18 November 2020
Minister of State for Social Care
Department of Health and Social Care
39 Victoria Street
London SW1H 0EU
By email: email@example.com
I am writing to raise my concerns about the omission of people with learning disabilities within the priority list of vulnerable people eligible for the Covid-19 vaccination.
This is of particular concern given the recent analysis published by Public Health England which reported that people with learning disabilities were up to six times more likely to die from Covid-19 during the first wave of the pandemic.
Given this, I find it extraordinary that this extremely vulnerable group have been viewed as unequal to other vulnerable people in relation to Covid-19 vaccinations and strategies.
We very much welcome the recent addition of people with Downs Syndrome accepted as being extremely clinically vulnerable; however we know that it has taken a disproportionate number of deaths for this to be recognised. Furthermore people with learning disabilities in general are not viewed as having the same level of vulnerability as older people and as a result have consistently and repeatedly been denied equitable Covid-19 health interventions.
The impact of Covid-19 on learning disabled people and their families has been devastating. This can be of no surprise to the Government as we have continually raised the many health inequalities faced by people with learning disabilities and their families with the Government and Public Health.
On 5 June 2020, I wrote an open letter to Matt Hancock and MPs expressing my concern that access to Covid-19 testing was unavailable for the learning disabled communities because they did not fit into the collective understanding of the care sector.
In my letter (to which I am yet to receive a reply) I explained that many people with learning disabilities live in small shared supported living services, in their own homes or with their families and do not qualify for testing in the same way that people living in registered care, nursing and elderly care homes do, even though they are equally, and in some cases more, medically vulnerable.
Despite my letter and the pleas of a range of learning disability groups, we continue to battle for appropriate testing for people living in supported housing and their staff. We thank those in local public health and adult social care who have fought hard with us on behalf of so many who may not have the voice to do so themselves to receive the benefits of regular testing.
With the publication of the priority list for the vaccination programme it appears that yet again the same approach is being applied to vaccination as to testing, and as a result people with learning disabilities will continue to suffer higher mortality rates and health inequalities.
It is important to note that the report from Public Health England found the death rate for people with a learning disability was 30 times higher in the 18-34 age group. This means that the priority list for vaccination will absolutely miss a whole cohort of extremely vulnerable people.
This is unacceptable and as a result we need a fundamental policy change which means that all people with learning disabilities, regardless of age and the regulatory status of their accommodation, have access to regular testing, and that vaccines are made available on an equitable basis alongside people living in elderly and nursing care facilities.
We urge those in power to read the report from Public Health England, and listen to people who have a learning disability and those supporting them about their experiences and their right to health equality. It is essential that the Government better understands the sector and the impact that their decision-making has on the learning disabled population. Without this understanding we will continue to see a rise in inequality and avoidable and disproportionate death rates.
I hope you will be able to take action on this issue and look forward to hearing from you.
Gabby Machell CMr, FCMI
You can read our previous letter to Matt Hancock MP here Letter to Matt Hancock MP
The Westminster Society is calling for health equality for people with learning disabilities to ensure they have access to regular Covid-19 testing, and that vaccines are made available on an equitable basis alongside people living in elderly and nursing care facilities.
Our CEO has written to Helen Whately Minister of State for Social Care asking for a change in policy – please see her letter here.Read the letter to Helen Whately