Government must suspend ‘do not resuscitate’ notices for Covid patients with learning disabilities
People with learning disabilities may be dying despite us having the expertise to treat them and keep them alive, writes Barbara Keeley MP. | PA Images
The government must step in to ensure that people with learning disabilities are not wrongly denied Covid treatment and ensure vaccine priority is extended to everyone with a learning disability.
At a time in the pandemic when we are all deeply aware of the role and value of NHS hospital treatment in critical care and with patients on ventilators, it is deeply concerning to hear reports that more people with learning disabilities have been told they would not be resuscitated or prioritised for ventilation if they were taken ill with Covid-19.
The Care Quality Commission reported in December that Do Not Attempt Cardio-Pulmonary Resuscitation notices (DNACPRs) had been wrongly allocated to some care home residents in the first wave of the pandemic, potentially causing avoidable deaths. Concerns were reported in 40 cases, mostly about DNACPR orders being put in place without the knowledge or consent of the person or their family.
Yet before the results of a further review of this practice by the CQC, the charity Mencap received reports in January of DNACPRs being issued to people with learning disabilities simply because they had a learning disability. This means that people with learning disabilities may be dying despite us having the expertise to treat them and keep them alive.
This is an issue which predates this pandemic. In the last report of the Learning Disabilities Mortality Review (LeDeR), 19 reviewers reported the inappropriate inclusion of “learning disabilities” or a related condition as a reason for a DNACPR decision.
NHS England made it clear last Spring that this was inappropriate. DNACPRs involve a sensitive process and they should only be issued based on clinical judgement after extensive consultation with the person affected and their family members. CQC inspectors noted that sometimes providers appeared to have conflated decisions about DNACPR/advance care directives with decisions about whether to admit people to hospital or provide COVID-19 treatment.
The CQC recommended that all care providers review whether any DNACPR decisions have been made appropriately but it now seems clear this recommendation did not go far enough.
The government has created a postcode lottery where people may be given or denied the vaccine based on the quality of their medical records - not their medical condition
The government must step in to ensure that people with learning disabilities are not wrongly denied treatment. Rather than ignoring the problem, they should suspend every DNACPR given to a person with a learning disability during this pandemic until they have been investigated. This is the only way to ensure that people with learning disabilities get the same medical treatment that we should all expect.
Throughout this pandemic, people with learning disabilities have been an afterthought for the government. Supported living settings had to wait weeks longer than care homes for guidance on keeping people living in them safe and the government only recently updated their guidance to recognise that some people with learning disabilities are particularly vulnerable to this virus. However, people with mild to moderate learning disabilities are still not being prioritised for vaccines.
But a report by Public Health England said that people with learning disabilities are six times more likely to die from Covid-19 than their peers. Among 18 to 34 year olds, this rises to 30 times more likely to die.
Groups with high risk of death from Covid-19 are rightly being prioritised for the vaccine, including people with Downs Syndrome. But hundreds of thousands of people with learning disabilities are still being left off the priority list because their disability isn’t deemed severe enough.
And by saying that only people with recorded severe and profound learning disabilities should get the vaccine over the coming weeks, the government has created a postcode lottery where people may be given or denied the vaccine based on the quality of their medical records - not their medical condition.
This could be solved by extending priority status for vaccines to everyone with a learning disability. This would ensure that nobody is wrongly excluded and would help prevent deaths.
While there have already been too many deaths of people with learning disabilities during this pandemic, the government has an opportunity to prevent this trend continuing. By acting now to end the use of inappropriate DNACPRs and to provide vaccines to everyone with learning disabilities, Ministers can show that they have not forgotten them.
Barbara Keeley is the Labour MP for Worsley and Eccles South.