People with learning disabilities have faced significant health inequalities for decades, since well before the Covid-19 pandemic. The life expectancy of women with learning disabilities in the UK is a shocking 18 years lower than the general population, with a gap of 14 years for men. Those with learning disabilities are much more likely to suffer from a number of health conditions, including epilepsy, dementia and mental health conditions. People with learning disabilities are also more likely to be either underweight or overweight, and they are more prone to respiratory infections. The poor health outcomes seen within this group are thought to be caused by poor access to healthcare, as well as a poor understanding of learning disability amongst health professionals.
It will come as no surprise that those with learning disabilities are also at significantly greater risk of complications, and death, from Covid-19 infection. The first wave of the pandemic had a devastating impact within this group. On 12 November 2020, Public Health England (PHE) published a very sobering report in relation to Covid-19 deaths of people with learning disabilities during the first wave of the pandemic. During the first wave, people with learning disabilities were between three and six times more likely to die from Covid-19 than the general population. For those under 30, individuals with learning disabilities were, shockingly, 30 times more likely to die than their peers.
Disabled people were also more likely to be significantly impacted by the restrictions imposed to manage the spread of Covid-19. Those living in care homes and supported accommodation saw significant restrictions on contact with their families, and access to their usual community activities and support was curtailed. Those residing in care settings were also at greater risk of contracting the virus due to the congregate nature of such settings.
When positive news began to spread about the efficacy of the Covid-19 vaccine, those with learning disabilities and their families hoped for some level of priority access, alongside other clinically vulnerable individuals. This could have been a small step towards addressing the significant health inequalities faced by this group.
The first vaccine prioritisation list published by the Secretary of State for Health and Social Care on 2 December 2020 was, however, almost entirely based on age, with no reference to those with learning disabilities at all. It was also remarkable that no priority access was granted to those residing in care settings other than care homes for older adults. Those with learning disabilities were particularly poorly served by this guidance, in light of their reduced life expectancy. The sad reality is that many people with learning disabilities simply do not live long enough to be admitted to care homes for older adults.
The priority list was amended on 30 December 2020 to include some priority access to vaccination for individuals with certain health conditions in priority groups four and six. Individuals within priority group four included ‘clinically extremely vulnerable’ individuals, those who had been advised to shield during the pandemic, such as people with Down Syndrome for example. Priority group six included individuals ‘with underlying health conditions which put them at higher risk of serious disease and mortality’, which included those with severe and profound learning disabilities.
Critics immediately noted that the mortality figures from the PHE report had not differentiated between ‘mild to moderate’ or ‘severe and profound’ learning disabilities. All individuals with learning disabilities were found to be at greater risk of dying from the virus. In addition, the prioritisation list created significant practical gatekeeping difficulties for those responsible for the rollout of the vaccination programme. Levels of learning disability are very rarely neatly defined in GP records as either ‘mild to moderate’ or ‘severe and profound’. Indeed some GP records would not even record whether an individual had Down Syndrome.
The judicial review proceedings
In January 2021 Bindmans LLP was instructed by two individuals with learning disabilities in a proposed judicial review of the Secretary of State’s failure to grant priority access to all individuals with learning disabilities. The clients became known as ‘X’ and ‘Z’. X was a 19 year old young person with a severe learning disability, epilepsy and autism, who resided within a specialist supported living placement, with 24-hour care.
Z, X’s mother, was a 47 year old woman with a mild learning disability and osteoarthritis, who resided at home with her mother (X’s grandmother and litigation friend in the proceedings). X and Z were significantly impacted on a personal level by the Coronavirus restrictions, since they had been unable to see each other face to face since March 2020, causing great distress. X’s care provider had stopped all visits to her supported living placement. X was said to be unable to socially distance due to her autism spectrum disorder, making even outdoor contact with others impossible. X’s community activities had all been stopped, and she remained indoors for most of the year, leading to a deterioration in her mental health and an increase in her challenging behaviours. X was clearly extremely vulnerable to complications from Covid-19, both as a result of her health conditions, but also her living arrangements, as well as her inability to socially distance. Her family were very anxious when an outbreak of Covid-19 was reported at her placement, although X avoided infection.
The family desperately hoped that priority access to the vaccination would be granted to both X and Z, and that this could enable them to safely resume face to face contact with each other. It was also hoped that X would be able to resume outdoor activities and access the community.
Under the prioritisation list updated on 30 December 2020, X was eligible for vaccination within priority group six, as a result of her severe learning disability and epilepsy. She would therefore be able to access the vaccination alongside 75 year olds, and individuals with certain health conditions. Back in December 2020, in the very early stages of the vaccination programme, despite having some priority access it seemed unlikely that X would be vaccinated for many months. This was despite the fact that, according to the PHE statistics, her risk of dying from the virus was estimated at around 30 times higher than her non-disabled peers.
For Z, the picture was even more bleak since she did not fall within any of the priority groups. Her learning disability was mild and she had no underlying health conditions which would grant her any form of priority. It seemed unlikely that she would be able to access vaccination until the summer of 2021.
After some delay in obtaining legal aid, judicial review proceedings were issued at the end of January 2021 by X and Z, against the Secretary of State for Health and Social Care. The claimants challenged the Secretary of State’s decision to adopt the guidance of the Joint Committee on Vaccination and Immunisation (JCVI), which afforded no priority access to the vaccination for individuals residing in care settings other than care homes for older adults, and no universal priority access to vaccination for individuals with learning disabilities. It is important to note that the JCVI, an independent statutory body, and the Secretary of State, are two separate legal entities, with the former advising the latter in relation to the vaccine rollout. The JCVI was named as an interested party to the claim.
Grounds of review
In pre-action correspondence, the Secretary of State admitted that he had mistakenly believed that he was bound by the recommendations of the JCVI in relation to the proposed priority list. In other words, in the claimants’ view, the JCVI recommendations had effectively been ‘rubber-stamped’ by the Secretary of State, with little or no scrutiny. X and Z submitted that this was unlawful, and that this fettering of the Secretary of State’s discretion should in and of itself lead to a review of the vaccine prioritisation list.
Secondly, it was submitted that the decision not to grant priority access to all individuals with learning disabilities, and all working adults resident in care settings other than care homes for older adults, was in breach of the public sector equality duty under s149 of the Equality Act 2010 (EA). The Secretary of State had failed to consider any of the relevant factors under s149 EA, not least because he did not believe that he had a choice in relation to whether or not he should accept the JCVI recommendations.
Thirdly, it was argued that the failure to prioritise all individuals with learning disabilities, as well as adults of working age residing in care settings, was in breach of Article 14 (non-discrimination), Article 2 (right to life) and Article 8 (right to private and family life) of the European Convention on Human Rights (ECHR). By adopting the JCVI recommendations, it was submitted that the Secretary of State had discriminated against people with learning disabilities, and failed to protect their right to life and their right to a private and family life under the ECHR.
Fourthly, for similar reasons, it was submitted that the Secretary of State had discriminated against people with learning disabilities under the EA.
Finally, it was argued that the decision to adopt the JCVI recommendations was irrational. In the face of clear evidence that those with learning disabilities were at greater risk of dying from Covid-19, the decision to adopt the JCVI recommendations was outside the range of reasonable responses to the position of people with learning disabilities and working age adults in care settings which were open to the Secretary of State.
Supporting expert evidence
In support of their application for judicial review the claimants submitted evidence from Professor Chris Hatton, an expert on the health inequalities faced by people with learning disabilities. In a blog on the topic of access to vaccination, Professor Hatton made the following arguments in support of prioritising people with learning disabilities:
- Most adults with learning disabilities do not live in the care homes (especially care homes for older people) targeted in the Covid-19 vaccination priority groups, and would not therefore be prioritised at all.
- Health information systems do not reliably record the type of information that would be needed to decide whether a person with learning disabilities should be included in the Clinically Extremely Vulnerable or Underlying Health Conditions vaccination priority groups (groups four and six).
- The existing health system discrimination experienced by people with learning disabilities gets worse when health systems are under intense pressure. The prioritisation list adopted by the Secretary of State would incentivise complicated eligibility policing for people with learning disabilities, which rarely ends well.
- There was already an existing infrastructure to support the rollout of Covid-19 vaccinations for all adults with learning disabilities, in particular learning disability nurses, who were in an ideal position to mobilise a national Covid-19 vaccination effort for people with learning disabilities.
- Compared to the scale of the national vaccination rollout, the population of adults with learning disabilities was relatively small. Professor Hatton estimated there to be around 240,000 people with learning disabilities known to GPs in England.
The claimants argued that the application was extremely urgent, in light of the progress already made with the vaccination rollout, as well as the alarming figures which were continuing to emerge about the death rate within the learning disabled population, during the second wave of the pandemic.
In response to the claim, the Secretary of State argued that the JCVI is a panel of experts, and that it would have been irrational to ignore its recommendations. The Secretary of State had already asked the JCVI to consider the PHE report on the deaths of people with learning disabilities. The claimants were seeking to judicially review the clinical judgment of a group of experts, which was unarguable. Should the court set aside the prioritisation list, this would halt the vaccination programme pending a fresh decision, which would lead to an increase in deaths. It was also argued that to include all people with learning disabilities in priority group four, as suggested, would disrupt the rollout of the whole of the vaccination programme, putting lives at risk. A quashing order would result in the Secretary of State having to make a fresh decision in relation to the vaccine priority groups, and there was insufficient evidence to suggest that a different decision would be made second time around, in light of the expert opinion provided by the JCVI.
The claimants responded that any decision to set aside the current priority list could be dealt with by way of a delayed quashing order, enabling the rollout to continue pending a fresh prioritisation decision. To include all people with learning disabilities in priority group four would not lead to significant disruption, and indeed would be less onerous than undertaking the complex gatekeeping assessment that was currently required, in order to determine which people with learning disabilities should be prioritised based on the severity of their disability.
High Court’s decision
The Administrative Court refused permission to apply for judicial review ‘on the papers’ (i.e. without a hearing). The judge held that even if the Secretary of State had been aware that he was not required to adopt the JCVI recommendations, this would have been highly unlikely to have affected his decision to adopt the prioritisation list as the JCVI recommendations were based on expert clinical opinion. The court also found that the EA, human rights and irrationality grounds were not arguable, including because the Secretary of State had now filed a copy of the impact assessment conducted ahead of the decision to adopt the JCVI prioritisation list.
The claimants applied to renew their application for permission at an oral hearing, on the basis that the judge was wrong to have held that their claim was unarguable. By this stage, this issue had attracted significant public attention, most notably after the BBC radio presenter Jo Whiley reported that she had been offered a Covid-19 vaccination ahead of her sister, who had a learning disability and resided in a care home. Frances Whiley had sadly contracted the virus and required hospital treatment, before a vaccination had become available to her.
In addition to the increasing public attention, the practical difficulties in applying the prioritisation list had become evident, with some Clinical Commissioning Groups choosing to prioritise all individuals on the learning disability register of their own volition, instead of trying to distinguish between levels of learning disability. It was soon apparent that Professor Hatton’s predictions were correct, and that GPs did not hold records in relation to the severity of patients’ learning disabilities, or even in some cases, any record of which patients had Down Syndrome (which would place them in priority group four).
On 24 February 2021, the JCVI recommended that all individuals on the learning disability register should be prioritised for vaccination. This recommendation was subsequently adopted by the Secretary of State. Following this announcement, both X and Z received their vaccinations, and their renewed application for permission to seek judicial review was withdrawn.
The challenges faced by X and Z in obtaining permission to apply for judicial review of the Secretary of State’s decision illustrate the difficulties faced by many claimants seeking to challenge decisions made by the government in response to the pandemic. Disabled people have arguably suffered the most as a result of Covid-19, both in terms of their health outcomes and the impact of the measures brought in to manage the pandemic. Challenging government decisions in response to this unprecedented event remains extremely complex, when the regulations, guidance and expert opinion change almost as quickly as the infection rate itself. Furthermore, in this case as well as many others, the Administrative Court has shown great reluctance to interfere with decisions made by the government in response to the pandemic. As long as these decisions continue to disproportionately impact disabled people, such challenges will continue to be necessary.
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This article was written by Elizabeth Cleaver, and was first published in the Discrimination Law Association (DLA) briefings, Volume 73, July 2021.