8. Submission by Mr Burton, KC

Mr Burton: Good afternoon, my Lady. I appear today on behalf of the Disability Charities Consortium, instructed by Anne-Marie Irwin at Rook Irwin Sweeney, a firm with a long established reputation for representing disabled people. The Consortium is a coalition of disability charities in the UK, consisting of: the Business Disability Forum, Leonard Cheshire, MENCAP, Mind, the National Autistic Society, Royal National Institute of Blind People, Royal National Institute for Deaf People, Scope and Sense.

The Consortium, the DCC I shall call it, has been in existence for over 15 years, reaches a large majority with 14 million disabled people in the UK. Its member organisations address the broad range of issues that disabled people face and, indeed, during the pandemic the DCC met regularly with the disability minister, the Disability Unit in the Cabinet Office, and indeed with the Prime Minister’s office.

I’m also very recently instructed by one particular member of the DCC, which is Mind, who have been given CP status in their own right.

When in my submissions I refer to the DCC, my Lady, that includes Mind, and if I do mention Mind specifically it does not mean the DCC does not agree, it is just that was a point specifically taken by Mind.

My submissions will cover four topics: (1) why is the DCC involved in the Inquiry, from its perspective; (2) three overarching points made by the DCC; (3) the agenda items for today, which I will take very briefly; and then finally, cross-cutting issues.

My Lady, by combining the submissions of the DCC and Mind I hope to take only 15 of my allotted 20 minutes, and, as we all know, counsel’s self-proclaimed time estimates are always reliable …

So why is the DCC involved in this Inquiry? Well, of course, disabled people’s healthcare needs and their access to appropriate and necessary healthcare during the pandemic would have been of high level importance to the DCC in any event. But what we know is this, that one in five people in the UK are disabled, 14 million people as I mentioned a moment ago, but astonishingly three in five of those people who sadly died because of Covid-19 were disabled people. Three in five, my Lady.

Moreover, the disparate impact on the pandemic on disabled people was not limited to mortality, restrictions generally and specifically restrictions on healthcare services for non-Covid related health needs had a particular adverse impact on those with physical and mental impairments. By way of one example, Mind state in their written submissions that it provided a helpline during the pandemic – indeed, throughout the pandemic and before and since – during which they supported nearly 130,000 people in one year alone, a record amount of contacts, that had been rising rapidly during that period. There was a marked increase in the level of distress displayed by the beneficiaries of the hotline, including many citing that they had been unable to access services.

My Lady, there are doubtless other examples, myriad examples indeed, of disparate impact on disabled people during the pandemic, and it will be one of the main purposes of your Inquiry to understand the extent of those disparate impacts, and indeed their causes, a matter to which I shall return at the end of my submissions.

Topic 2, my Lady, the DCC’s overarching points. Now, there are three of these. They are made in our written submissions, but if I may I am going to briefly touch on them orally now because they are of such significance we say.

First, without detracting from its significant role and representative capacity described above, the DCC and its members do not purport to speak exclusively on behalf of all disabled people. Indeed, it would be a mistake to treat disabled people as a single homogeneous group with the same interests and points of view. The DCC therefore promotes as equally valid the autonomous voices of individual disabled people, and believes that their experiences should be prominent in the Inquiry. Similarly, the DCC recognises the distinct perspective and important role of disabled people’s organisations.

My Lady, you will know that for the purposes of indirect and disability discrimination outlawed by the Equality Act 2010, to share the protective characteristic of disability is to share the particular disability of the person discriminated against. Conversely, the duty on public authorities to make reasonable adjustments to remove disadvantages is an anticipatory duty and applies to all mental and physical impairments. That’s an important distinction that this Inquiry must be sensitive to during its work and in particular when looking at inequalities.

I just take that moment also to agree with the submission made by other CPs that it would be preferable if the Inquiry could use person-first nouns in its work, so, for example, “disabled people” rather than “the disabled” or “older people” rather than “the elderly”.

The second overarching point is that there is a risk in the Inquiry and in Module 3 in particular of eliding disability with ill health or medical vulnerability, and thereby assuming that because Module 3 is concerned with healthcare it is ipso facto addressing the needs of disabled people.

This would obscure the necessary focus on the social model of disability which holds that people are disabled by barriers in society and not by impairments or medical needs, and narrow unduly the scope of the module to the exclusion of the rights of disabled people? Even in a pandemic the interests of disabled people are broader than the universal right to healthcare.

My Lady, the finally overarching point concerns reasonable adjustments and accessibility for the Inquiry generally. I can take this very briefly. The DCC has previously set out recommendations to your team in relation to reasonable adjustments. I know that similar ones have been made by other groups, including the Long Covid group, and I endorse the comments made by Mr Metzer King’s Counsel this morning in that regard and also welcome Ms Carey’s indication that the Inquiry team have looked at the suggestion about people who are incapacitous being able to participate in the Listening Exercise, in particular.

My Lady, then moving to my third topic, the agenda items, which I hope to take fairly briefly. Like all the other CPs, of course the DCC intends to work as hard and as quick as the Inquiry team, as best it can, and as a friend to the Inquiry, if albeit a critical friend at times. If I can just take, though, the particular topics that have been raised and just make a couple of observations. The first is designation of Core Participants. Mind, in particular, highlights the lack of any representation of gypsy, Roma and traveller groups in this module and regrets that. It’s a particular concern for Mind because the evidence, such as it is, is that the health disparities for that particular group are particularly acute. For example, they have a much higher rate of suicide than non-GRT groups.

On the question of scope, there are, we now count, at least three as soon as possibles. We are going to have clarity regarding future modules, a list of issues for Module 3, and doubtless further information about the specialist areas that have been identified by your team in the provision of expert advice. Of course we look forward to all of those. We just make two related points about scope at this stage.

Mind say that mental health specifically should be mentioned within the scope for Module 3. Mental health services have been long recognised as Cinderella services in comparison to those addressing physical impairments, and indeed Mind has suggested that Covid-19 has created a secondary pandemic of poor mental health. They point out that mental health services are provided in a multitude of different settings not limited to hospitals or GPs and “as such the generic reference to healthcare may simply not be recognised by many people as including mental health or psychiatric care”.

Related to that is Mind’s astute observation – I can call it that because I didn’t draft their submissions – is that particularly when looking at the impact of Covid-19 it will be important for this Inquiry to understand how voluntary services fared. We heard from counsel the Inquiry this morning that Module 3 will only be looking at the NHS as the provider of mental health services. We believe that would be a relevant and significant omission. Mental health services, in particular, are very reliant on third party provision, not least because of the dearth of provision available in the mental health system. It wouldn’t take a lot of time but it would be a very important facet of the overall investigation of the impact of Covid-19 on the provision of healthcare in the UK.

The next topic is evidence. On this issue I can’t really improve on the submissions of my learned friends this morning or indeed in their written submissions. A number of just very short observations. We note that NHS England has taken a rather optimistic view about how experts and letters of instruction will work. I’m sure that’s not intended as a form of reverse psychology on the team, but we very much endorse that observation and hope it transpires to be correct. It’s premised on CPs having enough time to consider experts, albeit that they won’t actually be able to input on the letters of instruction.

On the Rule 9 issue, we are again aligned with the other CPs in terms of our view that the concerns about micromanagement effectively by a committee of CPs in terms of Rule 9s is probably overstated and it’s very difficult to see how participants can assist the Inquiry adequately without sight of the Rule 9s, and I can’t, as I say, really improve on Mr Straw’s observation that he made a moment ago. If we have to spend time deducing what has been asked from what has been said then that, of course, is time not spent otherwise helping the Inquiry.

There is also the point made by a number of others that we should perhaps have more time to make submissions for hearings. That’s something again the DCC would agree with. My Lady, it won’t be lost on you that there’s a common theme to all of these, which is time. It’s true, of course, that lawyers always want more time, but please ignore their pleas, or put them to one side. It’s really about the clients here and, in particular, the DCC is nine large institutions trying to formulate responses to these very important issues that are raised. A bit more time would help the DCC provide a more focused response and thereby assist the Inquiry further.

So moving on then, finally, to my last topic, which is cross-cutting or overlapping issues. I had initially considered it necessary to address you on three of those. I’m still going to do that but I think the first two can now be taken very quickly because it does seem that the DCC is largely – well, CTI and DCC largely see matters in the same way. The first is about the care sector and care homes and the question should Module 3 examine the highly controversial and tragic handling of the discharge of patients from hospitals to care homes, an issue you will understand, my Lady, of very considerable importance to DCC.

It is plainly right that discharge decisions, as they were being made by healthcare providers and not social care providers, should be squarely within the scope of Module 3. But the Inquiry should probably stop at that point.

We agree with the submissions made by bereaved families that we mustn’t allow, as it were, inadvertently the issue of care homes to be dealt partially in Module 3 and then partially in Module 4. It must be given its proper place in Module 4. What we have to do obviously is just have a clear and logical division between Module 3 and Module 4.

I am calling it Module 4. That might be somewhat optimistic, maybe it’s not going to be Module 4! But insofar as care homes is the next module or another module, then of course ensuring we’ve got that clarity is important, and we were encouraged by counsel to the Inquiry’s submissions this morning about how that delineation between healthcare and social care should work.

Second one, similarly on devolved issues, Bereaved Families Cymru made a submission. You have already heard responses to it this morning. We agree with counsel to the Inquiry, it is not necessary to have separate modules to look at the devolved nations and indeed the capacity to make comparisons may lost by a sequential examination of the devolved areas. You would then have to come back and have some kind of wrapping-up further module. We don’t think that’s necessary.

I would just highlight, however, that the DCC has raised in its written submissions a concern about where and at what point the Inquiry will consider “poor co-ordination of healthcare services across the borders of the devolved administrations”. And if necessary that might be something that we would seek to raise as an addition to the scope of Module 3 if it wasn’t otherwise clear that that would be dealt with during Module 3 subject to its current delineation and scope.

So that just leaves me to the last point, which is, in my submission, the chief cross-cutting issue in the Inquiry, which concerns discrimination. My Lady, you have placed equality issues that forefront of your Inquiry. It’s easy to understand why. It’s incontrovertible and, to a certain extent, well known, although perhaps not as well known as one might expect, that Covid-19 had disparate impacts on people who share particular protected characteristics. True it is that the impact of Covid-19 on those people who share that protected characteristics is to be the subject of a future module, and doubtless the specific disparate impact on disabled people, for which my clients are concerned, and people of specific ethnic backgrounds, again an issue raised specifically by Mind, will be identified, measured and explored extensively within that module.

But, my Lady, what of the causes of those disparate impacts? Why did they happen is the critical question for this Inquiry. The impacts themselves may be reasonably well known but they are not well understood. To the extent that the cause or causes of those disparate impacts is to be found in our healthcare systems, then those must be firmly within scope in Module 3. The Inquiry must therefore be vigilant to ensure that when seeking, commissioning and listening to evidence in Module 3, it has its eyes and ears wide open and proactively seeks to justify potential causes of disparate impacts.

The imperative to come back to the causes after we have heard of the impact in a later module may be compelling but the opportunity to do so effectively may have been lost by then.

A related point on this concerns the state of healthcare systems at the outset of the pandemic. Identifying causes will inevitably involve the question of whether those disparate impacts were the result of decisions or failures to act that pre-dated the pandemic or acts or omissions made in the face of the pandemic, or perhaps as is more likely a combination of the two.

This must mean that the comment made by counsel to the Inquiry at paragraph 34 of the written submissions must be treated with caution. It is said there it is not part of the Inquiry’s terms of reference to consider the state of healthcare systems in the United Kingdom prior to the pandemic save where necessary to understand how the pandemic impacted on healthcare systems.

It’s our view that that exception is so large as to almost eliminate the first premise. It will be necessary, in our submission, for the Inquiry to understand what the state of play was coming into the pandemic.

Ms Munroe this morning on behalf of the bereaved families set out very eloquently, in our submission, the relevance of structural racism. We would endorse those submissions and repeat them and make the same in relation to structural ableism. You may have noted, my Lady, it took a very well known Radio 1 DJ, Jo Whiley, to highlight, for example, the clear discrimination against the learning disabled in the context of healthcare in 2020 and 2021. It really does beg the question, why did it require a high profile celebrity and a media campaign to bring that issue to the attention of the public and eventually, indeed, policy makers?

Just finally on that point about the state of healthcare pre-pandemic, the DCC agrees with the submissions made by the TUC and NHS England that, in fact, the premise is probably incorrect. Preparedness, initial capacity and resilience are all within the terms of reference for the Inquiry and, as such, the state of healthcare systems at the outset of the pandemic are squarely within scope and should remain there.

My Lady, just by way of reassurance, this would involve no radical departure from what we intend to consider in Module 3 in any event. Two examples: first, triaging of care, which has been identified by bereaved families; and the identification of the clinically vulnerable, which Mr Wagner has just been addressing. Two matters already within scope but clearly questions arise: what role did triage and the identification of clinically vulnerable people have on the demographic break down of those affected by the virus?

Those are points developed further in our written submissions but I make them now just to point out that really it’s not a radical departure to examine causation of disparate impacts in Module 3 if we’re already looking at those issues.

We are reassured that this morning counsel to the Inquiry, Ms Carey, said that the Inquiry will look that impact of cancellations and delays on patient care and any equality issues that arise therefrom. That does appear to be an indication that the submission I’ve just outlined a moment ago is likely to be endorsed by the Inquiry and, if that is so, of course the DCC and Mind would be very happy.

There is just one final point to make about this, another compelling reason why equality should remain squarely in scope and causation in Module 3. Sir Martin Moore-Bick in the Grenfell Inquiry decided to reverse his previous decision, or previous course, and resolve the question of whether or not the refurbishment of Grenfell Tower had been compliant with building control in his phase 1 report. He did that partly because it was an issue of such importance that an opportunity to consider it early was too important to miss, and it could be done. We say exactly the same thing here about equalities and causation.

Indeed, my Lady, you have identified and reaffirmed your commitment to making interim recommendations where appropriate. This may be an area in which the use of that power could be of very great effect. If you identify causes in our healthcare systems of disparate impacts, then necessarily you will wish to consider whether something should be done about that now rather than waiting until later.

That may, of course, benefit many people who have otherwise been the unremitting victims of this terrible virus and pandemic.

My Lady, those are my submissions on behalf of the DCC and Mind, unless I can assist further at this stage.

Lady Hallett: No, thank you very much indeed, Mr Burton. I welcome very much the offer from your lay clients of being a friend, albeit on occasions a critical one.

Can I just ask that any criticism, should it be forthcoming, is as constructive as your submissions have been today. Thank you very much.

Mr Burton: Thank you.

Lady Hallett: Right, Ms Gallagher.