Whilst the purpose of the Health & Social Care Committee report (published on 12th October) into the government’s response to the Covid-19 pandemic was not to apportion blame, the relentless condemnation of the approach taken by the government, whose primary purpose is to protect us paints a grim picture of just how far the UK public was let down by those in charge. The dedication of NHS staff, care workers and volunteers as well as the community spirit shown across the country stands out in stark contrast to continual mis-steps by a rudderless government. The vaccine rollout is rightly seen as a great success, but this is now being drawn like a curtain to attempt to obscure the numerous government failures throughout the pandemic. In any other time there would have been immediate Ministerial resignations following the publication of the report. However, we are being led by a government that exudes exceptionalism and brazenly refuses to be bound by the normal rules of accountability. This approach deepens the mistrust in our political system and further damages our democracy.
However, this blog concentrates on the disproportionate impact of the pandemic on people with learning disabilities and particularly the application of ‘Do Not Attempt Pulmonary Resuscitation’ (DNAPR’s) orders on younger people with learning disabilities as well as conditions such as autism and cerebral palsy. Please note that while I campaign for step-free access across the UK rail network, I don’t claim any expertise in the care of disabled and vulnerable people. However, I took a particular interest in this aspect of the report, as it is often disabled people who bear the brunt, and are the first to experience, the impact of policy failures or financial cutbacks by government.
The following is a short summary of the issues that people with learning disabilities faced during the pandemic. You can read the full report, which was compiled by a cross-party group of MPs here: https://committees.parliament.uk/publications/7496/documents/78687/default/
Paragraph 22 of the ‘Executive Summary’ in the report states:
“Do not attempt CPR” notices were issued inappropriately for some people with learning
disabilities, which was completely unacceptable. Plans for future emergencies should
recognise that blanket access restrictions to hospital may not be appropriate for patients
who rely on an advocate to express their requirements.
The report acknowledged that while pre-existing health conditions undoubtedly contributed to the increased mortality risk, they were compounded by inadequate access to the care people with learning disabilities needed at a time of crisis. The report goes on to discuss that this was a result of restrictions on non-covid hospital activity, and, significantly, because of access restrictions which prevented family members and other carers accompanying people with learning disabilities in hospital to perform their expected advocacy role.
Paragraph 49 of the ‘Pandemic Preparedness’ section states:
Initial guidance to clinicians based on the Clinical Frailty Scale was insufficient and had serious
consequences, such as for people with learning disabilities.
This refers to the advice issued by the ‘National Institute for Health and Care Excellence (NICE) on 20th March. The full advice can be found here: https://www.bopa.org.uk/resources/uk-nice-covid-19-rapid-guideline-critical-care-20th-march-2020/ Excerpts below.
This indicated that all adults are assessed for frailty, irrespective of age and that (as set out below) a Clinical Frailty Score of 5 or more would lead to a discussion about a ‘do not attempt cardiopulmonary resuscitation’ decision.
Although this guidance was updated five days later, stating that the Clinical Frailty Scale should not be used in younger people, people with stable long-term disabilities such as cerebral palsy, learning disabilities or autism, the report was provided with evidence that this continued and that DNAPR orders continued to be issued incorrectly.
Paragraph 326 of the ‘At Risk Communities’ section states:
The confusion over ‘Do Not Attempt CPR’ (DNACPR) guidance was perhaps the
most significant consequence of this. The Learning Disabilities Mortality Review Programme (LeDeR) review of the deaths of people with learning disabilities from covid-19 found that in several cases ‘learning disabilities’ were given as the rationale for a DNACPR decision.492 This was despite guidance issued by NHS England and NHS Improvement on 3 April 2020 explicitly stating “the terms ‘learning disability’ and ‘Down’s syndrome’ should never be a reason for issuing a DNACPR order”.
Further, in paragraph 328:
However, a CQC review of the use of DNACPRs throughout the pandemic found that “all voluntary sector and some other stakeholders said they had either actual or anecdotal evidence of concerns about the issuing of inappropriate DNACPR orders”. According to the review, this may have been due to “confusing guidance, pathways and protocols”.
The impact of the pandemic was disproportionally severe for individuals with learning disabilities. In November 2020, Public health England concluded that the death rate from Covid-19 among adults with learning disabilities was 3.6 times higher than the rate of the population as a whole. Written evidence provided to the committee painted an even bleaker picture, set out in paragraph 314:
The Head of Policy at Mencap, told the Health and Social Care Committee that when adjusted for age the death rate for people with learning disabilities was “over six times” higher than the general population.
The report also included a quote on the broader issue of managing NHS capacity during a health crisis, which could easily be applied to all UK services and supply chains at a time of widespread national shortages.
“Should we try to build more resilience into public services rather than
running everything to the optimum just-in-time efficiency? I think that is
one of the big lessons from the pandemic. We talked a bit about it earlier in
respect of extended supply chains versus domestic manufacturing capacity,
but that is just one instance of the broader point, which is that resilience
requires buffer, and buffer can look wasteful until the moment when it is
Moving back to the treatment of people with learning disabilities, more evidence of the lack of consideration of their welfare was highlighted throughout the report:
“The loss of normal social support and care during the pandemic was part of a larger
sense that people with learning disabilities were being overlooked by the Government.“
“When guidance was provided, it was often later, contributing to the
view that people with learning disabilities were not a priority for the Government.”
The Voluntary Organisations Disability Group told the committee:
“From the outset of the pandemic, disabled people and their families and
carers, and the workforce supporting them, have been overlooked in
government guidance on infection control, personal protective equipment,
and testing and there has been little recognition of the types of services
Steve Scown of ‘Dimensions UK’ summarised the approach bluntly in evidence to the committee:
“We have to admit the point that people with learning disabilities are not
valued as equal members of society[…]
There is a fundamental problem about how people with learning disabilities
are valued in society.”
The evidence is just one aspect of the many failures in the government’s approach to the pandemic. Of course, any government faced with the scale of the challenge Covid-19 presented would have made mis-steps, but this should not excuse the lack of empathy or compassion displayed by this government. The damage has been done and thousands of people have lost their lives due to delays and mistakes. We must of course learn lessons from those mistakes, but above all there must be accountability, sorely lacking to date, for those mistakes.
Boris Johnson said on 17th March 2020 “Of course the buck stops with me and I take full responsibility for all the actions this government is taking, all the decisions we are taking….”
We will soon see if these were just empty words.