3. Submissions on Behalf of John’s Campaign and Care Rights UK by Mr Straw KC

Mr Straw: My Lady, I represent John’s Campaign and Care Rights UK.

I’d like to start by reading some excerpts from two letters. The first is from Mrs Jenny Davies about her husband Meirion Davies to the First Minister of Wales and Mr Gething on 28 September.

(Pause)

Mr Straw: Thanks very much.

The first letter is from Mrs Jenny Davies about her husband Meirion Davies to the First Minister and Mr Gething on 28 September 2020. She says:

“Do you know when I can see my husband in his nursing home again? I have achieved one 15-minute indoor visit in six months. At the moment there are no visits allowed because of lockdown. How would any human being like it if they received a phone call which in effect meant ‘Sorry, you can’t see your husband any more, and we’re keeping him locked up here’. Baroness Ros Altmann, member of the House of Lords, had the courage to say on television recently that loneliness and starvation would be more likely to cause death than Covid-19. A great many people agree with this. The government really needs to listen to John’s Campaign and authorise one family caregiver to have the right to visit and to be recognised as a key worker. Care home residents are being kept like prisoners and being denied their human rights.”

That’s from Mrs Jenny Davies’ letter in 2020.

On 22 May 2022, a coalition of 60 MPs signed a letter produced by Care Rights UK and John’s Campaign referring to the devastating harm and harrowing experiences which the restrictions were continuing to cause for those in care. Still, nearly two years on, the problem identified by Mrs Davies hadn’t been properly addressed, and the letter maintained the call for a right to a care supporter, in other words a family or friend to provide care.

My Lady, I start with those two letters because we respectfully submit that the Inquiry should focus on people, the individuals who were affected by the pandemic. Core decisions are only significant when they impact on people, and it’s important that those decisions are seen through that lens. In this context, we warmly welcome the fact that this module has started with a video of the experiences of individuals affected by the pandemic.

The two letters also illustrate several themes which I’d like to come back to. For example, for those needing care, the Covid restrictions caused severe and disproportionate indirect harm. There was a failure by core decision-makers to take it into account and, more broadly, to take proper account of input from stakeholders. There was also a failure by core decision-makers to adjust restrictions in light of that indirect harm.

My submissions focus on people needing and providing care. Now, that’s not just those in care homes, it’s also people receiving care at home, in hospitals, in mental health units, or otherwise. It’s not just the old, but it’s also young people who are in need of care as well. And we focus on care in part because it’s a useful context to illustrate the broader problems in core decision-making. But we also focus on care because this group really was at the sharp end of the pandemic. It perhaps suffered more than any other group as a result of Covid and the response to it.

That’s supported by statistics, for example, those which we set out at paragraphs 5 to 8 of our written submissions. For example, in the first three months of the pandemic, 39% of deaths in the UK were of care home residents. Many more were deaths of those receiving care outside the care home, for example in domiciliary care. There was a far higher rate of death of care home residents than in hospitals. There was also devastating indirect harm.

This was an emergency within an emergency, and it should have received central attention by decision-makers, but it didn’t. In many ways the care sector was overlooked.

I’d like to come to some specific examples now, but to summarise those, they show three core things. Firstly, those needing or providing care weren’t given sufficient attention. Secondly, core decisions about those in care were flawed. And thirdly, these examples help understand the broader flaws that there were in core decision-making.

So the first example is indirect harm. Core decision-makers failed to pay sufficient attention to indirect harm and to mitigate it. The government obtained detailed evidence about Covid and the extent to which restrictions would tackle it, but comparatively little evidence was obtained about indirect harms. Covid was often the overriding consideration but decisions should have been made by balancing not just the harm caused by Covid but the harm that would be caused by the restrictions that would be imposed in response.

That point is well illustrated, we say, by reference to those needing care. Restrictions led to severe indirect harm on those needing care and that’s set out in more detail in paragraphs 14 to 21 and 38 of our submissions.

Notwithstanding the high proportion of overall deaths from Covid of those needing care, Covid wasn’t the biggest problem for them. In fact, it was only a small proportion of the overall deaths of those in care homes. 83.3% of care home deaths were from causes other than Covid during the pandemic. In Welsh care homes, dementia and Alzheimer’s remained the highest causes of death throughout the whole period. Similarly, in domiciliary care, there was a 225% increase in excess deaths in the first wave. The great majority of that was from non-Covid causes, 77%. Yet Covid was prioritised over all else.

The restrictions that were imposed caused severe interruptions to medical care and treatment. The number awaiting medical treatment, including serious conditions such as cancer, increased nine-fold. Restrictions also prevented contact with essential or family carers, and that meant a loss of critical care and support for those who needed it most.

The specifics of this are explained in more detail by the Older People’s Commissioner and by John’s Campaign in their witness statements. For example, they explain that these carers check for health problems, check for sores, dehydration, for pain, help communicate, help to explain whether the individual was suffering pain or to identify medical problems that they suffered. The carers helped to provide medical care, for example medicine or physiotherapy. The restrictions interrupted that critical care that they could provide.

This, together with the isolation itself, had many adverse consequences which were raised from an early stage. For example by Age UK, they explained that the restrictions had a profound impact on physical and mental health. Amnesty, in 2020, recorded that every single one of the family members and care home staff interviewed by Amnesty International expressed the concern that the prolonged isolation of care home residents had devastating consequences.

Similar concerns were raised by many other stakeholders, Mencap, the Older People’s Commissioner, John’s Campaign, Care Forum Wales, Care Rights UK, the Patients Association, the Alzheimer’s Society and others, and yet those concerns were either not listened to or not properly responded to.

It was not only a physical and mental deterioration that the restrictions led to, but in addition there was the emotional point of spending the last months of one’s life alone and in pain with no support of one’s loved ones. That, for many, was a critical factor which was forgotten.

So there are two issues we say really concerning indirect harm. The first is that a number of the core decisions about restrictions were inappropriate in light of the indirect harm. I’ll come back to that in more detail in a moment.

The second issue is that there was insufficient understanding of indirect harm by core decision-makers and/or a failure to take it into account. That’s the view of many stakeholders. It’s also the view of a number of those in government. For example, the Chief Information Officer, Mr Nelson, TAG’s policy modelling group, Professor John Watkins, Dr Chris Williams from Public Health Wales, Dr Rob Orford, the Chief Scientific Adviser, Professor Michael Gravenor, all expressed the concern that not enough was done to understand indirect harms.

Even as late as July 2021 TAG expressed the concerns that indirect harms are less well understood and measured, and that was within its five harms guidance.

So the explanation isn’t that this information wasn’t unobtainable, it was readily available from an early stage. We look forward to exploring in evidence in more detail why it was that this evidence was overlooked.

It appears that this is linked to a broader procedural flaw, which is a failure to take into account information from stakeholders or experts. There were, in this context, in the care context, some opportunities at least to provide comments, and that was positive, for example the Care Forum Wales, Older People’s Commissioner and the mid-2021 Locked Out report were opportunities for some people in this area to provide feedback. But that wasn’t sufficient. Firstly it was limited, few people were invited to provide input, it wasn’t a focused consultation on specific issues. But perhaps more importantly, it was ignored, it didn’t feed into the core decisions. And that’s the view of many stakeholders in this area, including Professor Wincott, who said there was an absence of data on social care, and this was a serious gap in the evidence base for policymaking in Wales.

A third issue, a third specific example, is the discharge decision in March/April 2020 without prior testing. We agree with Mr Poole King’s Counsel that there is no doubt that there was a massive failure of infection control, contributed at least in part to the influx of infected but untested patients into care homes. And we say that was obvious, for three key reasons.

Firstly, there were very high rates of Covid-19 in hospitals at the time; secondly, those in care were obviously highly vulnerable to Covid-19; and, thirdly, asymptomatic transmission was well recognised by 17 March.

That was the date on which it was announced that people would be discharged without prior testing. The policy was maintained from 17 March until the start of May. Large numbers of people as a result were discharged into care homes.

Now, the reason for the May 2020 decision, the reversal, which was to test people who – even people who were asymptomatic, was because of the recognition of the risk of asymptomatic transmission. But we say that risk was well known well before May 2020, indeed it was well known before 17 March 2020.

The evidence of that has been usefully summarised in a decision of the Divisional Court in the case of Gardner. Paragraphs 34 to 125 set out extensive evidence that that was known before.

There’s other evidence that’s before the Inquiry. To give a few examples, Professor Watkins on 28 February 2020 in the British Medical Journal wrote an article which was widely cited which recognised the risk of asymptomatic transfer. The Chief Scientific Adviser for Health was told on 1 April 2020 that there are potentially a high proportion of infectious people who are symptomatic. Yet despite that – we say it’s inexplicable that there was a month’s further delay in responding to that at a critical time.

So we understand that it will be uncontroversial that the government failed to identify or take into account evidence of asymptomatic transmission, and that’s because a Welsh Government scientific evidence advice report in November 2022 itself accepted that discharge without prior testing overlooked the potential risk for asymptomatic transmission.

This again illustrates a broader problem in core decision-making: the failure to properly consult stakeholders and experts and the failure to take that information into account.

One specific example of that is that on 22 March 2020 Mr Heaney told Mr Gething that isolation facilities in care homes would be put in place to manage these discharges. It appears that was one of Mr Gething’s reasons behind the decision. But in fact up to 58% of care homes did not feel able to effectively isolate suspected Covid-19 residents. That’s from an Alzheimer’s Society survey in May 2020. Again, that information was available, had the government properly consulted people. But it didn’t.

A fourth example, fourth specific example, concerns restrictions on visits for those needing and providing care. There were stringent restrictions in place, essentially a blanket ban, for much of the time, from March 23, 2020 until May 2021, and onerous restrictions continued thereafter. The adverse effect of those restrictions had been made clear by mid-2020, perhaps earlier. Many stakeholders had told the government or made public statements identifying the adverse effects, and I’ve covered some of those earlier in my submissions. They weren’t taken into account, they didn’t lead to appropriate changes.

The blanket ban continued until 28 August 2020. At that point, there was a relaxation in the sense that local risk assessments took place, but those risk assessments were only about the risk of Covid, there was no recognition of the problems with indirect harm, there was no balance between that indirect harm and the risks of Covid.

In October 2020 the blanket ban was imposed again and continued for a very long time, and in our submissions at paragraph 39 we identify a number of changes that ought to have been made to that ban. One of them was the essential caregiver point that the John’s Campaign had been calling for, for some time, in other words an individual who can be permitted to visit their relative, with a prior negative test, at any time, who is provided with PPE in the same way as ordinary staff is provided with it.

Another measure that ought to have been taken, we say, is that risk assessments in individual cases should have been carried out. There ought to have been a balance on the one hand of the risk of Covid against, on the other hand, the harm that the restriction would cause, the harm that no visits would cause.

In addition, the personal wishes, the autonomy of the individual affected ought to have been taken into account. So, for example, the question should have been raised: does the person prefer to spend their last months isolated, in severe decline, with the increasing risk of death from non-Covid or face an increased risk of Covid? We say that ought to have been taken into account.

And again these illustrate wider problems with core decision-making: evidence from stakeholders being overlooked, indirect harm being overlooked, and an inflexible blanket approach being taken which led to the wrong results.

A fifth example is PPE shortages. Sufficient PPE was not made available to those providing care, among others, during the first few months of the pandemic. The evidence of that is in paragraphs 41 to 42 of our submissions. And that appears to be accepted by the government, Mr Gething in particular. The main question is why. Mr Gething suggests the answers include problems in systems for the distribution to social care, so PPE was sent to local authorities but they did not forward it to care providers. We hope to explore whether this is a broader flaw in the decentralised nature of social care in Wales and something which ought to be challenged.

Other answers were given by Care Forum Wales, one of which was that England took precedence.

The sixth example is inadequate guidance. There was a delay at the outset of the pandemic in sufficient guidance being produced for those in the care sector. So there was no helpful guidance until 15 April 2020, and that was despite a number of requests from stakeholders and despite the great vulnerability of people in this sector.

Care Forum Wales and the Older People’s Commissioner both indicated the government was slower to respond to the concerns of the care sector in producing guidance than it ought to have been. Once guidance did come in, at times it was conflicting and confusing. The Older People’s Commissioner drew attention to this early on and to the importance of clarity. Her 21 June 2020 report noted that guidance was often confusing and contradictory. Care Forum Wales mirrored this, guidance was impossible to follow, and many others did, and yet the guidance continued to be unclear.

We have set out particular examples of this, but to pick on two of them, the first is whether unpaid carers should have been given priority for vaccinations, and the guidance really vacillated between whether or not that was the case over a short period.

Similarly, John’s Campaign called for more specifics on what the “end of life” meant in terms of visits, and that was because that was being interpreted in a very narrow way on the ground, causing real problems, and despite multiple efforts by John’s Campaign there was no clarification of the guidance.

Again, this indicates concerns of stakeholders were not being listened to by central government or properly responded to.

Should there have been a single person within government who was responsible for clarity and consistency of guidance? Should there have been a single person responsible for ensuring guidance was understandable for those who may have difficulty in understanding it? These are questions we hope to explore in evidence.

The seventh and final example is a more general lack of support for the care sector. We give various examples of this, but they include: care workers were not key workers until October 2020; they were denied testing that was provided to the NHS; unpaid care was particularly neglected, even though it was the largest source of adult care provision in Wales and the rest of the UK it was largely overlooked by ministers. A series of concerns were raised about that area, for example by Carers UK, but they weren’t – but very little was done to help.

If one takes together the numerous examples that I’ve touched on above of the care sector being overlooked or deprioritised, it raises some important questions which we hope to explore.

Firstly, this was such an important group by size, vulnerability and the severity of the adverse impact, it should have been given greater attention.

Secondly, were the lives of those in care valued less? Were they considered to be less important due to age or illness?

Thirdly, were the duties in the Equalities Act and the Human Rights Act not complied with? The Children’s Commissioner’s opening submissions indicate that that’s the case, at paragraph 6, and we endorse the opening submissions.

The disabled people’s organisations, similarly, note the – draw attention to the Welsh Government’s laudable commitment to human rights, but know that it wasn’t delivered, it wasn’t effected on the ground, and we also endorse those.

So we look forward to exploring these questions in evidence and being able to revisit them in closing submissions.

Lady Hallett: Thank you very much indeed, Mr Straw. A number of the issues you raise, as I’m sure you appreciate and you’ve alerted your lay clients, a number of the issues cross over different modules. And it comes with the modular structure, we all know that, there’s bound to be overlap, but we’ll try hard to make sure that some of the issues you mention may get dealt with in a later module but we’ll see how they fit in with the core decision-making. But thank you very much indeed.

Right, Mr Friedman.