole – all the edifice of guidance and infection control was because we are all terrified of death and we want to avoid death, and then to say, “And by the way if you are dying you’re not necessarily going to have the person you love with you” or for the person outside “You’re not necessarily going to be with the person who is dying”, that should be an absolute right. Somebody who is dying, if it’s possible, and I mean possible because their family are willing to come in to possibly an infectious area, that should be an absolute right.

There shouldn’t be – and if it’s known to be an absolute right then you have to work out in practical terms how to facilitate it. And people are very good, if they know they’ve got to do something, they’re very good at finding ways to do it, and that’s what the good hospitals do, but it was just unacceptable – and the legacy of grief, guilt, anger, and mistrust that’s left behind it is massive and so if one could do just one single thing, it would be to say, if you are dying you have the right to have somebody with you and we will facilitate that and that is our legal duty.

Mr Wolfe: Thank you, Ms Jones.

Thank you, Chair.

Lady Hallett: Thank you very much, Mr Wolfe.

Ms Jones, you may have called yourself, I think – was it a little campaign group? – but you obviously do excellent work for people often in dire need of support, so please take my thanks to you and to Nicci Gerrard for all that you’re doing, and if I may say, so you’re also an excellent advocate of the cause. You’ve been extremely helpful, articulate and constructive, and I’m very grateful to you and all the other people who have joined in your group for the work that you are doing.

The Witness: Thank you for giving us the chance because you didn’t have to, and thank you very much.

Lady Hallett: Thank you. I just hope that it’s a similar feeling to, I suspect, the Long Covid groups. It’s – participating in this Inquiry may get some recognition for the causes that you’re advocating.

The Witness: Thank you.

Lady Hallett: Thank you very much. I shall break now and return at 11.25.

(Witness withdrew)

(11.09 pm)

(A short break)

(11.25 am)

Lady Hallett: Mr Mills.

Mr Mills: My Lady, I call Ms Ritchie, who will affirm.

Lady Hallett: Can you hear us, Ms Ritchie? Are you hearing us? Maybe we need to get a message to the techies.

Mr Mills: I can see things are happening, my Lady. (Pause).

I’m speaking to test whether we now have sound to Ms Ritchie.

Lady Hallett: Can you hear us?

The Witness: Yes, I can.

Lady Hallett: Oh, you poor thing. You’ve been sitting there with us talking to you. I’m so sorry but we had, as you probably gathered, a technical hitch. If you could now just listen to the usher, please, to affirm or take the oath.

Ms Nicola Ritchie

MS NICOLA RITCHIE (affirmed).

Questions From Counsel to the Inquiry

Mr Mills: Your full name, please.

Ms Nicola Ritchie: Ms Nicola Ritchie.

Counsel Inquiry: Ms Ritchie, you have provided a statement to the inquiry. The reference is INQ000492258.

You are a mental health physiotherapist and a member of Long Covid Physio, is that right?

Ms Nicola Ritchie: That’s correct, yes.

Counsel Inquiry: And you are here today to assist the Inquiry by providing evidence of your experience of developing Long Covid in the course of your work as a healthcare professional, and your subsequent efforts to secure a diagnosis and treatment.

Can I begin by asking you to describe your physical health before you developed Long Covid?

Ms Nicola Ritchie: My physical health before, I was incredibly fit, I think I was actually the fittest I’ve ever been in my life. I swam a mile twice – two or three times a week in the mornings before I went to work, I would walk my dogs an hour and a half every day, I went to exercise classes, I went to the gym, I went hill walking, anything I could just to be fit and active. I loved to exercise and that is something that I really miss doing now.

Counsel Inquiry: And again, before Long Covid, what was a typical working day like for you?

Ms Nicola Ritchie: A typical working day, I cover the whole hospital for – around about 12 wards or so and the wards cover in-patients covering from older adults to younger adults to brain injuries, to enduring mental health in forensic patients. I would be treating them for multiple traumas, orthopaedic fractures, sore backs, mobility issues, anything and everything really. I would also see some outpatients as well.

We had a number of exercise classes during the week as well, so I would be taking part in them and leading them as well.

Counsel Inquiry: Can you take us, please, back to April 2020 and share with the Inquiry how you contracted Covid-19?

Ms Nicola Ritchie: I contracted Covid-19 in the workplace. I firmly believe that I contracted it from a patient that was within the hospital. The patient was seen as being positive for Covid but untransmissible. I don’t really understand why that was the case but that was what the medical staff had told us in the hospital. He had been positive for around about 14 days or so, but we had to see him for a multiple of different reasons and it was myself and one of my colleagues that went to go and see this patient and we both developed symptoms about a week and a half later but we developed the symptoms on the same day and that was the only patient we had seen together.

I feel the PPE that we were given was inadequate to be seeing patients that had Covid. It was generally the fluid-resistant face mask, gloves and a sleeveless gown is what we were wearing to go and see patients at the time. I had been face fit tested for more appropriate masks, but because I was not carrying out aerosol-generated procedures, I was told that I was not to wear them and that was the guidance at the time.

Counsel Inquiry: Had you expressed any concern about seeing a patient presenting with Covid-19 with only the PPE that you have described?

Ms Nicola Ritchie: Of course. I felt that we should have been wearing more appropriate PPE regardless of who we were seeing. At the time Covid was so unknown, it was quite a scary time to be working because nobody knew what to expect and nobody knew what was going to happen and there were so many people dying all over the world. That was not something that I wanted to be exposing myself to.

Counsel Inquiry: Can you describe the symptoms you began to experience?

Ms Nicola Ritchie: I started off with a cough, but the cough didn’t last particularly long. It was only over a couple of days I had the cough, but I experienced temperatures, the temperature lasted possibly a week or so, but it was mainly the fatigue. I was extremely fatigued. I was sleeping pretty much the majority of the day, only awake for maybe an hour or two in the day. I tried to do anything at all, get up, get washed, even put a load of washing on and I was completely and utterly exhausted from it.

I had very bad shortness of breath from doing anything at all and I had a lot of pain. I had never experienced back pain in my life, but for some reason my back had become very painful and I couldn’t understand why.

Counsel Inquiry: Were you self-isolating during this time?

Ms Nicola Ritchie: Yes.

Counsel Inquiry: How long did you self-isolate for?

Ms Nicola Ritchie: I isolated for two weeks. That was the recommended time to take off at the time so I isolated for the two weeks.

Counsel Inquiry: And during the two weeks did your symptoms improve or did they become worse?

Ms Nicola Ritchie: They became worse and then better, so worse over, like, the few days that I first contracted it and then gradually better, but I wouldn’t say better to the point that I was functioning. I felt after the end of the two weeks that I had never really taken time off work so being off was really alien to me. I felt that if I pushed myself to get back then I would get better faster. But that was – in hindsight that’s a very silly thing to do but I feel like if I did push myself I would be able to get back into a routine, get back to normal a little bit faster but it took me quite a number of months then to be able to do anything that I would have done normally.

Counsel Inquiry: We’ll come in a moment to look at the extent to which you’re able to carry out your regular duties when you returned to work, but can I ask this before we move on. During the two weeks you were self-isolating, were you able to access a test for Covid-19?

Ms Nicola Ritchie: No. There was an online application system within the NHS trust that I worked for, and I applied for a test at the time but I never actually heard anything back from it. At the time I was told, word of mouth, that there were maybe possibly 20 tests being carried out every day at that point, so I imagine, yeah, there would have been hundreds of tests needed to be carried out every day.

Counsel Inquiry: When you returned to work and you’ve told us about the routine of your working day before this time, to what extent were you able to carry out those regular duties?

Ms Nicola Ritchie: I was back to working my full-time days but I was very much unable to carry out my full duties. Because of the fatigue and the shortness of breath and the discomfort, the pain that I was in, I really struggled to carry out any exercise as such or cart – like, any of the moving and handling, any of the more difficult moving and handling that I would have to do. I had to – basically I had to do a lot of online learning, I had to do a lot of lighter duties. I couldn’t do all of my duties at that point.

Counsel Inquiry: You say in your statement, and I’m at paragraph 29, that the muscle pain you had during the acute stage developed into severe back pain?

Ms Nicola Ritchie: Yeah. And as a physiotherapist, I thought: I know how to treat this, I’ll use all of the tools in my toolkit that I’ve been teaching everyone all of these years. And no matter what I did, it only got worse.

Basically I did an assessment on myself, I carried that out. I thought: these are the exercises that would generally help back pain like this. And literally everything I did made it worse. The only thing that actually helped was when I had a bug, like a very bad bug, a few weeks down the line, and I was basically bedbound for another couple of days, and that helped to ease my pain. Which goes against everything we would ever say as a physio: don’t go to bed and rest because that’s not going to help your back. That was the only thing that helped me.

Counsel Inquiry: Moving, please, to September 2020. You describe in your statement, and these are your words, suffering a “severe ‘crash’” in September 2020.

Can you explain, please, what happened to you, and perhaps also what you mean by that term “crash”?

Ms Nicola Ritchie: Well, I would say that between April 2020 and September 2020 I’d pushed myself as much as I possibly could within my limits to get back to fitness, to get back to what I would normally be doing. In hindsight again, after hearing many other people’s stories of similar experiences, it’s probably the last thing I should have been doing, but all I wanted to do was get back to some sort of normality.

For maybe four to six weeks over the summer I was able to do a little bit more of my normal kind of exercise. I went hill walking again, I was enjoying walking the dogs. Then September came and all of the original symptoms of Covid came back.

I thought I was positive again, but on testing I wasn’t. I think it’s because I pushed myself too much and my body then responded very negatively. And I have never recovered since. That’s why I call it my crash, because I crashed and I’ve never recovered from it.

I – sorry.

Counsel Inquiry: Take a breath, Ms Ritchie.

Ms Nicola Ritchie: Yeah. Sorry, I’ll just take a drink.

My original symptoms that I had carried on. The breathlessness, the pain – the pain came back just as bad as it had done the first time around – the lack of ability to exercise. For example, if I was – well, sorry, I took two weeks off work as usual. I thought: right, I’ll get back to work as normal. But when I got back even basic things like very, very gentle exercise, if I was doing anything, like, say, a push up against the wall, I would be sore for a week. All of the muscles that were involved in that exercise would give me pain for a week and I would be struggling to move.

That has basically led to me not being able to exercise. If I do any kind of exercise now that is the kind of thing that will happen to me.

I went back to work and was on even lighter duties than I had been the first time around.

Counsel Inquiry: Around this time did you become aware of the term “Long Covid”?

Ms Nicola Ritchie: I think it would have been around about the December I heard about it in the news. And I did a little bit of research into it and so many of the symptoms resonated with what I’d been experiencing. I didn’t have a clue what it was but I’ve been on quite a learning experience since.

Counsel Inquiry: Can I ask this. Did you discuss the possibility of you having Long Covid with your GP?

Ms Nicola Ritchie: I did. I phoned the GP, I think it was in the December, and I said I feel like I may have Long Covid. They asked me why, I explained the symptoms I’d been experiencing, and it was never questioned. No differential diagnosis was ever chased, no testing was carried out, they just took my word for it that I had Long Covid.

Counsel Inquiry: At your paragraph 33 you say this:

“I spoke to my GP. My GP responded that there was nothing they could do, and I should look online for resources.”

Ms Nicola Ritchie: This is something that I have heard continually from my GP basically since. I have had multiple contacts with the GP, to the point that I’ve stopped contacting them because every time I did it was a case of “There are online resources, there’s nothing that we can do”. Yeah. “Go and have a look online. It’s for self management only.”

Counsel Inquiry: I think around this time, in December 2020, you also found out you are were pregnant?

Ms Nicola Ritchie: Yes.

Counsel Inquiry: Can I ask this, did being pregnant have a noticeable effect on the Long Covid symptoms you were experiencing?

Ms Nicola Ritchie: Massively so. Basically from day one of being pregnant I couldn’t understand why I was suffering from debilitating fatigue, like I’d never experienced anything like it in my life.

I had gone in to work and I tried to push through it, but after maybe a week or so of trying to really push myself through that I had to basically end up going off sick because I struggling so much. I was going home and not functioning. I wasn’t able to do anything on my days off, I just – it was just – it was so challenging.

Counsel Inquiry: As we move into the new year, in January 2021 I think you joined Long Covid Physio, is that right?

Ms Nicola Ritchie: Yes.

Counsel Inquiry: Can you tell us a little bit about how you found out about that organisation and what help being a part of it has offered you?

Ms Nicola Ritchie: I think I heard about it – it was a webinar on Long Covid that one of the main people within Long Covid Physio had been providing, to give a little bit of education for people. So I had a look online and found out that it would be quite a fantastic thing for myself. It was mainly – I joined it for peer support; at the time there were only a few of us that were members of Long Covid Physio.

And what was fantastic about it was we could ask all of the bizarre symptoms. There are so many symptoms that Long Covid has but none of it made sense at the beginning and we couldn’t figure out what was going on. So we kept almost like a back and forth with each other just to find out: are you experiencing the same as this? What does this mean? And we all kind of figured it out together, it was fantastic.

Counsel Inquiry: You say in your statement that the more people that joined the group, the more information there was?

Ms Nicola Ritchie: Yes. And that was key because, well, the more people, the more knowledge. And it was just – it was eye-opening for me because so many people had so many good hints and tips of different things that you could try to try to help yourself to get better, and I was willing to try anything.

Counsel Inquiry: At your paragraph 39 you say:

“In July 2021 I was finally provided with a diagnosis of Long Covid from a consultant at my local hospital.”

How did that diagnosis come about?

Ms Nicola Ritchie: I basically went to my doctor and said, “If you can’t help me, please send somewhere that can”. So they sent me to – it was just, like, a general department within the local hospital.

I had been asking my GP for a number of months to put Long Covid or something Covid related on my fit notes for work, because I wasn’t going to be getting any sick pay for being off from the six-month mark, I would have been down to half pay or no pay, but with that Covid diagnosis on my fit note, I would have been able to get Covid special pay, which was quite important at the time.

So I basically had to go to that department to get a diagnosis.

Counsel Inquiry: Having first contracted Covid-19 in April 2020, then suffered your crash in September 2020, how did you feel in July 2021 when you received your diagnosis of Long Covid?

Ms Nicola Ritchie: At the point it was a means to an end. I knew I had Long Covid. It was a case of a bit of validation that somebody actually believes me, but at the same time they turned round and said to me: what are you actually expecting from being here, because there’s nothing we can do?

So it was a good thing that I had the diagnosis, but on the other hand there was nothing that they could do, to offer me, to help. So I was still left in limbo.

Counsel Inquiry: In September 2021 you gave birth to your daughter and I think within a month or so you had contracted Covid-19 again, is that right?

Ms Nicola Ritchie: Yes.

Counsel Inquiry: On that occasion were you admitted to hospital?

Ms Nicola Ritchie: Yes.

Counsel Inquiry: How long were you in hospital for?

Ms Nicola Ritchie: I was in for four nights.

Counsel Inquiry: Can you describe the symptoms you experienced during that infection and the treatment you received, please.

Ms Nicola Ritchie: During that infection it was mainly the debilitating headaches that I struggled with more than anything. I had the fatigue, I had the fever, all of the usual things but it was the headaches. I had incredibly bad light sensitivity so I was basically sitting in the dark for days in the house.

I was unable to eat because of nausea, I was unable to drink because of the nausea, so I was admitted basically because I was so dehydrated my oxygen saturation levels were low so I required supplementary oxygen when I went into hospital. I had to be put on a drip because I was so dehydrated.

Yeah, it was – it was not a fun time.

Counsel Inquiry: Can I ask you now, please, about the treatment that you have been able to obtain for Long Covid.

In your statement, from your paragraph 43, you set out the private treatment that you have sought. Can you tell us a little bit about that, please.

Ms Nicola Ritchie: In March 2023 I had basically had enough. I had been fighting, trying to get some form of treatment from the NHS since probably from the December 2020 and I kept getting knocked back every time but I was researching everything that I possibly could to help myself. I eventually found out there was a private GP seeing patients with Long Covid so I thought: I’ve got nothing to lose, I will go on the waiting list.

At the time it was a video call that I had, thankfully, because the clinic was in Stirling, which was quite, quite a long way away but this was the clinic that pretty much most Scottish people with Long Covid have gone to at some point.

It was one of the most validating experiences I think I’ve ever had. She believed everything I said, I didn’t have to fight to get my point across. I told her the symptoms I was experiencing and she diagnosed me and offered medications to try and help my symptoms. It was a massive relief to be heard.

Counsel Inquiry: Did the medications help?

Ms Nicola Ritchie: They have to an extent in terms of I have managed to stabilise my symptoms so I don’t have bad crashes as much any more, my headaches have been helped massively, things like that, but I still am operating at a very low level.

My fatigue, my brain fog, everything like that is still at a very low level that I struggle to function day to day, but I don’t experience the ups and downs that I did before which was – which is a massive improvement for me.

Counsel Inquiry: You have also attended a Long Covid practitioner service?

Ms Nicola Ritchie: Yes.

Counsel Inquiry: What did that service offer you?

Ms Nicola Ritchie: It’s mainly run by other allied health professionals which is fantastic for anyone that’s in the initial stages of recovery because they can teach all of the pacing advice and lots of the educational things to self-manage in the initial stages, but because I’d been going through it for almost four years by that point I had followed all of that advice and I had managed to get my pacing down incredibly well.

This is the sort of thing that I teach to patients on a day-to-day basis in my work so if I don’t follow it I’m kind of a hypocrite really. So I knew exactly what I should be doing and everything that they went through with me was just reinforcing that I was doing the correct things.

I did ask for a medication review because I had been on the medications that the private GP had prescribed to me for about a year and I said that I think it’s about time we had a review just to see if there’s anything that needs to be changed with them, or anything along that lines. So I had an appointment with the consultant within the practitioner service and I was told that basically all of the medications that I had been prescribed, there was no evidence behind them so I shouldn’t be on them, so I was a bit deflated with that. It was quite difficult.

Counsel Inquiry: Can I move to our final topic, please. The impact of Long Covid on both your physical and mental health.

You have throughout your evidence described the symptoms you have suffered through 2020, 2021. Can I ask you, please, for you to describe your current persistent Long Covid symptoms?

Ms Nicola Ritchie: At the moment I have symptoms of PoTS or orthostatic intolerance, so basically when I stand up, when I go from lying to standing or sitting to standing, my heart rate elevates quite significantly. If I do any kind of exercise as in maybe 20 or 30 seconds’ worth of very basic exercise with patients, my whole body feels like a lead weight and I can feel palpitations, my heart is incredibly fast. I get short of breath very, very easily. And I still experience incredibly debilitating fatigue.

Throughout the conversation today I have obviously been struggling with a lot of brain fog. Word finding difficulty is one of my big ones, even just basic easy words. It took me about 12 hours to think of one word yesterday. I was texting a friend to try and find out this one word but I could not think of it for the life of me. I had about five different ways to explain one simple word but I could not think of that one word. But that’s just day-to-day for me now.

I’m trying to think of other symptoms that I experience. Basically I have to use a mobility scooter because I can’t walk any distance at all. If I try and walk any kind of distance I really struggle. The post-exertional malaise is awful. I think I have around about a 2,000-step limit every day and that includes walking around the house, like going back and forth to different rooms and things like that. So that is my maximum really. I normally try and stay around about the 1,000 limit and that’s kind of more comfortable for me but anything over 2,000, I know I’m going to struggle the next day or later on that day.

Counsel Inquiry: In your statement you used the term “energy spoons”. Can you describe to us how that helps you manage your energy?

Ms Nicola Ritchie: Every day I have to pace to within an inch of my life. So everything I do is planned. I can do one thing a day whether that is going to an appointment, taking my daughter to a 30-minute swimming lesson or meeting a friend for a coffee. I have to basically think of everything I have to do within that day and I have an infinite – well, I have a certain amount of energy for that day that I can use and I have to pace it through that day.

I think of things almost like if I get up, if I have a shower, that’s one spoon for the day. I have, say, maybe ten spoons for the entire day. Washing is one spoon. Having breakfast is another. Drying my hair, that generally takes two spoons because it doesn’t happen that often because it is so exhausting. Things like that.

If I have to do anything within the day that has to be allotted to a certain length, like a certain amount of energy and I have to make sure that I don’t go over that, that allocation of energy spoons.

Counsel Inquiry: What has been the impact of developing Long Covid on your career?

Ms Nicola Ritchie: It has been massive. I feel like I am at risk of losing my career. I have been fighting since I got back to work to try and stay within my career because it’s something that I am passionate about, it’s a job that I love, I love treating people, I love helping people. But because of what has happened to me with Long Covid and the symptoms that I struggle with every day, since I’ve been back I’ve had to reduce my hours even more. So I was previously full-time, now I’m down to 18 hours a week. But even that is still a struggle.

I’m on restricted duties – well, not restricted duties. I’ve got reasonable adjustments. So I have a mobility scooter to get between wards. I – at the moment, I don’t have to participate in the exercise classes because of the impact that they have on me. It’s quite scary really because I don’t want to lose my career, although being in the workplace for me at the moment is still a terrifying place, because of the risk of contracting Covid, I still want to be there, I still want to help people, I still want to be able to fulfil my role. It is something that I am really passionate about and something that I still want to continue to do, but I can only do that if the reasonable adjustments are continued longer term.

Counsel Inquiry: Finally this, please. Can you help the Inquiry understand how Long Covid has affected the way you are able to interact with your daughter?

Ms Nicola Ritchie: It has been very challenging. She is my only daughter and since she was born I have really struggled with such fatigue. When she was born I couldn’t stand up and hold her because of the effort involved. I couldn’t walk around the room with her. I still can’t carry her and walk because I become so incredibly breathless and fatigued straight away.

If I go to the park, someone else has to be with me because I can’t run after her. If we do anything along that lines basically someone else has to be there because, yeah, she is full of energy and I can’t match that and it’s so difficult. We spend quite a lot of time doing things in the house, like different toys and games and things likes that in the house because it saves my energy which is so incredibly difficult because all I want to do is run around the park and play with her. But I have to make sure that I can do as much as I can with her for the rest of the day and if I do too much at one point of the day I’m gonna be useless the rest of the day and not be able to care for her.

Mr Mills: Ms Ritchie, thank you.

My Lady, that’s all I ask.

Lady Hallett: Ms Ritchie, thank you very much indeed. I’m really grateful to you for your help. I can’t imagine how difficult it is to manage the symptoms you describe and a three-year-old. Is she a bit of a terror?

The Witness: She very much is.

Lady Hallett: That doesn’t surprise me, having had grandchildren recently at that age. But thank you so much. I do hope your symptoms improve. I hope your career does thrive when they do improve and I hope the relationships within the family get much better as you get better. So thank you for all your help.

The Witness: Thank you.

(Witness withdrew)

Mr Mills: My Lady, may I next call Professor Chris Brightling and Dr Rachael Evans, who will both affirm.

Lady Hallett: Thank you.

Professor Chris Brightling

PROFESSOR CHRIS BRIGHTLING (affirmed).

Dr Rachael Evans

DR RACHAEL EVANS (affirmed).

Questions From Counsel to the Inquiry

Lady Hallett: I hope you haven’t been waiting for too long. I think you did arrive quite early so I’m sorry if we’ve kept you waiting.

Mr Mills: Your full names, please, perhaps starting with you, Professor.

Professor Brightling: Professor Christopher Brightling.

Professor Evans: Professor Rachael Evans.

Mr Mills: I’m so sorry, Professor Evans, I introduced you as Dr Evans.

Professor Evans: That’s fine.

Lady Hallett: I think you introduced both of them as “Doctor”, actually.

Mr Mills: Did I?

Lady Hallett: There’s nothing wrong with that.

Mr Mills: You have, Professors, both provided a report to this module of the Inquiry. For reference, that is INQ000421758 and it’s right, isn’t it, you also prepared a report and gave evidence to Module 2?

Professor Evans: That’s correct.

Counsel Inquiry: Can I begin with a very brief summary of your experience.

Professor Brightling, you are a professor of respiratory medicine at the University of Leicester and you have been a treating consultant physician since 2004?

Professor Brightling: That’s correct.

Counsel Inquiry: Professor Evans, you are an Associate Professor at the University of Leicester and an honorary respiratory consultant physician at the Glenfield Hospital which is part of the university hospitals of Leicester NHS Trust?

Professor Evans: Correct.

Counsel Inquiry: Since 2020 both of you have been involved in studying Long Covid and treating those with it.

Professor Evans: That’s correct.

Counsel Inquiry: Now, I know that you have divided areas of the report between the two of you. We’ll adopt the same format as when you last gave evidence with whoever took the lead on a particular issue providing the answer.

Can we begin, please, by setting out the central pillars of our current understanding of Long Covid. First, the definition.

Please can we go to INQ000238545.

This is an extract from NICE’s managing the long-term effects of Covid-19 and we have here under “Post-COVID-19 syndrome” this:

“Signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.”

Is this the definition according to which Long Covid is diagnosed?

Professor Evans: Yes.

Counsel Inquiry: Can you help, when did NICE establish this definition?

Professor Evans: That was towards the end of 2020. But the patient-derived “Long Covid” term happened much earlier.

Counsel Inquiry: Quite. And we see here, don’t we, “post-Covid-19 syndrome”. Is that a term you use or do you use the “Long Covid” term instead?

Professor Evans: I and our clinic use the “Long Covid” term.

Counsel Inquiry: Can you help the Inquiry understand why that is.

Professor Evans: Because it was developed for a reason. It was developed by the people that were experiencing this and they chose the language very carefully. They describe in their report their concerns around the post-Covid-19 syndrome and I think it’s very helpful that we all use the same language and that we are a group together. We don’t want language to become divisive between patients and healthcare professionals and researchers.

And there wasn’t any new science that led to that definition. I think that would be a different scenario. But I think any terms going forward need to be jointly agreed by all the stakeholders.

Counsel Inquiry: If we can just return to the NICE page here. The paragraph below the one we’ve just read together says this:

“In addition to the clinical case definitions, the term ‘long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more).”

Do you find this use of the phrase or the term “Long Covid” a helpful one or not?

Professor Evans: I think so. I think it’s the term that most people understand and understand what is being described, both patients and healthcare professionals – and researchers and now the media.

Counsel Inquiry: Next, please, this. The Inquiry has heard Professor Whitty use the phrase “if you don’t get Covid you don’t get Long Covid”, but what, if anything, does the severity of someone’s acute Covid infection tell us about (a) the likelihood they will develop Long Covid or (b) if they do, how severe their Long Covid symptoms will be?

Professor Evans: Okay I’m going to answer that question in two parts because it is quite nuanced.

If we’re talking about cohorts of people, you are – there’s a greater likelihood of getting Long Covid if you have a more severe acute infection.

And in a cohort there would be more chance of having severe ongoing sequelae Long Covid according to how severe the infection is. However, it’s really important for everyone to understand that somebody can have a very mild infection, in fact sometimes even be asymptomatic, and (a) still get Long Covid and have very severe Long Covid.

Counsel Inquiry: You say it’s really important for everyone to understand that. Do you say that because there is evidence, anecdotally perhaps or otherwise, that that for a time was not understood?

Professor Evans: I think that’s correct in the first few months of the pandemic and actually people with the lived experience of not being hospitalised and developing Long Covid very clearly articulate this issue, that the post-Covid sequelae in Long Covid was mainly, to begin with, studied and clinical care directed towards the awful illness that people were experiencing where they were hospitalised with severe lung injury, and healthcare and focus was very concentrated on that. As it should have been, but there should have been more understanding research and clinical care looking into those that were developing it in the community.

Counsel Inquiry: Next, can we think about someone’s characteristics. Are we able to identify the characteristics that increase the chances of someone developing Long Covid?

Professor Evans: Yes, absolutely.

The scientific evidence now is very strong, but again I give the answer in two parts, that there are risk factors for getting Long Covid. So we’ve already discussed one: the severity of the acute illness. Being around middle age, being female, having a higher body mass index, somebody with pre-existing co-existing conditions and those from lower socioeconomic status, all have been shown consistently in many research studies to have a higher likelihood of getting Long Covid.

But I think there has been a new definition of Long Covid this year that was published in one of the very high-impact medical journals, and I think one of the most helpful things that that statement made was that anyone is at risk of getting Long Covid. And that is absolutely true. From children to older adults, across different sexes, gender, different geography, different socioeconomic status, everybody is at risk if you’ve had Covid.

Counsel Inquiry: Do the same characteristics that you listed in your answer increase the chances of someone developing a more severe form of Long Covid as well?

Professor Evans: Yes. And again this was shown early on from the research studies, that, again, people of middle age, females, higher body mass index and more pre-existing long-term conditions were more likely to get severe Long Covid.

Counsel Inquiry: Is there evidence that healthcare workers as a cohort were at a higher risk of developing Long Covid during the pandemic?

Professor Evans: In relation to the fact that they were at higher risk of contracting Covid-19 during 2020, and certainly during that lockdown period when everyone else was isolated, they were much higher risk of developing Covid-19 and therefore higher risk of developing Long Covid.

And particularly in that time, just to take us all back, we weren’t – there were no vaccinations. So for most of 2020 if you were contracting Covid-19 it was the wild-type virus and pre-vaccination, so a much higher chance of developing Long Covid than now.

Counsel Inquiry: Next, some figures, please. Approximately how many people in the UK are currently suffering with Long Covid?

Professor Evans: The caveat to what I’m about to say, which I know we’re going to come on to at other points, is around data and the diagnosis of Long Covid on healthcare records.

Our best UK data comes from the Office of National Statistics and they published another report earlier this year showing an estimated 2 million people are still living with Long Covid.

And some really important statistics – that’s the same number as we had in 2023, so 2 million.

Some important statistics to highlight on that would be at least a million of those have been living with this, as we heard from Nicola, this very difficult illness, for at least two years. So it’s really showing that for a large proportion of people it’s not going away.

There are some people that have recovered but there are also at least – I think it was half a million that developed that since 2023, so there are new cases.

And a question that I’m often asked is: well, is it just a problem from 2020 or are you still seeing new cases in the clinic? And very tragically, we are still seeing new cases in the clinic, and the ONS data highlight that.

Counsel Inquiry: To put those figures into perspective, are you able to give examples of chronic illnesses that have a similar prevalence?

Professor Evans: Absolutely. So both Chris and I are in clinical care, we’re lung doctors, and we look after people with chronic lung disease, and one chronic lung disease called COPD, there’s at least 1 million people in the UK living with that condition and probably many more where it’s not been diagnosed.

Heart failure, very common long-term condition where the heart is not working properly. At least 1 million of those.

So even just combining our commonest chronic or long-term heart and lung conditions is very similar to the prevalence that we’re seeing of Long Covid.

Counsel Inquiry: With that context, are you able to comment on the scepticism that those suffering from Long Covid have faced when seeking a diagnosis?

Professor Evans: Yeah, it’s heartbreaking to hear but you heard from Nicola her experience, as a healthcare professional, and the qualitative studies where people living with this illness have been interviewed, and there’s been many of them now, so it’s not just one or two anecdotes, sadly, that people have faced scepticism both in the public and through their healthcare contacts.

And it’s –

Lady Hallett: Can I just – sorry, finish your answer and I’ll ask a question.

Professor Evans: I was going to add: and that’s deeply unscientific.

Lady Hallett: That may lead into my question.

I think I’ve been told, maybe by you in the past, that it’s well-known for a virus to have sequelae, and therefore why would medical health professionals not be ready for Long Covid, if you see what I mean?

Professor Evans: Yes, and I think it’s a really important question that actually this whole area has been under-researched and underinvested for clinical care for decades. But you’re right, the post-viral syndromes are well-known about and there are experts in that area.

Professor Brightling: If I may add to that, I mean, you’re absolutely right that people should have been prepared. So one of the first things that we and other colleagues did very early on in the pandemic is highlight that it was quite likely that there would be consequences that then were sustained after the acute infection and that was very much the driver for us to then seek early research funding. So I think it was clear but it didn’t seem to have the same priority early on, and the scepticism that you were asking about is clearly unfounded.

Not only have we heard testimony today and many people in this room could also give similar stories, we know from the epidemiology studies when you actually look at people who were studied before the pandemic, during and after acute infection, there was a step up in symptoms in those who had Covid infection compared to those who did not.

We know from imaging studies that there is organ damage in a number of patients, this is done by multi-organ magnetic resonance imaging, and we know from a number of blood tests that there is evidence of changes in the blood in particular around inflammation. So there’s overwhelming evidence that there’s a change in symptoms, organ damage and inflammation.

Mr Mills: Can I now ask you about symptoms. Approximately how many symptoms of Long Covid have been identified?

Professor Evans: Well over 200 is I think the largest number I’ve seen but I expect it’s even larger than that and experienced in very many different ways and wide-ranging which is extremely challenging for the person experiencing it but does give a challenge to healthcare professionals and healthcare symptoms as well.

And although there are over 200 symptoms reported, there are some that are particularly common, shall we say, and fatigue, breathlessness, we heard from Nicola about that back pain and pain that she’d never experienced before, difficulty sleeping, there’s a sort of cluster of quite common symptoms and certainly as a healthcare professional now, wherever somebody is working they should absolutely be alert to those symptoms and understand that that is really classic for Long Covid, and whilst in those definitions it’s really important to exclude other conditions that may either be contributing or causing the symptoms we can diagnose Long Covid as what we would call a positive diagnosis, ie a clinical diagnosis, because of the clinical scenario that it’s captured in, rather than – we would like to have a bio marker that tells us it is this disease but at the moment clinicians can make a positive diagnosis of Long Covid from the symptoms and the context of the illness.

Counsel Inquiry: What do we know about the persistence of those symptoms?

Professor Evans: So for any individual it can be quite different. For most people with Long Covid in that first, maybe it’s not most, but there are certainly different groups of people within Long Covid.

So there is a group, thankfully, that do get the symptoms that do seem to recover within that first year. We see that clinically. The ONS data highlights it and other studies have highlighted that. But then there is this very large group where the symptoms, if they’ve gone beyond a year, seem very persistent and certainly Nicola described the after-effect of that.

And Nicola also described that it wasn’t this sort of linear trajectory. Now, that can be the case for some people that they develop terrible symptoms at the time of the illness and then over the years they seem to improve a small amount. Other people really develop this waxing and waning of symptoms and that’s very challenging to live with and, again, others here would be able to describe that better than me but the planning, that you don’t know how you are going to be one day to the next, is very difficult.

Counsel Inquiry: Was the crash that Ms Ritchie described something you recognised?

Professor Evans: Yes. So we hear about this in clinical care. Now, Nicola’s was very obvious to her what had happened but actually many people aren’t quite so alert or knowing what’s happened so and that, where she describes that sort of episode in September, wasn’t it, where everything just became awful again. Some people will describe those crashes depending on what they’ve done the day before or the day itself and they can happen very frequently for some people and actually probably for many people with Long Covid they develop something that we term “post-exertional symptom exacerbation” that occur sort of 12 to 24 hours and last many, many days after a particular activity and that activity doesn’t have to just be a physical activity, it could be concentration, it could be emotion.

Counsel Inquiry: Professor Brightling, we may have already touched on this but what can you tell us about the mechanisms of Long Covid, that is the bodily processes by which Long Covid physically causes the symptoms we have discussed?

Professor Brightling: So we’ve learnt a lot over the first few years since the beginning of the pandemic and no doubt there’s much more to learn.

We recognise that in some patients there’s evidence of viral persistence. We don’t fully understand how common it is. We can measure changes in the immune system so we now know what type of cells are activated, what pathways in the immune systems are activated, and these all open up potential targets for therapies.

We recognise that the lining of the blood vessels, the endothelium is activated, and there’s change in organ damage in the brain and other organs.

We also know the nervous system that controls blood pressure, temperature control, the autonomic nervous system can also be disrupted, and we know, as Rachael has already alluded to, that there are a number of risk factors so those risk factors such as things like changes in your metabolic profile, that may be increased weight and obesity as an example, are things that also amplify your risk of then having Long Covid and can also be potential treatment targets.

Counsel Inquiry: A new topic, please. Access to healthcare and treatment for adults with Long Covid. Starting in England, please, with the Your Covid Recovery website.

That website was perhaps, until it closed earlier this year, the first port of call for many people seeking help with Long Covid. In respect of the information it provided about Long Covid, can you help us with what the purpose of the website was and whether in your view it achieved its aims?

Professor Evans: So the website was developed early in the pandemic, so it was started in May 2020, it was formally released early July 2020 and the main purpose of the website, Nicola talked about self-management, Nicola is a physiotherapist and clearly very aware of what self-management is, whereas a lot of people wouldn’t necessarily know how to support their own self-management, and because the consequences of having Covid-19 are very varied, the website was really designed as a light-touch information-sharing platform and really aimed at those probably at the milder end of the Long Covid spectrum.

It was originally designed mainly to support people post hospital so that they had some information about the symptoms as they left hospital and continued to recover, hence the name.

What it wasn’t set up to do and what it never could do was provide complex management advice for somebody like Nicola that we heard where she had very complex symptoms, very severe impact where you really need healthcare professionals and to work with you one to one.

Counsel Inquiry: Next, Long Covid clinics.

An introduction to them, please, if you would. How does someone access them and what do they offer to an individual with Long Covid?

Professor Evans: So the Long Covid clinics in England started really through the post-hospital route and originally were set up on the ground by respiratory lung teams, trying to support the people that were coming out of the hospital after having that lung injury. The – NHS England came together to develop a task force in October 2020, and quite a few of those clinics it had already started were then part of the 70 clinics that were funded from 2020.

As far as accessing them and what they should provide, there is an NHS England service specification, very much advocating a tiered approach, so depending on the needs of the individual, the healthcare request should match it. So for milder Long Covid, sometimes self-management support, the use of a website, online platforms may be appropriate.

For people with much more complex needs there really should be available, people with – healthcare professionals with expertise in Long Covid, a multi-disciplinary team meaning doctors, nurses, occupational therapists, physiotherapists, that’s not all encompassing there are many different healthcare professionals that we need, and also a key bit is it needs to be interspeciality.

We heard that there are 200-plus symptoms. We cannot and mustn’t send poor individual people to 200 different specialists. For those symptoms that I mentioned, if we think about pain you might need to see a rheumatologist; problems with memory, problems with concentration, you may need to see a neurologist. Chest pain, you might get sent to a cardiologist, breathlessness gets sent to a lung physician and it goes on and on.

So these Long Covid clinics must have a meeting where you’ve got the expertise of all these different professionals. Certainly in our clinic and in some others we do this with a virtual team meeting. So the individual person with Long Covid comes to see an individual clinician. That is the partnership. And then you bring in that extra expertise that you need through virtual meetings, and so that we’re not sending people for multiple appointments.

Counsel Inquiry: The 70 clinics that were in place by I think you said the end of 2020, is it possible to say how many of those are operating now?

Professor Evans: So the number increased to 100 at some point. I think that was in 2021, the peak. I don’t know the exact number now because the Long Covid task force has finished, but I do know that some have very sadly stopped altogether, others have got embedded within the integrated care systems, within care for other long-term conditions, and there probably are few that are really running as the NHS England service specification suggests.

Counsel Inquiry: Generally speaking, would someone be referred to a Long Covid clinic by their GP?

Professor Evans: Yes, which is the same route to specialist care for any long-term condition and there usually are multiple things that GPs and primary care can help with and should help with first, and then refer on to the specialist as needed.

Counsel Inquiry: I wonder if we could have on screen, please, INQ000492271.

These are the results of a survey conducted by the Royal College of General Practitioners between August and September 2020. In response to question 8, we find that 51% were not very, and 14% not at all confident in treating patients with Long Covid symptoms at that time.

Do these results to you suggest that in those early stages of Long Covid clinics, the end of 2020, there may have been a lack of uniformity in the approach of GPs to making referrals to those clinics?

Professor Evans: Yes, and I think we’ve heard that in the experience of people living with this condition. And I think it’s very challenging for primary care, you know, they have a huge amount that they’re expected to do. I think that 65% that were not feeling confident we need to absolutely support and I think that’s where some of the issues that people have described, accessing healthcare and sometimes hearing the scepticism about what, you know – what they actually have, if people are not aware of Long Covid and not aware how to treat it you can see how that will – how that happens. And then, absolutely, if you’re not aware of a condition and you’re not aware of what support there is, then the referrals, yeah, won’t happen basically.

And there’s also a responsibility of those working in the Long Covid services to, you know, one of the key things of why also you would want a Long Covid specialist and clinic is so that you can outreach and help and support primary care and make your service well known.

Counsel Inquiry: That certainly sounds like a recommendation for how a more consistent approach to referrals might be achieved.

Is there anything else you would like to see to ensure a consistent approach to referrals?

Professor Evans: I can’t think off the top of my head, sorry.

Counsel Inquiry: Not at all.

Is patient self-referral an option to consider here?

Professor Evans: I think the healthcare service needs to start thinking about this for all long-term conditions but, as I said, primary care really do have a valuable role and I suppose I would not want to see that missed, because actually then other problems can happen because there are things that primary care do really well that specialists don’t.

When you hear how difficult certain people have found it to access healthcare you can understand – and specialist care – why they are advocating, you know, if I know I’ve got Long Covid and if primary care feel that they can’t do any more for me I want to be able to access the specialist clinic, but I think we would have to be, yeah, very careful on how that was implemented in future. It needs a lot of thought and really working closely with both people living with the condition, healthcare professionals and the organisations.

Counsel Inquiry: At your paragraph 78 you refer to NHS England providing funding to primary care for the “Long Covid Enhanced service”. Could you tell us a little bit about that, please.

Professor Evans: Yes, it was supposed to really be to develop Long Covid champions, to really do that role I was discussing where you’ve got a link with a Long Covid specialist service, but also then can upscale and promote the Long Covid service within primary care and also ensure that, on the ground, GPs are trained in this new condition so that they know about it and know how to refer.

Counsel Inquiry: Are you able to comment on the extent to which that has been a success?

Professor Evans: I don’t think we have that data to know exactly what – we know that – whether GPs accessed it, and there were a few criteria that they had to check, but I don’t think we really know the impact of that.

Mr Mills: My Lady, I’m about to move on to a new topic. I wonder whether that might be lunch?

Lady Hallett: Certainly.

You remember we have breaks; we certainly have a lunch break, as you’d expect. So, I shall return at 1.40.

(12.38 pm)

(The short adjournment)

(1.40 pm)

Lady Hallett: Mr Mills.

Mr Mills: Professors, can we next look at the issue of training. Is there specific training for healthcare professionals working in Long Covid services?

Professor Evans: There’s been education fact packages written for primary care from the Royal College of General Practitioners. Most of us, as I was explaining, sort of started off from the respiratory, the lung side because of the follow-on from hospital admissions.

So at the moment there’s no formal training, you know, if you’re going to medical school through to junior doctors you won’t do a section in post-viral syndromes or Long Covid and we’re not – and particularly if the Long Covid clinics are reducing, actually we’re going to have even less people with the expertise in Long Covid to actually help support that training.

Counsel Inquiry: As well as that do we also see a variation in the type of clinicians delivering these services?

Professor Evans: Yes, there’s a huge variety, from people like myself as a lung physician to people from infectious diseases, where they have looked after people with post-viral syndromes before, to general practitioners who specialise in fatigue. There are some services where there aren’t any physicians involved, so that multi-disciplinary team is the allied health professionals and the nurses without the medical support.

Counsel Inquiry: So if we take these points together, different training potentially, and different clinicians, is this a recipe for variations in approach?

Professor Evans: There will be variations in approach. I think I would be less concerned about the background of the person delivering a service as long as they have got the skill set to be able to deliver the service and I think going forward we definitely need to think about that more carefully and plan for that.

Counsel Inquiry: At paragraph 35 of your report you describe that there was initial consternation on the part of clinicians that in October 2020, as we’ve discussed, Long Covid clinics were set up but not rehabilitation services. Can you help us with the reasons for that consternation?

Professor Evans: Yes, so if you’re – and there is value from meeting a healthcare professional, hearing about what your symptoms might mean, validating those symptoms, having an empathetic response. We’ve seen in the qualitative evidence that that’s very important, but ultimately people want something that’s going to help them, and those non-pharmacological strategies including rehabilitation are really important. So as somebody leading a service if you didn’t feel you had the interventions to then support after your assessment you definitely felt that that was going to be sub-optimal.

Counsel Inquiry: And we’ll come on later to think about some of the rehabilitation services that we have.

Before I move on, can I ask you this finally about referrals. At paragraph 37 of your report you record that at the time of writing following approximately 125,000 referrals, 113,000 patients have been assessed by a specialist Long Covid service. To what extent are the two of you encouraged by these figures?

Professor Evans: So I’m encouraged that people have been seen and there are Long Covid clinics but I think – and I’m certainly not going to infer that all 2 million people that are living with Long Covid need to see a Long Covid specialist, but I would have thought that the 100,000 that have is leaving a big gap of people that are experiencing very difficult symptoms that are impacting on every facet of their life and not getting the support that they need.

Counsel Inquiry: Professor Brightling, do you tend to agree?

Professor Brightling: I think it’s a good start an encouraging start and if we had confidence that the clinical service was now beginning to expand and accelerate then I’d be very pleased with those figures. What you’ve already heard from Rachael is a number of the services are already under threat. There’s likely to be a shrinking of the clinical service next year. The service is not the same across the four nations from the get-go and are very different now and this has enormous impact then on training as you’ve alluded to and also research which needs to be integrated into clinical care. So the clinics have to be the foundation of then actually being able to find solutions for people with Long Covid.

Counsel Inquiry: Can we move to Wales. Is it right, by way of summary, that the Welsh approach has not been to establish specialised Long Covid clinics but instead to deliver Long Covid services through primary care?

Professor Brightling: That’s correct. So in the summer of 2021, the plan was to fund a primary care network at the cost then of – funding of £5 million and that then included therapists and primary care physicians but if you needed to then refer on, you were referring on to a whole variety of different organ specialties.

That funding was then renewed for a further year and then the funding is being continued but the funding is now being taken into support for long-term conditions in general, so there isn’t a specific pot nor the service exclusively for Long Covid.

Counsel Inquiry: In your view are there any advantages to the Welsh approach?

Professor Brightling: So it’s clearly correct to be able to offer help and support within the community but by having the support exclusively in the community and then to have this very disconnected secondary care support has a number of disadvantages. It has a disadvantage to the patient in terms of being able to have a one-stop clinic and being able to get the best services as quickly as possible.

It then has implications for training because there then isn’t a group of specialists that are then actually evolving the subject area and it also then becomes a barrier for research and taking things forward because you then don’t have a base in which to then be able to look for new diagnostics, new disease understanding and new therapies.

Counsel Inquiry: If we have in our minds perhaps the gold standard, do we need both specialised Long Covid clinics and the appropriate training within primary care to make sure people are referred to them?

Professor Brightling: The simple answer is, yes, but I would suggest that we can compare this with some of the other disease areas. You asked us very early on to think about the relative prevalence of Long Covid compared to other chronic conditions and Rachael referred to chronic obstructive pulmonary disease and heart failure which are very common respiratory and cardiac diseases, with a very similar prevalence of 1 to 2 million.

If you think of heart failure as an example, the British cardiology society and the British Heart Foundation did a recent survey so there’s around about 1,700 consultant cardiologists in the country and of those about 1 in 8 consider themselves primarily as heart failure specialists. So that’s over 200 heart failure specialists.

If you think of full-time equivalents of doctors that would then say our primary role is actually being a Long Covid specialist, then that really is down to single figures or even only ten or so.

So the contrast is if you were going to put people on to a double-decker bus in central London you’d need probably three double-decker buses for the heart failure specialists whereas if you had a people carrier or a small minibus you’d probably have room to spare if you were to then fill them with people with Long Covid specialism. So there’s an enormous contrast between the two.

Counsel Inquiry: At your paragraph 77 you observe that services differ between the seven health boards in Wales in terms of staff composition, durations and types of intervention. I wonder, what are your views on that level of variation?

Professor Brightling: I think that’s actually probably also an understatement because, as I’ve said, now the care has moved away from the Long Covid services into long-term disease clinics. So it’s likely that there’s probably even more variation in terms of the type of care.

I think it’s a disservice to the patients because clearly you want that as you described earlier, that multi-disciplinary team approach with that one-stop clinic where patients are then able to get an early diagnosis and then bespoke treatment for their own problems.

Counsel Inquiry: Scotland, please. How were Long Covid services initially provided in Scotland?

Professor Brightling: So in Scotland again there was a delay in setting up services. So this was really into the last third of 2021. There was £10 million of funding to set up those clinics. The clinics really were quite challenging because the services simply couldn’t cope with the number of referrals, and the clinics have then been disbanded as Long Covid clinics and then the activities and the referrals have then been taken up in a variety of long-term condition clinics across the different parts of Scotland.

Counsel Inquiry: Yes, at your paragraph 29 you explain that one of the Long Covid services in Scotland was unable to meet demand and closed after 18 months due to a lack of funding.

Do you know whether any reason was given for the lack of funding in circumstances when demand was clearly high?

Professor Brightling: No, we don’t.

Counsel Inquiry: Northern Ireland. Is it right that until November 2021 there was no central funding for Long Covid services in Northern Ireland?

Professor Brightling: So we’re aware that the Northern Ireland model, again similar to Scotland, came later in terms of then setting up multi-disciplinary teams. How that model was funded is something that – is unclear to us and is not in the public domain.

Counsel Inquiry: Are you able to help us with the position before the funding was applied in November ‘21 how, if at all, were Long Covid services developing in Northern Ireland before then?

Professor Brightling: So obviously neither of us have any direct workings in Northern Ireland but anecdotally from colleagues it definitely appeared that the structures were not well-formed and that it was not until those multi-disciplinary teams were then created where there was actually some form of Long Covid service. But like all of the countries I’ve described, really the services have not been exclusively for Long Covid in a long-term nature with long-term funding.

Counsel Inquiry: Can I take all that we have discussed about Long Covid healthcare in adults together. The Long Covid core participant group describes the provision of Long Covid services across the UK as a postcode lottery. Do you agree?

Professor Brightling: So I think they have a very – a very valid point, in that we recognise what is the right kind of care model and how that’s been delivered from the get-go has been different across the four nations, and with the clinical services even in England, which was better funded, the types of services, as Rachael has described, is different between different centres.

Counsel Inquiry: And are you able to help the Inquiry understand the consequences of that disparity for patients?

Professor Brightling: So I think what’s worrying is not just the consequences of the disparity now but the likely consequences of that ever-increasing disparity as we then go into next year.

So at the moment, then, there’s differences in terms of the training and confidence in primary care, the referrals. There’s then differences then in terms of the level of care that’s then done in secondary care, who is delivering that, and differences across the four nations, with funding, as you can hear, then decreasing.

The Long Covid clinics and the services are largely driven by people who still have other specialist roles, whether that be in respiratory, cardiology, infectious diseases and others, and the pull has been very much to pull many of those people back to their original areas of specialty.

So there’s real risk if you start to undermine the clinics that then the whole discipline of being able to look after people with Long Covid starts to become undermined. And that then clearly has consequences in terms of training and future research.

So the very strongly held view is – from us is that the clinics are really the foundation to which all the other elements are also necessary but then can then feed into those clinics and the clinics can then be the axis as well for delivering research and training. So providing those clinical services is absolutely paramount.

Counsel Inquiry: Long Covid SOS has described the benchmark that Long Covid care should meet in the following way: a one-stop shop with a mix of specialities, professionals allied to healthcare and, importantly, a point of contact for the patient.

Can I ask whether you agree with this as a description and whether so far, in your view, this benchmark has been met?

Professor Brightling: So I agree, and in some cases, yes, but in many it’s fallen short.

Lady Hallett: Can I just ask – I understand exactly what you’re saying, and supposing I were to accept your opinion and make a finding and/or recommendation – for those who are of the mistaken view that Covid is over and therefore we just need to get on and get people back to their original specialisms, as you were saying, Professor, could the clinics, if they were funded, these one-stop shops, could they be used for other conditions? In other words, could you persuade the money people to spend the money because it’s not just going to be dedicated to Covid that they, as I say, mistakenly believe is over?

Professor Brightling: The simple answer is yes. I’d love to be of the view that Long Covid can end up being “been and gone Covid”, where it no longer is a concern in the years to come. I think until we have new effective therapies that will be some time yet.

Lady Hallett: I understand that.

Professor Brightling: But I completely agree with the point that you’ve made, is that there are other conditions, other post-viral syndromes, so ME/CFS is an example, where with you could then have services expanded in those areas and then also to include services for Long Covid and possibly other additions.

So overall these conditions are not going to go away in their totality.

Rachael, I don’t know if you wanted to add …

Professor Evans: Yes, so absolutely agree, and unfortunately I think there is this belief that Long Covid somewhere along the line is going to disappear, and we’ve seen from ONS that is not the case.

You asked me earlier about post-viral syndromes. This could be the proper legacy to get this right for next time. If you’ve got these experts, you’ve these expert clinics, then for the next viral pandemic you may need to bring in other specialists, it may look different, but at least you’ve not lost that core knowledge from this. And that’s really vital.

Mr Mills: And on that core knowledge, do we now have evidence that Long Covid clinics are both clinically and cost effective?

Professor Evans: Absolutely. I want to put one further caveat to the “one-stop shop”, because we’re – I think Long Covid SOS, and certainly my interpretation, is meaning for that assessment that we’re not spreading specialists, but definitely there needs ongoing support and ongoing care, just like for any other long-term condition.

Those clinics, if they have complex diagnostics, complex assessment, complex interventions that are personalised, we’ve shown data that shows that they are clinically effective and cost effective.

And as Chris has highlighted, there’s a whole other reason for needing those clinics for research training and for future pandemics.

Counsel Inquiry: New topic, please, access to healthcare and treatment for children with Long Covid.

Can Long Covid present differently in children and young people compared to adults?

Professor Brightling: So, first of all, neither of us are paediatricians. So we’ve been very fortunate to be able to work closely with paediatricians and some of the text within our report is then from discussions with paediatricians.

So the main symptom clusters are very similar. There are some additional syndromes that occur in children but many of the things that you are concerned about in adults are also relevant to children and young people.

Counsel Inquiry: As far as you are aware, are there any dedicated services for children and young people with Long Covid in Wales, Scotland or Northern Ireland?

Professor Brightling: Not as far as we are aware.

Counsel Inquiry: Again, as far as you are aware have attempts been made in these countries to introduce such services?

Professor Brightling: They may have been but not as far as we’re aware.

Professor Evans: Yeah, I think there was concern around the lack of volume of patients to require dedicated clinics. I’m not saying this is my belief, I’m just saying that’s what was postulated and therefore it was felt that the people – children and young people with Long Covid could be dealt with paediatric services in specialist care.

Counsel Inquiry: If we consider the position in England then, can you help us, how have Long Covid services for children and young people developed?

Professor Evans: So it was slower than for adults. So just like we were hearing there were delays in understanding and delivering healthcare for adults with Long Covid, there was even more delay for children and young people. Eventually there were 15 clinics set up, and I think this was largely due to the enthusiasm for one site in London that really did lead this and then NHS England supported delivering 15 clinics.

I think that’s the maximum clinics that we’ve ever had and I think there are, again, at least some of those that have since closed.

Counsel Inquiry: You describe in your report that those clinics utilised a hub-and-spoke model. Can you help us with how that model operates and what the advantages are of it?

Professor Evans: Yes, so I think, similar to the concerns from the other nations about the volume and the number of clinics needed, it was felt to have these specialist clinics, where you can really get the specialist knowledge, the specialist teams, and then they would actually then be a sort of port of call for other paediatric services to get advice. And certainly the virtual MDTs again were open to other clinics, is my understanding of how that worked.

Counsel Inquiry: Are there any inequalities in accessing these hubs that had been identified?

Dr Rachael Evans: Well, as we’ve heard from adults that struggled to get access to healthcare for Long Covid, the same if not worse is mirrored in the literature for children trying to – with adults – with their parents, trying to seek healthcare, where apparently it was very difficult.

Counsel Inquiry: Can we move now to consider research into Long Covid treatments. Starting with the funding position. By way of headline, at paragraph 10 you explain that at the time of writing your report more than £50 million had been invested in Long Covid research projects in the UK, but – and this is at your paragraph 114 – dedicated funding for Long Covid ceased after February 2021. Is that a fair summary of the position?

Professor Brightling: It is.

The UK should be very proud of the research that it’s done with acute Covid, and with Long Covid research the funding in the UK, and importantly the discoveries that were made in the UK, have really been world leading. So right at the very beginning of the early period post pandemic the UK had actually performed very well, and the early funding of that 50 million supported 19 projects through a core as well as some additional projects that were really looking across the breadth of Long Covid. So we started well.

Counsel Inquiry: We started well and then what happened?

Professor Brightling: So the challenge to me really is that the problem has actually continued, such that you then need to have further understanding around mechanisms, around potential diagnostics, so leading you on to treatments. And other countries have recognised this. So in contrast to the UK, where the funding was very much front-loaded and, as you said, has then largely ceased, about 18 months ago, that other countries really then picked up. So in Australia there was AUS$50 million put into Long Covid research just over a year ago. There’s been now in excess of 100 million euros within Europe to fund a series of projects. And then from the US, which has really by far exceeded everyone else in terms of funding, has allocated over $1 billion in research funding for Long Covid.

So the way I view this is, really, the research for Long Covid is very much a marathon and the UK has won the first 400 metres but has now paused.

Lady Hallett: Can I just check a date. I think Mr Mills may have put to you funding ended February ‘21’. Was it in fact February ‘23 because you just said 18 months ago?

Professor Brightling: So the last funding call was in ‘21 –

Lady Hallett: Right.

Professor Brightling: – but some of the funding hasn’t been increased but been extended. So, for example, the funding for the consortium that we lead, PHOSP-COVID, has been extended through to 2026 but not the – but the original funding was right back in 2020.

Lady Hallett: What I wrote down, and it just may be I misunderstood the question so I just need to – so initially – so at the time of writing the report, I wrote down, over £50 million invested in research. What I then wrote down and it may be this is where I got it wrong, but ended in February ‘21.

Mr Mills: If it helps, Professor, I’m at your paragraph 114.

Lady Hallett: Thank you, that might help me.

Mr Mills: Last sentence:

“Despite this, dedicated research funding for Long Covid ceased after February 2021 …”

Professor Brightling: So the last call was July 2021 which was the last funding round which was then – the funding before that was February 2021, so it’s July, so then looking at section 9, this is where it’s correct, if that’s a misrepresentation in that sentence. So the funding that then came through from NIHR to fund 15 new Long Covid projects was July 2021.

Mr Mills: I see.

Lady Hallett: Sorry, it’s me. I mean, “funding ended” sounds like no more funds after February ‘21 but that’s not what you say.

Professor Brightling: No, that’s the award.

Lady Hallett: That’s the award.

So no more awards after February ‘21?

Professor Brightling: Correct.

Lady Hallett: But the awards that had been made up to February ‘21 could then be drawn on thereafter?

Professor Brightling: Correct.

Lady Hallett: Sorry, you wanted to add something, Professor.

Professor Evans: I was just going to add that there were just very small amounts that were given to certain studies for legacy funding, as Chris was staying for PHOSP-COVID, but it was very small. So the two calls were announced November 2021 and February 2021, they were the 50 million.

Lady Hallett: And they are then there for people to draw on when they –

Professor Brightling: So typically the funding periods would have been for two or three years.

Lady Hallett: Right.

You’re obviously used to all this funding, sorry.

Mr Mills, sorry to interrupt, I just wanted to make sure I got my facts straight.

Mr Mills: Not at all, my Lady.

Can we think about pharmaceutical treatments. Are you able to share today any results we have from clinical trials of pharmaceutical interventions for Long Covid?

Professor Brightling: So if we think about the trials that have really focused on this. So in the UK it’s been the STIMULATE-ICP study which is not yet reported. So they have focused on really three avenues. So one is trying to tackle the problems with the autonomic dysfunction with antihistamines with the activation of the lining of blood vessels with the anti-clotting agent and then also an anti-inflammatory, colchicine, but that’s not yet reported.

In the US trials there were a combination of drugs/pharmacological and non-drug/non-pharmacological trials and with those they’ve been looking at the viral persistence with Paxlovid. Importantly, Paxlovid really focuses on replicating virus, so if you have a reservoir of virus then treating it with Paxlovid may be less effective than some other antiviral approaches. And I think even if that reported as negative, it still wouldn’t exclude that as a possibility.

They’re also then looking at drug interventions to try and then modify sleep.

There have been a number of small study which have then been encouraging to then be able to take on larger interventions but none of those have reported in sufficient numbers to yet have therapies that are licensed for Long Covid.

One of the most promising approaches is also to think about what I would describe as a precision medicine approach and what I mean by that is if you can identify the underlying mechanism that’s driving Long Covid with an individual, you can then have a test that can identify that individual and then a treatment that then can then target that particular mechanism.

And one of the ways of doing that is to then think about: is there viral persistence, are there particular inflammatory pathways, are there then problems about autonomic dysfunction, problems about the risk factors and you can identify individual tests that map on to each of those.

One such study that’s taken that approach is then targeting a particular inflammatory substance called IL-6 which was found to be really important in acute Covid and you can target that with an injection treatment and that’s a study called PHOSP-I that Rachael is leading on and may wish to comment on as well.

Professor Evans: Yes, the PHOSP-I study we started earlier this year – I’m trying to think of the date then, and we’re still in the recruitment phase at the moment, and to really highlight what we’ve really needed is those Long Covid clinics that are specialist clinics to get the right patients and to be able to have those linked with a research centre that is capable of delivering a very difficult experimental medicine trial. So it’s a really good example of what we were trying to state yesterday – it feels like yesterday – earlier this morning, sorry, about the need for the Long Covid clinics because it’s been absolutely essential to deliver the trial.

Counsel Inquiry: Moving on to non-drug treatments then.

At paragraph 63 of your report you observed that there are tensions around the use of physical activity in Long Covid rehabilitation programmes. Could you tell us about that, please?

Professor Evans: Absolutely. And it speaks really to what we have as a fairly simple definition of Long Covid whereas it really is a very complex condition and it is made up of lots of different types of condition with different types of symptoms and just like Chris was highlighting the need for a precision medicine approach for medication trials, the same is very likely to be needed for trials of rehabilitation.

So the tensions around physical activity is that for any of us we need to be physically active, that’s good for long-term health, it prevents the development of long-term conditions. So all of us need to be physically active. Of course, Long Covid with the fatigue and all these difficult symptoms impair physical activity.

The rehabilitation interventions are really for healthcare professionals and the people living with Long Covid to work together to try to improve physical activity with the aim of improving symptoms. For many people that’s a very successful approach. But there is this subgroup of people with Long Covid with this really challenging symptom of post-exertional symptom exacerbation where we really have to be careful.

That doesn’t mean that we don’t deliver any rehabilitation but it has to be personalised, it has to be at the right time and I don’t think we know that for everyone at the moment. When somebody has got that really fulminant fatigue they can’t even really move around the house, they’re getting crashes, that’s not the right time for these interventions.

So, it has to be, at the moment, very individually judged and we would like to get to the point where we’ve got research trials that really highlight who and how we should do this.

So the tensions are that we’ve got this very careful balance between all of us wanting to improve physical activity but how do you do it and it’s this balance between pacing, and actually then progressing what someone is doing and that has to be incredibly carefully done with experts.

Counsel Inquiry: I wonder, could I ask you to just introduce us to the concept of pacing for managing someone’s Long Covid symptoms?

Professor Evans: Yes, and this is a technique that’s been used for decades in other long-term conditions and in other post-viral syndromes, so it’s been used in HIV in particular. The aim is to understand that everyone’s got a certain amount of energy and this becomes very clear in Long Covid and that energy is – can be used in a physical task, an emotional task or a concentration task.

So pacing is how to use the energy for things that people want to do, or have to do, but then to almost get some rest back to reset and not trigger that fatigue.

Counsel Inquiry: Can you tell us about any other rehabilitation interventions that are currently being used or being considered for use?

Professor Evans: Yes, so rehabilitation is an incredibly broad term and I was talking earlier really about exercised-based or physical activity-based interventions. So there are a number of randomised trials now that have read out this year that overall give very positive results of the type of programme where you have this close working with the healthcare professional and the person, and then progress the physical activity and symptom management as you go through the course in a personalised way.

Other interventions that are being used are pacing and also with a little bit of progression those trials are still ongoing. As trials of breathing techniques and respiratory muscle training they’ve also shown promise. So there’s a number of trials that are ongoing at the moment. Some have finished with positive results and some are ongoing.

Counsel Inquiry: Is there a trial also around sleep?

Professor Brightling: If I can comment on that.

So the NIH Recover, so this is in that very large funding tranche in the United States, they then have both pharmacological and non-pharmacological interventions for sleep. So it includes drug interventions such as melatonin to try and then reset the body’s clock and also then cognitive behavioural type interventions.

There’s also within the NHS, Sleepio, which can also be accessed as a cognitive behavioural tool for then trying to manage sleep.

Counsel Inquiry: If we take everything we have discussed about this topic together are there any areas of research focus you would recommend today to advance the treatment of Long Covid?

Professor Brightling: So I think what we really need to have is a group of platform trials. So what I mean by that is the STIMULATE-ICP was focusing on repurposing therapies that are already available for other treatments and are largely low cost. But we recognise that there may be a need to have more specific therapies for certain types of changes particularly changes in the immune system that we are now recognising in subgroups of people with Long Covid.

So to do that you need a trial that’s established where you have common entry into the trial, common outputs in terms of then the way we measure how well somebody has done and then individual arms so that you then identify the patient that is likely to respond to an intervention and then put them into a trial where it’s tested against a placebo, so a randomised control trial but within a platform.

And one of the things that we will be trying to seek is support from NIHR and UKRI. We had asked for support for a platform trial now a couple of years ago but things have really moved on in terms of our understanding in the science and what end points to have, so we shall be asking again for support for such a trial.

The arms themselves may need support from industry as well, and when I’ve had discussions with industry some of the companies are still looking to support trials within Long Covid. But the story in industry is very similar to the story we were telling around the clinics in that during the pandemic there were Covid groups that were formed in most major pharmaceutical companies that were interested in both acute Covid but were also thinking about therapeutics for Long Covid and those groups have almost entirely now been disbanded and gone back to their individual therapeutic disease areas, so actually getting support from companies is also challenging.

We have had some traction and I think we are in a position soon to then be able to go back to government funding through NIHR and UKRI for such a trial which would complement the activity that then is being through STIMULATE-ICP and complement the non-pharmacological interventions that we’ve just been discussing.

Counsel Inquiry: New topic, please, Long Covid treatment and health inequalities. Before we consider what you are able to say about inequalities in Long Covid treatment, can I perhaps invite you to set out the factors that limit our current understanding of this area?

Professor Evans: Yes, I think one of the major if not the limitation is data, and that data being from routine clinical healthcare records. We rely on that a great deal from UK to understand how healthcare is delivered, but it absolutely relies on people having a correct coding in their healthcare record.

We’ve already heard that there’s difficulty seeking healthcare, difficulties getting the diagnosis, difficulties with the terminology, and we just don’t have enough people still, in 2024, that have Long Covid actually having their Long Covid code on the database.

That then means that we can’t – because to really understand healthcare inequalities you really need to understand the prevalence to be able to do large-scale comparisons around how different demographic factors are actually affecting healthcare and the condition itself, I’m talking about needing good quality epidemiological studies, and that’s what you need the data for. So that has been really limited.

NHS England were keeping a good record of who was being seen in the Long Covid clinics, so at least we had some idea of the demographics of the people that were actually receiving care through the clinics, but I don’t think we have that any longer.

And the whole thing after 2021 became even more challenging after routine testing reduced, because at least if you knew roughly the incidence of the infections you could understand roughly what you would expect the prevalence of Long Covid to be in certain areas, but without that it’s really difficult to actually understand what the gap is, to understand where the problems lie.

Counsel Inquiry: Please can we go on screen to INQ000421758.

Professors, you will recognise this. This is paragraph 88 of your report.

We have data collected by NHS England from July 2021 to July 2022 of the demographics of adult patients attending Long Covid clinics.

What does this list tell us about inequalities in the context of Long Covid treatment?

Professor Evans: I think there’s going to be limited interpretation that we can really draw on this, however the gender balance or the sex at birth balance between females and males is probably where you would expect it to be.

The difficulty is that 20% of people seem to be missing their ethnicity data and we just don’t know for a fifth of people what is their background ethnicity, and therefore we really can’t comment whether that data is really representative of our general population. Our suspicion would be that it isn’t, and I think those of us running Long Covid clinics think that there are definite people that we’re missing, and they are people that we miss in all healthcare.

Counsel Inquiry: It sounds as if this tranche of data is indicative of the problematic global picture you’ve been describing?

Professor Evans: Absolutely.

Counsel Inquiry: Can we next go to INQ000319639.

This is an extract from the statement of Caroline Abrahams, of Age UK, who the Inquiry heard from yesterday. I’d just like to look at the first sentence of paragraph 79:

“There may also be under-recognition and under or delayed-diagnosis of Long-Covid in older people whose symptoms including problems with balance and mobility, and chronic fatigue, may be written off as ‘age-related’.”

Is this a concern you recognise?

Professor Evans: Yes, absolutely. And that probably happens on an individual level, where people start experiencing things and they put it down to their age and delay seeking healthcare. And then healthcare professionals as well, if they’re not clued into Long Covid, could absolutely underestimate it.

I would also say that the flip side is very true though, that in the clinic we also are concerned if somebody is presenting with Long Covid and memory loss, we absolutely don’t want to assume that that is all Long Covid if there are potentially reversible or treatable conditions. And that’s why you need these specialist clinics with those MDTs, so this is exactly the type of problem that we discuss.

Counsel Inquiry: Thinking about a different cohort of individual. At the start of your evidence we explored healthcare workers as being at higher risk of developing Long Covid during the pandemic. Can you help the Inquiry understand what can be done to support healthcare workers with Long Covid to return to work?

Professor Evans: Absolutely. There are a number of challenges for healthcare workers, not least that many of them did contract the virus during their day-to-day work while trying to help people.

The things that we need – I mean, their general care will clearly be the same as for somebody else with Long Covid, but as an organisation I think the NHS needs to really support people returning to work.

The vast majority of people I see actually try to return to work too soon, that it is the thing that is prioritised over everything else. So even though it they can barely do something, they’re telling you that they’re still trying to get to work.

One of the things we’ve really learnt around – that we’ve all needed really good links with, occupational health, and the occupational health teams on the whole have been very proactive to understand about Long Covid, to help the people that they’re trying to help, meaning more broadly.

Within the NHS we have very fixed phase returns. There’s a process and it’s very rigid. And a common theme that you’re hearing today is how long Covid is not fixed, it is incredibly variable, changeable and the fatigue really needs a very carefully planned, flexible, phased return. So the NHS can do a lot better to facilitate that.

And the vast majority – I can just speak from personal experience – the vast majority of healthcare workers, if not all of them, want to get back to work. It’s their goal.

Counsel Inquiry: At your paragraph 92 you say that proactive care could improve health equity. Can I ask what you mean by proactive care in the context of Long Covid.

Professor Evans: Absolutely. It’s relevant to all Long Covid but it was particularly relevant for the people post hospital.

So, many people, obviously hundreds and thousands of people came into – or hundreds of thousands now – came into UK hospitals with this lung infection, very typically. If we just leave follow-up care, if they’re discharged home and then we just leave follow-up care for that individual to then initiate coming back into the healthcare system, they would face exactly the same issues as we’ve heard from those non-hospitalised.

With proactive care it means actually that you have the cohort of people that were admitted to hospital and you ask all of them whether or not they’re fully recovered. And we’ve actually managed to do this locally using an automated AI system, because obviously we want to target services to where – to the people that haven’t recovered. Our early data from the PHOSP-COVID study did show that actually 70% of people are not recovered by one year, so actually you’re trying to – you’re delivering proactive care where the majority of people are going to need care, and you’re trying to just ensure that everyone is not left to their own devices to seek healthcare.

Healthcare inequalities come in when you’ve got different healthcare-seeking behaviour.

It’s much more difficult to implement something like that at scale for the community just because 95% of people will, thankfully, recover from Covid-19. But we definitely need – going forward need to think: we’ve got very sophisticated tools and technology, there must be a way of being able to proactively reach out to people that have not recovered and therefore reduce the burden, really, on the individual to do all the healthcare seeking themselves.

Counsel Inquiry: Both in your report and in evidence you shared earlier today, you have compared the rapid development of care for acute Covid-19 with the comparatively slower development of Long Covid care. In your view, does this reflect a common disparity between acute care and chronic care?

Professor Evans: It does, unfortunately, where healthcare does seem to be highly prioritised to acute care. And I’m not saying I want to take anything away from that, but we need to have equal priority for people living very difficult lives with long-term conditions. It’s not seen anywhere near as much as acute illness, both in the public and the healthcare system.

Professor Brightling: I’d like to add the timing is different as well. So this doesn’t have to be done at the same pace and scale, because we know that the main problem at the height of the pandemic was the acute problem. People were dying. So clearly having a very well structured acute service and research that was then identifying therapies in the acute setting was entirely the right thing to do. Identifying a vaccine was entirely the right thing to do. But the problem that we’ve seen is that there was some initial investment that was done quite slowly for Long Covid and that’s neither been sustained nor accelerated in spite of the fact that this is still a major problem.

Counsel Inquiry: Can we turn now to your lessons and recommendations.

I’d like it approach it in this way, please. First, we’ll look at your recommendations for how to diagnose and treat the long-term consequences of a future pandemic pathogen and then we’ll look at recommendations you have about the treatment of Long Covid.

So, the former. As far as you are aware, does the UK currently have a plan in place to address the long-term consequences of a future pandemic illness?

Professor Brightling: So within the UK there is some funding that was already in place ahead of Covid-19 for pandemic preparedness. But the magnitude and scale of this funding is really very small.

So what it allowed them to do was to develop a – what we call a hibernating or a sleeping study for looking at the observational study to try to follow the pandemic in its early stages. And that was the ISARIC study, which was very successful. So it was very successful at them being able to start to understand what does the acute pandemic look like, what are the at-risk groups, and be able to give us early demographics and early epidemiology. It was a big success, success in the UK and UK led.

But we didn’t have that for long-term conditions, and as far as we’re aware there still isn’t in place a plan for a similar event in the future that may then lead to long-term conditions.

And yet, as we alluded to early on, we already knew from other coronaviruses, so with SARS-CoV-1 and MERS, that there were a high proportion of patients that then developed long-term consequences. Unfortunately, those conditions did not have anywhere near the number of people that were affected.

So it didn’t have the same global impact. But it only has required this breakthrough virus, with Covid-19, to then really reveal just what an enormous problem the – what is now called Long Covid has really been and any other post-infection consequences in any future pandemic. So there clearly does need to be some preparation, which could include hibernating studies for research but also thinking about the clinical models as well, as we’ve already discussed, like – with an expansion of the existing clinical service. That could itself or it could be in parallel an activity to also then have preparedness for them being able to accelerate at scale new clinical services at the point when there’s a new pandemic.

So I would hope that there are positive things that can be a legacy from this pandemic.

Counsel Inquiry: Anything you would add to that, Professor Evans?

Professor Evans: No, I don’t think so, thank you.

Counsel Inquiry: Turning then to your recommendations for the treatment of Long Covid. Can I start with this, please. In your view, is the future planning and resourcing for Long Covid care adequate?

Professor Evans: I don’t think so. Not from what I’m seeing. I think I would have answered this quite differently last year. I’ve been trying to, sort of, reflect on that. And I’m really concerned that the expertise, the clinical care that was set up in England, that as Chris has said should have been accelerated, as really reduced, and I am concerned what it’s going to look like a year from now when it’s more business as usual in the integrated care systems.

And we absolutely understand that the NHS is under extreme strain but it is absolutely our job to highlight this condition and highlight the need that these specialist clinics and the Long Covid care, both primary care, community care and then the specialist clinics and interventions, needs to be continued. The ONS data from 2024 clearly shows it’s not going away.

Professor Brightling: One thing that really worries me is how all of the voices that we hear from the patients’ testimonies could end up falling silent, because if the clinics slowly start to evaporate, the expertise is not kept and expanded, you then have a situation where patients then don’t have a service to support them and they’re then just falling into whatever the local system is that is currently there, which is very likely inadequate.

And that in many ways means, perversely, the problem seems to go away, because then you’re not actually seeing the condition, because it’s no longer visible. And to me that would be – that would be a real travesty. And I think we’re – I think we’re at a tipping point, really, where there’s a real opportunity to learn from what we have already achieved and to really then build back up the services, maintain them, develop expertise, identify new diagnostics, new therapies and actually make really big strides. But in contrast there’s a risk that these things will actually fall to one side.

Counsel Inquiry: In respect of prevention, at your paragraph 125 you highlight the role that vaccination can play. Is there evidence that vaccination has an impact on the severity and incidence of Long Covid?

Professor Evans: Yes, absolutely, and this is now through a number of different studies that show that people that are fully vaccinated are at less risk of getting Long Covid, and those that do overall, and again talking in cohorts, overall they have less severe Long Covid. Yet the at-risk groups of getting Long Covid and of course someone that’s already had Long Covid would very much be in that group, never seem to be on the at-risk group for vaccinations. They are still very much geared and, again, this group should be included to the older population that are more at risk of the acute illness and of course mortality.

Counsel Inquiry: You’ve referred both in your report and earlier today to the importance of training healthcare professionals, and at your paragraph 129 you note the importance of providing occupational advice to patients and vocational rehabilitation. I wonder whether you could explain what those two concepts mean in the context of Long Covid?

Professor Evans: Absolutely. We’ve had – we’ve not really discussed them today but they’re in the report. We have existing rehabilitation programmes for lots of different long-term conditions but actually they tend to be on the whole for older populations and the vocational aspect of rehabilitation really hasn’t particularly been included, certainly for Long Covid this is largely a working-age population that want to get back to work and vocational rehabilitation is really the way to do that. That it is very focused, you’ve got the right experts within that MDT, with a very different skill set to the other healthcare professionals and the whole target is about how to help people to get back to work.

And they are also a critical link back into the occupational health role to then support the organisation that the person is working in to actually have that real phased return that’s personalised and actually going to help people return to work. And that’s good for everybody, that’s good for the individual and it’s certainly good for the healthcare system to have our healthcare workers back into the NHS.

Counsel Inquiry: Throughout your evidence you have made certain recommendations as we have progressed. Can I finish then with this. Are there any other recommendations for the future of Long Covid treatment that you would like to share with the Inquiry?

Professor Brightling: I think I’d simply like to say that this isn’t fixed, it hasn’t gone away, and we really have made quite phenomenal progress in a short space of time such that we’re ready now to move into further treatment trials to then try and then underpin the clinics, and it’s just critical that that’s supported and accelerated and not undermined.

Mr Mills: Professor Brightling and Professor Evans, thank you.

My Lady, that’s all I ask.

Lady Hallett: I was thinking of breaking now before I ask Ms Hannett to ask her questions. So I’ll break now, at 2.45, and come back at 3 o’clock.

(2.44 pm)

(A short break)

(3.00 pm)

Lady Hallett: Last leg, Professors.

Ms Hannett.

Questions From Ms Hannett KC

Ms Hannett: My Lady, thank you.

Professors Brightling and Evans, I ask questions on behalf of the Long Covid groups. I’ll direct questions to both of you but as with Mr Mills, do please answer as you feel appropriate.

And actually, we are very grateful to counsel to the Inquiry who has put a number of the questions to you that we intended so I shall cut my cloth accordingly.

Can I start, please, by asking you about paragraph 3 of your report where you state that since writing the Module 2 report Long Covid remains a significant health priority. Please can you explain in a little more detail why you consider Long Covid to be a current and ongoing significant public health priority?

Professor Evans: Yes, of course. So it is a significant and ongoing priority both in terms of volume of people affected, as – to repeat the ONS figure that 2 million people living in the UK currently are estimated to be living with Long Covid and also it’s an absolute ongoing priority for the people that have been severely impacted for the condition and the need for both research and clinical care to be continued.

Professor Brightling: If I may, I’ll add a couple of extra dimensions. Not only is it clearly of remaining importance for the individuals who are suffering but it also has an economic and societal impact as well. So the estimate just on loss of income is in the order of 1.5 billion according to the Institute of Fiscal Studies and then there’s been estimates of the overall cost based on the clinical healthcare costs, the carers’ costs and the other socioeconomic costs due to loss of earnings and it’s been estimated to be somewhere in the region of 0.5 of the UK GDP. So I would have thought the day before a budget that actually taking into consideration not just the personal impact but the societal impact, and economic impact is really important.

Ms Hannett KC: Thank you. I’m going to turn to ask you about access to adult Long Covid services. You’ve given evidence already about the difficulty and delay for patients in accessing services in all four nations and that reflects the experience of members of the Long Covid groups. In relation to Long Covid services, Long Covid care currently comprises both rehabilitation and clinical management of Long Covid. Are rehabilitation services without some form of clinical management of Long Covid symptoms sufficient to care for all Long Covid sufferers?

Professor Evans: I would say no. I think there’s that tiered approach and stratified approach to clinical care, so a light touch approach for some, definitely having that multi-disciplinary team and rehabilitation service but I believe you must have medical oversight of these services so that you can ensure that first part of the journey, getting the diagnosis right, answering people’s questions appropriately, they have individual questions about individual symptoms, they must have time with somebody that can answer those as best they can and where it’s unknown, have trust that the person that’s just saying, “Actually, at the moment, we don’t know”, that really is the best answer.

But I do believe they must have medical support. That multi-disciplinary team that we talk about needs to have medical staff involved.

Ms Hannett KC: And assuming that there’s a medical staff present, what other different professional backgrounds or different types of healthcare professionals, what impact can they provide on the quality of the care that can be provided?

Professor Evans: Absolutely. I think it is so important that there is one professional that really is taking control of the person’s care and then absolutely need a range of specialists to help support that care, and that doesn’t mean sending somebody off to multiple specialist appointments where they’re going to hear different views, different focus, and have to spend time and money and energy doing that, it is much more efficient for everybody, both the individual and the healthcare system to have these clinics with relevant expertise and that now we probably know more than we did in 2020, 2021, certainly the MDT that I run has changed quite significantly over the four years to learn which specialists we really need.

Locally for us that’s cardiology, respiratory, neurology, rheumatology, liaison psychiatry, mental health support and rehabilitation, a suite of multi-disciplinary team you need to deliver the interventions.

Ms Hannett KC: Just by way of follow-up, in your experience in terms of the Long Covid clinics that are available in England, is the type of multi-disciplinary care that you’ve just described that you deploy replicated in all of the Long Covid clinics in England?

Professor Evans: So I would say at the beginning going into 2021 was probably our sweet spot of getting things as good as it’s been. There were several clinics that looked like that. I’m not sure ever there were 100 clinics that we had, but we were working towards that, and actually there have been really good examples of peer-learning within clinics where you can share good practice and patients were absolutely key to that. That worked very well.

Now, I think we’re really running the risk that actually those clinics are few and far between and actually those clinics are then getting really stretched, you’re then not being able to deliver care in a timely, effective way. So, as we were saying before, we really need to advance this, not be in retreat mode.

Ms Hannett KC: Thank you. Just then looking at Long Covid services for children and young people. Can you expand a little more on why you recommend a dedicated Long Covid multi-disciplinary team to provide support for children and young people?

Professor Evans: Absolutely. In a similar vein to adults and absolutely children and young people can have different symptoms and manifestations of Long Covid to adults but the principles of care should be the same and actually, just like we were talking right at the end about occupational and vocational rehabilitation, actually working with schools and education is such an important time in a child’s life often, going to school and education, to have that actually interrupted for a month let alone many months and maybe a couple of years we really need those clinics to have that expertise to support the wider social support needed for children.

Ms Hannett KC: You perhaps may have already covered this but just for clarity can you comment on whether general paediatric services are sufficiently well equipped to respond to the needs of children and young people with Long Covid?

Professor Evans: So I’ll answer that with a caveat that I’m not a paediatrician but I can’t see why it would be different and in fact I would say it was probably more important that you had dedicated specialists for children. So just like I wouldn’t advocate that – and actually, there very often isn’t generalists as such, but specialists tend to have their own specialty and then I think you’d be at risk of the same repeating multiple appointments and not actually ever getting a solid answer or a solid plan.

Ms Hannett KC: Thank you. Then just moving to healthcare and treatment. You have given evidence on post-exertional symptom exacerbation. Do you agree that advising Long Covid sufferers to participate in graduated exercise can exacerbate Long Covid symptoms?

Professor Evans: So I agree that exercise at certain times and in certain individuals can be extremely challenging. Everybody needs to be assessed and then again as part of that complex assessment post-exertional symptom exacerbation is one of those things that need to be explored.

The exercise rehabilitation that we’re advocating that is being used in clinical trials is this personalised approach. So it’s not a fixed regime, it’s personalised to the individual, with pacing and progression working with the individual person. That’s definitely what we would advocate.

Ms Hannett KC: And would you recommend that advice on PESE (post-exertional symptom exacerbation) is included in the NICE guidelines on managing long-term symptoms of Covid-19 to prevent medical professionals providing potentially harmful advice on exercise?

Professor Evans: Yes, absolutely, it needs to be incorporated both in terms of definitions and in clinical care, and it would be one of the phenotypes that future research trials should actually distinguish even further.

Professor Brightling: Can I just add a further comment though. So in the ME/CFS diagnosis, the – PESE is part of the definition, whereas with Long Covid it clearly is recognised as being really important in some individuals, as Rachael’s explained, so I agree it should be part of the guideline but not necessary as part of the definition of the diagnosis.

Ms Hannett KC: Understand. And just while we’re talking about the NICE guidelines, they haven’t been updated since November 2021. Apart from PESE, are you aware of any other significant developments in the understanding of management of Long Covid which should now be reflected in those NICE guidelines?

Professor Evans: I think there’s certainly enough learning and clinical trials that have been conducted that another synthesis would be timely. And I think, as we keep saying, that if you’ve got clinical care and experts in the field, then you will promote needing these guidelines.

One thing I do want to highlight, on a much more positive side than perhaps we’ve heard a lot today, is that we’re really in a good position because of the Long Covid advocacy groups, Long Covid Support, Long Covid SOS, Long Covid Kids, and I think actually we’ve taken a lot of learning about how to work with people living with the condition, both in terms of research and in clinical care. So for future guidelines we’re already planning how we can work together and – whether that’s NICE or a different organisation, to actually synthesise what clinical care and current research looks like.

Ms Hannett KC: Thank you.

Just moving on to research and Long Covid. You’ve obviously discussed two buckets of government funding for research into Long Covid, one in autumn 2020 and the second in spring 2021. Just looking backwards first of all. Can you comment on how the speed of approval and funding for research into Long Covid compared with the speed and funding for research into treating acute Covid and whether there’s any justification for the distinction.

Professor Brightling: So there’s a number of differences that I think are worth pointing out. So the speed in terms of the decision-making for the funding was actually faster than you would typically have within normal funding rounds, but much slower than was done for the acute episode.

What was perhaps the greatest problem was actually when things were then supported but there was a major problem in terms of the research governance in the UK. So one example of that would be the MHRA, who would clearly have to be involved when it’s an investigation of medicinal product, as was the case with STIMULATE-ICP. So you then end up in a situation where the funding is awarded but there’s a very large delay then from the point where funding is awarded to then actually be able to start the trial.

The same was true for Rachael’s study that she described earlier, PHOSP-I, where there was almost a year from the initial applications for all of the approvals because at that time there was a real problem with the MHRA governance processes. This is now much better but it did impact particularly adversely on Long Covid studies. At a time when you wanted to be able to move things very quickly some of the studies became very slow.

In contrast, PHOSP-COVID, which was the study that we co-led, was actually approved and patients were then recruited very quickly. So the point from approval to then ethical approval was a matter of days, and then first patient was a matter of weeks. So it showed that at the height of the pandemic things could be done at incredible pace, which was not the case with later studies.

Ms Hannett KC: You were asked all the questions we were going to put you about research in adults apart from the one I have just asked, but could I just ask you about research for Long Covid in children. Has there been any biomedical research to better understand Long Covid in children and young people?

Professor Brightling: So there is work that’s particularly focused now, through the NIH Recover programme. In the UK there’s very limited research in terms of then looking at the underlying biology, in terms of them doing sampling, but considerable work in terms of then looking at the epidemiology and the phenotypes and the description of Long Covid in children and young adults.

Ms Hannett KC: In your view, would that be a recommendation that you would make, that that sort of work ought to be carried out in the UK?

Professor Brightling: So I think there need to be a suite of research. So we talked earlier about the types of approaches we would recommend in terms of intervention trials. But also the more fundamental understanding should be supported through particularly through UKRI in the UK, and that would allow for more discovery research which would include children and young people as well as adults.

Ms Hannett KC: Penultimate topic. Data and Long Covid. You gave some evidence earlier about the quality of the data in the Long Covid clinics. We’ve also had evidence earlier in this module about Long Covid coding in primary care and I wonder if you’re able to comment on the quality and the accuracy of that coding?

Professor Evans: Yes, I commented earlier that it’s been a real issue around getting data at large scale using electronic healthcare records because of the poor quality of coding. And when electronic studies have reported on Long Covid it really does underestimate the prevalence of Long Covid and the impact.

Ms Hannett KC: And that data then, by implication I think you’re suggesting it should be collected, how should that situation be improved in terms of collecting the data to enable your research and so on?

Professor Evans: That’s a really good question and certainly early in the pandemic there was a lot of work done actually, led through the Royal College of General Practitioners, around coding for Long Covid, but for whatever reason over the last few years it’s still very much underused.

Ms Hannett KC: And in terms of – that’s prevalence data. In terms of impact of – data on the impact of Long Covid, ie the impact of its severity on sufferers, should that also be collected? And if so, by whom?

Professor Evans: Absolutely, and that’s also really missing. The ONS team did a really good job, and again I know that patients living with Long Covid very much were involved in that survey to make sure that the impact on daily life was recorded.

There have been, you know, just – they’re very crude but it’s a good guide is the Covid functional scale, and I think we should be using that in primary care and secondary care. It’s a 1:5 scale very similar to – we use for breathlessness for certain long-term conditions, and actually they tend to be, and certainly the evidence so far shows, that that scale is quite good at highlighting who has got the worse impact for health-related quality of life.

Obviously occupation can be assessed. The problem with returning to work is that some people return to work even though they’re not able to really fully engage or they’ve got no other life apart from doing that. So, again, that’s a crude way of measuring impact.

With the scale, that can then be used to prioritise – when I keep saying about stratifying care, actually those in the sort of 0 to 1 categories then can have a light-scale approach, those that are more heavily impacted they would be a really good guide for GPs to think: yes, that’s who I need to be referring on to specialist care.

Ms Hannett KC: Thank you.

Last topic, public awareness on Long Covid. You’ve given evidence on the current risk of developing Long Covid from new Covid-19 infections and reinfections, and, Professor Evans, you gave evidence just now on the need for those with Long Covid to be prioritised for vaccination. Can you just explain why that is important in the context of reinfection?

Professor Evans: So generally vaccination has a protective effect to getting Long Covid. Even if we don’t understand all the mechanisms of why certain individuals get Long Covid, there are absolutely individuals at risk and we have to start thinking that – and because infections are still common, they’re still out there in the community, SARS-CoV-2 hasn’t gone away, if you were susceptible to getting Long Covid, whether that was your personal demographic, something in your immunology, whatever it was, surely you must be at risk of getting it the next time, and therefore, if you’ve already to got a condition, you definitely don’t want to get it again and get a condition worse. So that’s what I was basing that comment on.

Ms Hannett KC: Does the same point apply to the eligibility for children and young people for vaccination?

Dr Rachael Evans: I don’t think I can comment on that just because I really don’t have the medical knowledge.

Ms Hannett KC: I understand.

I’ll move on to my next question which is: can you advise on whether there are sufficient public health communications, if any, on the current risk of Long Covid in the context of the ongoing transmission of Covid-19?

Professor Evans: Can you just repeat the first part of that.

Ms Hannett KC: Of course, I’ll simplify it. Are there sufficient public health communications on the risk of developing Long Covid given that Covid infections are all around us still?

Professor Evans: Again, it’s a really good point that actually all the way through the pandemic we naturally had the statistics from the hospital admissions, the deaths but actually at no point did we ever really get in the public eye the volume of people with Long Covid nor the impact, and actually I think the public are largely still unaware of the potential longer-term consequences of getting the virus and reasons to avoid it.

Ms Hannett: Thank you, Professor Evans and Professor Brightling.

Thank you, my Lady, those are my questions.

Lady Hallett: Thank you, Ms Hannett.

Ms Peacock – who is behind you but if you could make sure, please, that your answers go into the microphone. Thank you.

Questions From Ms Peacock

Ms Peacock: Good afternoon, I ask questions on behalf of the Trades Union Congress. My questions relate to the impact of Long Covid on black, Asian and minority ethnic healthcare workers.

You’ve already been taken to paragraph 88 in your report which sets the percentage statistics on ethnicities of patients who accessed the Long Covid clinics. Professor Evans, you helpfully explained that there is missing data on ethnicity within those percentages and missing data in respect of those who may not have access to clinics.

Do you consider that Long Covid disproportionately impacted, both in terms of prevalence and severity, upon black, Asian and minority ethnic healthcare workers? Or perhaps my question is, do the data exist for you to answer that question?

Professor Evans: Yes, I was – before you put the caveat in, I was about to answer that I think unfortunately we just don’t have good enough data and we urgently need that to understand, even in the clinics we’ve got, who are we actually missing. And there are – because Long Covid is a symptom-based condition, it absolutely depends on language and understanding both for the person themselves if they’ve got the condition to know to access healthcare, and then for healthcare professionals to be able to interpret that.

And even with the research and this has been written about, even the way that we – the outcomes that we use they all need to be culturally sensitive. So there’s a whole host of research work that needs to be done there and what we need to do in clinical care to really be able to understand how Long Covid is affecting different populations.

Ms Peacock: And just focusing on what we do know, the data which are available, I’d like to briefly identify two passages in your report which you’ve already touched upon in evidence.

First, at paragraph 87 you note that:

“… Long Covid is more common in females, middle age, pre-existing health conditions including obesity and social deprivation. It is also known that female sex, obesity, and pre-existing health conditions make someone more likely to develop severe Long Covid rather than milder disease.”

And then secondly you explain at paragraph 94:

“Healthcare workers were at higher risk of exposure to SARS-CoV-2 infection throughout the Covid-19 pandemic and early studies highlighted the risk of severe disease associated with certain ethnic backgrounds.”

In absence of clear data and just taking what we do know given the higher incidence of Covid-19 infection in healthcare workers, the higher prevalence of pre-existing health conditions in black, Asian and minority ethnic groups, the higher prevalence of severe disease in black, Asian and minority ethnic groups, the higher level of vaccine hesitancy and refusal in those groups, in particular black, Pakistani and Bangladeshi groups, and the higher levels of social deprivation associated with structural racism, is it fair to say the data we do have give rise to a real concern that Long Covid may disproportionately impact black, Asian and minority ethnic workers?

Professor Evans: Absolutely, and I think it’s that impact not only – well, in all ways in how people then access the healthcare. There’s been some very specific qualitative work which is actually a very difficult read which is highlighting the challenges that people from different backgrounds have both with experiencing Long Covid and then seeking healthcare support and their voice would definitely say that there are issues there that we urgently need to address.

Ms Peacock: Studies are ongoing to understand the potential disproportionate impact in the way that we’ve been discussing and in particular the NHS Race and Health Observatory reach-out study, which is in its third and final year, as I understand it, and so far has published two interim reports. If Long Covid is found to have disproportionately impacted upon black, Asian and minority ethnic healthcare workers, what do you consider could and should be done in a future pandemic to avoid any such disproportionate impacts being repeated?

Professor Brightling: One of the things that we don’t fully understand until it happens is what the risk factors are going to be for a future pandemic. So I think what we need is we actually need those hibernating studies that we’ve described, the clinics that are ready to be increased at scale, but also a recognition that there are groups that so far we’ve not, I think, served as well as we could for the reasons that you’ve described. That doesn’t mean that we can assume that the next pandemic will disproportionately affect one pre-defined group versus another but it’s likely to be affecting certain groups, certain risk groups, and as long as we recognise that and as long as we set things up in order to make sure that we are identifying that and acting accordingly that to me is the real key.

Ms Peacock: So building on that lack of certainty that you’ve identified in respect of a future pandemic, the Chief Medical Officer who we’ve heard from, Professor Sir Chris Whitty, he gave evidence that in his view the key to improving the safety of higher-risk individuals was principally to optimise the safety for all in the workplace, so rather than sectioning out groups. Does that logic apply here in terms of disproportionate impact of Covid-19 on healthcare workers that perhaps prevention is the best cure and avoiding occupationally-acquired Covid-19 infection for all workers would be the best way to approach the issue?

Professor Brightling: So on one level I agree that obviously if you can have optimal management for all then that would be ideal but we recognise that there will be disproportionate risks and for that reason I would disagree with Sir Chris Whitty in that I would suggest that we need to not assume what those disproportionate risks are but at least be cognisant of them, prepare for them, and then adjust and direct resources in order to try and mitigate those risks.

Ms Peacock: So identifying those risks early and assessing based on them?

Professor Brightling: Correct.

Ms Peacock: I’m grateful. Those are my questions.

Lady Hallett: Thank you, Ms Peacock.

Mr Stanton, who is also behind you so I’m afraid you are going to have to test your neck muscles.

Questions From Mr Stanton

Mr Stanton: Good afternoon, Professors. I ask questions on behalf of the British Medical Association.

I’d like to ask some questions about the topic of managed returns to work which is an issue you’ve already touched upon with Mr Mills. And the circumstances I have in mind are as described by Nicola Ritchie earlier in her evidence, particularly thinking about her fears for her ability to continue with her career.

At paragraph 129 of your report you note that flexible, individualised long-phased returns appear to be better managed in the private sector than in the NHS.

Are you able to provide any examples from both the private sector and the NHS to illustrate this difference in approach and what do you think are the reasons for flexible phased returns being better managed in the private sector?

Professor Evans: So those comments I do need to caveat that they are my anecdotal clinical experience from having now delivered a Long Covid clinic most weeks for four years, and in – I’m certainly not saying that everything in the private sector was better but anecdotally, certainly in smaller companies, there just seemed to be better care, better links to occupational health, and a bit more listening and guidance and probably just a bit more flexibility.

It has felt that the NHS has this very fixed process which we all understand, a very large employer has to have some guidance, but – and there are pockets, definitely of occupational health physicians that are desperately trying to learn about Long Covid and work with the individual, but from my side as a clinician I’ve just heard that feedback too often that “I wasn’t ready to do the” whatever hours it was, this many weeks, the next weeks, the next – you know, the very fixed targets and then people are, yeah, stopping working when they don’t want to and that, again, my opinion is that doesn’t seem helpful for anyone. It’s not helpful for the NHS and it’s not helpful for the individual.

And actually, as I’ve said before, I can’t think of anyone actually that I’ve worked with over the last four years that hasn’t wanted to return to work. So it’s everyone’s got the same goal and actually with some people we’ve had really good experience of really careful phased returns, different types of work for a period of time. Some adjustment on the healthcare professional’s, particularly, front that they might not be able to go and deliver exactly what they were doing before. And we have had some real success stories.

Mr Stanton: Thank you.

In addition to the individual impacts of poorly-managed returns, can you give some idea of the types of adverse impacts on the wider NHS and also on the quality of patient care?

Professor Evans: Absolutely. It becomes a terrible storm where the figures from after the pandemic in the NHS of the sickness rates were extremely high due to, and we’ve heard in this Inquiry from ICU, from other departments, you know, just the trauma that people working in the NHS went through, through the pandemic. So there are higher sickness rates anyway. Some of that I expect is Long Covid. So the organisation needs to support their healthcare workers to get back to work to help the organisation as well as the individual.

And sickness absences in the NHS, the workload is already probably 110% of what you feel it should be. As soon as there’s people missing, I mean it just gets desperate and unfortunately the main people that are impacted by that are the patient.

Mr Stanton: Is there also a loss of specialism as well or a risk of a loss of specialism by not facilitating proper returns to work?

Professor Evans: Absolutely. Certainly for healthcare professionals there’s been a huge amount of investment in training. Nicola, a very skilled physiotherapist, you don’t want to lose that expertise. And I think perhaps as well we need to think about other – when I was saying the flexibility of returning to work, proactively thinking, well, what other jobs could people do if they can’t do exactly what they were doing before, much more flexibility, and I think that’s where I just felt it was very much a personal anecdote having been in the clinic, I just felt that sometimes the private sector seemed to get that a bit better and I suppose that was a bit shocking especially as for healthcare workers, they, certainly in 2020, had actually contracted the virus at work.

Mr Stanton: Thank you. Moving on to a slightly different but connected topic of early intervention. Can I ask, how can the NHS improve its early intervention and diagnosis of Long Covid so as to minimise, where possible, the severity of the impacts that we’ve discussed? And also the wider societal impacts such as the economic cost of Long Covid which you refer to at paragraph 38 of your report?

Professor Evans: That’s a huge question. So to start with, as we’ve said, actually having a healthcare service and system that is Long Covid-ready. Having the research to understand much more about this condition. Having the treatment so that we can get the treatments in early. And that still needs a huge piece of work between clinicians, researchers, government, patients.

Mr Stanton: Thank you. And finally a question about health inequalities, please. Having regard to your reference at paragraph 79 of the report that social deprivation is known to be a key driver of health inequalities, and has been associated with a risk of Long Covid, can I ask whether in your view the state is ensuring that resources for managing Long Covid, such as specialised clinics and support programmes, are equitably distributed between poorer and wealthier areas?

Professor Evans: So I don’t know the facts for that but I expect we’re absolutely at the mercy of the inverse care law for Long Covid that, as I was saying before, the patient groups have had a huge role in advocacy, and I expect a lot of the clinics are in secondary care next to academic centres, and absolutely we need to really relook at where clinics are and to ensure that it’s the right support into different communities.

Mr Stanton: And connected to that and finally, at paragraph 85 of your report you indicate that Long Covid care is disproportionally accessed by people from higher socioeconomic groups. Can you give any indication as to why that should be?

Professor Evans: So that comment was from the NHS England post-Covid hubs for children and young people. I think they were mainly just trying to highlight that even all the barriers that we’ve heard of, again how to actually access healthcare, how to actually then persevere to get through the healthcare system has been incredibly difficult, and it’s likely to be those with more knowledge, more ability, that are able to do that, and therefore it is even worse for people that have got more difficult lives, different priorities, and we just need to make access easier for everybody but ensure that we’re not missing very important groups.

Mr Stanton: Thank you very much. Those are all my questions.

Thank you, my Lady.

Lady Hallett: Thank you, Mr Stanton.

Mr Simblet is again behind you but a bit closer.

Questions From Mr Simblet KC

Mr Simblet: Good afternoon. I’m asking questions on behalf of the Covid Airborne Transmission Alliance (CATA), and it’s in relation to what’s in your report and your oral evidence in relation to dedicated Long Covid clinics and rehabilitation services promoting a unified approach to Long Covid care. And as you said earlier, clinics are a foundation for Long Covid care, clinically effective, cost effective.

So, in that context, given as you also said earlier that there are worrying consequences for the ever-increasing disparity in Long Covid care, would you go as far as to say that there should be statutory minimum criteria in relation to NHS Long Covid services and would they promote consistency in the service patients receive across the UK?

Professor Evans: So the short answer is yes, and the NHS England service specification really did set out to highlight what good care would look like. I don’t think I’ve got anything else to add to how you actually make that happen but absolutely there should be a – for a given population, having that tiered approach so that you stratify care according to the need, so it’s not that I’m saying that everyone with Long Covid needs that top end service, that’s not correct, but everyone with complex needs should be able to access complex care.

Mr Simblet KC: Thank you.

I see Professor Brightling nodding. Is there anything you needed to add?

Professor Brightling: I think it’s also important that the same equity of access is across all four nations.

Mr Simblet KC: Thank you. Those were my questions, thank you very much.

Lady Hallett: Thank you, Mr Simblet.

Lastly, Mr Thomas, who is going to come around to where Mr Simblet was.

Questions From Professor Thomas KC

Professor Thomas: Good afternoon, Professors. I’m representing FEMHO, the Federation of Ethnic Minority Healthcare Organisations.

Can I first start with discussing the data and the limitations on the data. In your report you noted the ongoing challenges in understanding the full scope of Long Covid, particularly due to the limitations in the data related to ethnicity. Can you share any progress made in understanding how ethnicity may influence the risk of developing Long Covid.

Professor Brightling: So the – so you’re absolutely correct this is an area that needs more work. So what we do know is when we originally recorded the ethnicity in the early studies that there were certain risk factors that were coming through very consistently, so age and sex and comorbidities in particular, whereas with ethnicity I think the picture was much more complex, in contrast to, really, the acute Covid, where clearly there was an increased risk, whereas in Long Covid it seems that that increased risk is less clear. And I think that’s because of this poor data recording, exactly as Rachael has described, and I think that’s what we really need to strive for.

But your question was: are we aware of that actually happening? And I think we can say that that, amongst other things that we’ve listed, really is on the list of things that still need to really be done.

Professor Thomas KC: Okay.

Professor Evans, I think you agree that the current data limitations continue to hinder a comprehensive understanding of disparities faced by ethnic minorities; is that correct?

Professor Evans: Can you just repeat the last bit, sorry?

Professor Thomas KC: In response to questions from Ms Peacock just a moment ago, I think I understood your evidence to be that current data limitations continue to hinder a comprehensive understanding of disparities faced by ethnic minorities; is that correct?

Professor Evans: Absolutely. We just – both epidemiologically and in clinical care we just don’t have good enough data to really understand what the gaps are to then be able to think through the other questions of what we then do about them.

Professor Thomas KC: Which leads me on to my last question on this topic, which is this: what measures would you recommend to enhance a collection and analysis of data regarding Long Covid in ethnic minority communities? And I take that feeds into what’s just been said but if there’s anything else?

Professor Evans: Well, I think it just needs to be really thought about carefully. That’s the first thing.

I think most of the Long Covid studies that were set up did have that in mind. Certainly we can speak to the study that we run. We were very aware that we wanted to make sure it was inclusive, that we got the right participants, and we did quite a bit of work to how to engage certain communities in research. And certainly in our institution we have the centre for ethnic health that does this not for just Long Covid but actually trying to make communities almost research-ready, so that we make sure that we’ve got the research designed in a way to be inclusive and actually communities ready to trust and be participants in that research. That’s one thing.

We’ve not talked much about outcome measures today but, again, a lot of our outcome measures for Long Covid, around symptoms, around how people feel, we need to make sure they are both language and culturally appropriate. And that is absolutely something that we can be working on in between pandemics. You don’t need a pandemic to suddenly start being able to have appropriate outcome measures. So that’s certainly not the whole package of answers to your question, but that’s at least a couple of things that we should be doing.

Professor Thomas KC: That leads me very nicely on to the second area, which is addressing health inequities and cultural barriers in Long Covid diagnosis.

At paragraph 92 of your report you mention that health inequities can arise from varying health-seeking behaviours. Question: to what extent might racism, stigma, discrimination and cultural differences contribute to these difficulties in recognising Long Covid symptoms among the ethnic minority communities?

Dr Rachael Evans: So, again, very important question, I think the question around stigma and scepticism we’ve heard from all populations with Long Covid.

I mentioned the study that was very uncomfortable reading which was a qualitative piece of work where they went out and interviewed people with Long Covid from different backgrounds, and absolutely the patient testaments there is they do feel all the things that you’ve listed there have been, for a greater or lesser extent, experienced by some patients.

Professor Thomas KC: What improvements could healthcare systems make to ensure timely and supportive diagnoses for Long Covid within these communities? So I’m trying to look forward and in a positive way. What could be done?

Professor Evans: Absolutely. And I’m trying not to steer into the whole population but there is so much work that we need to do that really accounts for everybody. I’ve already just mentioned for – about the work that the centre of ethnic health are doing. I can’t think of anything else.

Professor Brightling: I think one of the things Rachael alluded to earlier, which I think is where we perhaps need to go, is also that early case identification.

So at the moment we’re very much relying on a reactive process with what we’ve already described really as an inadequate national service for Long Covid. Whereas what we actually need to do is recognise what are the key presenting symptoms, what is the language used around those symptoms in different ethnic groups, and then actually be going out and seeking where those people actually are in the community and how they’re being received at the moment in primary care.

And as Rachael’s alluded to, this is something that – there’s leaders within Leicester, where we are, with Kamlesh Khunti and others, who are really trying to develop exactly these kind of approaches. But they’re in very early stages and I think it’s something that’s going to be really important, because Long Covid may not present in terms of – the words that people may use to describe it may be culturally different between different ethnic groups.

Professor Thomas KC: I have two more topics. The next one is examining ethnic variability in Long Covid symptoms and the effect on healthcare workers.

So, at paragraph 94 of your report you highlight that healthcare workers, particularly those from certain ethnic backgrounds, face a higher risk of severe Covid-19 outcomes.

Question: is there any evidence suggesting that Long Covid symptoms manifest differently across ethnic groups?

Professor Evans: I think there’s evidence that symptoms are interpreted and described differently amongst other – amongst different ethnic backgrounds and different cultures, I expect. So we know that’s so for the breathlessness where I – my research is mainly based, that actually sometimes people will use pain to describe the distress of breathlessness, and actually a healthcare professional, if they hear “pain”, they’ll interpret that completely differently.

I expect that the – I think everybody, if they – especially before we knew what Long Covid was, really struggled to articulate what they were feeling because there is just this, you know, blast of symptoms, you know, not just – again, not trivialising chest pain if someone has chest pain, but that can be one symptom for a cardiac condition. Long Covid, many people have 20-plus symptoms. So I think everyone finds that very difficult to describe. And then if you put cultural differences, differences around health seeking, when it is felt to be appropriate to go and seek health, are you worth going to seek healthcare, there’s a lot of stigma particularly from certain populations, not just ethnicity but more in areas of social deprivation. Sometimes people feel that they’ve, you know, deserved to be ill and therefore that stops them seeking healthcare.

If they’ve heard that actually there’s not that much trust in the healthcare system and if already they don’t have much trust in a healthcare system that will all negatively impact our ability to actually support that population.

Professor Thomas KC: My last question on this topic is this. Has there been any targeted research conducted to understand how Long Covid affects ethnic minority healthcare workers compared to their counterparts?

Professor Evans: So there’s the UK-REACH original study. They have definitely done further work looking at how Long Covid has affected healthcare workers of different ethnic backgrounds. I’m not aware of all the results yet but they’ve definitely got a series of ongoing research at the moment, so that is active.

Professor Thomas KC: Final topic. Again at paragraph 79 of your report you discuss the role of social deprivation in driving health inequalities related to Covid-19 and Long Covid.

Question: could socioeconomic factors such as limited healthcare access or lower awareness of Long Covid symptoms contribute to under-reporting within deprived communities?

Professor Evans: Absolutely, and then I think we’ve also heard how much effort, time, energy, it’s taken to navigate the healthcare system even by people that have a skill set to be able to do it albeit completely challenged while being ill. So yes, I think – yeah definitely.

Professor Thomas KC: And what public health measures could be implemented to raise awareness and improve access to care for Long Covid in socioeconomically deprived populations and, again, trying to help the Inquiry here in terms of trying to look for positive things that could be done, recommendations?

Professor Brightling: Again, I think it would be good to consider case finding because, as we’ve just heard from Rachael, not only do you have problems with people that are actually seeking healthcare, it’s whether they’ve actually got healthcare available they can even seek in some of these areas because we all recognise that it’s still often quite difficult to access primary care for some individuals.

So if you actually have better ways of then actually going out into the community and trying to identify where there are challenges in terms of ongoing symptoms, so actually trying to then identify cases, and then being proactive, so, again, trying to then think about how you can then proactively try to help to manage those symptoms in people in those areas.

Professor Thomas KC: And finally, and I’m just piggybacking on something you just said earlier to Ms Peacock, from what you said earlier about better support from NHS for workers with Long Covid and occupational health, it being very rigid and inflexible, are you aware of reports of disparities in employer support for ethnic minority healthcare workers? Are you aware of any reports of disparities?

Professor Brightling: So I’m not aware personally of that but absolutely there are disparities that have been in the public domain around the way different ethnic groups have then been treated in terms of their exposures at work, and then therefore their risk of then long-term consequences. So that I appreciate is in the public domain but not something that I’ve personally confronted.

Professor Thomas: My Lady, those are my questions.

Lady Hallett: Thank you, Mr Thomas.

Professor Thomas: Thank you.

Lady Hallett: Thank you very much, Professors. You’ll know far better than I but one of the most distressing things about Long Covid, I understand from sufferers, is not being believed and I’m sure on behalf of all the sufferers they want me to thank you and your colleagues

for all the work that you do, not only getting

recognition for the condition but trying to treat and

support people who have it.

So thank you for all your clinical work and your

research work, but thank you also for the work you’ve

done for the Inquiry. This may be your last appearance,

I don’t know, but if it is, thank you for all the help

that you’ve given.

Right, 10 o’clock tomorrow. Thank you.

(Witnesses withdrew)

(3.55 pm)

(The hearing adjourned until 10.00 am on Wednesday, 30 October 2024)