Transcript of Module 3 Public Hearing on 10 October 2024
(9.59 am)
Lady Hallett: Ms Nield.
Ms Nield: My Lady, I call, please, Professor Jonathan Wyllie.
Professor Jonathan Wyllie
PROFESSOR JONATHAN PETER WYLLIE (sworn).
Questions From Counsel to the Inquiry
Ms Nield: Can you give your full name, please.
Professor Jonathan Wyllie: Jonathan Peter Wyllie.
Counsel Inquiry: Now, Professor Wyllie, you have provided a signed witness statement. That’s INQ000474274. You explain in that witness statement that you have also adopted the witness statement of Professor Lockey, president of the Resuscitation Council UK, that is witness statement INQ000343994, and you will be speaking to that witness statement today?
Professor Jonathan Wyllie: That is correct.
Counsel Inquiry: Professor Lockey (sic), can I say at the outset that the Inquiry is going to be hearing from five witnesses today and can I ask you, please, at the outset to assist the Inquiry in keeping your answers as concise as possible. Thank you.
You are an executive member of the Resuscitation Council UK, I think that’s right?
Professor Jonathan Wyllie: That’s correct.
Counsel Inquiry: And the immediate past president, so you were the president during the pandemic; is that right?
Professor Jonathan Wyllie: That’s correct. I was president from 2018 to 2021.
Counsel Inquiry: Thank you. Professor Lockey explains in his witness statement that the Resuscitation Council UK – and we might call it the RCUK for brevity – is responsible for issuing resuscitation practice guidelines and standards for the healthcare sector throughout the UK?
Professor Jonathan Wyllie: That’s correct.
Counsel Inquiry: And I think the process for development of those guidelines is accredited by the National Institute for Health and Care Excellence, NICE, and it follows best practice for guideline development, and those guidelines are implemented across the National Health Service, social care, and in community settings, is that correct?
Professor Jonathan Wyllie: That’s correct – for all four nations.
Counsel Inquiry: Thank you. You also explain that the core membership of RCUK comprises specialist clinical and academic experts who are recognised as international leaders in resuscitation, and indeed they play leadership roles with the International Liaison Committee on Resuscitation, ILCOR, and the European Resuscitation Council, the ERC, which scrutinise published scientific evidence on an international scale; is that correct?
Professor Jonathan Wyllie: That’s correct.
Counsel Inquiry: Professor Wyllie, I’d like to focus three topics today in which RCUK was involved during the pandemic period.
Firstly, the guidance provided by RCUK around PPE protective personal equipment for healthcare workers performing cardiopulmonary resuscitation during the pandemic; secondly, I’d like to look at the role of RCUK in advance care planning across UK and the ReSPECT form that was developed by RCUK, and finally I’d like to move on to issues that arose during the pandemic around DNACPR notices and the making of those notices.
On those latter two issues, we heard yesterday from experts in intensive care and I think you are familiar with the evidence that they provided yesterday; is that correct?
Professor Jonathan Wyllie: I am, yes.
Counsel Inquiry: We’re not going to be going over the same ground today, but there are some matters in relation to those final two topics that I would like to pick up with you, if I may. Can we begin, please, this morning with cardiopulmonary resuscitation and can we define what that is in a healthcare setting; what does the CPR procedure entail in a hospital?
Professor Jonathan Wyllie: So it is a treatment that can be instituted when a patient has a cardiac arrest and that is not the same as a myocardial infarction, although that can lead to a cardiac arrest, but it’s defined as an absence of breathing or of signs of life, and it is effectively your heart stopping pumping, effectively.
Counsel Inquiry: What actions then have to be undertaken by a healthcare worker if they were to perform cardiopulmonary resuscitation? What are the procedures?
Professor Jonathan Wyllie: Initially, basic resuscitation, which focuses on chest compressions and ventilation breaths to support the circulation until more definitive treatment can be brought to bear such as defibrillation to revert the heart to more normal rhythm, or advanced airway manoeuvres in order to more effectively do the breathing for the patient.
Counsel Inquiry: And is there any difference between the CPR procedure that’s undertaken in a hospital setting, and that provided, for example, by a paramedic either in an ambulance or in someone’s home if they’ve gone to someone’s home?
Professor Jonathan Wyllie: So there’s very little difference in approach, but obviously there is a difference in timing. In a hospital you are much more likely to be – to have help immediately available with – a national 2222 call goes out, an arrest team comes up and there are likely to be healthcare professionals very close by. Obviously, in an out-of-hospital cardiac arrest, mostly you will be in your home. About 70% of cardiac arrests happen in your home, and the rest of the time you’re more likely to be out and about with members of the public.
Counsel Inquiry: Thank you.
I think we heard yesterday, I think it’s correct that the survival rates of CPR outside hospital is 8%, and the survival rate in hospital, so from the survival rate to hospital discharge, for in-hospital CPR, is 23%?
Professor Jonathan Wyllie: That’s correct.
Counsel Inquiry: So, aside from the relatively low survival rate, what about the potential for CPR to cause harm to the patient? I’m thinking now particularly in a hospital setting rather than if somebody’s having CPR on a pavement outside.
Professor Jonathan Wyllie: So in any setting, I think that what most people think of as CPR, most people think that it is just another treatment, but in actual fact it is quite a violent procedure to compress a chest sufficient for the heart to pump blood around, and therefore there is the immediate risk of harm, and up to 70% of adults who undergo CPR and chest compressions will have rib fractures, or – large or small. Of course, that is recoverable, but the major issues for a patient are really whether they wanted to be brought back from what is effectively death, and that depends on the quality of life afterwards. So –
Counsel Inquiry: What about the potential for a patient who has received CPR in a hospital who has been resuscitated to be in a worse medical condition, a worse state than they were before they had the cardiac arrest?
Professor Jonathan Wyllie: That is always possible and, therefore, one has to weigh the benefits to your patient against the potential harm. If your heart stops, then there is the potential for damage to organs, and especially the brain, from that moment onwards.
Counsel Inquiry: So is it the case that somebody could be resuscitated but be, for example, in a persistent vegetative state?
Professor Jonathan Wyllie: That is possible.
Counsel Inquiry: Professor Wyllie, I’d like to come on to some of the issues that came up during the pandemic in relation to the guidance produced by RCUK concerning the appropriate level of PPE for healthcare workers performing CPR, and I think this is set out in some detail in Professor Lockey’s witness statement and I’m not going to ask you to give us the chronology of the meetings and contacts between Public Health England and the Resuscitation Council UK, but I think, suffice to say, there was a divergence in the guidance that was given in that Public Health England, the UK IPC guidance, as we have been referring to it, was that they described an absence of clear evidence that chest compressions in CPR – there was a lack of clear evidence that those chest compressions generated aerosols and therefore full PPE was not a requirement for CPR –
Professor Jonathan Wyllie: Indeed.
Counsel Inquiry: – and the position of RCUK was somewhat different – you’ve described it as a precautionary approach – and advised that full PPE should be worn during CPR.
Could you briefly summarise why RCUK gave that different advice?
Professor Jonathan Wyllie: So I think there are two or three reasons. One is that we looked at the same evidence but I think that Public Health England regarded a lack of evidence as effectively showing that there was no potential AGP production. We took a lack of evidence as being not enough evidence.
We also, from a practical point of view, all of us, and our instructors have done CPR and you can see droplets coming out. So we know what happens. We couldn’t prove it because we haven’t published that but we know that that happens.
Lastly, I think the evidence, because we had all been in contact with our colleagues around the world and especially in Italy, who suggested that full PPE was protective and latterly that came out in the urgent review of deaths in healthcare workers which absolutely showed the pretty much the same proportion of deaths amongst healthcare workers as everybody else in the population.
The key thing is it showed that those healthcare workers that were working in the highest risk environment, intensive care, seemed to be underrepresented which definitely suggests that PPE was protective.
Counsel Inquiry: So those who were working in intensive care had access to full PPE?
Professor Jonathan Wyllie: Indeed.
And so, lastly, we felt we had to take a precautionary approach because we had to balance the benefit to the patient with the risk to the health of healthcare workers, but also think about that in a cardiac arrest team who comes to a patient with, as you’ve said, a 23% chance of survival, if they affect five people those people will then not become – will become unavailable for healthcare for other people until they get over their Covid.
And so there were a variety of issues.
Counsel Inquiry: Thank you.
I think it was you, Professor Wyllie, as the president of the Resuscitation Council who engaged in a considerable amount of correspondence, meetings and so on, with Public Health England over that period. That was from, I think, the initial divergence in advice was 27 March 2020 right through until 27 May 2022.
Your aim throughout that period was to try to bring an alignment, I think, between the positions of Public Health England and RCUK on this subject.
Professor Jonathan Wyllie: Absolutely.
Counsel Inquiry: Can you explain why it was that RCUK felt it was important to avoid a divergence of advice to healthcare workers?
Professor Jonathan Wyllie: Because it’s confusing, we were getting enquiries from our own members, resuscitation officers, in different Trusts because they were being told one thing by their Trust management, coming down from PHE, and they were getting a slightly different – only a slightly different message, but it was around PPE, from RCUK.
So we reached out and had at the time, and I still feel it was a very useful meeting with Mrs Susan Hopkins to try and bring things together. After that meeting we pointed out they had nobody who was an expert on resuscitation informing their group and she also very helpfully pointed out that we had nobody who was an expert microbiologist or virologist in our group and therefore we asked if we could be put in touch with theirs, and we had a subsequent meeting, I think the day after, with those two people and that was helpful.
Counsel Inquiry: Nevertheless, it’s right I think that Public Health England did not change its stance on this PPE guidance.
Professor Jonathan Wyllie: No.
Counsel Inquiry: This recommendation is made by Professor Lockey in his witness statement:
“… in the eventuality of a future pandemic, processes [should be] put in place early whereby government and arm’s length bodies are encouraged to engaging with organisations such as RCUK that offer subject matter expertise not immediately available within their own teams.”
Does it follow from that that you did not consider that the engagement you received from Public Health England was constructive?
Professor Jonathan Wyllie: So the engagement with the microbiologist and virologist was hugely constructive and helpful to us but it actually confirmed our view because at that we were told they were less worried about aerosol generating particles and much more concerned about droplets. In fact that was proven not to be true in the end. But we knew that droplets were produced by compressions. So –
Counsel Inquiry: Focusing on the level of engagement that you got from Public Health England rather than that specific meeting –
Professor Jonathan Wyllie: Sorry, I apologise. So –
Counsel Inquiry: In the event of a future pandemic would you like the engagement that takes place with whatever bodies are in charge of IPC guidance to engage in a similar way or would you like a different process or a different type of engagement?
Professor Jonathan Wyllie: It has to be different. I think there has to be an understanding of what other organisations bring to the table and the communication needs to be two-way not one-way command and control.
Counsel Inquiry: Can I ask you this: was any indication given by Public Health England at any time in the course of your engagement with them that concerns about availability of PPE impacted on their approach to that particular question?
Professor Jonathan Wyllie: No. But after Mrs Susan Hopkins, we did not really get any acknowledgement of our reaching out.
Counsel Inquiry: Thank you.
Can we come on, please, to the subject of –
Lady Hallett: Just before you move on, Ms Nield, sorry to interrupt.
So in your engagement with Public Health England they are saying there’s an absence of evidence. You’ve explained why that doesn’t necessarily mean that there isn’t evidence just it hasn’t been found yet. If you didn’t get an impression it was a resource reason behind the decision not to issue the guidance you were seeking was there any other rational explanation as to why?
Professor Jonathan Wyllie: Yes, absolutely, and it’s important to know that Public Health England, what was put to us was that they did not want any delay in applying CPR to a patient in need.
In hospital that delay is very slight because most of us were in some degree of PPE and it was a matter of upgrading that quickly whilst the defibrillator was applied.
So that was the reason that was put forward to us at the time.
Lady Hallett: Thank you.
Ms Nield: Just building on that, if I may, I think included in your guidance was that very point, that it would be possible to deliver three shocks with a defibrillator whilst the rest of the team upgraded their PPE; is that correct?
Professor Jonathan Wyllie: Absolutely, because we knew from data from Wuhan that out of 136 patients with Covid who had a cardiac arrest only one had survived, and that was somebody with a defibrillatable rhythm. So the mortality from cardiac arrest is huge. It’s almost, not quite, total, and the one person who survived because the defibrillator was used and that corrected the rhythm.
Counsel Inquiry: So the key intervention –
Professor Jonathan Wyllie: Was to put the defibrillator on.
Counsel Inquiry: And it wouldn’t be necessary to upgrade to full PPE when that was being done?
Professor Jonathan Wyllie: No, because you can place that and give the shocks, up to three shocks, whilst you’re putting PPE on.
Counsel Inquiry: Thank you. If we could move on please to the subject of DNACPRs, do not attempt cardiopulmonary resuscitation, and advance care planning and deal with some of the paperwork, as it were.
First of all, the DNACPR notice. The Inquiry heard yesterday from Professor Summers and Dr Suntharalingam on the use of DNACPR notices and also ReSPECT forms from the perspective of intensive care clinicians.
They have explained how those are usually encountered in intensive care. Paper forms usually, red-bordered forms, and we saw an DNACPR form yesterday.
I think we can get up INQ00227411.
This is in fact the All-Wales DNACPR form. So that should be used across any settings in Wales. We heard yesterday that there isn’t a single standard form for use in England. I think that’s right.
Professor Jonathan Wyllie: I think that’s correct, yes.
Counsel Inquiry: Do you know about the position in relation to Scotland or Northern Ireland, whether there’s one form?
Professor Jonathan Wyllie: I do not know at all about Northern Ireland. I don’t know for certain about Scotland but Scotland certainly had a unified approach ahead of England in terms of implementing this, but I don’t know the details.
Counsel Inquiry: We can take that down now. Thank you, Lawrence.
We heard yesterday how DNACPR notices are encountered in intensive care and also that those discussions were sometimes held with patients or, more commonly, with their loved ones because the patients wouldn’t have capacity at that point.
Would you usually expect those decisions about DNACPR to have been taken prior to the point that the patient is very unwell, not conscious and going into ICU?
Professor Jonathan Wyllie: So that is the ideal situation. Of course in the pandemic there was a very fast, quickly-developing problem where people deteriorated surprisingly quickly and so that might not have occurred or might have occurred at speed.
Counsel Inquiry: So, ideally, if these conversations were going to be had, it would be preferable for those discussions to be taking place soon after the patient was admitted to hospital. Would that be correct?
Professor Jonathan Wyllie: Absolutely, but really a wider discussion would be better if there is time and skill.
Counsel Inquiry: I think you’ve explained that those DNACPR notices can be made in any setting, and so if they are made outside of a hospital setting, that notice should travel with the patient to the hospital. I think that’s correct?
Professor Jonathan Wyllie: Yes.
Counsel Inquiry: If a DNACPR notice has been made in a community setting or in primary care, is it the view of the Resuscitation Council that that ideally should be part of a wider conversation about advance care planning using the ReSPECT form process or an equivalent?
Professor Jonathan Wyllie: So the short answer is yes. As you heard yesterday, ReSPECT is a form of just embedding best practice. It isn’t to say that people not using ReSPECT were not using best practice because many of them absolutely were. But it would be best part of a wider conversation so that you know the patient’s or the family’s views on what is important to them. That’s not just a decision about CPR or not. It actually helps govern what is the best care for the patient.
Counsel Inquiry: I think we heard yesterday that there can be a risk that a DNACPR decision is seen as a decision not to consider other forms of treatment, not to consider escalation of care. So if a DNACPR notice is just part of a wider advance care plan, does that alleviate some of the concerns or risks in that regard?
Professor Jonathan Wyllie: So we feel that that’s a much more open process, so people know what they’re opting in and requiring and wanting, and what they’re not, as opposed to a single event being dealt with.
Counsel Inquiry: Can we look, please, at the current ReSPECT form. I think we saw, yesterday, version 2, which was, I think that was in use at the start of the pandemic –
Professor Jonathan Wyllie: It was.
Counsel Inquiry: – was that correct, but work was already underway at that point on developing version 3.
Can we look at INQ000251666_0001, please.
I think this was published in September 2020; is that correct?
Professor Jonathan Wyllie: So it was. It was ready in February – and it was aimed to roll out to test it in five Trusts, but actually, of course, that was delayed because it wasn’t an appropriate time to do that at the beginning of the pandemic.
Counsel Inquiry: Can we look at some of the key differences, perhaps, between version 2 and version 3, and we see that the first part of that form, number 2, “Shared understanding of my health and current condition”, and there are three boxes there, including “I have a legal welfare proxy in place” in the third box, and then number 3, “What matters to me in decisions about my treatment and care in an emergency”.
So, putting these sections into the first person using “I” and “me”, was a change from version 2, is that right?
Professor Jonathan Wyllie: It was. It was a change brought about by feedback from both patient and relative groups, and also clinicians.
Counsel Inquiry: So why were those changes made, what was hoped to be achieved by that?
Professor Jonathan Wyllie: Well, two things. This is a form about the person, and it’s what’s important to them. It also makes that abundantly clear, we hope, to the clinicians that are having those conversations that whilst, obviously, the clinician’s expertise is important, everybody has to understand what’s important to the patient that is taking part in this.
Counsel Inquiry: Can we see, in “What matters to me in decisions about my treatment and care in an emergency”, there’s also boxes here, “What I most value”, and “What I most fear [or] wish to avoid”. I think that was another update –
Professor Jonathan Wyllie: It was.
Counsel Inquiry: – to the form to allow patients to express both their ideas of a positive outcome and a negative outcome?
Professor Jonathan Wyllie: Absolutely, and that is, I think, useful for patients themselves, hugely beneficial for people trying to care for them, and I honestly think would be also very helpful for families to know what their loved one is thinking, and what their worst fear, and the things they most value, because that’s not always clear.
Counsel Inquiry: Thank you. Under part 4, “Clinical recommendations for emergency care and treatment”, we can see at the top there, there are three boxes: “Prioritise extending life”, or “balance extending life with comfort and valued outcomes”, or, “Prioritise comfort”. And I think that middle box was an addition, a change from version 3; rather than two alternatives there was a third option which was balancing the two; is that correct?
Professor Jonathan Wyllie: That’s absolutely correct.
Counsel Inquiry: Below that – sorry, just below the boxes, please, still at point 4, there’s an open text box for “clinical guidance on specific realistic interventions that may or may not be wanted”. You’ve explained in the witness statement that that is to ensure that there’s no conflation between a DNACPR recommendation and not having escalation of treatment. So all the potential treatment options can be identified and explained whether the patient is in favour or not.
Professor Jonathan Wyllie: Absolutely. ReSPECT came about by professionals and family members and patients realising that there was a conflation, and I’ve certainly seen that in patients’ families, that they assume a DNACPR means no care, which is, as you heard yesterday, not correct at all.
Counsel Inquiry: So we did hear yesterday that there may be sometimes a risk that clinicians might misinterpret a DNACPR, meaning this patient doesn’t want to have certainly escalation of care, but that’s, I think, a slightly different point that families may misunderstand a DNACPR form also to indicate that.
Professor Jonathan Wyllie: So I have certainly seen that. I have not witnessed the former.
Counsel Inquiry: Have you been made aware of any issues during the pandemic where clinicians seem to be misinterpreting a DNACPR form? Are you personally aware of anything like that?
Professor Jonathan Wyllie: So only through reporting in the press as everybody else, because my areas of expertise are in newborn intensive care –
Counsel Inquiry: I think you already – (overspeaking) – for this –
Professor Jonathan Wyllie: – yes, and paediatrics, so yes.
Counsel Inquiry: Yes.
Professor Jonathan Wyllie: As a neonatologist, so I wasn’t involved in that side of things in my own Trust.
Counsel Inquiry: Thank you.
We can take the form down now, thank you.
I think that that ReSPECT form has not been adopted everywhere in England – I think most but not all of the regions of England – I think currently four out of 14 Scottish Health Boards. It’s not used at all in England and Wales.
One of your recommendations is that the ReSPECT process be adopted across all four nations of the UK. Do you consider that the absence of a nationally standardised process for advanced care planning creates risks for patient care?
Professor Jonathan Wyllie: So I think it does, can I just – because – it wasn’t adopted in Wales, but it has been adopted in five out of seven English health regions, as well as those in Scotland.
So I think there is a risk of not having standardised approach. Originally, when we went into ReSPECT, the Resuscitation Council UK has a remit for guidelines teaching in terms of resuscitation. We didn’t at that time have the same remit for ReSPECT, although we recognised its, what we thought was its worth, and have supported its development. Now, I think one of the lessons out of the pandemic, I would say, is that we do need a standardised approach. I am not here to sell ReSPECT, but I think that as a country with four nations, we do need a standard approach that would work for patients wherever they are.
Counsel Inquiry: You have said that that was one of the lessons that came out of the pandemic. And you’ve also explained that the view of the Resuscitation Council UK was that it was appropriate for clinicians to have advance care planning discussions with all patients that were admitted to hospital with Covid-19.
What do you think is the importance of having conversations about advance care planning in a pandemic situation?
Professor Jonathan Wyllie: Well, one of the advantages of ReSPECT is that everything is there on our website for patients or professionals to look at. I think it’s about openness and understanding what people wish and want, and that’s differ for different people. It’s different for depending on backgrounds, your beliefs. Lots of things feed into that. So the idea of having a blanket approach will not work.
Counsel Inquiry: Do you think – we’ll come on to blanket DNACPRs in a moment, but do you think that these considerations are different in a pandemic situation?
Professor Jonathan Wyllie: So I think there are many different pressures in a pandemic, for certain, because everybody is under stress and, as you heard yesterday, our acute services and adult intensive care had never come under such pressure before, and they had never seen, with or without CPR decisions, they’d never seen the amount of death over such a short period.
Counsel Inquiry: Now, I think during the pandemic, in around March 2020, there was a lot of national media reports about blanket DNACPRs. By that, I mean solely on the basis of disability or age, rather than an individualised approach. Did the Resuscitation Council itself receive any reports of either inappropriate DNACPRs or inappropriate blanket policies about DNACPRs in healthcare settings?
Professor Jonathan Wyllie: So from two routes. One was that in a non-specific way we got questions from our resuscitation departments, some came through asking for information about that. Certainly in one instance I know of a specific – one of our members whose Trust implemented a blanket DNACPR.
Counsel Inquiry: Can I ask you a little about that, please, and I don’t want the name of the institution of the Trust or indeed the member that brought that to your attention. What was the nature of that blanket policy? Was it on the basis of disability or age?
Professor Jonathan Wyllie: So age disability and condition, I think, but I did not see the document myself.
Counsel Inquiry: As far as you’re aware, it was a written policy?
Professor Jonathan Wyllie: No, I don’t know that. I don’t know.
Counsel Inquiry: I see. Having been made aware of that, what steps did you take or the Resuscitation Council take?
Professor Jonathan Wyllie: So we put out what we felt was a very clear statement that blanket DNACPR was not an appropriate way forward and should not be implemented. That was on our website, and that – our stance on that has never changed.
It was also – it also went out to resuscitation departments with whom we were in contact, not as a document, but as a – they were notified that there was an update on our website to look at.
Counsel Inquiry: In terms of that particular Trust, was there any engagement with that trust or with NHS authorities in relation to that particular issue?
Professor Jonathan Wyllie: No.
Counsel Inquiry: Did you have any mechanism as the Resuscitation Council to deal with that?
Professor Jonathan Wyllie: No, we didn’t and if I’m brutally honest I would say that our bandwidth was probably taken up by trying to sort out the issue with guidelines and get on the same page with Public Health England.
Counsel Inquiry: Do you think that there should be a mechanism by which, if it transpires that there are these sort of inappropriate blanket policies going on at Trust level, how would that be dealt with by the appropriate NHS bodies? Is there a mechanism in place? Should there be if there isn’t?
Professor Jonathan Wyllie: So I know that within trusts if you’ve an issue there are mechanisms to raise it within your own Trust. But I think in this situation, especially in a pandemic situation, there should be almost a central clearing house for: I have an issue, this is going on, does this need looking at? That could be devolved or it could go to the different people within the NHS in different countries.
Counsel Inquiry: So that would be, to break it down nation by nation, NHS England level in England, and within the devolved administrations at government level within the bodies responsible for the NHS?
Professor Jonathan Wyllie: Somebody with responsibility for sorting out an issue which may or may not be the case because some of this is hearsay. But such a route would have been useful even to us with the guidelines to say: we have a problem here, it is not helping, can somebody please help us sort this out.
Counsel Inquiry: Thank you.
In relation to inappropriately made DNACPR notices then during the pandemic, the Inquiry has heard about various concerns. Do you think there should be a systematic review of DNACPR notices that were made during the pandemic?
Professor Jonathan Wyllie: So I don’t have – I honestly don’t have enough information to comment on that. It’s – I believe strongly that we need a better system for engaging with patients and their families in terms of what they wish. We didn’t get any – quite rightly, we didn’t get any patient-identifiable issues coming through to us because we were not the correct body to be dealing with that.
Counsel Inquiry: If a systematic review of DNACPR notices was proposed, do you know what that would look like, how that would take place? For example, are these notices usually purely on paper or are they usually part of an electronic patient record? How is easy is it to check?
Professor Jonathan Wyllie: So that it is still a problem, I can only speak for England, but we are still in various levels of digitisation and electronic patient record and depending upon where you are, it may be on paper, it may be digital, it might be both, or there might be a different system.
So I think it would be quite difficult to look at all of that across the whole of the UK but there are people better able to answer that question for certain than myself.
Counsel Inquiry: In addition to concerns that DNACPR notices were being made on an inappropriate basis, the Inquiry has also heard about poor communication or sometimes a lack entirely of communication with patients or their loved ones to explain that a DNACPR decision has been taken and the reasons for it and the effects of that.
What is your view as to how to ensure that clinicians are having these difficult conversations in the right way? Is it a training issue?
Professor Jonathan Wyllie: So I think that that has to – there is – I think that’s on a number of levels. Yes, I think there’s a training issue. Look at me: I trained a long time ago and I’m senior and yet I should be one of the people that’s having these discussions, but that doesn’t mean to say I’m good at it.
The other thing is that families have not been prepared for that kind of discussion and too many will see it as a negative thing when in actual fact it could be a wholly positive thing about understanding what somebody wants at several stages of their lives.
So I think, personally, that there is more training needed. There’s time, that people will say, all of the doctors and nurses and healthcare professionals will say, so we need time for that but, actually, I think you’ll find that patients value that hugely if you’ve got time to talk about something like that and I personally feel that we need a public health information drive to get people to think about this as families and as individuals what is important to you. Just having that conversation does not mean you are on a one-way train to anywhere but it does give you more power to decide how you want to live your life.
Counsel Inquiry: If we can come back to this point about training, I think we heard yesterday Professor Summers’ understanding was that medical students do receive training on communicating difficult decisions as part of the medical curriculum and that certainly it forms part of the continuing professional education for intensive care specialists?
Professor Jonathan Wyllie: Yes.
Counsel Inquiry: And I think also for members of the Royal College of Physicians.
Professor Jonathan Wyllie: Yes.
Counsel Inquiry: Are you aware whether there is training specifically around advance care planning, DNACPR and having those conversations either as part of initial training or continuing professional education for other specialisms?
Professor Jonathan Wyllie: So unfortunately the answer would be both yes, I am aware, and no, it isn’t a national generalised thing. So you will, again, find areas of excellent practice where that kind of training goes on, both in a mentored way but also with actors and simulation so that people get a feel for this.
What we’re talking about with the ReSPECT form isn’t just a decision, it’s a much wider thing and, therefore, one needs time and some slightly different skills in order to make that useful for the patient and for the family.
Counsel Inquiry: Do you also agree with Professor Summers that this sort of training should be embedded in medical training?
Professor Jonathan Wyllie: I absolutely think it should. And not just medical training, because I honestly believe that it should be part of nursing training. It’s actually going to be best for the patient to have the person who is most appropriate for that patient and with the best will in the world, sometimes we’re a bit scary, doctors.
Counsel Inquiry: Thank you.
We also heard yesterday how difficult it was to have those kind of conversations with family members when those conversations couldn’t take place face-to-face during the pandemic. So it was over a video call or a telephone call. Were you aware of any training that took place during the pandemic to assist clinicians or nurses in having those kind of conversations through remote means?
Professor Jonathan Wyllie: So not in a wider context. We certainly did training within our neonatal unit to use online discussions with parents and also updates for ward rounds because of some of the issues with parents not always being present on ward rounds with our intensive care babies.
So, again, I’m sure that some training went on but this was not a generalised thing.
Counsel Inquiry: Is that the kind of thing that should be perhaps embedded into pandemic planning and preparedness for the healthcare system about how to give the sort of advice or have those sort of conversations when it’s not face-to-face?
Professor Jonathan Wyllie: So I think that it is one of the lessons to learn in a different setting. I know that there was huge national learning in terms of safeguarding in that they had meetings and shared what was happening and good practice spread, and I’m not aware of that happening in terms of this area of care which might have been useful and is something that could have been done online.
Counsel Inquiry: Thank you.
We’ve already touched on some of your recommendations, Professor Wyllie, but I would like to ask about the recommendations that are made at paragraph 89(d) and (e) of Professor Lockey’s witness statement.
It’s this: Firstly:
“that everyone has access to conversations with their clinician to explore future options for treatment and care in an emergency when they may not be able to voice their own preferences. These conversations should, wherever possible, happen before they are needed, be communicated to those important to the person, and documented in a format that’s readily accessible and understood by emergency care providers.”
Then:
“The normalising of such conversations in society as a whole, both between person and clinical team, but also within the family setting to reduce the need for difficult and challenging decisions to be made when a person becomes so unwell that they cannot voice their preferences.”
I’d like to ask you how do we do that? How do we go about normalising these conversations in our society? What needs to happen and particularly what needs to happen from the healthcare sector?
Professor Jonathan Wyllie: So, well, I think from a healthcare sector point of view we need to accept that this is a vital part of care. Within my own field, I will tell trainees that, you know, we strive to do the best, we strive for success but the take home message is when someone dies you’d better get it right because everybody who survives will remember you forever. It’s ingrained, as I think we’ve seen, in stone.
So I think that we need to accept, just as you heard people yesterday and the many good clinicians do, that this is a vital area of practice that we should get right. I think that the other thing that we need to do is that we need to make those conversations part of life and that needs, I think especially in Britain, a change of a number of cultures, especially what was thought of as British culture, and that’s why I mention I think this would be an excellent long-term public health campaign to say it’s okay to talk about these things and your perspective is going to be very different to somebody who’s 23 and collapses on a football field as opposed to somebody of my age or older, but also depending upon your culture, your gender, lots of things go into that, and it’s just important that people have those conversations and feel free to have those conversations because I think that if we get the message right it will be an uplifting, freeing thing, not a frightening, terrifying thing which is how it’s come about through the pandemic.
Ms Nield: Thank you very much, Professor Wyllie.
I have no more questions.
Lady Hallett: Can I just follow up on that, Professor. Supposing everybody changed their habits in the way that you suggest, it might be a bit tricky in this country given our traditional attitude to death, but what’s concerning me are the IT systems. So I accept your advice, I go to my GP and I have this discussion and my family then know what my wishes are and then I collapse I’m taken to hospital. What are the chances of the clinician in the hospital being able to get hold of my GP records?
Professor Jonathan Wyllie: So you’re absolutely correct. I think it’s one of the massive failures of care in this country and I’m old enough to remember 20 billion went on NHS IT systems. I have no idea where that went because I haven’t seen any of it.
We just have to get better and more sensible. There’s also a need for responsibility because it is not and beyond the bounds of any of us to think that lots of people will now have alert bracelets when they have a condition that needs to be known to everybody. There are other ways of doing things as well as having a big centralised IT system. I think that we do need to think about this and I’m not the – I definitely am not the IT expert to sort it out but it does need to be sorted and I think it needs to be given thought for the whole of the UK.
Lady Hallett: Thank you very much.
Mr Weatherby.
Mr Weatherby: The points I had have been covered, thank you.
Lady Hallett: Thank you very much, Mr Weatherby.
I think those are the only questions for you. Professor Wyllie, what happened in your unit during the pandemic?
Professor Jonathan Wyllie: In the neonatal unit?
Lady Hallett: Yes.
Professor Jonathan Wyllie: From what point of view?
Lady Hallett: Well, just you’ve heard some of the stories I heard. Any particular lessons that –
Professor Jonathan Wyllie: So we too had – we had to have visiting by rota because we didn’t have isolation rooms, our babies were safely isolated but the parents were very understanding that the space that we had meant they couldn’t all come at once. We instituted a system whereby at the end of ward rounds I would do a summary and that was posted for them.
But there was – there were difficult conversations to be had both about babies and especially about some mothers and their babies. Some – and this comes again to planning, we had to discuss with some mothers who were going to go to theatre for section that they wouldn’t be waking up and early in the pandemic there was a 50% chance they would never see their baby.
Lady Hallett: I’m almost sorry I asked.
Professor Jonathan Wyllie: It’s real and they – you know, I’ve just got – everything was fine several times, everything was fine.
I think the other thing that we found that we benefited in my own Trust in that we had army doctors and nurses who had dealt with severe infections and setting up hospitals in Africa for Ebola and they were awesome.
Lady Hallett: I’m extremely grateful, Professor Wyllie. Thank you for, obviously, everything you did on the frontline during the pandemic and continue to do, by the sounds of it, and thank you for your help in coming to give evidence.
Professor Jonathan Wyllie: Thank you so much.
(The witness withdrew)
Ms Nield: My Lady, I think the next witness is to be taken by Mr Scott.
Mr Scott: My Lady, may we please call Alex Marshall.
Lady Hallett: Thank you.
Mr Alex Marshall
MR ALEX MARSHALL (affirmed).
Questions From Counsel to the Inquiry
Mr Scott: Good morning, Mr Marshall.
Mr Alex Marshall: Good morning.
Counsel Inquiry: You are giving evidence today on behalf of the Frontline Migrant Health Workers’ Group, and you yourself are president of the trade union the Independent Workers’ Union of Great Britain; is that correct?
Mr Alex Marshall: That’s correct.
Counsel Inquiry: And during the pandemic you yourself were working as a courier within the Health Service?
Mr Alex Marshall: Yes, that’s right.
Counsel Inquiry: And just to provide a bit of understanding about Frontline Migrant Healthcare Workers’ Group, or FMHWG as I will refer to them that’s a collective grouping made up of three broad organisations; is that correct?
Mr Alex Marshall: That’s correct.
Counsel Inquiry: So you have two trade unions, United Voices of the World and the Independent Workers Union of Great Britain and, then you have another group called Kanlungan who are a consortium of several Filipino and Southeast and Eastern Asian grassroots community organisations, and I think you are, to be fair, more familiar with the work of the UVW and IWGB more so than Kanlungan, is that right?
Mr Alex Marshall: Yes, that’s right.
Counsel Inquiry: If there are areas where you feel it’s a bit too detailed in terms of Kanlungan, please do feel free to say.
Mr Alex Marshall: Yes. So, yeah, I think it’s good to point out here that I am speaking on behalf of the three organisations, two of which I’m very comfortable to speak on behalf of. The other, I had the privilege of being nominated to speak on behalf of, which I’m very proud to do today. However, their experiences are something that I have had to spend time with them to try and understand, and I hope to convey that as well as possible today. But yes, so – that’s my area where I’m slightly weaker, perhaps.
Counsel Inquiry: Not a problem at all. In terms of actually, it’s not just the people who you represent, you are also speaking on behalf of those people who are in the same position as those people you represent. I think we had the evidence of Professor Bamrah who talked about workers who weren’t in the union, or weren’t aware of a union –
Mr Alex Marshall: Yes.
Counsel Inquiry: – to actually speak on behalf of their voices as well as; is that right?
Mr Alex Marshall: Yes. I mean, the work that Kanlungan, the IWGB and UBW do is we represent precarious workers, many of whom struggle to pay the bills, let alone pay for union membership or anything like that, but the work we do is a microcosm of, you know, what needs to happen across the whole of the UK, and we represent the struggles of tens of thousands, hundreds of thousands of workers, yes.
Counsel Inquiry: Those type of roles that you represent, or BNR nurses, couriers, cleaners, porters, security officers, private hire drivers, a lot of that sector of the healthcare workers; is that right?
Mr Alex Marshall: Yes. So we represent a huge part of healthcare workers, a lot of whom are deemed as less important than, you know, the primary function of, you know, doctors, nurses, but a lot of the outsourced workers, and you mentioned there about the private hire drivers who, during the course of the pandemic, were sort of brought into essentially the care sector, when their employer decided, perhaps, as a bit of a PR stunt, to offer nurses and vulnerable patients free rides in taxis. This was despite the fact they had insufficient PPE, a lot of them were clinically vulnerable, a lot of them didn’t have the choice to necessarily work, but these guys were basically reappropriated into the care sector.
Counsel Inquiry: Let me just take a step back, because what I want to ask you about was kind of the broad views of a large number of people who you represent, because yesterday the Inquiry heard oral evidence from a witness given the name MC3/W1. Presumably, the evidence of that witness is representative of cleaners across the UK working in both private and NHS hospitals; is that right?
Mr Alex Marshall: That’s right.
Counsel Inquiry: But actually, probably the evidence of W1 and the evidence of W2 contained in W2’s statement that is to be published, I mean, that’s representative of the experiences of outsourced workers, migrant workers working in all types of roles across health systems all across the UK?
Mr Alex Marshall: Yes.
Counsel Inquiry: Is that a fair description?
Mr Alex Marshall: Yes. So, I mean you will have heard some evidence from individuals, but that is representative of, as I said, you know, tens of thousands of people across the UK, and throughout the course of the pandemic, the three different organisations were presented with various situations of their members, and we responded in the best way possible. And as deeply harrowing and troubling it was to hear of these experiences, it was equally as troubling to know that these weren’t unique, these weren’t one-offs, that these were situations that thousands of people were struggling with, where their voices weren’t being heard where they were just asking for basic protections so they could do their job, so they could continue to earn, but also so they could protect people and not spread the virus.
Counsel Inquiry: There’s a lot of information that you just gave in that answer. Just a couple of words I just want to focus on.
You said that their voices weren’t being heard. Did outsourced workers, migrant workers, did they feel listened to during the pandemic?
Mr Alex Marshall: No. I mean, this was a common theme for everyone we represent, and I know way far beyond is that – these were people who, from one day to the next, you know, they went home on a day, they watched the TV, they heard announcements of lockdown, they’d seen this coming months before, you know, January they had started to see specimens, they had started to see a rise in issues of Covid, and they’d seen it coming in. But one day to the next, there would be huge announcements where people were told to stay home and they turned up the next day at work, and basically nothing had changed for them.
And A lot of these workers were making basic demands. These weren’t, you know, these were specialists in the spread of viruses or anything like that; these were frontline workers who had been doing a job and knew they were going to be particularly vulnerable, and they were asking for things to be implemented that would protect them, that would protect their families.
Also, we knew that we were going into places where there were incredibly vulnerable people. We’re talking about cancer wards, we’re talking about antenatal wards, we’re talking about old people’s homes, and we were just asking for things to be put in place to ensure that we weren’t spreading the virus more than you know it was already clearly spreading like wildfire.
Counsel Inquiry: That takes me back to one of the other points, the words you used. You talked about protected people. It’s not just about protecting yourselves, but it’s also protecting patients and others; is that right?
Mr Alex Marshall: Yes, I mean, there’s a huge responsibility on these workers. We knew that every single day you’re coming into contact with people who are unwell, who are sick, who are vulnerable, and you know we were carrying specimens of Covid to and from these places. We were going into crowded lifts. We were going in and out of wards. And we knew that we could be superspreaders if we weren’t given sufficient protections in order to try and mitigate against that.
And going back to what you asked earlier, despite the fact that so many of our members are individually raising this with management, raising this through their unions, campaigning, were being told no, time and time and time again, and relying on, you know, government orders which seemed that they had been composed to keep people safe who were staying at home, not vulnerable people who were heading straight into pick up the exact thing that people were being told to stay home and stay safe from.
Counsel Inquiry: Let’s try and boil it down. Did you, did outsourced workers, did they feel protected during the pandemic by the people they worked for?
Mr Alex Marshall: No. I think we felt protected by our colleagues, we felt protected by our unions and organisations that were there, but there was no point throughout the pandemic, through the whole duration of it, not just the relevant period, where we felt that our employers or the state, the government, were actually going the extra mile to think of how they can protect us and keep us safe.
There was clear demoralisation. It was a case of “when” people were going to contract it, not “if”, and also like how bad it would be, and people planning around, “You know, if I get it hopefully, it’s not that bad, hopefully, you know, I don’t spread it within my family, hopefully I can get back to work in time, maybe I can even work through it”.
These were the thoughts that many of the people we represent and beyond were having, because there was no point where we felt people were listening to us, or they were going the extra mile to ensure that the people heading into these incredibly dangerous situations were being looked after.
Counsel Inquiry: Do you think that a large number of your workers felt that they had any other option but to go to work?
Mr Alex Marshall: No, I think – you know, even myself, I had various times where, if the burden had been shifted from myself as an individual I would have stayed home, that I felt like it could have been some symptoms that were coming through but I didn’t feel like I had the choice, and I think so many workers due to, you know, just not having the money, not having the – good enough sick pay, not enough security in place, they just did not have the choice, and they were having to either choose to go into work and risk their lives or stay at home, potentially face destitution, and that is not a choice that any individual should be making, and that’s a choice that should have been taken care of by the employers and the government who actually had the resources to make that decision for them.
Counsel Inquiry: There are two comments in, I’m going to say your statement, it’s a statement on behalf of FMHWG that you have adopted. The first one is at paragraph 36 where it says:
“The failure to heed the warnings of frontline migrant health workers put patients, the public, and those same workers at greater risk.”
Could you expand upon what’s meant by that?
Mr Alex Marshall: Well, as I said, I mean, a lot of these workers saw the signs coming months before any official implementation of any, like, mitigation to keep people safe was put in place and the voices were being raised, the alarms were being raised and the way the panic was handled was like it started when that first lockdown started. But it didn’t. You know, people were handling swabs with their bare hands, and they were they saw this all coming. Can you repeat a part of the question?
Counsel Inquiry: Sure. I can put the statement up on screen if you like to see, if it would help to see what you actually said.
Mr Alex Marshall: Oh, yes, it was about – yes, if we had been listened to.
Counsel Inquiry: So that one is:
“Failure to heed the warnings of frontline migrant health workers put patients, the public and those same workers at greater risk.”
Mr Alex Marshall: Yes, I mean – yes, I totally agree. Obviously, this is my statement, but –
Counsel Inquiry: Well, it’s a statement you have adopted, so not your words.
Mr Alex Marshall: But no, no, it’s – we were crying out for this. We were talking about being superspreaders, we were asking for the implementation of basic things that would keep more people safe. These were completely ignored and is believe as a result of it this led to more deaths, this led to more hospitalities (sic), this – it was a failure to listen to the very people who were experts in the situation and how to mitigate against it.
Counsel Inquiry: Because you say that it seems like it felt that the pandemic started when lockdown happened. You’re talking about these warnings. When were these warnings coming in roughly? Was it January, February, early March?
Mr Alex Marshall: Well, I know that my colleagues, when I was working as a medical courier, we were starting to see swabs with yellow labels that said “Covid” from, like, January. We were starting to see it come in then. We were asking and saying this isn’t safe. I remember some of my colleagues, they went and picked up a swab of Covid that the zip bag had been left open and this was a guy who had a young child at home, he had a young family and he came back and he approached me and said, “This isn’t right, I’m going to go home, I’m going to kill my family and no-one seems to care.” They want us to walk off the job and we were pushing our company to say, you know, “What’s going on?” And the response was, you know, we’ll wait for advice, it’s wait and see.
Where I was working was a private medical firm. This is a place that makes huge amounts of profits from being experts in medical diagnostics. This is a place that you would think would have not only the PPE that’s used for the lab staff and these protections but would have the kind of understanding of situations to get a little bit ahead of the game. However, due to the fact that we were outsourced workers, we were gig economy workers, there just seemed to be no thought for this section of the workforce as to how we can keep these guys safe, and any of our complaints were made to feel like we were just being annoying, like we were just asking for too much, like they just wanted to silence us. And we saw this coming and we were raising the alarm.
But, you know, these are situations that so many of these workers are putting up with day to day. There are power dynamics at play whether you’re on an unstable visa or if you’re an outsourced working or you are working in the gig economy that we’re crying out like, look, all of these organisations are dealing with these issues on a daily basis. The pandemic was pouring petrol on a blazing inferno that’s already going on for a lot of our members.
So we’re constantly raising the alarm. We definitely – our voices got louder during the pandemic but, as I said, we made some basic demands as to things that could be done to keep not only us safe but also to keep the members of the public, the vulnerable patients we were coming into contact, and systematically we were told: no, no, no.
That’s why this way of employing people, the way of treating people, the power dynamics, the structural racism, the structural inequalities, that are, you know, very much on display is a public health issue.
Counsel Inquiry: Let’s – who do you complain to? If you are an outsourced worker or a migrant worker for example, because I think you say that these issues arise for both of those kind of groups, those very broad groups; is that right?
Mr Alex Marshall: Yes, definitely.
Counsel Inquiry: If you are working for a company which is then contracting you to a private hospital, an NHS hospital, who do you complain to, who do you talk to?
Mr Alex Marshall: So I think it’s really important to understand that as an outsourced worker there are these power dynamics at play and a precarity at play from being a migrant worker as well, from being on a precarious visa, or English not being your first language, or the fact you have dependents back at home that you are having to support, that really make you very scared to speak out on an individual basis. Also the nature of outsourcing and the visa system has decimated the ability to collectivise and build unions, it’s very hard doing what we are doing, the three organisations to build this collective voice –
Lady Hallett: I’m sorry to – I am sorry to interrupt. It’s just that I do have limited powers, Mr Marshall, as I’m sure you appreciate. I can’t change society and I just think maybe we are straying beyond what I can and can’t find or recommend.
Mr Scott: If I can bring you back to the question which is about who you complain to within that healthcare system.
Mr Alex Marshall: Yes, I just wanted to make that point because you can complain to a manager but it’s very difficult to come forward and make that complaint. You go to your union, you collectivise, and then that collective voice makes it more of a kind of prominent, like, complaint but this is how you complain. If you’re an outsourced worker you are told to go and complain to the outsourcing company, you know, you don’t even complain to the manager who actually oversees the work you are doing in the workplace. So then this gets completely disconnected and by the time the complaint is heard, it’s just not even responded to or something’s been lost in communication and they don’t do anything about it.
Counsel Inquiry: So in terms of, then, access to things like PPE, again, somebody in that same situation who provides the PPE? Is it the hospital? Is it the Trust or is it the company?
Mr Alex Marshall: So I think in a lot of the situations it was coming through the hospitals. However, the kind of in-house workers were prioritised so they would get primary access to the PPE and then the outsourced workers would then get limited access and what we also saw –
Counsel Inquiry: Can I just ask why?
Mr Alex Marshall: Why?
Counsel Inquiry: Yes. Why do you think that was?
Mr Alex Marshall: Why was it prioritised?
Counsel Inquiry: Yes.
Mr Alex Marshall: Because they clearly thought these workers were more important, that they were more so their responsibility than the people who were clearly also integral to the business.
Counsel Inquiry: Even if people had been redeployed into what would be perceived to be higher risk settings?
Mr Alex Marshall: Yes, well, that’s exactly what happened. We’ve seen the situation of cleaners, we’ve seen the situation of couriers, and nurses who were given secondary access to PPE despite the fact that they were not only going into incredibly dangerous places but also were then going into loads of different rooms, loads of different hospitals, so had the potential to be superspreaders.
Counsel Inquiry: One of the aspects in the statement is talking about:
“In April 2020 Kanlungan organised a meeting with NHS managers …”
It’s paragraph 57. I don’t know if it’s something you are entirely familiar with. This was about NHS managers verbally acknowledging the disproportionate impact on Filipino staff members with regard to the overrepresentation of nurses in infection and also assignment to high-risk wards.
So it was apparent, I know you said it was apparent prior to March, but it was apparent in April about what the impact was on migrant workers, minority ethnic workers, outsourced workers, and that was being raised. Did it ever feel to those workers like anything actually changed?
Mr Alex Marshall: No, I don’t believe it did and for a lot of these workers, again, because of their visa status and, you know, that fear of speaking out because of the precarity of the nature in which they’re in this country and their employment they felt that they were pushed into really dangerous situations where they weren’t able to push back, where people in more stable working conditions were actually able to say “no” and that definitely led to this disproportionate number of people dying.
Counsel Inquiry: There is one question that we have been asked to ask. It’s in relation to the precarity of the workers. From your members’ experience did the imposition of no recourse to public funds conditions on healthcare workers’ immigration status exacerbate the impact of Long Covid?
Mr Alex Marshall: Well, I mean, people were forced back into work before they were able to take the appropriate rest because they were unable to access any support that was needed. Like, people were having to work through when they probably had symptoms which were worsening. So I think, you know, access to or having no access to it certainly meant that, you know, it was definitely a contributing factor to this.
Counsel Inquiry: Was there a feeling amongst outsourced workers or migrant works that the availability of PPE within a hospital, whether private of NHS hospital, was that driving supply to workers who were actually working in that hospital or was it just actually about allocation of roles?
Mr Alex Marshall: So what do you mean?
Counsel Inquiry: Was it supply that the hospitals actually had available to them that was then driving about how it was handed out or was it more a guidance and a principle point?
Mr Alex Marshall: I think there was an issue of supply. I think that was widely known. But when they did come by supply it didn’t seem like there was any, you know, forward thinking as to keep getting it in, but it also felt like, you know, the in-house staff were given a better quality of PPE, they were given an abundance of it and many of our workers were given sort of disposable masks that they were told to reuse. They were given gloves that they were wearing throughout the day when they are meant to be disposable gloves.
We were given very little instruction as to how to safely use PPE. Even though it was inadequate PPE, we were also given insufficient instruction. So as I said, people were wearing gloves all day long to keep their hands clean of germs. However, they were then touching things, picking up specimens, just using them as – so there was definitely limited supplies given to people. We had cases where people were given a little 10 ml bottle, or whatever, a really small bottle of hand sanitiser, and told to kind of make sure it lasts. How are you meant to make sure its lasts when you are going in and out of wards where you are meant to be hand sanitising every single time you touch something?
Disposable masks, where you go in, you try and get more, and you were told you were being greedy by asking for more. If you questioned the masks that were being used and said, “Shouldn’t we be using these?”, you were told to be happy that you’ve got anything. And that was the kind of discourse that was given to many of our members who dared to ask or dared to question.
What we also saw was people who did question what they were given were sometimes faced with punitive measures, that they were called trouble makers, they were told they were scaring people, they were told that they shouldn’t be speaking out and they were moved into places to keep them out of the way or sent into more dangerous situations. So we actually saw, you know, punitive measures being exercised when people dared to question the kind of inadequate protections that they were given.
Counsel Inquiry: And again, everything that you have just been covering there, that’s being felt by lots of different workers in lots of different roles cross the entirety of the country, is that right?
Mr Alex Marshall: Well, that’s the whole of the UK and beyond, I’m sure, but this is a dynamic that was playing out. As I said at the beginning, this was not a unique experience to certain individuals, this was a dynamic that was playing out for outsourced precarious migrant workers all over the UK.
Mr Scott: My Lady, I am about to move on to an another topic. Is that a convenient moment to have our morning break?
Lady Hallett: Yes, certainly. Half past.
(11.13 am)
(A short break)
(11.29 am)
Lady Hallett: I hope you were warned that we take the breaks that we take, Mr Marshall.
Mr Scott: Mr Marshall, two very discrete topics before I ask you about recommendations and lessons learned.
As far as you’re aware, were there any risk assessments done, or any kind of formal redeployment processes when workers were redeployed into differed working areas?
Mr Alex Marshall: Yes. There were.
Counsel Inquiry: And how effective were those risk assessments and processes?
Mr Alex Marshall: Oh, just in terms – sorry, I –
Counsel Inquiry: Sorry, it was about the risk assessments done rather than when they would be deployed.
Mr Alex Marshall: Yes. Yes, I think risk assessments were largely like insufficient, and I think a lot of the times workers, as you said before, in terms of raising complaints, we had people who were reporting workplaces to the HSE and very often they weren’t responded to. When risk assessments did take place in various workplaces where we have members, they were done quite late. You know, months into the pandemic, risk assessments were made that should have been done in those months leading up to the first lockdown. Risk assessments don’t take long; you can put basic things in place while you continue to assess the situation, but a lot of the time these risk assessments were made when we were very much in the pandemic, when people were getting infected, when people were dying.
Counsel Inquiry: Did it feel like anything changed afterwards, even if what had been done is different to –
Mr Alex Marshall: Yeah –
Counsel Inquiry: – to whether there was an output from it?
Mr Alex Marshall: Yes, I think, you know, changes were made, but as I said before, a lot of these changes seemed to be the bare minimum, as opposed to going the extra mile for these workers. So, you know, social distancing was put in place, there were certain systems that were put in place, but a lot of it seemed too little too late, but also just too little in general, that wasn’t actually there to protect the workers but was just more to show that employers were doing what was, you know, asked of them, rather than what they should be doing.
Counsel Inquiry: Moving now to lessons learned and recommendations, you had heard her Ladyship earlier on in terms of the limits of what she is able to do.
In terms of lessons learned and recommendations, what would you say are the main lessons learned from the perspective of outsourced workers and migrant workers?
Mr Alex Marshall: Yes, so I mean outsourcing within the health sector should be ended. Heading towards another pandemic, if one does happen, or any other crisis like this, it was laid bare on how this inequality within the workplace becomes a public issue and actually contributes to a crisis rather than helps with efficiencies or savings or anything like that. So we need an end to outsourcing, and for everyone to have parity, everyone should have access to the same rights, so they able to take the appropriate steps.
Counsel Inquiry: But in terms of making sure your voices can be heard?
Mr Alex Marshall: In terms voices being heard.
Counsel Inquiry: Do you have any recommendations that you would like her Ladyship to consider to make sure there’s a better – (overspeaking) – outsourced?
Mr Alex Marshall: Yeah, so I think that also, yeah, in the build up, I think it’s great that we’re able to have our voices heard now. Obviously, this is retrospective, but I think workers’ voices need to be at the centre of – you know, we need to be listening to the workers who are on the frontline, who are crying out for things to be implemented and I think that always needs to be that centre of making any changes. So as we reflect on what happened, we need to go deeper and to talk to workers and ensure that the things they are crying out for, you know, enough money to be able to take time off work, the inequality they are facing on a daily basis, this needs to be considered and acted on, not just left to be something that people are still being subjected to today.
Mr Scott: Thank you, Mr Marshall.
My Lady, I have no further questions.
Lady Hallett: No, I think there’s some questions.
Mr Weatherby.
Questions From Mr Weatherby KC
Mr Weatherby: Thank you very much.
Mr Marshall, I have just a few questions on behalf of the Covid Bereaved Families for Justice UK, and they are all about the effect of the hostile environment policy on migrant workers, and they are based around some evidence. So a study and a report which I think you’ve had the opportunity of looking at in the last day or two, certainly.
It’s the Kanlungan consortium and RAPAR report. Obviously, you told us about Kanlungan. Now, RAPAR is a well known refugee and asylum research organisation based in Manchester, I think. They conducted a study of Filipino workers in the context of Covid-19 between May and June 2020, and we have the report. I don’t think we’ll need to refer to it, but I’m going to give reference just for the record, which is INQ000235265, and for anybody who wants to look at it, it’s really page 4 I’m going to concentrate on.
The report looked at the impact of the hostile environment policies on migrant workers in the context of Covid-19. Hostile environment was a government policy from at least 2012, and that was directed at undocumented migrants in the UK, yes? So the first question I want to ask is that the evidence about in this study was based around a group of Filipino workers, and of course there are many Filipino workers within the healthcare sector, but is it your experience, and from your knowledge of your union members and the people you work with, that this study is reflective of the experience of people with precarious immigration status as a whole within the healthcare sector?
Mr Alex Marshall: Yes, certainly.
Mr Weatherby KC: So the study itself – and I’m going to deal with it in very broad outline because I don’t want to take too much time up here – but in what ways did the hostile environment policies lead to workers being faced with a choice in terms of, for example, risking getting the virus or becoming destitute, being not in employment? In what ways did the hostile environment policies lead to that dilemma?
Mr Alex Marshall: So the hostile environment policies feeds into the people that I’m representing here today, both people on the precarious visas coming from the Philippines who have their work tied to their visas, and if they do push back, they can find themselves fired and they have only two months to then try and find different work. So the risks of pushing. Back.
Also, outsourced work, the gig economy, is heavily reliant on migrants who are, like, filtered into this. But the hostile environment contributes – sorry, can you just repeat the end of the question there?
Mr Weatherby KC: Yes, I was just asking how these policies impacted on workers with precarious immigration status, but the words the report used on page 4 is that they were forced into “informal exploitative employment” and “no work no pay”.
Mr Alex Marshall: Yeah.
Mr Weatherby KC: So is one of the effects of those policies that migrant workers with precarious status were required to work when otherwise they might have –
Mr Alex Marshall: Yes, definitely. Almost every worker, I’m speaking on behalf of predominantly migrant workers who are subjected to these policies, are – they don’t have the security that a lot of in-house workers do, a lot of employees do, and as a result of this they were forced to continually make these choices individually whether they stay home and stay safe and recover from whatever illness they have, or they go to work and get paid. And this was something that individuals were having to make on a daily basis where they literally did not have – you know, I put two choices there, but they are not really choices, are they? Every time someone is going to go to work and continue to earn over staying home and – their existence is so hand to mouth a lot of people cannot quite comprehend that literally missing a day’s work you’re making up for it weeks, months after that happening.
Mr Weatherby KC: And that applied to outsourced workers generally but particularly where people have precarious immigration status and they would be scared that they would lose, their employment as well?
Mr Alex Marshall: Yes. You miss a day’s work, your manager is chasing you, a lot of the time they don’t trust you, and this can lead to you losing your job, and when you’ve got people who are reliant on you back in the country that you might have left, that your visa is reliant on it, it’s not a choice, you have to just continue to –
Mr Weatherby KC: And I think the report went on to say that additional to those points that migrants with precarious status were pushed into overcrowded housing and they had a fear and isolation which prevented them accessing support and led to mental health problems; is that right?
Mr Alex Marshall: Yes, I mean, people were – they had limited choices, they were forced into situations, be that housing, be that more dangerous situations at work, because they just did not feel they could push back and have their voices heard.
Mr Weatherby KC: That’s the employment side and the precarious nature of that, but in terms of migrant workers accessing healthcare themselves, how did these policies impact that access?
Mr Alex Marshall: I think what’s really important to understand is also – the hostile environment is so deeply entrenched in the society that we live in that you even have situations with people who can access these resources who are so scared to access them because they think they are unwelcome, they think they are going to be deported, they think – that they are just choosing not to because they don’t feel welcome, because they fear repercussions.
So that’s how deeply entrenched it is, let alone for people who might well be undocumented, who might have no recourse to public funds, they just are so terrified that –
Mr Weatherby KC: Yes, and I think those are the two points that the report highlighted, aren’t they, that there was a fear of being reported to immigration authorities, on the one hand, and there were also prohibitive charges for treatment on the other?
Mr Alex Marshall: Yes.
Mr Weatherby KC: Thank you very much.
Mr Alex Marshall: But also, as a result, we had organisations like Kanlungan who were having to set up, like, these safe spaces where people could access vaccination, where people could access support. The IWGB and UBW also had to set up similar spaces which people could access PPE because people saw them as a safe space where they felt welcome, whereas across the rest of society they are, on the one hand, made to feel unwelcome. However, they had been applauded every evening for the service they were providing the population to counter a pandemic that was spreading and killing so many people.
Mr Weatherby: Thank you, Mr Marshall.
Lady Hallett: Thank you, Mr Weatherby.
Mr Marshall, that completes the questions we have for you. You are a superb advocate for your cause. You spoke very eloquently about the horrid problems that people you represent suffered. So thank you very much.
Mr Alex Marshall: Thanks very much.
(The witness withdrew)
Mr Mills: My Lady, may I call Mr Matthew Stringer who can be sworn.
Mr Matthew Stringer
MR MATTHEW STRINGER (sworn).
Lady Hallett: I hope we haven’t kept you waiting too long.
Mr Matthew Stringer: You are early in fact.
Questions From Counsel to the Inquiry
Mr Mills: Your full name, please.
Mr Matthew Stringer: Matthew Stringer.
Counsel Inquiry: Mr Stringer, you are the chief executive officer of the Royal National Institute of Blind People. Is that a role you have held since May 2019?
Mr Matthew Stringer: That’s right, yes.
Counsel Inquiry: You have provided a statement to the Inquiry representing the collective experience of the members of the Disability Charities Consortium – that’s the DCC?
Mr Matthew Stringer: Yes.
Counsel Inquiry: And for reference, that statement is INQ000235594.
Introduce us, please, Mr Stringer to the DCC. Which charities is it made up of and what are its aims?
Mr Matthew Stringer: It’s made up of nine charities, so it is RNIB, the RNID, the Royal National Institute for Deaf People, Sense, Scope, the National Autistic Society, Leonard Cheshire, Mencap, Mind, and the Business Disability Forum, and we’ve come together as a group for about 15 years, meaningfully, to provide a sort of group that supports the 16 million disabled people in the UK and that group with the weight we bring collectively, engages with ministers, influences national strategy on disability and, clearly, you know, has engaged across the Health Service and other related bodies over 15 years.
Counsel Inquiry: Can we start with some basics. First, definitions. Under the Equality Act do we define disability in this way: a person has a disability if they have a physical or mental impairment which has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities?
Mr Matthew Stringer: Yes, that’s right.
Counsel Inquiry: Building on that, how do we define when a person has complex disabilities?
Mr Matthew Stringer: I mean, complex disabilities would be a number of disabilities coming together. I mean, clearly we represent people who have a particular disability, so my own charity supports people who are blind and visually, that’s about 2 million people in the UK. Clearly some of those people have other disabilities, they might be learning disabilities, people who are deaf as well as blind, and so you get the point that there are layers of disability that can build up that make someone’s life more complex than just having one singular disability.
Counsel Inquiry: Next, please, the key figures. You have told us there are around 16 million disabled people in the UK. Approximately that is one in how many of us?
Mr Matthew Stringer: It’s about 20% of the population, if you take we’re about 70 million, 16 million is about one in five of the population.
Counsel Inquiry: Now, of that 16 million, is it right that 1.6 million have complex disabilities according to the definition you’ve just shared?
Mr Matthew Stringer: Yes, I think so. I mean, if you just break down some of the statistics in terms of the number of people that we support, how that breaks down, there’s 1.6 million with complex disabilities. We think there’s 1.5 million with a learning disability. As I said, there’s 2 million people who have some sort of visual impairment. There’s 12 million who have some sort of hearing loss, actually. 700,000 people have autism. So that 16 million, you can see, breaks down plus a number of different disability characteristics and there’s obviously some overlap when we go back to the point about complexity.
Counsel Inquiry: Now, with those figures in mind, can we move to another set of figures in respect of mortality amongst disabled people during the pandemic. At your paragraph 14 you refer to data published by the Office for National Statistics which examined deaths from Covid-19 between January and November 2020.
Help us, Mr Stringer, with what that data revealed.
Mr Matthew Stringer: Well, I think it’s pretty shameful data, really, that talked to the fact that of the 50,000 deaths between January and November of 2020, 30,000 of the 50,000 were disabled people. So that is 60% of the total when, as we’ve just been speaking about, disabled people represent 20% of the UK population. So a very, very high disproportionate impact on disabled people through the time we’re talking about, January to November 2020.
Counsel Inquiry: You go on at your paragraph 15 to refer to further data published by the ONS in November 2022 in respect of working age people with hearing and visual impairments. What did that tell us, please?
Mr Matthew Stringer: Well, it told us that working age people with a hearing and visual impairment were 12 times more likely to die than those that didn’t have hearing and visual impairment. So, again, a very disproportionate number compared to what you would expect.
Counsel Inquiry: Then finally this. At paragraph 17, you refer to data published by the Learning Disability Mortality Review. What do we learn from that?
Mr Matthew Stringer: Well, again, a disproportionate outcome. So people who have a learning disability were six times more likely to die and that rose to 30 times more likely for adults between 18 and 34.
Counsel Inquiry: Now, when we are considering these figures should we or should we not be thinking about other factors that might have contributed to these mortality rates, for example, that disabled people are on average older, that they experience higher levels of comorbidities, socio-economic deprivation, and the barriers they face in accessing care?
Mr Matthew Stringer: Yes, potentially but I think one of the things we feel as the DCC group is we haven’t done enough analysis of these headline numbers to really understand what is driving this disproportionate outcome. There have been some further studies done but even now we’re sitting here not really getting under the skin of why there were 60% of people that died in that first year of Covid were disabled versus the 20% proportion that they represent in the population. All the things you mentioned clearly would play a part but it’s an easy thing to say, well, that’s the reason why we can accept that disproportionality.
We don’t think that’s right. That’s an easy thing to assume but we think that’s too easy to assume and we will be advocating for further analysis to be done so we can really get under the skin of that data and then do something about the lessons that come from it and that is an incomplete picture at the moment.
Counsel Inquiry: Do you see this as being reflective of wider, more fundamental issues with the collection of data about disabled people more generally?
Mr Matthew Stringer: Well, I think, you know, clearly people have been computing data through Covid and really trying to get to understand it. I think through the first year this information wasn’t really known. It really became – first mortality data came out in June 2020 and then we got some further data in February 2021, so almost a year into Covid before I think we really started to see, you know, this direction of travel that we’ve been talking about over the last few minutes.
I think, you know, as I say, since then there’s been further things done. There’s been, you know, information sought on the government’s national autism strategy for example, which I think again has some flaws in it. I think the fundamental point remains that there is work to be done to really understand that data at a more detailed granular level to really understand some of the intersectionality issues that you have hinted at in your questions you know to really give us much more insight into what really happen and then do something about it.
Counsel Inquiry: We haven’t been able to refer this morning to mortality data for autistic people. Is that because we don’t have reliable data?
Mr Matthew Stringer: Well, again, I think the headline number of deaths that I’ve talked about being able to break that down in a way that really understands what caused it is a gap in our knowledge. There’s been a government national autism strategy from 2021, it’s ongoing, the National Autistic Society would say to us that actually the way the government is collecting that data and did collect it through the pandemic was collecting it on people who were in regulated CQC registered services, which clearly is one piece of data which is valid but is not the complete picture which needed to include people of autism who were living at home and in other locations.
So, again, it makes my point that the data collection we’ve had has not necessarily been as full as it should have been whether it’s on autism or the general picture.
Counsel Inquiry: Yes, and in fact in your statement you say there is no means of recording autism on death certificates and it is not regularly recorded in hospital data?
Mr Matthew Stringer: Yes, that’s right, yes.
Counsel Inquiry: Turning next, please, to the DCC’s concerns about the care received by disabled people during the pandemic.
Mr Matthew Stringer: Yes.
Counsel Inquiry: And I’ll start with this, please: reasonable adjustments in healthcare settings for those with disabilities.
Is it right that one of the DCC’s primary concerns is that the restrictions in respect of hospital visiting had a disproportionate impact on disabled people because they needed someone in hospital with them?
Mr Matthew Stringer: Yes, I think that’s right. I think there’s two key points maybe to draw out your question.
The first one is the guidance that came out initially in April 2020 and then subsequently was updated was quite high level. It was quite blunt. It didn’t have disabled people’s input into shaping it in a much more nuanced way.
Counsel Inquiry: I wonder, Mr Stringer, if we might look at the guidance so you can make sure answer whole.
Can we please go to INQ000000132.
This is 8 April guidance. We have a list of the only exceptional circumstances where one visitor, an immediate family member or carer, will be permitted to visit are below. At the final bullet we read:
“You are supporting someone with a mental health issue such as dementia, a learning disability or autism, where not being present would cause the patient to be distressed.”
Mr Matthew Stringer: Yes. So as I was just saying before, I think these four bullet points, and you have drawn the attention to the last one, are quite high level. Clearly that last bullet point doesn’t cover everybody who might have a disability, it doesn’t talk about people who have Down’s syndrome, it doesn’t talk about people who are deaf, people who are blind. So it’s quite a blunt instrument which leaves as much open to interpretation by the people who are trying to apply this as it does help them.
So this was not, you know, a very valuable document or helpful document, in a sense. I can understand what they were trying to do. It was trying to be positive in showing that people needed to be accompanied. It obviously, you know, was alert to that need. What it didn’t do was go into enough detail, you know, to both support people with different disabilities but also to give the Health Service the appropriate sort of advice and input so they could do the right thing in supporting patients.
Counsel Inquiry: Are you able to give us an example of the further detailed support that you would have liked to have seen in this guidance?
Mr Matthew Stringer: I can maybe just give some examples of some of the beneficiaries that we’ve seen across the DCC group.
So, you know, there was a blind lady who was of full mental faculty who was going through a medical procedure which was nothing to do with Covid. She was denied her partner being there with her and her partner, husband, had to take out a sort of power of attorney to accompany his wife to that health visit or that health process, you know, because the hospital wouldn’t allow him to accompany her which we would have said should have been allowed by this sort of advice.
There’s a number of examples we have across the different charities whereby people were not accompanied in a way we would have advocated and probably the guidance should have allowed through 2020.
Counsel Inquiry: Yes.
Can we go now to INQ000330865.
This is the 5 June 2020 guidance which replaced the 8 April guidance. It’s right, isn’t it, that the paragraph we have just read together, that final bullet point, doesn’t appear in the June guidance?
Mr Matthew Stringer: No, it doesn’t.
Counsel Inquiry: What we do have is this, on page 2, please, penultimate bullet point:
“Other people who are in attendance to support the needs of the patient, for example a familiar carer/supporter/personal assistant, should not be counted as an additional visitor. Patients may be accompanied where appropriate and necessary to assist with the patient’s communication and/or to meet the patient’s health or social care needs.”
Mr Stringer, how does the language used here compare to that used in the April 2020 version?
Mr Matthew Stringer: Well, I mean, clearly it is fuller and I think has taken probably reference back to April that that was probably quite, quite quick and quite high level. So there was more thought and detail in here.
I still think we would say this updated version two months on was not created with enough input from disabled people who were able to provide that nuance and that insight that I mentioned earlier to make it a much more sort of thoughtful and relevant document.
I think one of the problems is that guidance, you know, certainly early in Covid, was issued at quite a high level, quite a blanket level, clearly it had to be done quite quickly, we understand that, but A, it didn’t, as I say, address some of the nuance and the difference that was required and also for those people trying to apply it, left it quite uncertain, quite what you had to do in certain situations when different types of disabled patients might have presented themselves.
So this would be a move on after two months but we don’t think it did the full job that was required.
Lady Hallett: Can I just ask in relation to that, you just mentioned a point I was thinking about: the recipient of this guidance.
Mr Matthew Stringer: Yes.
Lady Hallett: The more you try to broaden it to include the people you ought to be including, the harder it gets for the recipient of the guidance to interpret it, doesn’t it? Isn’t that one of the problems with making it …
Mr Matthew Stringer: Yes, it does. When you take that argument to its final conclusion, you then say, well, we don’t support disabled people and the difference that they present. It’s too difficult. And we will believe that’s not an acceptable position. We think that the Health Service should be able to support people of different disabilities.
Mr Mills: Were you or your organisation made aware of patients facing difficulties in bringing a supporter or a carer into hospital after the June 2020 guidance was issued?
Mr Matthew Stringer: Yes, as I said, I think the example I gave was after June with the lady who was going through an experience and had to get her husband to take a power of attorney so he could attend. We have another example of a lady going through, who was pregnant – one of our employees, actually – who was blind who was going through pregnancy, and again had to do that in isolation without the support of partner and family. So, yes, I mean, there are examples of that.
Counsel Inquiry: Next please, remote care. A reference to one or two examples. Can you help us with the ways in which a phone or a video consultation is not going to be suitable for someone with a disability?
Mr Matthew Stringer: I mean, I think you know health processes moved to being remote from – well, some moved to being remote from being face-to-face. I mean, it is a double-edged sword. There were some people who were able to use technology, would have welcomed the ability to do it remotely because they didn’t have to travel, they wouldn’t then get exposed to Covid, so we’re not saying that every remote procedure was a problem, that would be the wrong thing to assert.
However, clearly, for people who are – you know, people with autism who are used to a familiar process, they are used to familiar individuals, they are used to a familiar setting, for that to be moved to something which was sort of two-dimensional, impersonal, was clearly a challenge. And so you can see how, for many people who are used to a physical and got comfort from a physical interaction to be moved to something which is remote, would be challenging.
Counsel Inquiry: With one eye on the future, could remote care be made fully inclusive such that no individuals with the disabilities we have discussed would be unable to access it?
Mr Matthew Stringer: I think it needs to be a mixed position. As I said, I think, you know, we can’t deny the march of technology, you know, for reasons of efficiency and appropriateness, you know, certain remote processes we think are a good thing actually, and, as I say, patients welcomed them.
I think the thing is to be able to provide the appropriate process for the individual and be able to have that for the individual, and see the individual as an individual who can choose between having a physical, you know, sort of personal experience or being happy to rely on something that’s more remote where technology is used.
And I think, you know, it’s that ability to be able to offer that sort of bespoke service, that bespoke relevant service to each individual patient, I think, is a critical answer to your question as opposed to seeing it as a binary thing as between remote versus physical only.
Counsel Inquiry: Yes, so it may be that there will always need to be a place for face-to-face consultation?
Mr Matthew Stringer: Yes, I think – you know, as I say, a number of people, people with autism, people who are deaf, who were taking, you know, appropriate comfort and benefit from visual clues which you get much more when you are face-to-face with someone, you know, there are many people who would, for those reasons, want to have a physical interaction, and would see an in-person or remote interaction as being very much of second best and potentially quite worrying and quite challenging.
So, yes, I mean, I think we absolutely need to make sure that physical approach is still part of our Health Service provision, yes.
Counsel Inquiry: The move to remote care came alongside a reduction in routine medical appointments?
Mr Matthew Stringer: Yes.
Counsel Inquiry: Can you help us, please, how were disabled people particularly affected by this?
Mr Matthew Stringer: Well, I think, you know, there was the – you know, I think, first of all, disabled people, you know, found it much more difficult to navigate society in Covid, you know, if you are blind and you are going out in society, you can’t be guided because of social distancing rules, you are worried about social distancing, you don’t necessarily have the technology to rely on to move to a remote process. You know, people were very anxious about going out, and provision, you know, was restricted. So we’ve seen, across all our beneficiaries, you know a massive fall-off in the number of people who were actively taking on – or undergoing their routine health appointments, partly because they didn’t feel confident to go out and do it, and partly because the Health Service was not able offer those.
If I maybe just put some stats to that just to make the point.
From an eye health perspective, we saw a 23% reduction in eye tests from 2020 to 2019, there was a 28% drop off in referrals to ophthalmology, there was an up to 40% reduction in ophthalmology outpatients, and there was 235,000 necessary eye surgeries were missed or delayed in 2020. So you can see that people did not feel confident to go at and engage with a health appointment, and actually the provision of that was reduced as well.
The RNID, you know, surveyed 384 respondents since September 2020, and people who were deaf or had some sort hearing loss, 60% were put off seeking medical advice, and ONS put a report out in September 2020, talking to 47% of people with hearing impairment had access to healthcare impacted.
So I think it was a sort of a bit of a pincer movement here, really, that the provision of non-Covid health declined, reduced, and people’s confidence to go and engage with it also reduced.
Lady Hallett: Could you slow down a little.
Mr Matthew Stringer: Yes. No problem.
Mr Mills: Can I move next, please, to the concerns about the use of DNACPR notices. Is it fair to set out, in headline terms, the DCC’s concerns as being threefold? First, that DNACPR notices were being issued in a blanket fashion to fit and healthy disabled people of working age; second, often without consultation with either the patient or, if the patient lacked capacity, their family; and, third, that there were instances of DNACPR notices being confused with do not treat notices.
Mr Matthew Stringer: I mean, the answer is yes to all those three questions, let me try and embellish. I think, first of all – and Mencap have spoken very well to this in their “My Health My Life” report from December 2020 – I think there was some confused guidance, so NICE issued guidance on 20 March, and then there was a two-week period where there was a lot of input into that because we felt that guidance sort of encouraged or opened the door to that slightly more blanket approach. And that was sort of rowed back on 3 April, so about two weeks later. But we felt that, you know, the sort of cat was out of the bag, in essence, or the horse had bolted over those two weeks with that guidance sort of permeating into the Health Service, and people then you know taking that encouragement to maybe use DNACPR notices in a slightly more, sort of, to use your word, blanket fashion. And we’ve seen evidence of that from, you know, our membership, in essence.
There was evidence from Mencap of a GP applying blanket notices to the people then under the care of that Mencap institution, and we’ve seen individuals go through hospital when their family and carers were not aware that a DNACPR had been applied to that individual.
So, you know, we can see that everything you’ve said in your question, you know, was evident through that period and, as I say, not necessarily helped by the guidance that went out on the 20th which, whilst it was rescinded on 3 April, still left two weeks whereby some unfortunate guidance did permeate the Health Service.
Counsel Inquiry: Let’s have a look at the letter of 3 April. Please can we have on screen INQ000216427. Thank you.
First paragraph:
“We are writing to ensure that there is clarity in relation to the use of the Clinical Frailty Scale … and the use of … (DNACPR) with younger patients, those with a stable long term physical need, learning disability or autism.”
Pausing there, Mr Stringer only to signpost that the use of the Clinical Frailty Scale will be addressed in detail with other witnesses in due course.
Turning to page 2, please, we have in the final paragraph:
“It is imperative that decisions regarding appropriateness of admission to hospital and for assessment and treatment for people with learning disabilities and/or autism are made on an individual basis and in consultation with their family and/or paid carers, taking into account the person’s usual physical health, the severity of any co-existing conditions and their frailty at the time of examination. Treatment decisions should not be made on the basis of the presence of learning disability and/or autism alone.”
I think you’d said – you’d used the phrase the cat was already out of the bag. Can you help us: in your view, why did this letter not adequately address the concerns that were surrounding the use of DNACPR notices at that time?
Mr Matthew Stringer: Well, I think there was a simple point that, you know, advice having been promulgated two weeks before, it was very difficult to sort of get the genie back in the bottle two weeks later, whatever that advice had been. So that had obviously permeated through the Health Service, and it was very difficult to think you could completely rescind that advice and replace it. I think that’s a simple point.
I think, again, these are complex things, DNACPRs, and I think there is a complexity to this which I think is the underlying problem here where, you know, everything that’s subsequent sort of reviews showed, you know, were evident here. I think you have problems with, you know, Health Service under complete strain in 2020, having to think, as I said earlier, about individual people as individuals with a disability that needed to be thought about on an individual basis, with enough time to consider all the underlying issues pertaining to that individual with enough training, enough time on the Health Service workers to be able to provide that service, and enough sort of leadership and management to make this a priority.
I think all those things, you know, were difficult through a time of incredible strain in the Health Service. So, you know, I think the advice in March, you know, rather sort of allowed people to take slightly more of a blanket approach, and even though this advice two weeks later was trying to sort of rescind that, and be a bit more thoughtful, as this paragraph shows, to encourage people to be more thoughtful in their approach, I still think it was asking a lot of the system at the time to be able to do that.
Counsel Inquiry: Almost a year later in March 2021, the Care Quality Commission published a review of DNACPR decisions based on work conducted between November 2020 and January 2021. Please can we have on screen INQ00016428. At page 2, please, starting on the penultimate paragraph, we read:
“People’s experiences of DNACPR decisions [were] varied. We heard that some people felt they had been involved in the decision-making process, as part of a holistic conversation about their care. However, others felt that conversations around whether they would want to receive CPR came out of the blue and that they were not given the time or information to fully understand what was happening or even what a DNACPR was. In some cases, people were not always aware that a DNACPR decision was in place. This could be hugely distressing for people and their families and/or carers.”
Just moving to the next paragraph before I ask you about this:
“It is concerning that some people across a range of equality groups, including older people, people with dementia and people with a learning disability, told us that they were not supported to the extent they needed to be in advance care planning conversations, or given the information they needed in an accessible way.”
Given the dialogue that had taken place between, as you say, the National Autistic Society which led to the April 2020 letter coming out, how concerned are you by the conclusions of this report in March 2021?
Mr Matthew Stringer: Yes, I think it shows, you know, almost a year after the correspondence from March and April 2020, that there were still challenges in the system, there were still challenges, I think, in terms of people, you know, working in the frontline of the Health Service having enough training, having enough awareness of disabled people to be able to apply a correct approach. I think struggles with time, there were still issues of having access to families and carers to get that rounded view about an individual and there was, we would surmise, still some challenges in terms of the consistent application of the policy and process from the centre, even after the updated letters of April 2020.
Counsel Inquiry: In your view, should there be a systematic review of the DNACPR notices that were issued during the pandemic?
Mr Matthew Stringer: I think as part of the point I made earlier about understanding the data better than we do now, I think that would be a useful thing for us to investigate.
There is a concern, even now, that we still think there’s a lingering problem with DNACPR still being attached to people’s records even in a sort of non – you know, in a world where we’re not the – in the sort of intense period of the pandemic. So I think some work to understand that, yes, would be a good thing but I think it also needs to look at what is happening now as much as what is happening three or four years ago.
Counsel Inquiry: Thinking about what’s happening now and also looking to the future what changes would the DCC like to see in the way that DNACPR decisions are made?
Mr Matthew Stringer: Well, I think the report that we’re now looking at from March 2021 has got some actually very good conclusion’s actually, so we think – we can see that properly implemented, you know, both in terms of the understanding of the individual, you know, if some rounded decision can be taken with the right input from family, carers, and any other, you know, bodies involved, to make sure all the information and all the concerns are properly addressed, and the appropriate training for people in the Health Service working in this space, you know, to make sure they’re aware of their responsibilities, but also to understand, as I say, that they need to take into consideration all those factors I’ve mentioned.
So I mean we think the findings were actually pretty good. It’s a question of getting those properly still fully implemented we would still advocate for.
Counsel Inquiry: Next please, shielding. At your paragraph 58, you observe that many disabled people were not identified as being clinically extremely vulnerable. Can you help us with the effect that this had on those people?
Mr Matthew Stringer: Well, I think it obviously made people more open to harm, more open to problems, because they weren’t assessed as being clinically vulnerable or clinically extremely vulnerable. I think we would feel that there was quite a sort of clinical lens applied to this consideration at the time, and what wasn’t, you know, maybe brought into play early enough was a more rounded view of individuals to look at things that went purely beyond the clinical and looked a bit more at socio-economic, looked at the domestic circumstances and was able to create a fuller picture of an individual to work out, you know, whether or not they should be thought of as clinically vulnerable or clinically extremely vulnerable, and as we saw people with Down’s syndrome were added to that list in autumn 2020 because through the first few months of Covid, there had been an assessment of what I have just said, that there was a more rounded view to be taken about people with Down’s syndrome, the data showed they had greater vulnerability, and they were added to the list.
There were still challenges then on how that was applied to those individuals with Down’s syndrome but the point being that I think people realised, maybe six months into Covid, that actually a more rounded view needed to be taken, in consideration of who would be clinically vulnerable or clinically extremely vulnerable.
Counsel Inquiry: How could that rounded view have been taken into account from the very outset?
Mr Matthew Stringer: Well, you know, as I said, I think in a few of my answers today, I think, you know, there was a clinical lens applied to Covid. People – disabled people, I think, were seen as a sort of collective. There wasn’t enough understanding of the nuance we’ve seen different types of disability and different potential requirements. In my initial answer about the 16 million disabled people in the UK, I broke down, you know, some of the core groups within that, and then gave a sense that there are people with very different requirements and very different conditions and different aspects.
So, you know, I think there should have been more thought, even at that quite high level, of disability, to some of the challenges that those people would experience societally in getting through Covid, and that extra consideration added to the slightly more limited clinical consideration.
Counsel Inquiry: More thought and perhaps early engagement with organisations like the one you represent?
Mr Matthew Stringer: Yes, that sounds a little self-serving if I say yes to that, but I think, you know, more insight and more information that comes from the beneficiaries comes from the lived experience is critical. And I think, you know, whilst we did have good engagement at different times on different topics, I think, you know, our sense would be that we were always slightly playing catch up on whichever aspect of Covid we were engaged with, and the problem was that the preparation hadn’t been done with that engagement sort of upfront so that we were better prepared. And I think it was evident in your question on people who were clinically vulnerable or clinically extremely vulnerable.
Counsel Inquiry: For those that did receive a shielding letter, were those letters always sent in a format they could read?
Mr Matthew Stringer: No, not always. I mean, we’re going to come on to the broader points about communication. I think one of the challenges that we had from the very start was making sure communication to disabled people was in the accessible format that they could absorb, and clearly it wasn’t. So whether that was a shielding letter or any other form of communication, it was a very patchy process, and a very patchy, you know, sort of – it didn’t work very well for disabled people, the communication processes, because accessible communication was not a thread that ran through our response to Covid.
Counsel Inquiry: Yes. Just thinking for a moment about someone who receives a shielding letter that they are not able to read: what is the practical impact on that person? That they wouldn’t know that they had to shield?
Mr Matthew Stringer: Yes, that’s right. I mean, if you can just use the example of someone who is visually impaired, first of all, the letter lies on your door, first of all, how do you know what the letter is? How can you tell from the envelope what’s in it? You can’t actually read it if it’s not in an accessible format and you rely on someone else, a neighbour or another family member; often that might be difficult if you’re living on your own, you might be able to do that late in the day but, as I say, the fundamental problem first is you might not even know that letter’s arrived in the first place and, therefore, if you don’t know or you are late in being able to access the information clearly, it puts yourself at risk if you are being asked to shield, for example.
Counsel Inquiry: Moving on to communication issues more broadly then, how would you characterise the accessibility of public health information about Covid-19 for disabled people?
Mr Matthew Stringer: We think it was a real challenge through all of Covid, honestly. We think it started in a difficult way, and whilst there was some improvements, it didn’t get to a point whereby, you know, systematically information was accessible for disabled people in the UK, if I could just maybe give some examples.
So we’ve talked about critical letters around shielding that should have been available for people in their preferred format, whether that’s large font, whether that’s Braille, and we never really achieved that through Covid. There was some representation with the Cabinet Office and the Department of Health and Social Security, and there were times we were able to, for example, put the RNIB in there as a helpline so they knew they could contact us, and we could do that, but frankly, putting the RNIB into a letter that is in an inaccessible format is far from a satisfactory answer.
Then you have other challenges. So for people who are deaf, the RNID were very keen to try and get, you know, British Sign Language interpreters involved in all government and other important communications, and from a UK Government perspective, that never happened in a systematic way. When BBC News and sort of BBC1 came together, it was achieved, but often the 5 o’clock daily press conference was conducted without any sign language interpretation. And it can be done; it was done in Wales, it was done in Scotland by the First Ministers who did have sign language interpreters routinely there is, for their daily press conferences in the devolved nations.
Counsel Inquiry: So despite engagement by disability charities with the government, the problems persisted throughout the pandemic?
Mr Matthew Stringer: Yes. As I say, we started I think with quite a low base. There was engagement. Again, we were engaging in March I think individually with people like the Cabinet Office. I certainly did that from an RNIB perspective. We came together in April and the letter we send to the Prime Minister and response from the minister for disabled people, Justin Tomlinson, in May talked about setting up a sort of comms group which happened but if you look across all the different media of communication through the pandemic, so there were the daily press conferences, we talked about letters, there were government apps, there was social media activity, it was patchy about how those sort of evolved and were fully accessible over time, made some good progress on things like government websites where they were fully accessible, but things like some of the social media activity, government press conferences, you know, letter communication, never really got to a point whereby it was fully accessible in a sort of foolproof way. That just didn’t happen.
Counsel Inquiry: In your view were these issues reflective of long-standing pervasive problems around the accessibility of public information for disabled people?
Mr Matthew Stringer: Yes. I mean, if you go back, I mean, one of the things that we would really recommend would be the implementation of the Accessible Information Standards which has been mandated from 2016, which basically says that, you know, information around health – people’s engagement with the Health Service should be done in an accessible format for that individual.
That is ready to go. It’s an oven-ready thing. We have been campaigning on it even recently because it’s not in place and if that had been in place before the pandemic it would have made life so much easier for disabled people to have the confidence that they were going to get their communication in an accessible format.
Counsel Inquiry: Mr Stringer, your statement concludes with this observation:
“The DCC is concerned that disabled people were treated as an afterthought during the pandemic.”
To ensure this does not happen again, what lessons or recommendations do you wish this afternoon to share with the Inquiry?
Mr Matthew Stringer: Yes, I think, I would say, three things. I think a point, a thread through all my answers has been the need to see disabled people as individuals and not as a collective and not as some second-class collective and I think too often through Covid, whether we were talking about communications, whether we were talking about application of DNACPRs, whether we’ve been talking about, sort of, access to health and guidance to the NHS on how to support disabled people through, sort of, routine health, sort of, visits, you know, all too often we can see that there was a sort of blanket approach, there was an unthinking approach and we were playing catch-up throughout that.
So I think, you know, we need to think about disabled people as individuals and be able to put in place solutions which much more support them as individuals. There was a real gap that we saw exacerbated in Covid.
The second point is a point I would like to make about data. I think one of the challenges we have is data flows, which is a real panacea to try and fix, but I think one of the problems we saw was that we didn’t know where to go to for data, we didn’t know which was the primary data. So if we’re looking at, you know, understanding who should be, for example, you know, classed as clinically vulnerable, or clinically extremely vulnerable, you know, we had GPs with information, we had local authorities with information on registers, you know, we had the DWP with information from a welfare perspective. I think one of the problems was we did not have single version of the truth or a primary source of data to use that we could have then everybody rode in behind and used that data as something that then drove, you know, a common policy and a policy we all understood, you know, what we were doing with it.
And I think whilst those data pools aren’t perfect I think we were using different sources of data which was inconsistent and incomplete through Covid.
The final think I would say is what I just said a few minutes ago. We could implement the Accessible Information Standard. That exists. That is not something that has to be created and would go a long way to providing disabled people with communication in a format they could understand and I think what – I think it’s trying to get across, as I think we saw from beneficiaries, was a real sense of despair and feeling very forlorn and abandoned through this process because you weren’t getting the communication in a format you could access and therefore you weren’t getting critical information on time to do something with and I think, you know, that was a real problem for disabled people through Covid and it then exacerbated other issues because then you didn’t access things, and you didn’t do things on time.
So we could implement the Accessible Information Standard which has been ready to go since 2016 that would be a real boon for disabled people in the UK.
Counsel Inquiry: A proposal that you offer in your statement is to introduce a mechanism within the policy making process for new policies to be sense checked with disabled people or, indeed, the organisations representing them. Can you give us a sense of how you envisage a process like that operating?
Mr Matthew Stringer: I think the Disability Charity Consortium, you know, are the – it’s the biggest group, it’s the best group, it brings the insight we can bring from those millions of people that we support and I think, you know, the DCC engaging appropriately with national institutions, government, Health Service, all of which we do to a degree. You know, we have regular ministerial meetings, we meant Stephen Timms recently.
If we go back through the previous administration, regular meetings on national disability strategy with previous Conservative ministers.
So the channels are there. I think it is putting in place a more considered process about what those channels are doing and to make sure that we’re addressing some of the critical things in time, not using those channels as we did in Covid to sort of play catch-up on events where we were already too late, actually, to address some of these problems that had already started through Covid.
So I think the DCC group is very a valid reference point, and those contacts are there. It’s just a question of codifying and using those on the right things, I think.
Mr Mills: Mr Stringer, thank you.
My Lady, that’s all I ask.
Lady Hallett: Mr Weatherby.
Questions From Mr Weatherby KC
Mr Weatherby: Mr Stringer, I ask questions on behalf of Covid Bereaved Families for Justice UK, just a few questions from me, and back to the access and treatment of those with learning disabilities within the healthcare sector with some questions about the importance of specialist nursing.
I want to concentrate around a report of one of your member organisations, Mencap, which I think you have had an opportunity to look at. So in terms of providing the Inquiry some evidence here, can I take you straight to that. Perhaps we could have it up on the screen and if we could start with the front page of it, it’s INQ000176404.
Whilst it is being brought up, this is a Mencap report which I think you referred to earlier –
Mr Matthew Stringer: Yes.
Mr Weatherby KC: – and it’s entitled “Barriers to healthcare for people with a learning disability during the pandemic”.
If we could jump to page 21, please, again this is the page, the heading, for the relevant section that I want to take you to, “Care for people with a learning disability in hospital”. Then the next page, please, and the top part of that page.
So what the report is looking at is reasonable adjustments are vital to accessing healthcare for people with a disability. These can be relatively simple things, as you have already adverted to, such as waiting in a quiet area or being accompanied by a supporter on an overnight stay, or quite complex adjustments requiring whole teams to work together and do something very differently. And sometimes these adjustments need specialist input.
So there’s quite a big picture here. Then it goes on to talk about the legal requirements and the fact that they weren’t affected by the Coronavirus Act and then this, third paragraph:
“It is known that a lack of adjustments to care even in ‘normal’ times can have fatal consequences for people with a learning disability.”
So as a starting point that grounds us, doesn’t it, in the absolute imperative for proper access and services to be provided for those with learning disabilities in the healthcare sectors; is that a fair way of putting it?
Mr Matthew Stringer: That’s fair, yes.
Mr Weatherby KC: Yes. Then, at the bottom of that page, please, the last two paragraphs, this is where Mencap has surveyed healthcare professionals and nurses in particular. I’ll just read those two paragraphs:
“Many nurses surveyed by Mencap were critical of the care that is being given to people with a learning disability during the COVID-19 pandemic, with one participant remarking, ‘Unfortunately the support I have witnessed in hospitals falls very short of even basic nursing care.’.
Only 1 in 5 [learning disability] nurses surveyed said they had always seen reasonable adjustments made for people with a learning disability.”
Those are stark survey findings, aren’t they?
Mr Matthew Stringer: I mean, yes, they are, and I think Mencap have done a very thorough job with this report. It’s from December 2020, so it takes, I think, some very real and very raw feedback from the people surveyed, and as you have just highlighted in this extract from the nurses who were providing that care –
Mr Weatherby KC: Yes.
Mr Matthew Stringer: – so I think it’s a very relevant, raw, genuine perspective, yes.
Mr Weatherby KC: Raw, genuine, and very much from the people who would be most knowing about it.
Mr Matthew Stringer: Yes.
Mr Weatherby KC: Of course it’s correct, isn’t it, that learning disability nurses, specialist nurses, play an absolutely vital role in ensuring that access and reasonable adjustments are put in place in a hospital setting for people with learning disabilities?
Mr Matthew Stringer: Yes, that is right.
Mr Weatherby KC: If we could then go to the bottom of the next page, please, the final paragraph on page 23:
“Covid-19 has created extra risk that people may need to attend hospital unaccompanied, and infection control measures may have made it more likely that items such as hospital passports and other important communication aids are lost. This will have created extra barriers to people’s support needs even being flagged to hospital staff in the first place.”
Sorry, I stumbled over those words, but that really starkly again sets out the entry point of the problems for learning disabled patients during the pandemic, doesn’t it?
Mr Matthew Stringer: Yes, I think Mencap I think in the report and separately have got some very compelling evidence from individuals and beneficiaries who went through a process whereby they were on their own, unaccompanied, as this paragraph says, but didn’t have those items with them, hospital passports and that sense of the individual, you know, which was sort of lost and then moving through the process on their own and therefore decisions were taken about their care which ultimately did involve, for some individuals, DNACPR decisions which were done very much in a two-dimensional way without that rounded view being taken.
Mr Weatherby KC: So the problem started from the outset?
Mr Matthew Stringer: Yes.
Mr Weatherby KC: The lack of recognition of identifying needs?
Mr Matthew Stringer: Yes.
Mr Weatherby KC: And then after that the provision of specialist nurses, of course the capacity issues in the healthcare setting and the pandemic itself put enormous strain on staffing and that meant that many learning disability nurses were redeployed, sometimes leaving no specialist service at all for learning disabled patients; is that right?
Mr Matthew Stringer: Yes, that’s right. I think it comes out in the report that there are examples. I think we’ve seen, you know, pressures on the Health Service clearly probably coping with sickness themselves having to move resources around, you know, and make some very tough real-time decisions, totally sympathetic to the challenge. Clearly one of the implications was that people were moved away from, you know, an area of specialty into something else and those people who relied on that area of speciality were then left, you know, slightly abandoned because that care was no longer there.
Mr Weatherby KC: Yes. I will come back to slightly abandoned in a moment, if I may, but the last passage of this report, the next page, please, just the top paragraph of it, this is the last reference, page 24:
“Many healthcare staff have been also redeployed throughout the NHS and may be working in unfamiliar environments, stressed and exhausted – making it harder for them to make adjustments to the care they’re pricing under such pressures. Among those redeployed were a number of learning disability nurses, meaning that in some trusts, there may have been a lack of specialist support for patients needing adjustments to their care.”
Then some statistics:
“Around 11% of acute learning disability nurses we surveyed said they or a team member had been redeployed; for community based learning disability nurses it was 34%. One first commented, ‘I was redeployed for four weeks to [another] ward. During this period there was no specialist learning disability service provided across the Trust’.”
And that’s evidence of the seriousness of the redeployment issues, isn’t it?
Mr Matthew Stringer: Yes, that’s right. As I’ve just said earlier, we saw people not having access to the sort of learning disability service because redeployment decisions had been taken, yes.
Mr Weatherby KC: Looping back to where we started, with the recognition that even in normal times that the lack of provision for people with learning disabilities could be fatal, would you agree that there is a link between the redeployment and the lack of services and what we’ve looked at in terms of the mortality statistics in terms of people with learning disabilities?
Mr Matthew Stringer: Yes, potentially. I mean, as I said earlier, I think we need to do some more earlier analysis on the mortality stats to really understand what was going on. There might well be to your question a link with the support that disappeared from specialist nurses because they were redeployed. Yes, I mean, I think that’s a fair link but, as I say, I think we need to do some more analysis of the data to really be able to prove that empirically.
Mr Weatherby KC: Yes and, of course, the Inquiry has heard some direct evidence about this.
Finally this: in future pandemic planning, learning disability specialist care should be seen as an integral part of the delivery of essential services, shouldn’t it? That was a key missing part here.
Mr Matthew Stringer: Yes, it should be but, again, I just refer back to my earlier answers. I think there’s a general gap in thinking about disabled people in the round and in a full way, and clearly consideration as to the learning disability service provided within the Health Service is part of that consideration. So decisions can be taken understanding where that bit slots into the overall improved, you know, analysis of what is required to support disabled people through another pandemic, yes.
Mr Weatherby KC: That’s very helpful. Thank you very much indeed.
Mr Matthew Stringer: Thank you.
Lady Hallett: Thank you, Mr Weatherby.
That concludes the questions we have for you, Mr Stringer. Thank you so much indeed for your help and obviously all the work that you and your other organisations do to help people who so desperately need the support you can provide. Thank you very much indeed.
Mr Matthew Stringer: Thank you.
(The witness withdrew)
Lady Hallett: I shall return at 1.40.
(12.40 pm)
(Luncheon Adjournment)
(1.40 pm)
Lady Hallett: Yes, Ms Nield.
Ms Nield: Thank you, my Lady.
Could I call Professor Naqvi who will affirm.
Professor Habib Naqvi
PROFESSOR HABIB NAQVI (affirmed).
Questions From Counsel to the Inquiry
Ms Nield: Can you give your full name, please.
Professor Habib Naqvi: Professor Habib Naqvi.
Counsel Inquiry: Professor Naqvi, you have given a witness statement to the Inquiry dated 13 October 2023. That’s INQ000315604. I think you are familiar with that statement and you have a copy in the front of you; is that right?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: Professor Naqvi, you are the chief executive officer of the Race and Health Observatory; is that correct?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: And you have been so since its inception in April 2021?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: I think previously you worked for NHS England where you directed the development and implementation of national programmes including the Equality Delivery System and the NHS Workforce Race and Equality Standard, and prior to working for NHS England, I think you worked at Department of Health and Social Care where you led on national equality and diversity policy; is that right?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: The Race and Health Observatory I think was established during the Covid pandemic in April 2021 but that wasn’t the reason for its creation. What are the purpose and aims of the Observatory, please.
Professor Habib Naqvi: The Observatory’s purpose and aims are to identify and tackle ethnic and racial inequalities in health by focussing on some of the deep-seated issues within the healthcare system but also within the social determinants of health as well.
Counsel Inquiry: I think whilst the Observatory works closely with and receives funding from NHS England, it is an independent body; is that right?
Professor Habib Naqvi: Absolutely. It is an independent organisation that can hold up a mirror to the rest of the healthcare system and act as an excuse remover.
Counsel Inquiry: You explain in your witness statement that the work of the Race and Health Observatory is not only focused on patient experiences and outcomes in healthcare but also racism and inequalities experienced by those working in the NHS system. Is that in England or across the UK?
Professor Habib Naqvi: That’s predominantly in England, yes.
Counsel Inquiry: And I think the core work of the Race and Health Observatory is its research work and I think that’s twofold, both in relation to conducting or funding original research but also a synthesis or review of the existing research and studies; is that right?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: We’re going to look today, if we may, at the research work that the Observatory has undertaken in connection to Covid-19 and racial inequalities.
Could we begin, please, with the rapid evidence review that was undertaken in March of 2021 in relation to pulse oximetry and racial bias. I think you set out this in your witness statement.
Can you help us, first of all, with what is a rapid review?
Professor Habib Naqvi: A rapid review is bringing together the existing evidence base around a particular area. It doesn’t specify that a robust examination of the quality of that work is undertaken but it brings together the evidence base that exists at that particular point in time.
Counsel Inquiry: So it’s a way of reviewing and bringing together what exists in the research literature at that point in time?
Professor Habib Naqvi: That is correct.
Counsel Inquiry: If we can site this in the context of what was going on during the pandemic at that time, I think it’s right that the COVID Oximetry @home programme had been rolled out by NHS England in around November of 2020 and in December of 2020 there was an article published in the British Medical Journal about pulse oximetry and the potential for inaccurate readings in patients with darker skins which itself referenced, I think, an American journal article.
Was that the trigger for the rapid review that took place?
Professor Habib Naqvi: Those were the prime triggers in addition to some anecdotal insights that we were getting from some medics around potential inaccuracies in this device.
Counsel Inquiry: I think the rapid review identified a number of international studies going back as far as 1990 which identified the potential for inaccurate or variable readings from pulse oximeters used by non-white patients; is that correct?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: I think it’s also right to say that the rapid review identified that there were some studies that found that the degree of pigmentation did not affect accuracy in the studies that they had undertaken, and at page 3, I think, of that rapid evidence review it suggested a possible explanation for inaccuracies related to how those devices had been calibrated or tested. It was suggested that it may have been that the devices had only been tested on white people; is that correct?
Professor Habib Naqvi: That’s correct. There’s a fundamental point here, though, with regards to representation or lack of representation in clinical trials that then leads on to the development or design of devices, medical devices, including pulse oximetry. Where there is a lack of representation we often get products or devices that may not be suitable for the diverse population that we’re here to serve.
Counsel Inquiry: I think it’s right to say that the studies that were referenced had largely been undertaken in America or internationally and so this wasn’t a review of the devices that were being used in England at that time but I think the report concluded that more research was needed and it would be necessary to review the devices that were being used in the UK.
Do you know if the recommendations made in that rapid evidence review were taken forward by the relevant bodies?
Professor Habib Naqvi: Yes, there were very clear recommendations in that review and the ones that were taken forward included further research that was carried out – a substantial bid was put out by the NIHR with regards to particularly evidence from the UK and an update of the existing guidance around pulse oximeters and their usage on the NHS Choice’s website.
Counsel Inquiry: It was also suggested that the MRHA should undertake an urgent review of the pulse oximetry products used in the UK. Do you know whether the MRHA did conduct that review?
Professor Habib Naqvi: I believe an assessment was carried out in addition to the government announcing an independent review into equity with regards to all medical devices generally, as well.
Counsel Inquiry: Thank you. I think after the Race and Health Observatory had published that rapid review in March 2021, the Observatory met with NHS England’s health inequalities improvement team to discuss that report. You’ve been provided with the witness statement of Stephen Powis of NHS England who states that there were some concerns at that point within NHS England that the Race and Health Observatory report might potentially discourage some patients from ethnic minority backgrounds from participating in the COVID Oximetry @home programme and that this could further disadvantage those patients by limiting the tools available to clinicians in monitoring their progress or any deterioration if they had Covid-19.
Is that something that was discussed between NHS England and the Race and Health Observatory at that time?
Professor Habib Naqvi: Yes, it was discussed and at great length. I guess there were also concerns within the Observatory that these devices could put people at risk and the fact that the colour of your skin should not determine your chances of survival, and so where there were issues or doubts around a medical device we thought it was absolutely critical that we highlight those particularly during a pandemic that was affecting the level of oxygen in people’s bodies.
Counsel Inquiry: Mr Powis, in his witness statement – Professor Powis, I should say, states that subsequent to the publishing of the report, there were ongoing collaborative discussions between the Race and Health Observatory, the MRHA and NHS England. Can I ask you this: were the Race and Health Observatory satisfied with the engagement with NHS England on this issue?
Professor Habib Naqvi: Yes.
Counsel Inquiry: Thank you.
It’s also suggested by Professor Powis that in hindsight it might have been more advantageous for the Race and Health Observatory report to have been shared with NHS England prior to publication so that NHS England could have worked with the Observatory on sensitive and constructive messaging including how to maximise potential benefits as well as minimising the risks.
Can you help us, Professor Naqvi, with your views on that bearing in mind also the timing of this review which I appreciate was before the Race and Health Observatory had officially come into being?
Professor Habib Naqvi: Absolutely. This report was published in March 2021. The Observatory was officially launched in April 2021 so we were doing, as the title suggests, a rapid evidence review which in fact took six weeks for us to pull together. In hindsight, it may have taken longer to arrange a meeting with NHS England to discuss the report but the importance here was to get the information out and to highlight potential inaccuracies in the devices. This wasn’t about looking at the reputation of any individual or any individual organisation but about saving, potentially saving lives.
Counsel Inquiry: In terms of, now that the Race and Health Observatory is well established, if something similar was going to be done in relation to a review of evidence on a topic where NHS England, for example, are currently running a programme, how would that engagement, in terms of engagement prior to publication, how would that take place under your existing processes?
Professor Habib Naqvi: Sure. So that piece of work around oximetry was carried out during the period where the Observatory was setting up its policies and its processes. The Observatory now has well-established processes by which it engages, you know, in a proactive way with the policy leads in various organisations that are relevant to the subject matter being looked at within any particular report.
Counsel Inquiry: So, now, that engagement would take place even prior to publication?
Professor Habib Naqvi: Absolutely.
Counsel Inquiry: Thank you. Can we move on, please, to look at the next piece of work that the Race and Health Observatory undertook during the pandemic period. That was, again, another rapid review that you set out at paragraph 9c of your witness statement, if that assists you, Professor Naqvi.
I think in February 2022, a piece of work which reviewed a number of studies and surveys focused on inequalities in healthcare settings and particularly for healthcare workers during the pandemic. You’ve summarised the findings of that rapid evidence review in your witness statement. Essentially it identified racial inequalities in a number of aspects: higher rates of Covid-19 infection rates amongst ethnic healthcare workers compared to white healthcare workers, less access to PPE for ethnic minority healthcare workers and less access to properly fitting RPE; higher risk work roles allocated to healthcare workers in terms of frisk of composure to Covid-19 infection; and, worse mental health and well-being, particularly in relation to symptoms of post-traumatic stress disorder found amongst ethnic minority healthcare workers as opposed to white healthcare workers.
Can I ask you this. In your view, were these racial inequalities that were identified in the studies synthesised in this rapid review a manifestation of structural or institutional racism in the NHS?
Professor Habib Naqvi: Well, it would be a combination of structural inequalities, the inequalities and structural racism that we see within society, how that plays out, for example, within the education system or the legal system, or within healthcare, as well as the interpersonal racism that we see on an everyday basis, the trauma, the bullying and harassment, what we call micro and macro aggressions, and how those two interact in terms of institutional racism, how that plays out within policies and processes within organisations, including, of course, our healthcare system.
Counsel Inquiry: Can you help us with this: what’s the difference, if there is one, between institutional racism and structural racism, because you mentioned both of those things in your answer?
Professor Habib Naqvi: So structural racism is about the, I guess, the structures of society, how they are organised to impact upon individuals or groups of individuals, and that may well be in relation to access to services, and – or outcomes with regards to, for example, the education system, and institutional racism is more in relation to the everyday policies and processes that are looked at and used on an everyday basis in the NHS, for example. That may well be in relation to recruitment processes or disciplinary processes, et cetera.
Counsel Inquiry: Thank you. Staying with that rapid review report for now, I think at page 87 of that report there were a number of recommendations made, and I’d like to ask about one in particular, which was in relation to including more information in the national data set such as the NHS Workforce Race and Equality Standard.
The recommendation was that all NHS staff in all sectors, including casually employed staff, and those working in subcontracted services, should be represented in those datasets to present a comprehensive and accurate picture of workplace inequalities.
Was that recommendation implemented, do you know?
Professor Habib Naqvi: I believe it was, and in fact I think for the first time this year, NHS England published the Workforce Race and Equality Standard for agency staff working in the NHS.
Counsel Inquiry: Thank you.
Can we move on, please, to the Nuffield elective care report. This was a joint report undertaken by the Observatory together with Nuffield Health in November 2022, and you set this out at page 7 of your witness statement if that assists, Professor, at paragraph 9e.
I think this was a study based on statistical analysis of data from the hospital episode statistics, admitted patient care data, and it covered three years from March 2019 to February 2022; is that right?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: I think that research looked at the data and statistics to explore variation in treatment rates for routine and hospital care, both before and during the pandemic, and looking at the changes in elective activity overall. And it identified seven particular groups of common hospital procedures, and five main ethnic groups of patients to see whether there was a variation according to ethnicity; is that right?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: You summarise that very helpfully in your witness statement. I think it’s fair to say that there was considerable variation, both between the ethnic groups and in relation to the different procedures that were considered, but there was a clear picture, I think, that emerged in relation to the Asian ethnic group; is that right?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: Can you summarise what that trend or picture was?
Professor Habib Naqvi: I think the first thing to say is that there were pre-existing inequalities in elective care that kind pre-dated the pandemic, and that’s one of the reasons why we need to focus on tackling ethnic inequalities in health on a continuous basis, and not just when we’re in an emergency situation as we were during Covid-19.
But there’s known epidemiology with regards to – and particularly the South Asian group having higher healthcare needs, and cardiac procedures is one example of that which we highlight very clearly within that report. But there were other issues around the healthcare system moving towards remote consultations and digital care, and –
Counsel Inquiry: Before we move on to the causes of those disparities or the variation between the Asian ethnic group and the white ethnic group, I think the trend that was identified was that across all the different procedures that were looked at, the Asian ethnic group suffered a greater deficit in elective activity compared to any of the other ethnic groups and particularly in relation to the white ethnic group; is that correct?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: I think the report noted that if the proportional fall in activity during the pandemic was the same for the Asian group as that fall was for the white group, they would have expected to see just over 17,000 more elective procedures for the Asian group, is that correct?
Professor Habib Naqvi: That’s correct, I believe, yes.
Counsel Inquiry: I think the report also found that those larger falls in activity for the Asian group occurred irrespective of regional differences in the impact of Covid-19, so infection rates in different geographical areas, and the conclusion was that the falls for that Asian group must have been largely related to changes in demand from that patient group.
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: And I think the authors then suggested some potential explanations for that. Could you assist us with that, please.
Professor Habib Naqvi: I think I mentioned the pre-existing backlog and known epidemiology particularly amongst South Asian groups, but the digital exclusion point was highlighted in the report, and potential language barrier with regards to that. Private healthcare access was another point we know, that 41% of Asian households lived in the 10% most deprived areas, and therefore access to private healthcare may not have been an option for those patients.
But looking at deprivation only tells you where an inequality exists, but not why it exists, and therefore, focussing on issues around the trust and confidence that communities and patients had with the NHS, and with the healthcare system, is an important point to keep in mind with regards to some of the potential reasons for why there may have been a decrease in elective procedures for that particular group.
Counsel Inquiry: I think the report also highlighted that it was possible that there may have been concerns about increased exposure to Covid-19 for the Asian group leading to greater concern about coronavirus risk, and so choosing not to go ahead with elective procedures was a possible explanation; is that right?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: I think that report also highlighted some limitations in the statistical analysis that could be carried out because of the quality of ethnicity coding in hospital datasets, and I think you have identified that there are three principal issues or problems with ethnicity coding. Could you help us with those please, Professor?
Professor Habib Naqvi: Poor ethnicity data recording in the NHS is long-standing challenge. The healthcare system has, and in fact the patchy data meant than the NHS was perhaps flying blind in its attempts to meet its moral and legal obligations. There are issues around the collection of data, ensuring that patients and the community know exactly why data is being collected in the first place, to build that level of trust and confidence. Secondly around the quality of the data itself. So ascribing people to broad labels isn’t helpful, particularly as we can see in the – with regards to Covid-19 and the pandemic, it was having a differential impact upon differential groupings –
Counsel Inquiry: So the ethnicity coding is currently too broad, there’s a lack of granularity?
Professor Habib Naqvi: Absolutely.
Counsel Inquiry: So, for example, is there currently an ethnicity coding for Filipino ethnicity?
Professor Habib Naqvi: The codings that are generally used relate back to the census categories, and very often are not the most current census categories. So there wouldn’t be in that instance, no.
Counsel Inquiry: I think there are five broad ethnicity groupings, is that correct?
Professor Habib Naqvi: I think there’s more than five at the moment in terms of the census.
Counsel Inquiry: Thank you. Following on from that, one of the recommended actions from the Nuffield report was an urgent need to improve ethnicity coding to enable these kind of analyses, and it was identified that the healthcare quality improvement partnership should take a lead on implementation of that recommendation. Do you know whether that has been done?
Professor Habib Naqvi: I wouldn’t know the answer to that, but what I do know is that there is a national drive, including within the Race and Health Observatory, to focus on improving ethnicity data recording going forward.
Counsel Inquiry: I’d like to ask now about the ongoing work of the Observatory related to Covid-19. I understand that the Race and Health Observatory have funded an ongoing longitudinal cohort study into the impact of Long Covid on black, Asian, and minority ethnic healthcare workers. That’s called the REACH-OUT study; is that correct?
Professor Habib Naqvi: That’s correct.
Counsel Inquiry: I think no findings have been released yet; when is the final report expected?
Professor Habib Naqvi: Early 2025 will be kind of the publication time frame for the final study.
Counsel Inquiry: And also, as part of your ongoing work, I think the Observatory have initiated a piece of work exploring the role of trust in interactions in primary care, and you set out that helpfully at paragraph 9f of your report. What’s the nature of that work? Is it a study or a survey, or?
Professor Habib Naqvi: It’s a survey that was first distributed in January 2022, and responses were collected in April 2022. It’s a survey of the public with regards to their views around accessing primary care and the levels of trust and confidence that they have with primary care.
Counsel Inquiry: So is analysis undergoing at moment in relation to that?
Professor Habib Naqvi: The analysis has taken place. We’re just finalising the report which we hope can be published in the coming months.
Counsel Inquiry: Thank you. You have set out in your witness statement at paragraphs 10 to 18 some observations on the context of the unequal impacts of the pandemic, and that context being the pre-existing inequalities caused by structural racism.
I would like to ask you, if I may, about the example you give in paragraphs 13 and 14 of the different ways of analysing data, for example, the ONS data on mortality rates by ethnic group.
You explain that when the Office of National Statistics published those statistics on Covid mortality rates, the data was present with the rates adjusted for location, measures of disadvantage, occupation, living arrangements, and pre-existing health conditions. And the conclusion of the ONS was that this accounted for a large proportion – not all, but a large proportion of the excess Covid-19 mortality risk in most ethnic minority groups.
Can you help us, please, with the view of the Race and Health Observatory on this statistical analysis and is the adjusting of the mortality rates, and what’s the impact of carrying out that adjustment?
Professor Habib Naqvi: Sure. I think there’s a fundamental point around this, which is that those reasons highlight the causes of the inequalities but not the causes of the causes of the inequalities. What I mean by that is that at that time we were informed of the reasons, as you have highlighted, being multigenerational households, comorbidities, ethnic minority people more likely to work on the frontline, including within the NHS. But what we weren’t informed of was why that’s the case, why is it that ethnic minority staff are more likely to find themselves on the frontline and less likely to find themselves in managerial positions or being able to progress within their field to that level?
Why is it that they are more likely to live in multigenerational households and less likely to live in open space, green-space environments?
So focussing on some of the deep-seated issues around, for example, the ethnicity pay gap that occurs within society across institutions and organisations is absolutely critical. So if we are to focus on surface-level solutions to these deep-seated issues we will be having these conversations again in five years to ten years’ time and not be on the front foot in terms of tackling these pandemics and these challenges in the future.
Going back to your point around the ONS, I think it is important to note that those are experimental data, perhaps not as robust as data that’s gone through a rigorous process, but also you can cut and analyse data in any way to tell any particular story. It’s about having your moral compass pointing in the right direction so that you can really kind of focus on the issues at hand.
Counsel Inquiry: What you have said in your witness statement at paragraph 14 is that – talking about the way that the ONS data had been adjusted for those additional factors, that:
“These statistical analyses, while useful, had the effect of moving the conversation on disparity away from conversations about the impacts of structural racism. It meant the government’s policy interventions at the time focussed on the effects of structural racism (such as occupation and living conditions) without ever engaging with the causes of these inequalities, including racism itself.”
Professor Habib Naqvi: Absolutely. I mean, racism has an impact on the effects that we then see play out in terms of, for example in relation to the healthcare system, access and experience and outcomes, but racism also plays an impact on the social determinants of health as well, and that’s housing, and that’s education, et cetera. So we must focus on the causes of the causes if we are to have permanent solutions to these challenges.
Counsel Inquiry: Moving on, if we may, to the lessons learned which you have identified in your witness statement, you identify as a key lesson the need to view inequalities or disparities evident in the pandemic in the context of structural racism.
Do you have any recommendations for addressing structural racism within healthcare settings particularly to improve outcomes for ethnic minority healthcare workers?
Professor Habib Naqvi: Well, we heard so vividly during the pandemic from leaders, from government, from the NHS, pledges and commitments and promises to tackle ethnic and racial inequalities. Now, these were pre-existing inequalities for patients, communities and the NHS workforce. But justice cannot be a fairweather commitment. We must focus on this issue on a continuous basis and that means focussing on building and rebuilding levels of trust with our staff, our NHS staff, with communities and with patients, and trust is about truth told consistently over time and when there’s a breakdown in any part of that algorithm there’s a breakdown in trust and there’s a breakdown in levels of confidence that patients and communities and staff have.
So building and rebuilding that level of trust is absolutely important and that’s about telling the truth about past failings, telling the truth about the reality of the causes of the causes of the inequalities, is about consistency of action to tackle those causes of the causes, and it is about time and engagement that requires time, but engagement that is sustained and meaningful over time and not piecemeal as has been the case, I guess, in the past.
That’s why having organisations that can hold up a mirror to the rest of the system, such the Race and Health Observatory, to highlight issues as that exist is absolutely critical as we move forward.
Of course, you know, the NHS wasn’t built to reflect inequality; it was built to remedy inequality and that should be our aim and focus as we move forward.
Counsel Inquiry: Can I circle back, please, to the point you made about trust or lack of trust both from ethnic minority healthcare workers and also the wider, in the communities, ethnic minority communities. You have highlighted in your witness statement a number of issues which emerged which made it quite clear during the pandemic that there was this lack of trust between those communities and public organisations, public bodies, and the healthcare system as well.
You used the example of vaccine hesitancy and some of the concerns around that.
Does that sort of – that level of mistrust, particularly in relation to the healthcare system appear to have increased during the pandemic, in your view, and if it has, what are the reasons for that?
Professor Habib Naqvi: Absolutely. I believe it did increase to a level which was reflected in the uptake rates of the vaccine, particularly amongst ethnic minority communities. I remember having my first vaccine within the Malcolm X Centre in the heart of St Pauls in Bristol, predominantly a multi-ethnic community, and it was the community leader stood at the gate of that community centre inviting people in. It was a trusted personal in a trusted place. It’s about creating environments where people feel safe, people feel as though they have a level of engagement and trust with not just people but places and therefore having vaccination hubs within community centres, within places of worship was absolutely critical, and utilising community leaders, community pharmacists, faith leaders, to pass on the message. The message is important but so is the messenger and having diversity in both was critical to build levels of trust during the pandemic.
Counsel Inquiry: Thank you for that example.
Have you observed, Professor Naqvi, any successful initiatives or policies within healthcare settings that have made progress in reducing structural racism or the impacts of structural racism?
Professor Habib Naqvi: On patients or …
Counsel Inquiry: Either patients or healthcare workers?
Professor Habib Naqvi: Well, there’s a number of initiatives that have stemmed out since the core period of the pandemic and those include engagement with communities and the understanding that actually that engagement needs to be sustained and it needs to be meaningful as opposed to being focussed on any particular project. So engagement with communities.
But there’s a lot more that needs to be done: investment in local public health, investment in local communities and building that level of trust, investment in making sure that we have the adequate environments in our workplaces within the NHS or our ethnic minority staff with regards to their experiences within the workplace, reducing the bullying and harassment that we see and the gaps that we see between black, minority ethnic, and white staff, increasing the progress that we need with regards to opportunities for progression within the workplace.
We need to focus on the long-standing ethnicity pay gap review particularly so within the NHS as well.
Counsel Inquiry: Those measures or recommendations obviously apply outside of a pandemic situation but I would like to ask whether you have any recommendations looking forward and to the potential for a future pandemic whether you have any recommendations for the response of the healthcare system or planning for the response of the healthcare system in the event of a future pandemic, to avoid that pandemic exacerbating the pre-existing inequalities that may well still exist at that future point?
Professor Habib Naqvi: I think the answer is probably in your question. These are pre-existing inequalities that require a concerted and focused approach. Our approach to addressing these inequalities must be continuous and must be deliberate and not reactive or temporary, having a long-term focus on tackling racial and ethnic inequalities in health and healthcare is something that the government and the NHS should invest in and should focus on so that we’re not on the back foot when it comes to any future pandemic, that we can tackle these issues and learn the lessons from previous situations and emergency situations rather than planning whilst we’re in the eye of the storm.
Ms Nield: Thank you. I have no more questions for you and I think –
Lady Hallett: I think it is Mr Thomas.
Mr Thomas sits behind you, Professor, but – by all means look at Professor Thomas while he is asking the question, but if you could make sure your replies go into the microphone, I would be very grateful.
Questions From Professor Thomas KC
Professor Thomas: Good afternoon, Professor. Just a few questions I have. I should say I represent the Federation of Ethnic Minority Healthcare Organisations and I ask questions on their behalf.
I’ve only got a handful of questions. My first is this: in paragraph 14 you discuss the ONS report which adjusted mortality data based on location, socio and economic factors, occupation and pre-existing health conditions. Here’s my first question. Do you believe these adjustments accurately reflect the lived experiences and heightened risks faced by ethnic minority groups during the pandemic or might certain aspects of their experience have been understated?
Professor Habib Naqvi: Well, those statistics provide a limited picture in the sense, as I’ve highlighted earlier, they present a picture of potential reasons and causes but not the causes of the causes, not the underlying issues that then relate out in terms of the statistics that we see.
And the other point is, of course, you know, they cannot in any way reflect the lived experience of individuals. Behind every statistic is, of course, an individual and an individual’s experiences with regards to that cannot come out in a figure or in any one statistic alone.
Professor Thomas KC: Secondly, in your opinion, how might future reports be improved to ensure that the full impact on ethnic minority groups is accurately reflected?
Professor Habib Naqvi: Well, a number of things here. One is for any change to happen, an organisation or individual must acknowledge that there is an issue to change. Without actually acknowledging that racism exists we will not be able to move from the base.
Secondly, qualitative data is great, is fine, it gives us information but turning that information, that data, into insight and that insight into action is something that we must, and organisations must focus on going forward, and that will include, yes, focussing on quantitative data and statistics, but also looking at the qualitative lived experience of individuals and communities and the NHS workforce.
Professor Thomas KC: Thank you.
Thirdly, do you think that the adjustments made in the ONS report may have masked or minimised the true extent of the disparities in infection risk amongst ethnic minority healthcare workers?
Professor Habib Naqvi: Yes.
Professor Thomas KC: And, if so, and you said yes, what aspects of the workforce’s experience might have been overlooked and what data points or considerations could have been included in the report to provide a clearer picture of infection risks for ethnic minority healthcare workers?
Professor Habib Naqvi: Well, there are a number of factors that were clear through what we were hearing and what we were observing at that time including access to PPE or the lack of access to PPE, particularly for ethnic minority members of staff, with regards to protective equipment and the fit, with regards to risk assessments, with regards to a kind of a range of challenges and issues and, I guess, dilemmas for the healthcare system that were not fully played out in some of those reports.
Professor Thomas KC: Let me come to my last question.
In multivariable analysis factors such as living in large households, frequent exposure to Covid-19 patients, working in emergency or in-patient ward settings, and serving as healthcare assistants are disproportionately present amongst black, Asian, and minority ethnic healthcare workers.
Given this, firstly do you think that these factors should be prioritised over others when addressing health inequalities and risk factors in the healthcare workforce and, secondly, how can these occupational and social risk factors be better addressed in a future pandemic response to protect ethnic minority healthcare workers?
Professor Habib Naqvi: I think the answer to both parts is probably related or the same, and it goes back to my earlier point around focussing on the causes of the causes of inequalities. So looking at why is it the case that ethnic minority staff are more likely to find themselves on the frontline, to be earning less, to be on the wrong end of an ethnicity pay gap, why is it that they are therefore living in multigenerational households or in areas or spaces that do not have the quality of air, for example, that was highlighted in one of the reports, that other groups, other ethnic groups have.
So looking, focussing in the here and the now with regards to some of those causes of the causes will hold the government and the NHS on a firm footing when it comes to any future pandemic.
Professor Thomas: Thank you.
Thank you, my Lady.
Lady Hallett: Thank you, Mr Thomas.
Mr Marquis? Oh, you are there.
Questions From Mr Marquis
Mr Marquis: I ask questions on behalf of the Frontline Migrant Health Workers Group. I have some questions on the ONS data that you have just been referring to and that you have very helpfully agreed may have underrepresented the impact on ethnic minorities.
Professor, first of all, can you confirm that that dataset on which those statistics were based is linked to the census from 2011?
Professor Habib Naqvi: I believe so.
Mr Marquis: For the record, if you need confirmation of that, I’m not sure we need to bring it up, but it’s INQ000302499 on page 1, which stresses that, if I can read it in:
“This data deals with estimates of differences in Covid-19 mortality risk by ethnic group for deaths occurring up to 31 March 2021 using linked data from the 2011 census.”
So it follows, Professor, doesn’t it, that these ONS results do not include the deaths of any migrant who arrived after the 2011 census date?
Professor Habib Naqvi: Well, I assume they would be captured in some category, whether that’s “other ethnic group” I cannot be certain about that, but there are limitations with regards to the census categories as well as, of course, limitations to the data themselves in the sense that they were kind of experimental data that represented.
Mr Marquis: Professor, I’m going to have to stop you for a moment because your assumptions can, of course, be a little dangerous – I appreciate that’s comment, but – if this data is based on census from 2011 follows, doesn’t it, that it cannot include people who were not on that census, i.e. those people that arrived after the 2011 census? It must follow.
Professor Habib Naqvi: Yes, I guess so.
Mr Marquis: Well, again for the record – we don’t need to call this up, but should there need to be confirmation of this, INQ00089742_0021, which is one of Her Majesty’s Government’s quarterly reports on progress to address Covid-19 health inequalities. That document specifically states that any death of someone who arrived in England and Wales after the census would not be included in the ONS analysis.
So, having heard that, now you’re aware of that, would you agree with my initial question that migrants who arrived after March 2011 would not be counted in that analysis?
Professor Habib Naqvi: Yes.
Mr Marquis: Thank you. Professor, we’ve also asked you to review a article from the Health Service Journal. For the record, again, that’s INQ000352887. First, this is an early pandemic article from April 2020 dealing with the ethnic minority mortality rates in healthcare workers by Professor Cook and Dr Lennane. Have you had the opportunity of reading that before giving evidence today?
Professor Habib Naqvi: Yes.
Mr Marquis: Thank you. All of my questions really are on page 6. There are three key features of this research that I’m going to ask you to confirm from the research of course. Mortality rates up until 22 April 2020, 63 of the healthcare worker deaths were ethnic minority workers, is that right, on the basis of this data?
Professor Habib Naqvi: That’s correct.
Mr Marquis: Of that 63%, 83% at least were migrants. The figure there, if you’re got it in front of you, is actually 53 of the 64 deaths.
Professor Habib Naqvi: Yes.
Mr Marquis: But, of course, the status of the remaining 11 deaths was uncertain. So it’s at least 83% were migrant, would you agree with that?
Professor Habib Naqvi: Yes.
Mr Marquis: If you can turn over on to page 7, we can see from the break down of national mortality rates that 36% of those migrant deaths were workers from the Philippines?
Professor Habib Naqvi: Yes.
Mr Marquis: And that is, by far, the highest national mortality rate for migrant health workers in that set of data?
Professor Habib Naqvi: That’s correct.
Mr Marquis: So, bearing in mind we have ONS data that lacks migrant mortality post-2011 –
Professor Habib Naqvi: Yes.
Mr Marquis: – and we have early data that suggests very strongly, certainly in health workers, that migrants were bearing the brunt of the mortality, would you agree that ethnic minority mortality rates could have been significantly higher than those rates suggested by the ONS analysis?
Professor Habib Naqvi: That’s correct, yes.
Mr Marquis: Thank you very much.
Three quick questions now. As far as you know, is there any official data in respect of migrant mortality rates?
Professor Habib Naqvi: Not that I know of, no.
Mr Marquis: Would you agree that that is a data gap that needs to be filled?
Professor Habib Naqvi: Yes, absolutely.
Mr Marquis: Thank you very much.
Professor Habib Naqvi: For a number of reasons, if I may add.
Mr Marquis: Yes, please.
Professor Habib Naqvi: With the influx of nurses particularly in the NHS, coming from beyond Europe in particular, it’s critical that we – sorry, it’s critical that the NHS makes sure that the environments for those migrant staff are supportive, and that those individuals are engaged at all levels within the NHS.
Mr Marquis: Thank you, Professor. Final question. You’ve already told us when counsel to the Inquiry was asking you questions that there’s no inclusion of a Filipino category in equality monitoring in the current ONS. Would you agree that that exclusion also has to be remedied?
Professor Habib Naqvi: It would be as beneficial to have as many categories as we can, so that we can see trends and patterns in disease over time.
Mr Marquis: Thank you, Professor, and thank you, my Lady.
Lady Hallett: Thank you, Mr Marquis.
Professor, thank you very much indeed for your help. You have managed to make what for some people might be a dry subject obviously very informative and interesting. Thank you very much.
Professor Habib Naqvi: Thank you.
(The witness withdrew)
Lady Hallett: Right. I think it is Ms Hands next?
Ms Hands: Yes. My Lady, if I may call Mr Jonathan Rees.
Mr Jonathan Rees
MR JONATHAN REES (sworn).
Questions From Counsel to the Inquiry
Ms Hands: Hello, good afternoon, Mr Rees. You should have your witness statement in front of you, and our reference for that is INQ000492290.
Mr Rees, it’s correct that you are a pharmacist; is that right?
Mr Jonathan Rees: That’s correct.
Counsel Inquiry: And also a superintendent pharmacist for two independent family pharmacies?
Mr Jonathan Rees: That’s correct.
Counsel Inquiry: During the pandemic you also held the role of country manager for Wales for the National Pharmacy Association or NPA?
Mr Jonathan Rees: Correct.
Counsel Inquiry: You’ve described that role in your statement as representing the views of Welsh pharmacies to stakeholders on a UK level and ensuring NPA guidance remains appropriate for Welsh members. Is that an accurate summary of that role?
Mr Jonathan Rees: Yes.
Counsel Inquiry: Can you provide us with some examples as to how you gathered the views of Welsh pharmacies to fulfil that role?
Mr Jonathan Rees: Several methods, really. Obviously, during the pandemic it was more difficult but usually we would either have face-to-face meetings in the pharmacies, or by phone calls, emails and whichever technology we would care to use, really.
Counsel Inquiry: And so during the pandemic did you mostly rely on that remote technology to –
Mr Jonathan Rees: Almost 100%.
Counsel Inquiry: Sorry?
Mr Jonathan Rees: Yes, almost 100%.
Counsel Inquiry: I’m grateful. You have said in your statement that you heard, obviously, concerns and issues from pharmacists through that role. Can you provide some examples of the concerns or issues that you heard?
Mr Jonathan Rees: So the main issues would be revolving around staffing and skill mix to ensure, when staff were unavailable due to infection or having to isolate, how to appropriately either acquire locum staff, or how they can manage with the staff they have remaining, and also following guidelines in terms of things that are changing week to week or month to month, in terms of what is appropriate in how you run your business. And then else guidance how they may apply for certain grants that were available at the time, or certainly maximise the contract that was available within pharmacy to ensure they maximise the business potential.
Counsel Inquiry: Would you provide them with that information straight away, or would you take that back to the meeting, gather the meeting and then report it back to them?
Mr Jonathan Rees: It really did depend on the query. Many of them were repetitive, so I had the information to hand and we could just issue it, but it was something more nuanced, then I may have to defer to some colleagues who would be sort of more learned in that area.
Counsel Inquiry: How frequent were the meetings during the pandemic?
Mr Jonathan Rees: With?
Counsel Inquiry: The NPA stakeholder meetings that you referred to.
Mr Jonathan Rees: Daily, yes. So, certainly, earlier on, we had a daily meeting before working hours, or very early in the working hours to establish if anything had changed overnight or the following day, which I could then disseminate appropriately. But in terms of meetings with other stakeholders, it would be the frequency determined by them, but they were regular.
Counsel Inquiry: When you raised issues or concerns at those stakeholder meetings, did you feel that your contributions were listened to, and did they lead to any changes?
Mr Jonathan Rees: Certainly largely the vast majority of people were reporting the same issues. It was balancing workload, the pressures involved, the staffing pressures. So myself or my CCA colleagues, we would all be reporting largely the same information back into whatever stakeholder we were reporting to at the time.
Counsel Inquiry: When you say they all were saying the same, can we take it from that it was across the UK, not just in Wales?
Mr Jonathan Rees: I would say – I was only really exposed, in terms of the meetings I had, within Wales, but my NPA colleagues were – there were other regional managers across England we would all report in to, but largely the issues were pretty much the same.
Counsel Inquiry: Thank you. And did you feel that that role provided you with additional insight and resources during the pandemic that you might not otherwise have had access to, had you not had that role?
Mr Jonathan Rees: Absolutely. Learning off of other people is a key part of developing, and having the ability to see good ideas of how people are running their business certainly helped me in private enterprise.
Counsel Inquiry: I want to now move on to your role within your own pharmacy, if I may.
Mr Jonathan Rees: Sure.
Counsel Inquiry: You have – dealing first with the staff in your pharmacy, could you just set out for us what the make-up of staff was, the matrix, before the pandemic, and then at the start?
Mr Jonathan Rees: Sure. So before the pandemic it would be myself and my father as the pharmacist with a split week, pretty much, and then we have two checking technicians, and then around eight other members of staff, plus a delivery driver.
At the start of the pandemic my father had to isolate, which meant my wife came back from maternity, who is also a pharmacist, so she took over his portion of the week while I worked for the NPA, and two other members of staff had to – to isolate.
So then we took a decision with our workload, our team, to try and split into basically two teams within our pharmacy, with one coming in, out of hours to try and complete the bulk of the dispensing work, leaving the team who works during the day to deal with patient phone calls, patient queries, and the patients that come through the door. So that was quite an efficient way of working.
Counsel Inquiry: Did you bring that in quite early on in the pandemic, that way of working, or did that develop –
Mr Jonathan Rees: Within the first two weeks or so.
Counsel Inquiry: Is that a practice that you shared with others at those NPA meetings?
Mr Jonathan Rees: Yes, but it’s quite difficult to replicate. We were fortunate in, kind of, the pharmacists we had within the family and also the number of staff that we had who were available to work overtime who lived very locally and were happy to do it. So although we shared the information, it wasn’t easily replicated.
Counsel Inquiry: I think you have said in your statement that it was very frequent that you would be working overtime for long periods of time up to many hours a day?
Mr Jonathan Rees: Pretty much every day.
Counsel Inquiry: Is it correct that you also brought on two pharmacy students to supplement your staff?
Mr Jonathan Rees: Yes. So they are the students who would have been working through (sic) us through holiday periods. They were advised by their universities to not work during the pandemic, to keep to their studies, but as all of their work was done remotely they were happy to come in and work alongside us and then the following year we took on an additional student as well.
Counsel Inquiry: Was that through the apprentice scheme that you refer to in your statement?
Mr Jonathan Rees: No, that was a different member of staff again.
Counsel Inquiry: Okay, so you also brought on an apprentice through the government scheme, is that right?
Mr Jonathan Rees: Through the Kickstart scheme, yes.
Counsel Inquiry: And was that early on in the pandemic?
Mr Jonathan Rees: I believe that came in in 2021, I think.
Counsel Inquiry: You’ve have explained in your statement how the Welsh Government allowed pharmacies to close for up to two hours a day to process and dispense the increased volume of prescriptions and you have described that as invaluable.
Mr Jonathan Rees: Yes.
Counsel Inquiry: In terms of what you would do during that period of time could you just give us some insight as to what you would do?
Mr Jonathan Rees: Sure. So it basically allowed undisturbed dispensing. So there would be somebody labelling prescriptions followed by somebody collecting those labels, attaching them to the relevant boxes, dispensing, and then finally to checking and bagging that prescription without patients coming through the door or the phone calls, that could be as a production line and done as efficiently as possible without interruption. It just meant the volume you can dispense like that is astronomical compared to having your doors open and trying to deal with patients.
It also allowed us time to clean and reset the pharmacy, order the stock that we need, because our phone lines were constantly in use from patient queries, meaning phoning out to wholesalers was difficult.
Counsel Inquiry: And it may be obvious but to those of us that perhaps aren’t as familiar with the backroom of a pharmacy, how did that workload differ to before the pandemic?
Mr Jonathan Rees: So it was at least double for several weeks and then not far off that then for several months afterwards, and not only double in terms of the number of prescriptions through the door but also the number or medications on those prescriptions plus the dose frequency of them, or the dosing interval, so instead of supplying one month of medications we were being asked to supply three months of medication which then obviously meant that we needed to order triple the medication from our wholesaler which takes longer to go put away, to organise, storage becomes an issue. So we’re geared up for the volume – in an ideal world your pharmacy remains at a pretty constant level so trying to double or triple everything in a matter of days is very difficult to organise.
Counsel Inquiry: Do you think it was widely understood by members of the public why pharmacies had to close for that period of time during the day during the pandemic which obviously was different to before?
Mr Jonathan Rees: I believe so. Certainly where I’m based the public were very accommodating to us, understood fully what we were trying to achieve and that we were clearly working very hard to supply their medications. I’m aware of certain instances across Wales where that wasn’t the case or if the patients didn’t have the ability to return at a time where the pharmacy was then re-opened, that could be difficult, but in terms of personal experience our patients were wonderful with us.
Counsel Inquiry: I think it is right, as you said, the National Pharmacy Association in their statement to the Inquiry have referred to an increase in inappropriate behaviour from some members of the public due to frustration around waiting times increasing and supply of medications to the extent that some pharmacies had to recruit volunteers to act as security or introduce body cameras to protect their members of staff.
So although you didn’t experience that in your community, were you aware of that happening in other areas?
Mr Jonathan Rees: Yes, they did tend to be in more urban areas but certainly even in localities close to where I’m based that was happening largely because some people were in queues for two to three hours and then they would get to the front of the queue and the stock wouldn’t be there. It inevitably led to frustration.
But that’s where, in our case, trying to do that dispensing overnight, we tried to mitigate that as much as possible but, as I say, it is not always viable for everyone else to do likewise.
Counsel Inquiry: I think you’ve said in your statement that that was also impacted by the reduction of in-person contact across primary care in general, so GPs for example?
Mr Jonathan Rees: Yes. Inevitably it meant, to use a phrase coined by the NPA, we did have to become quite literally the front door of the NHS. We were triaging patients that we wouldn’t really otherwise see in a pharmacy environment, and we had no real control of those patients coming into us, whether they had Covid or not. It was impossible for us to ascertain that. But it just meant we were trying to direct those patients as best as we could to the most appropriate care provider at the time.
Counsel Inquiry: Was there guidance produced for pharmacists in order to help them with those changes in practice and care pathways?
Mr Jonathan Rees: Not particularly because the variability of what you may see, the vast majority would be those we would refer back into our primary care colleagues for them to deal with either remotely or in person, if it was that serious. But it’s essentially just an extrapolation of the job we would do normally, just times, multiplied several times.
Counsel Inquiry: I want to ask you briefly about some feedback that the National Pharmacy Association received from discussions with its members during March and April 2020.
So if we could have on screen INQ000340104.
So this is following extensive discussions and feedback and the NPA believes that the number of prescriptions dispensed went up 25 to 35% from February to March 2020, home deliveries more than doubled with some pharmacies reporting an increase of 300%. Phone calls to pharmacies more than tripled. Many pharmacies were experiencing long queues. All the pharmacies reported a big increase in working hours often requiring the hiring of locum staff to meet workload.
Some of those echo the experience that you had in your pharmacy. Were you aware of the others experiences that are expressed here also happening in Wales and across the UK, if that same up in your NPA role?
Mr Jonathan Rees: Yes, I would imagine almost every pharmacy would have the same story as this.
Counsel Inquiry: And did this level of demand continue throughout the pandemic?
Mr Jonathan Rees: Largely. Obviously, the initial flurry was noticeably different but certainly up until kind of the autumn period it remained very busy and then winter pressures kicked in shortly after which also, sort of, increased workload and then we were into obviously vaccination season also, which was then difficult to manage on top.
Counsel Inquiry: Which actually brings me to my next question which is whether you were involved in the vaccine roll-out?
Mr Jonathan Rees: Yes, we were one of the first within Swansea to offer Covid vaccinations.
Counsel Inquiry: Did you receive any support from the government or public health bodies for that additional workload?
Mr Jonathan Rees: So the Health Board were very good at organising the patients, giving us the flow, the – kind of the timetable for all the patients and they were organising all of the appointments and they were very good at that, to be fair. But that was kind of the limit of the input from them.
Counsel Inquiry: What measures did you implement locally to meet that additional workload?
Mr Jonathan Rees: So we had four vaccinators trained on site for ourselves. We, at that point, were able to incorporate the two teams into the same day but we would have one, sort of, set of vaccinators and team organising those who were arriving for vaccines and then the remainder of the team with the normal pharmacy functions.
So we tried to separate the business into two within the same premises so that the vaccinations didn’t interfere with those coming in for prescriptions.
Counsel Inquiry: Moving on to the topic of the supply of medicines and delivery of medication, you have described in your statement how before the pandemic you would be undertaking medicine deliveries approximately every two and a half days a week and that during the pandemic that increased to six days; is that right?
Mr Jonathan Rees: Yes. Yes, it was almost always – well, it was always five days a week and then six most weeks.
Counsel Inquiry: And is it also correct that that service, that home delivery service is not funded, so your business had to absorb the cost of that?
Mr Jonathan Rees: That’s correct.
Counsel Inquiry: How did you manage to meet that demand?
Mr Jonathan Rees: With difficulty, in all honesty.
So one of the benefits of being a pretty small business is our agility and ability to respond so as soon as we realised the demand was there, within two days we’d employed a new delivery driver, we were up and running five days a week and then at pinch points up to six, and then also on the weekends my wife and I would be delivering ourselves to try and meet demand.
Counsel Inquiry: And it’s right, isn’t it, that pharmacies were also asked to deliver medications to the shielded population?
Mr Jonathan Rees: Correct.
Counsel Inquiry: And the NPA told the Inquiry they worked with the Welsh Government to enable software to support that delivery of medications. Did you benefit from that?
Mr Jonathan Rees: We didn’t use it personally but many within Wales did use that, particularly for new patients it allows GPS tracking of where the medication is going. It was largely rolled out for those using a volunteer system to deliver medication so that they would know where to drop the medication, they could take a photo of where it was delivered and as we weren’t using signatures at the time, it allowed a timestamp delivery of where that medication was left.
Counsel Inquiry: So did you benefit or use – or make use of any other support that was available to you, financial or otherwise, to provide that additional service?
Mr Jonathan Rees: Not in terms of delivery, no.
Counsel Inquiry: It’s correct that there were shortages of medications early in the pandemic which you have described as being partly due to a panic amongst patients?
Mr Jonathan Rees: Yes.
Counsel Inquiry: How did you in your pharmacy mitigate against those stock shortages and can you provide some examples of the type of medications that were in short supply?
Mr Jonathan Rees: So the vast majority at that point were inhalers and asthmatics or COPD patients seeking to attain additional inhalers, and also paracetamol became an issue as well for quite a spell.
So in terms of mitigation what we would attempt to do, as many prescriptions at that time were changed from 28-day prescribing interval to 56 or 84, so we would firstly try to ensure that everybody received one and then work our way from there, if we had sufficient, to give them the balance.
Many patients – not many – but we did have incidences where we would issue medication to people and they would then turn round and say, well, I have already got two or three but I thought I better get an extra one, and that became a frustration but there was no way to control that. You were just relying on patients being fair to their – society basically.
Counsel Inquiry: The NPA also conducted a survey at the end of 2020 in November in regard to the medicine shortages and at that time it was reported that 50% of respondents were spending between one and five hours sorting medicines and 40% were spending up to ten hours, in some cases over ten hours. Is that an experience that you had or you were aware of others having?
Mr Jonathan Rees: Yes, certainly some weeks were worse than others. We spent the majority of the first six weeks, as the pandemic hit, trying to open new accounts with new wholesalers to try and gain a wider access to the market as possible. So that took several hours to arrange. That’s something that’s not always available to a lot of pharmacies, particularly rural areas, they wouldn’t be able to gain a new supplier, and also you have to meet minimum spend thresholds which, if you are quite a small supplier you wouldn’t be able to do so, and trying to then manage your stock with limited supply is difficult, but we certainly spent many, many hours trying to find stock and then find it at a reasonable price also.
Counsel Inquiry: I think you have also described how it was very time-consuming speaking to not only patients and trying to explain to them the situation, but also to GPs as well about alterations to prescriptions. So that was in addition to the workload; is that right?
Mr Jonathan Rees: That’s correct.
Counsel Inquiry: The NPA have referred to the use of government-issued serious shortage protocols authorising pharmacists to supply alternative medicines if one was unavailable that had been prescribed. Were they used in Wales as well, to your knowledge.
Mr Jonathan Rees: At that time they were the exact same, yes.
Counsel Inquiry: And did you use them?
Mr Jonathan Rees: It would be an automatic process if that medication became an SSP then it would automatically be relevant and generally those that fall into that category are used in pretty much every pharmacy.
Counsel Inquiry: Were they helpful in managing?
Mr Jonathan Rees: To a certain extent. So it allowed you then to know an increased price for which you could purchase the product for, and give you some – there was a tolerance then built into what you could pay. Whereas, otherwise, you would be dispensing that at a loss, which basically means that the business is funding the supplier of that medication to the patient, not the Health Service.
Counsel Inquiry: I want to move on to the topic of Infection, Prevention Control and PPE. You’ve said that there were multiple times when guidelines were unclear, or Welsh guidelines differed from the UK. Can you provide some examples of when that occurred?
Mr Jonathan Rees: I was trying to think of some exact ones earlier and they have become hazy as time has gone on. A lot of the ones which stick in my mind are the distances people are allowed to travel. Certainly, as we moved through the pandemic, there was variation in how far you were allowed to leave from your location. So we cover an area which would go sort of nearly ten miles sort of west and then likewise east, so those patients may not then feel confident that they are close enough to travel to us, or leaving their immediate area.
And, also, there were some discrepancies, I believe in the social distancing requirements at various points as well. But for further examples, I would have to research a bit more.
Counsel Inquiry: That’s okay, thank you. Was that discussed during the NPA stakeholder meetings that you attended?
Mr Jonathan Rees: Yes, yes. So that would mean we would try to tailor the communications we would send across the four nations, we would try to tailor them appropriately for the nations, or to phrase them so that they may catch-all.
Counsel Inquiry: Were there any problems interpreting, for example, physical distancing, or the spaces between –
Mr Jonathan Rees: That was our biggest issue in terms of – I don’t know pharmacy spaces you’ve been into but they’re generally quite small environments, so when you are trying to fit, perhaps, six people into areas that are quite small, maintaining that social distance is then an issue. And it’s unreasonable to then be able to work in that environment, with those distances, so trying to cut the number of stuff there in the day is also difficult because you can’t then manage the same workload. So finding that balance was an issue.
Counsel Inquiry: How did you try and achieve that balance?
Mr Jonathan Rees: By splitting the teams in two.
Counsel Inquiry: Okay.
Mr Jonathan Rees: Yes.
Counsel Inquiry: So were there any changes in the actual physical pharmacy pathway, so the way that you went in or anything like that?
Mr Jonathan Rees: Yeah, so we taped areas off so each section would be where somebody would – so if they were working at a computer station to label, then they would be within a certain taped area. If they were then dispensing for deliveries, they would be in one area, or dispensing for collections in another area, to try and segregate you into a zone. It wasn’t perfect because not everything within a pharmacy exists in that zone, but as best we could.
Counsel Inquiry: I think the Welsh Government made available funding of £300 on 1 May 2020 to implement perspex screens.
Mr Jonathan Rees: Yes.
Counsel Inquiry: Did you use that funding or had you implemented them before that?
Mr Jonathan Rees: Yes, it was an automatic payment that everybody received, so before then we were already trying to segregate as best we could, and certain companies, did offer the perspex screens. They were generally more expensive than £300, but it was appreciated, the effort.
Counsel Inquiry: Did community pharmacies in Wales have access to Covid-19 testing for staff?
Mr Jonathan Rees: Yes. It wasn’t immediate, I don’t believe that we were on the priority list, but it was fairly shortly after that we were included in that.
Counsel Inquiry: Can you recall when?
Mr Jonathan Rees: Not off the top of my head, unfortunately, but there was a period where, if you did test, anyone in the pharmacy did test positive, that the entire team would need to isolate. But as we became part of the priority list, that meant that only that person unless the others tested positive.
Counsel Inquiry: Yes, I think the NPA have explained that in their statement that the categorisation of community pharmacies initially as a retail setting –
Mr Jonathan Rees: Yes.
Counsel Inquiry: – meant – so not healthcare?
Mr Jonathan Rees: Yes.
Counsel Inquiry: – meant that an entire pharmacy team had to self-isolate following one positive test in the pharmacy, and close contacts –
Mr Jonathan Rees: Yes.
Counsel Inquiry: – had to be isolated as well. And so did that impact on your work force?
Mr Jonathan Rees: Luckily no, but I am aware of about three instances that I was covering in Wales where the pharmacies had to close for a period as a result of that.
Counsel Inquiry: Was that discussed during the NPA meetings that you attended?
Mr Jonathan Rees: Yes.
Counsel Inquiry: Can you recall when the change was implemented, it’s not a problem if not.
Mr Jonathan Rees: I can’t. Sorry.
Counsel Inquiry: And you’ve said in your statement that during the first month of the pandemic, you had to source your own PPE as there was no access to the national supply; is that right?
Mr Jonathan Rees: That’s correct.
Counsel Inquiry: Could you perhaps just explain to us how you went about obtaining PPE during the early stages of the pandemic?
Mr Jonathan Rees: So the best offer we received at the time was from our – one of the local comprehensive schools, where the design and technology teacher created their own plastic face masks, which they then issued to pharmacies locally and, you know, we applaud the effort. It was marvellous that someone put the effort in, but being what they were, they weren’t really conducive to wear for eight hours in a day, or particularly fit for purpose obviously moving forward, but they were the best that we had at the time.
Counsel Inquiry: I think you have described in your statement the inability of obtaining antiseptic hand gel during the early months as well and resorting to creating your own product; is that right?
Mr Jonathan Rees: Yes, it was the only real option at the time. So WHO released their manufacturing of how to create your own hand gel, so we, my wife and I, we created our own for use for pharmacy staff and patients as they came in.
Counsel Inquiry: Did that continue throughout the pandemic?
Mr Jonathan Rees: No, we did that for about two months, and then I had a discussion with a local brewery who were interested in doing likewise. So I discussed with them how to proceed with that, and then we became their first wholesale customer, and they’ve done very well, as a result. They now sell it in Harrods and places like that, so …
Counsel Inquiry: And when did have access to the national supply of PPE, was that supply consistent and suitable for your staff?
Mr Jonathan Rees: So by the end of May into June, the Health Board had taken over the supply of PPE where they would send a box a week of what you would need, and at that time, that was sufficient. You could request extra of certain particulars if you needed to. And from that point on, it was fairly well controlled.
Counsel Inquiry: I want to ask you some questions now about financial support from the Welsh Government. Did you experience or hear from NPA members about the financial impact on pharmacies, in particular, in the additional costs and expenses that were incurred during the pandemic?
Mr Jonathan Rees: Hugely. That was a large part of most conversations. So in terms of how pharmacy works, any work that we do, say, in this month, you’re not paid until three months later, but your wholesaler bill is due 30 days later than today. So there’s that gap between when we have to repay the wholesaler to when we actually get paid.
In a general month, that’s fine because you’re constantly being paid for what you have previously done, but if your workload were to double or triple in a certain month, you would need to be able to find that money within 30 days rather than wait for when you are reimbursed for the work that you’ve done.
So that became a real issue for people into April, start of May, before they got reimbursed then in June for what they had done.
Counsel Inquiry: The Welsh Government in particular announced support for small Wales-based businesses. Did that provide any relief during that period?
Mr Jonathan Rees: So there was an easily accessible £25,000 grant, which was very welcome at the time, because it was something that you could get hold of fairly quickly within a matter of two to three weeks, and it had no real strings attached to it, which was excellent.
Then there was also the Covid advance payment from Welsh Government, which gave you an average of your last three months’ NHS payments to be paid into your next monthly account, which I think came in the, I want to say the May payment of that year.
Counsel Inquiry: 2020?
Mr Jonathan Rees: Yes.
Counsel Inquiry: Thank you. The Inquiry understands that pharmacists did not initially have access to the government life assurance scheme which was introduced for frontline staff. Was that the case in Wales as well?
Mr Jonathan Rees: Yes, that was the same.
Counsel Inquiry: And they were eventually included. Did you play any role in advocating for their inclusion?
Mr Jonathan Rees: No, so my NPA colleagues managed that, on a UK-wide – well, England and Wales basis. I wasn’t required on that. I fed in views from Wales, but broadly speaking, a lot of members, I don’t think, had noted it at that time.
Counsel Inquiry: So I was going to ask you, but – what was the impact on either your staff or members, but is it that there wasn’t particularly an impact that you were aware of at the time?
Mr Jonathan Rees: Yeah, not noticeably. There was relief when they were incorporated, because that became publicised, but it wasn’t publicised initially that pharmacists weren’t included, so unless they looked for the information, they wouldn’t have known.
Counsel Inquiry: I see.
Then the same was the case in terms of key worker status. Pharmacists weren’t granted that. What impact did that have on your staff or on NPA members that you were aware of?
Mr Jonathan Rees: So it meant delays or difficulty in basic items like food shopping, things like that became an issue. And just allowing extra time to be able to do that, and for certain members of staff childcare was also a key component to allow your child to go into school, or into a childcare facility whilst you worked. It was prohibitive to some of them working. Luckily, in terms of my personal staff, if – one of the two would have been home to look after the staff at that time – to look after the child at that time. Apologies.
Counsel Inquiry: You’ve described at the end of your statement the importance of pharmacies during a pandemic, and how you had hundreds of new patients that you served during that period. Can you summarise that importance for us?
Mr Jonathan Rees: Yes, with difficulty. I think the value of pharmacy prior to Covid, I don’t think it was completely understood or realised by the population at large how we have the ability to walk in to see a healthcare professional, to obtain advice from trained staff, and receive the medication that you need promptly. So having the focus on what pharmacy can offer has been very good for the sector on a public facing level. But I think, as you can see from how we are dealt with nationally, that perhaps – the workload that’s involved is not realised in terms of revenue or profits because since Covid, even though our workload has increased astronomically, you are still seeing four pharmacies a week closing, which is reflective of the revenue that you drive for the work that you do actually undertake.
Counsel Inquiry: Finally this, Mr Rees: can you describe for us the personal impact on you and your staff and any views of NPA members as well the impact that has had on you?
Mr Jonathan Rees: From a personal point of view, sort of led me to a love of pharmacy that I didn’t quite realise I had before, and I found great satisfaction in my job which wasn’t quite there before. Not that I disliked my job, but being able to serve the volume of people, to be able to help the new patients and be a reliable source of information for patients was quite, I don’t know how to phrase it, but it’s something I’m quite proud of from our time there.
The staff, likewise, the way we came together as a team, it’s – we showed a resilience and an agility as a business to react to what is an unprecedented situation.
Likewise, across the network. The whole pharmacy network really did stand up to what was thrown at it.
My concern is that moving forward, I’m not sure that same resilience will be there, purely from closures and fragility of the network. If it were to happen again, I’m not sure the pharmacy network would stand up quite as well as it did the first time.
Ms Hands: Thank you.
My Lady, I don’t have any further questions.
Lady Hallett: And I don’t think there are any –
Ms Hands: There aren’t.
Lady Hallett: No.
Thank you very much indeed. I’m really grateful to you. I for one certainly appreciate the work of pharmacies – apart from the fact my brother was a pharmacist, so I probably ought to declare an interest – but you worked enormously hard to look after your local communities, so thank you very much indeed for everything that you did, for your colleagues around the UK did. And if I may say so, the area of Swansea seems to be very well served by you.
Mr Jonathan Rees: Great. Thank you.
Lady Hallett: Did the family – you said your wife was on maternity leave. Then you ended up taking her back to work?
Mr Jonathan Rees: Yes. So she came back from maternity early to cover the earlier part of the week while I worked for the NPA. In many ways – so it meant that I was working from home for the NPA but also in charge of our three children, all of which were under 4.
Lady Hallett: Ah.
Mr Jonathan Rees: So in some ways being in work was easier. It was a busy time.
Lady Hallett: I know that feeling as well. Thank you very much indeed for your all help. I’m really grateful.
Mr Jonathan Rees: Thank you.
(The witness withdrew)
Lady Hallett: That completes the evidence for this week.
Ms Hands: It does, my Lady.
Lady Hallett: That completes part 1.
Ms Hands: It does.
Lady Hallett: So congratulations to everybody for getting all the witnesses through and I shall sit again in relation to this module on 28 October at 10.30.
Ms Hands: Grateful. Thank you.
(3.10 pm)
(Hearing adjourned until Monday, 28 October 2024)