There has been a lot of information about the Covid-19 vaccines and priority groups recently, but where do people with learning disabilities fit in?
Good news about Covid-19 vaccines keeps coming this week. First, the rollout of the Oxford/AstraZeneca Covid-19 vaccine began across GP-led sites with the aim of vaccinating 13 million people in the top four priority groups by mid-February. Then the third Covid-19 vaccine, Moderna, was approved and is due for distribution in the Spring.
The Covid-19 vaccination programme will be one of the biggest in NHS history involving more than 700 local vaccination sites. More than a million people in the UK have already been vaccinated with the Pfizer/BioNTech vaccine with second doses arriving at many sites this week.
Yet as coronavirus cases continue to soar in the UK, vulnerable people in the remaining priority vaccine groups continue to face an anxious wait, with some timescales suggesting Easter as a realistic aim.
When are people with learning disabilities likely to receive the vaccine?
According to the Joint Committee on Vaccination and Immunisation (JCVI), an independent expert advisory committee that advises UK health departments on immunisation, evidence suggests that risk of serious Covid-19 disease is strongly related to age, and risk of Covid-19 mortality is low in those aged under 40 years, even for individuals with clinical risk factors.
In group four, people who are defined as clinically extremely vulnerable are at very high risk of severe illness from coronavirus. There are two ways you may be identified as clinically extremely vulnerable. Either by your clinician or GP or if you have one or more of conditions on the Shielded Patient List. Adults with Down’s Syndrome were added to this list in November 2020 after new research found that persons with Down’s Syndrome were at high risk of severe outcomes from Covid-19.
People with learning disabilities fall into priority group six with chronic neurological disease as their underlying health condition, but this only includes individuals with cerebral palsy, severe or profound learning disabilities, or Down’s Syndrome.
The JVCI recommendations state that many younger adults in residential care settings will be eligible for vaccination in group six because they fall into one of the clinical risk groups such as learning disabilities.
Should people with learning disabilities be a higher priority?
Law firm Bindmans LLP have sent an urgent legal letter to Matt Hancock, the Secretary of State for Health, requesting that individuals with learning disabilities be granted priority access to the Covid-19 vaccine on an equal basis with other highly vulnerable adults.
They have urged him to recognise that those with learning disabilities are extremely clinically vulnerable to complications from Covid-19 and should be prioritised accordingly for access to the vaccine. In the letter, they state that those who reside within care settings are particularly prone to contracting the virus due to the congregate nature of such settings and practical difficulties with social distancing. To date, no priority has been given to those residing in care settings other than care homes for older adults.
The proposed legal challenge is supported by the Access Social Care charity and the client, Y, is represented by Elizabeth Cleaver of Bindmans and Steve Broach of 39 Essex Street chambers. The letter before claim is the first step towards launching a judicial review case in the High Court.
Barrister Sian Davies from 39 Essex Chambers said that vaccine priority is a hot topic at the moment as the current top criteria for vaccines are all age related. She said: "It is only when you get to priority six that it includes people with underlying health conditions, but there is no priority within this group for those that live in care homes who don’t fall within these age-related categories.
"That lack of priority is being challenged by way of a threatened judicial review because of the inequality and human rights implications. That is a core concern of those who support and advocate for those with learning disabilities.”
Mencap says that throughout the pandemic people with a learning disability have faced shocking discrimination. Jackie O'Sullivan, Executive Director of Communication, Advocacy & Activism at Mencap, said: “They have faced significant obstacles accessing healthcare, been subjected to Do Not Resuscitate notices and suffered through cuts to social care support and severe isolation. There is an opportunity to put some of this right by ensuring that all people with a learning disability are urgently prioritised for vaccination.
“People with a learning disability have been dying disproportionately throughout the pandemic - they urgently need the protection of this vaccine. Their life expectancy is already over 20 years lower and they are up to six times more likely to die from Covid than the rest of the population, yet not everyone is being prioritised.”
What about people with moderate or mild learning disabilities?
The British Association of Social Workers has highlighted that whilst individuals with severe and profound learning disabilities are on the priority vaccine list, autistic children and adults do not fit into this category nor do people with moderate learning disabilities.
The association has asked the Government to recognise a range of different needs – not just clinical ones – as the current priority list does not acknowledge that people with learning disabilities died disproportionately at a younger age than the general population between March and July.
In November, Learning Disability England also wrote to the JVCI to ask that people with learning disabilities are prioritised in the Covid-19 vaccination programme and given the same priority as care home residents.
It received a reply in December from the JCVI Secretariat which stated that the committee considers that it is important to focus current efforts on persons with Down’s syndrome and persons with severe and profound learning disability. It added: “Appropriate identification of these persons in primary care records will facilitate their identification for vaccination. The Committee is in the process of considering the next phase of the vaccination programme.
“The points you have raised regarding the wider numbers of persons with mild and moderate learning disabilities will be taken into account in the relevant discussions and considerations ahead.”
Are people with learning disabilities more at risk of Covid-19?
A report published in November from Public Health England found that people with learning disabilities were three to six times more likely to die from Covid-19 than the general population during the pandemic’s first wave.
Age specific Covid-19 death rates per 100,000 population were higher for people with learning disabilities in all adult age groups but by a greater margin in younger age groups. Those aged between 18 and 34 had 30 times the death rate of the general population.
The NHS England’s Covid-19 Patient Notification System recorded 490 deaths of adults with learning disabilities with Covid-19 up to 5 June. This represents a rate of 192 deaths per 100,000 adults with learning disabilities, 3.1 times the rates for adults without learning disabilities.
If people dying with learning disabilities status ‘not known’ included the same proportion with learning disabilities as those for whom a status was recorded, there would have been 651 deaths of adults with learning disabilities, giving a rate of 254 per 100,000 population, four times the rate for adults without learning disabilities
BAME groups and learning disability
The report also found that the proportions of Covid-19 deaths in people with learning disabilities that were of a person from an Asian or Asian British group, or a Black or Black British group were around three times the proportions of deaths from all causes seen in these groups in corresponding periods of the two previous years, and greater than the proportions in deaths from other causes in 2020.
The number of deaths of people with learning disabilities from all causes in 2020 for White groups was 1.9 times the number in the two previous years. For Asian and Asian British groups, it was 4.5 times the number and for Black and Black British groups, 4.4 times.
What about carers?
Unpaid carers were included in the updated Covid-19 vaccination advice from the JCVI at the end of December.
It recommends that carers who are in receipt of Carer’s Allowance or are the main carer of an elderly or disabled person whose welfare may be at risk if the carer contracted Covid-19 should be included in priority six alongside people with underlying conditions.
Emily Holzhausen OBE, Director of Policy at Carers UK, said: “We are relieved that unpaid carers have now been included in the priority list for the Covid-19 vaccine which will provide a glimmer of hope for them after months of being placed under extreme stress managing the risk of infection. The vaccination will help reduce worry and fear, as well as open up the possibility of some carers accessing help for the first time in a year.
“Carers UK is working with Governments across all four nations about how best to ensure that carers in priority group six get their vaccinations, whether they are in receipt of Carer’s Allowance or the main carer for someone who is disabled or older and whose welfare would be at risk. Carers UK is encouraging carers to register with their GP as a carer on their patient record if they have not already.”
Carers UK have also welcomed the JCVI guidance that there should be some flexibility in order to minimise wastage of any vaccine. Within this approach, Carers UK recommends that unpaid carers are vaccinated at the same time as the person they care for if they are accompanying the person they care for to an appointment. This would help to achieve the latest JCVI advice on widespread vaccination, as well as providing earlier reassurance for carers and fewer trips to get vaccinated for each person they care for as well as themselves.
Am I protected after a single dose of a Covid-19 vaccine?
At the end of December, the UK chief medical officers (CMO) said they supported JCVI advice that the first doses of Covid-19 vaccines should be prioritised for as many people as possible on the Phase 1 JCVI priority list, in advance of second doses so as to provide more assured longer-term protection.
This means that second doses of both the Pfizer/BioNTech and Oxford University/AstraZeneca vaccines would be administered towards the end of the recommended vaccine dosing schedule of 12 weeks. They said this would maximise the number of people getting vaccine and therefore receiving protection in the next 12 weeks.
However, the 95% efficacy in reduction in Covid-19 cases shown in the Pfizer/BioNTech vaccine study comes at least seven days after the second dose, which was delivered 21 days after the first dose.
An editorial in the British Medical Journal (BMJ) said that the JCVI advice and the CMO’s decision to delay the second dose to between 4-12 weeks is not based on data from the trial, but on an assumption of what would have happened if the second dose hadn’t been given at 21 days. While assumptions can be useful for generating a hypothesis, alone they are not a sufficient reason to alter a known effective dosing regimen.
The World Health Organization has also advised that the Pfizer/BioNTech vaccine should be given “according to the following schedule: a single dose followed by a second dose 21 days later.”
The vaccine used in the Oxford/AstraZeneca study, however, is a different type of vaccine, according to the BMJ, for which there are prior data from other similar vaccines. It said: “In these circumstances, there is a valid argument to support delaying the second dose of this vaccine if there is not sufficient supply of the vaccine and the balance of public health risks warrants this.”
This would, in essence, mean that people in the lower priority groups will receive a vaccine far sooner, offering a good degree of protection to more patients more quickly.
Alison Bloomer is Editor of Learning Disability Today