Transcript of Module 2B Public Hearing on 14 March 2024.

(10.00 am)

Lady Hallett: I’ll check that it’s 10 o’clock. Yes, it is. I gather there has been a slight change to the order. Mr Straw, I think you’re going first.

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

Mr Straw: Thank you very much, my Lady.

This module concerns core decision-making but I’m focusing on those needing and providing care for two reasons.

Firstly this group perhaps suffered more severely as a result of the pandemic and the response to it than any other. It should, in consequence, have had a central place in decision-making. It did not; it was often overlooked, or when it was considered it was treated less favourably than others.

Secondly, this group of people is a useful microscope through which the Inquiry can examine what went wrong with core decision-making more broadly. The problems in this area are often symptomatic of core flaws. Those in need of care should have been a priority for decision-makers from the very start of the pandemic because of their exceptional vulnerability both to Covid-19 and to the restrictions imposed in response. The Welsh Government was made aware of this vulnerability and the need to urgently protect those needing care from an early stage.

To pick just one example among many, on 11 March 2020, Public Health Wales produced a paper which drew attention to the extremely serious likely impact on older people and those with comorbidities, in terms of hospitalisation and mortality. As a consequence, Public Health Wales strongly advocated urgent attention directed at the elderly population cared for in residential and nursing homes in Wales.

Despite this clear and stark warning, which reflected the concerns of many others on the ground, the Welsh Government continued to look the other way. Those concerns either were not listened to or, if they were listened to, nothing was done about them.

With much of the government’s response, our clients were left asking the same question that your Ladyship had to repeatedly ask Mr Goodall, Mr Gething and other witnesses: what did you do? All too often, no concrete or substantive action was identified in response. I will consider eight examples of this now.

Firstly, discharge from hospitals to care homes. Asymptomatic transmission and the consequent importance of testing were well recognised in the scientific evidence by the time of the 17 March 2020 decision. We detail this in our written closings.

Contrary to the suggestion of some witnesses, the evidence was not only of asymptomatic illness, it was also of asymptomatic transmission. It is clear that this evidence was overlooked at some level. Whether that failure occurred at the level of the scientific advisers or of core decision-makers is, perhaps, open to question.

I should note the World Health Organisation was less sure of the risks until July 2020, but applying the precautionary principle and given the great vulnerability of those in care homes, prior testing was in any event necessary.

Ministers were plainly aware of serious concerns that had been raised by stakeholders from an early stage about discharge without prior testing and the great vulnerability of those in care homes to the introduction of disease by this route. Those stakeholders included the Older People’s Commissioner, Care Forum Wales, Care Inspectorate Wales, numerous providers and local government leaders. Those concerns should have been listened to and acted upon, but they were not.

There had been suggestions that the decision not to test may have been linked to limitation on the availability of tests, but Dr Goodall indicated that there were about 1,800 tests available a day in mid-March, and the number dramatically increased from the beginning of April. As we explain in more detail in our written closings there were only about 18 patients discharged per day without a prior test in March 2020 and about 11 a day in April 2020 in Wales. So those discharged constituted, as a maximum, only 100th of the available testing capacity.

The importance of not sending infectious patients into the tinder box of a care home was so great that allocating this relatively tiny handful of the available tests to this context was plainly justified. And indeed the First Minister agreed with this yesterday, he described this as a fair point and accepted how vulnerable those in care were.

Alternatively, if your Ladyship considers that there were not sufficient tests, then it’s important to ask why not. A similar issue, as Mr Gething put it, is the woefully inadequate levels of PPE. Having a big enough stockpile of tests and PPE is a fundamental basis for an effective response to a pandemic. The need to ensure the UK has enough access to tests and PPE for any future pandemic ought, in our respectful submission, to be a key recommendation made by this Inquiry. The costs of not being properly prepared going into a pandemic, for example the huge number of additional deaths and the need to close down the economy, plainly hugely outweigh the costs of being properly prepared by having enough stockpiles of PPE and tests.

The second example is data. There was, as the Office for Statistics Regulation put it, a data chasm in social care. Deaths from Covid-19 were not properly counted at an early stage. Dr Cooper said data in the care home sector was a “significant challenge”:

“… there wasn’t a system that really could be relied upon for us to help inform action or look at the reality of what was happening in any sort of systemised data way [on the ground].”

The third example, stakeholders and the implementation gap. There was some limited stakeholder engagement by the government. For example, the government consulted with the Older People’s Commissioner and Care Forum Wales and later, in 2021, with the Disability Equality Forum.

This was a good start, and contrasts to the lack of any significant engagement by the UK Government. But it did not go anywhere near far enough. There remained two serious deficiencies. So, firstly, the involvement of stakeholders was too limited. The commissioner, while of course very important, does not have a formal structure which ensures that government understands the concerns of all those in care, she doesn’t represent younger or all of the disabled people.

Professor Foster considered that disabled people were not adequately represented in political decision-making. She explained a number of problems which may have been avoided, had there been better representation. Those problems included the failure to think about the consequences of the restrictions and the removal of the human rights of those in residential institutions.

Similarly, Dr Cooper accepted that the government should have set up settings-based meetings with people with lived experience of care homes.

The second deficiency was what’s been called an implementation gap. Professor Foster explained that this was “the area we are really worried about”, referring to the authors of the Locked Out report. The input of stakeholders at the core policy level was not being implemented. This concern was echoed by Ms Herklots, who said that there was a significant disconnect between what was being promised at policy level and what was being delivered on the ground. It was not enough for the government just to listen, they also needed to act.

The First Minister yesterday certainly agreed, in his words, that there was an implementation gap, and indicated that there were many contributory reasons for it. He accepted lessons should be learned. They included that the ownership pattern of care homes in Wales was problematic, and it meant that, firstly, the views of the disparate audience were not sufficiently represented and, secondly, the complex pattern of intermediaries, as he put it, made it difficult to distribute things like PPE.

He made suggestions for improvements including a central register of care homes and care councils. We very much agree that there should be improvements but respectfully suggest that these problems should already have been rectified.

There was a wider lack of co-ordination across the Welsh Government and with local authorities. Mr Llewelyn explained that there was a failure to properly engage with local authorities from an early stage. He said that there was experience and capacity within local government and had it been used at an earlier point then it would have led to better regulations and better guidance.

Dame Morgan accepted that there was inadequate co-ordination, including with the Welsh Local Government Association.

The document, “A Review of the Health & Social Services Response Structure to COVID-19”, which was in September 2020, identified a number of problems with internal co-ordination in the government’s response structure. This included a lack of clear accountability as to the roles of cells, which included the planning and response cell and its social care subgroup, and the report accepted that at times this created confusion.

The fourth example is indirect harm. Core decision-makers, in our submission, failed to properly recognise and investigate indirect harm, failed to pay sufficient attention to it and consistently made decisions which ignored or devalued that harm.

The core decisions, especially early in the pandemic, were normally made solely or largely on the basis of whether they would reduce Covid-19 or whether they would stop the NHS from being overwhelmed.

Other harms, for example dementia or cancer, or devastating the care sector, were ignored initially and later given insufficient weight. While this may have been understandable to begin with, given the challenge that Covid-19 posed, that doesn’t mean it was right. A death due to dementia is no less important than a death from Covid-19 and it should not have been devalued.

Recommendations. This is a sub-part of this fourth example. The Inquiry is respectfully invited to consider making a recommendation to the following effect:

Restrictions should not be imposed unless all reasonable efforts have been made to identify the harms that would arise, and that’s both Covid-19 and indirect harms.

Secondly, there should be a balance between the benefit in reducing Covid-19, of the restriction, against the indirect harm that should be caused by the restriction.

Thirdly, the balance should take into account personal autonomy and individual needs given the fundamental importance of those factors. That importance is well illustrated in the care sector. The decision, for example, whether a care home resident will spend their last months isolated, in severe decline, with an increased risk of death from non-Covid-19 causes, or face an increased risk of Covid, is a very difficult and fundamental decision, and the resident should have a central say in it.

The fifth example is conflicting and unclear guidance. There were many calls for clear and consistent guidelines for those needing care, from March 2020, which were not heeded. For example, Ms Herklots’ request on 14 April 2020 for an urgent action plan met with a wholly inadequate response, and an action plan was not published until 30 July 2020.

Guidelines and regulations were unclear, contradictory and confusing. Vague definitions of criminal offences caused confusion and unfair prosecutions. The Welsh Local Government Association offered to provide their expertise to help prepare and draft legislation, but this was overlooked by the government.

There ought to have been an individual in central government who had specific responsibility for ensuring that communications about Covid-19, and about rules or guidance, were clear and consistent, and that individual should have understood how to communicate with people who may have difficulties in understanding. It appears that there was no such specific individual.

The sixth example is restrictions on visits. Preventing contact between those needing care and their carers or loved ones caused very serious harm. The government was repeatedly invited to make certain specific changes from an early stage which would have allowed safe visiting. Just to give one example, they included that an essential caregiver should have been given the right to visit a person in care. The essential caregiver would have been provided with the same testing and PPE as an ordinary member of staff and may be expected to limit contact with others. Although that recommendation was made from a very early stage it wasn’t implemented and there has been no good reason why not.

The seventh example is parity with the NHS. There were many ways in which the care sector was put in second place behind the NHS. Mr Llewelyn said social care workers felt that they were neglected by the government and did not have parity of esteem with other care workers. Similarly Ms Herklots explained that social care was definitely seen as secondary to the health service in a number of different ways. She gave examples and they include social workers or essential carers were not recognised as key workers in the same way as NHS workers, staff and visitors to those in care were not given equivalent testing, and social care staff were not given their pay for sickness absence associated with Covid-19. Similarly, the NHS was prioritised for supplies of PPE and testing over the care sector.

The eighth and final example is a group, other examples of systemic, less favourable treatment of those in care. There was deeply worrying evidence that, at least at the start of the pandemic, positive decisions were made not to make healthcare available to those needing care. Ms Herklots explained that health professionals had stopped visiting care homes. Ms Provis, Ms Grant, and the Amnesty report drew attention to a range of evidence that critically ill care home residents were refused all sorts of medical care, ambulances, transfer to hospital and so on, on a blanket basis and for no good reason.

Similarly, there was widespread evidence of “Do not attempt CPR” forms being imposed on those in care without their consent. Unpaid carers were particularly neglected by core decision-makers. They should have been an important issue for the government, because of the huge number of unpaid carers, particularly in the pandemic, and because of the particular vulnerabilities of those giving and receiving unpaid care. The problems had been brought to the government’s attention but really nothing or very little was done about them.

In summary, as these eight examples show, there were many respects in which those in care were neglected. An important question for this Inquiry is why. One answer is that, taken cumulatively, those examples indicate discrimination against those who needed care and against older people, ageism. Professor Foster said disabled people were generally seen throughout Covid as dispensable. The Locked Out report details evidence of disabled people experiencing medical discrimination, restricted access to public services and social support, and an erosion of basic human rights. Ms Herklots had serious concerns about ageism and that older people’s rights were not being sufficiently protected.

Another linked answer to the question is that core decision-makers abandoned the duties in the Equality Act and Human Rights Act. There is little evidence of those duties being considered within the Covid response. For example, we’ve seen no recognition of the right to respect for family life by core decision-makers, that restrictions must be the least onerous necessary, and the important principle within that right of personal autonomy.

The Locked Out report concluded:

“Disabled people’s human rights, including the basic right to independent living, have been discarded during the pandemic.”

And we agree.

Similarly, the public sector equality duty was repeatedly not complied with. The Locked Out report concluded:

“The use of Equality Impact Assessments … during the pandemic have been conspicuously absent.”

“… I think had they been undertaken, some of the issues that we raised in the report would have been discovered”, Professor Foster said.

Ms Herklots echoed those concerns, and Mr Miles accepted that, in future, the government should establish an earlier pattern of each type of formal impact assessment. While abandoning human rights and equality duties must have been the easy option, if anything, those duties were even more critical in a time of crisis than otherwise. Protected groups are at far greater risk, and decision-makers are most in need at this time of a framework to help them draw these difficult balances.

In conclusion, my Lady, as Baroness Morgan said on 12 March, the pandemic isn’t over. That is especially true for people in care who remain subject to restrictions. We respectfully invite you to carefully consider making recommendations not just for a future pandemic but also for those who are still suffering because of this one.

Those are my submissions.

Lady Hallett: Thank you very much, Mr Straw.

Just so everybody appreciates, you’ve mentioned there your written closing submissions, I will obviously be taking into account the written submissions very carefully and the idea of the oral submissions is to highlight the features that appear in your written submission, and that applies to all core participants.

Thank you very much.

Mr Straw: Thank you.

Lady Hallett: Mr Friedman, are you going next?

Mr Friedman: Yes, my Lady.