Saba Salman speaks to people with learning disabilities to explore how the Government can prevent this group from being sidelined again – as they have been during the Coronavirus pandemic
“The Government should look at the mistakes they made, why people with learning disabilities had to go through what they did, and try and improve and make sure needs are met during the next pandemic,” says Moiz Tayabali Daudali, a learning disabled Londoner and a member of the charity Harrow Mencap.
A year on from the first COVID-19 lockdown, and after irrefutable evidence of how those disproportionately affected by the virus were an afterthought in the response to it, Daudali wants answers – and action to prevent this happening again.
As Byline Times has previously reported, Public Health England figures show that learning disabled people are six times more likely to die from the Coronavirus than the general population and younger learning disabled people are 30 times more likely to die. 80% of deaths among learning disabled people in England were COVID-related in the week ending 22 January, according to statistics from the NHS and the Office for National Statistics.
Meanwhile, a new report from the regulator, the Care Quality Commission, has highlighted how ‘do not attempt cardiopulmonary resuscitation’ notices have been placed on learning disabled people’s medical records in the pandemic – without their knowledge or that of their families. The latest findings from a UK-wide Coronavirus and people with learning disabilities study reinforce this wide-ranging impact on everything from a loss of support to isolation and the toll on people’s mental and physical health.
But, despite the additional risks the virus creates for a group already experiencing significant inequalities, the Government failed to prioritise this part of our population for the vaccine and relented only after high-profile lobbying by BBC radio presenter Jo Whiley on behalf of her sister Frances, alongside pressure from campaigners.
In terms of action to improve the lives of learning disabled people, Daudali and his peers at Harrow Mencap argue that one answer lies in its recently launched campaign, Nurses not Hearses. Daudali, who experienced depression during the first lockdown, is among those pushing the NHS and Government to tackle the national shortage of specialist learning disability nurses (numbers fell by 40% to 3,223 between 2010 and 2020).
Fellow campaigner David House adds that this needs to be combined with attitudinal change. “We are not treated as equal in the hospital and we want to be treated not just as people with learning disabilities, just be treated like everyone else,” he says.
Practically speaking, say the campaigners, healthcare services should always make “reasonable adjustments” – a duty outlined in equality legislation. This could involve taking time to communicate with learning disabled people or providing information in ‘easy read’ formats.
Accessible information, says Shalim Ali, a DJ and trustee at inclusive arts charity Heart n Soul, helps counter feelings of isolation and alienation. Ali says he relies on his support staff and family to translate information about the virus.
“When the Government talks about the science, I tend not to understand it all,” he says. “There was no indication at the start of COVID of any ‘easy read’ information.”
Ali stresses that some people may also need accessible information in languages other than English. He adds that, as we come out of lockdown, one way to ease isolation is for the Government to work with voluntary organisations and create buddying schemes for learning disabled people.
More widely, the pandemic has underlined the urgent need for funding and reform of the social care system that people rely on to live more independent lives. While the Government has repeatedly called for the public to “protect the NHS”, there has been no equivalent spotlight on social care.
The Government eventually wised up to the threat to one aspect of social care – residential care homes – but failed to acknowledge the impact on other parts of the sector, such as supported living. Last year, supported living staff did not have reliable supplies of personal protective equipment or access to testing and waited months for specific guidance. Social care was also effectively ignored in the recent budget, raising fresh fears about the sustainability of support services.