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At Greater RISK of Dying But Not A Vaccine PriorityCOVID’s Mental Health Impact on the Learning Disabled
Saba Salman reports on the absence of official recognition by the Government that people with learning disabilities have been disproportionately affected by the Coronavirus pandemic in a number of ways
Imagine the anxiety of knowing you are at a greater risk of dying from the Coronavirus but are at the back of the queue for a life-saving vaccination and, if hospitalised, doctors might decide not to save your life.
This is what learning disabled people are facing in this pandemic. They are the hardest hit, yet the impact on their mental health is being overlooked.
The general public’s wellbeing is at the top of the national agenda. COVID-19 is “probably the biggest hit to mental health since the Second World War”, according to the president of the Royal College of Psychiatrists, Dr Adrian James. Boris Johnson has acknowledged the effect on “Generation COVID” and appointed Dr Alex George as a youth mental health ambassador. Other developments include a £2 million study on the mental health impact for young people, health staff and those with serious existing mental health issues, funded by the UK Research and Innovation and National Institute for Health Research.
Addressing the emotional fall-out of the pandemic is, of course, welcome, but there is no sense that this recognition is inclusive.
This failure is staggering given the evidence about the disproportionate effect of the Coronavirus on disabled people.
New figures from the Office for National Statistics reveal that almost 60% of people who died with the Coronavirus in England last year were disabled (30,296 of 50,888 deaths). The latest NHS figures show that, in the first five weeks of the current lockdown, 65% of deaths among people with learning disabilities were from the virus. Public Health England also recently reported that learning disabled people are six times more likely to die from the virus than the general population and younger learning disabled people – like my sister Raana – are 30 times more likely to die.
At the same time, learning disabled people as a group are not a vaccination priority (although people with Down’s syndrome or those who have profound or severe learning disabilities are on the priority list). Some GPs and clinical commissioning groups such as Kent and Medway and Oxfordshire are vaccinating all learning disabled people, irrespective of the priority list. Although this is a positive move, a postcode lottery approach to jabs is unfair.
Concerns about access to vaccinations are highlighted in a new report from Learning Disability England. One learning disabled person told the charity: “The figures of people dying has really frightened me. I would feel much safer doing what I need to do like buying food if I had the vaccine. I am frightened to leave my house.”
The Byline Times Podcast recently challenged the fact that learning disabled people are not a vaccine priority. It heard from the charity Mencap about fresh ‘Do Not Attempt Cardiopulmonary Resuscitation’ notices being issued to patients with learning disabilities. This is despite the healthcare regulator, the Care Quality Commission, warning against this last year.
The Reality of Lockdown Life
Alongside all of this, learning disabled people have to cope with seismic changes to support and enforced separation from family and friends – which is especially challenging if they have communication issues and rely on face-to-face contact.
Initial findings from a UK-wide study on the Coronavirus and learning disability from Manchester Metropolitan, Warwick and Glasgow universities show that 50% of the 179 people interviewed had not been to a day centre since last March. The research describes people becoming withdrawn, anxious and feeling forgotten about.
And, to put this all in context, learning disabled people’s mental health issues are ignored at the best of times, with professionals often assuming that symptoms are part of someone’s disability.
It is therefore little wonder that the mental health of my sister Raana, who has the learning disability fragile X syndrome, has fluctuated. Isolated from family and regular activities, she is losing independence and confidence. She has had bouts of anxiety-driven skin-picking and nausea which her supported living staff are helping her with (she lives in a shared house with visiting support). Reflecting the vaccination postcode lottery, Raana’s GP has used clinical discretion to vaccinate everyone in her household, regardless of priority. This should help calm her anxiety.
Tessa*, an autistic, learning disabled woman who lives in her own flat with visiting carers, has similarly struggled but has not yet been vaccinated. She has been scratching herself and pulling out her fingernails. Her sister says that Tessa “sees the headlines and that COVID kills more learning disabled people”.
A new research paper on the pandemic’s impact on disabled people includes the story of Michael, an epileptic, autistic and learning disabled man who moved out of supported living and back in with his elderly parents when his activities stopped. His sister Alice described “a rapid breakdown in his mental health”, with Michael lashing out verbally and physically. He usually had one seizure every six weeks – this increased to five in the first few weeks of lockdown.
Stepping In with Solutions
In the absence of official recognition, innovative, grassroots and independent responses are helping to support learning disabled people’s mental health.
Andrew Lee, director of People First, a charity run by and for learning disabled people, co-chairs the COVID-19 Support and Action Group. He says that the online peer support group began because “people were feeling cut-off, isolated, forgotten about and we wanted a safe place to talk”.
The group has met weekly since last April, sharing information and mutual emotional support. Up to 20 people join from all over the country and discussions include isolation, vaccination and the lack of accessible information.
“Restrictions are changing so frequently, we don’t know what the safest thing is to do… we have members that haven’t been out of their homes since lockdown began first time and people been in tears as they haven’t been able to communicate with friends,” Lee says. “People are very worried and they want to get vaccinated.”
Other organisations have produced accessible resources to support learning disabled people’s mental health. Oxford, Glasgow and Lancaster universities have adapted an existing series of free, downloadable guided self-help booklets about the pandemic. The charity Beyond Words also offers a free, downloadable picture book.
Numerous disability charities are helping people to stay connected (although online support relies on someone feeling comfortable using technology). These include Midland Mencap‘s weekly online activity timetable and Seeability’s Creating Connections project uniting people through community groups.
Treating learning disabled people as experts and involving them in their own support is, as Andrew Lee says, crucial in tackling mental health issues: politicians should “speak to people with lived experience and get knowledge from them”.
*Name has been changed
Saba Salman is the editor of ‘Made Possible: Stories of Success by Learning Disabled People – In their Own Words’ and the chair of the charity Sibs, which supports the siblings of disabled children and adults