It is often said that the measure of any nation or society is judged on the basis of how it treats its most vulnerable members. I believe that during the pandemic this measure has been put seriously to the test. Take the plight of people with learning disability who are at risk of being forgotten.
It is now known that more than 460 people with a learning disability have died from coronavirus since the start of the outbreak, new data shows.
NHS England has revealed that 1,029 people with a learning disability died in England between March 16 and May 10, with 45.4% (467) reported to The Learning Disabilities Mortality Review (LeDeR) linked to coronavirus.
Responding to the data, learning disabilities charity Mencap said this is a higher percentage than the proportion of COVID-19-related deaths in care homes, at 31.1%.
People with a learning disability are being forgotten
Mencap warned that people with a learning disability are “being forgotten in this crisis” and called for urgent learning disability policies and procedures to “address any potentially discriminatory practice now”.
Edel Harris, chief executive of Mencap, said: “We are deeply troubled by the latest LeDeR data which shows that people with a learning disability are dying at double the rate than in previous years. Almost half of deaths of people with a learning disability notified to LeDeR were COVID-19-related – higher than the proportion of COVID-19-related deaths in care homes – yet people with a learning disability continue to be forgotten in this crisis.
“Over the last few months we have repeatedly challenged discriminatory healthcare guidance and practice and continue to support people with a learning disability and their families to access the treatment and support they have a right to. That’s why it is more important now than ever that the Government and NHS urgently complete a timely, full and accurate assessment of COVID-19-related deaths of people with a learning disability across all settings so that steps can be taken to address any potentially discriminatory practice now.”
CQC have reported a 175% rise in deaths of people with learning disabilities.
Earlier this week, care groups called for greater clarity on how the coronavirus is impacting people with a learning disability and/or autism after the CQC reported a 175% rise in deaths.
Figures released by the CQC, in response to a BBC request, revealed that the provisional number of deaths across all settings where people with a learning disability and/or autism may live rose to 3,765 compared with 1,370 in the same year-earlier period.
But the figures came with the caveat that the real figures could be as much as “40 times smaller” once the deaths of people receiving other types of care in these settings is separated out.
Government needs to be more inclusive
Dr Rhidian Hughes, chief executive of the Voluntary Organisations Disability Group (VODG) said the government needs to be more inclusive of all groups using social care services, including people with a learning disability. “It is dismaying that the government’s response continues to overlook social care in its entirety – particularly the needs, rights and entitlements of disabled people. We cannot continue to have a situation whereby disability services are continually neglected from government’s policy responses,” he added.
“Every death must count, and we continue to call for the open and transparent release of data on the deaths of people with a learning disability from COVID-19. We must measure all lives lost. It’s only through the consistent routine reporting and publication of data that the necessary intelligence to help inform current and future service responses can be achieved.”
Chris Hatton who is an academic at the Centre for Disability Research at Lancaster University says “This data is obviously awful and shocking. These are individuals who are loved. These are people who have died. But what is also shocking is that it has taken until week 10 of the pandemic for the public to see these figures”.
The task of government to combat the spread of covid-19 has been burdensome, given so little was known about the virus. But one could argue that the availability of information has left much to be desired. We all know how long it took to include daily care home death rates and death rates in all settings during government briefings. As it turned out, this was probably because there was not the means available for obtaining the information or fear of publishing it. Little was known about the death rates of people with learning disability until a request form the BBC to the Care Quality Commission revealed that the rate had tripled due to Covid-19.
The government needs to be more inclusive of all groups using social care services including those with learning disability.
Historically, the government will be judged on how it has cared for the most vulnerable in our society, but the plight of people with learning disability seems to have been forgotten because of a single stratagem, that is to protect the NHS at any cost.
Albert Cook BA, MA & Fellow Charted Quality Institute Managing Director Bettal Quality Consultancy