Oxford learning disability group's coronavirus deaths fears

The call from My Life My Choice comes after figures released by the Care Quality Commission (CQC) revealed there had been a 175 per cent increase in the number of unexpected deaths in locations where people with learning disabilities and autism are cared for.

Also read: 'Local outbreaks must be tracked and traced' warns Oxfordshire public health boss

Ben McCay, chair of trustees at self-advocacy charity, said: "It's really important that people with a learning disability are not forgotten during the Covid-19 crisis.

Ben McCay

"The CQC figures indicate what we always feared, that people with a learning disability in care settings are at the same extreme risk of catching the coronavirus as older people."

Oxfordshire Safeguarding Adults Board, made up of local health organisations, said it saw no increase in notifications of deaths of people with learning disabilities in the county in the first four months of 2020.

However Mr McCay also raised concerns over testing, saying: "Quite rightly, older people in care settings are beginning to get access to testing but people with a learning disability are not treated with the same priority; they need to be or the number of deaths will escalate.

Also read: Oxford hospital worker dies from coronavirus

"If a vaccine is finally developed we want people with a learning disability to be given priority and not forgotten again. Our lives do matter as well."

While people over 65 are entitled to be tested for Covid-19, care home residents with a learning disability are not automatically eligible.

The current Government guidance states: "At the moment, you can only get tests if your care home looks after older people or people with dementia."

Dr Sara Ryan

Sara Ryan, who became a champion of disability rights after her son Connor Sparrowhawk, who had epilepsy, autism and a learning disability, drowned in a bath at Slade House in Headington in 2013, told the BBC on Thursday: "Families are terrified at the moment about what is happening to their children."

Dr Ryan, a patron for My Life My Choice, said those with learning disabilities were being treated as 'disposable bodies' describing it as 'off-the-scale unacceptable'.

The CQC figures, which cover April 10 to May 8, show there were 3,765 deaths in care settings where people with learning disabilities and autism may live compared to 1,370 in the same period last year.

A caveat with the data did add the true figure 'could be as much as 40 times smaller' once the data on deaths of people who receive other types of care from these providers was separated out.

The independent health watchdog said detailed analysis it is currently working on will give a more accurate understanding of the impact of coronavirus on autistic people and/or people with a learning disability.

Also read: Covid-19 now at 40 per cent of Oxford care homes

A spokesperson for the Oxfordshire Safeguarding Adults Board partnership, representing Oxfordshire County Council, Oxfordshire Clinical Commissioning Group, Oxford University Hospitals NHS Foundation Trust and Oxford Health NHS Foundation Trust, said: “We are committed to ensuring that people with learning disabilities have the same opportunities during their lives as anyone else."

They said the board set up a subgroup three years ago to review the deaths of all people with learning disabilities as part of the Learning Disabilities Mortality Review (LeDeR) Programme.

The spokesperson added: "This panel meets regularly and includes service providers, commissioners and representatives of those who use services and family carers; currently this is Oxfordshire Family Support Network.

“Notifications of all deaths come from any agency, or the public through to the LeDeR programme.

Also read: Fears lack of testing in Oxford care homes is fuelling virus spread

"Individual reviews are undertaken, including contributions from family and carers, with summaries and themes being used inform how services are developed."

They said during the coronavirus pandemic this review process has been 'enhanced' with a review of all cases within two weeks, adding it had found in the first four months of 2020 there has been no increase in notifications of deaths of people with learning disabilities.

They added: "All those reviewed who have presented with symptoms of Covid-19 have had care and treatment plans with full access to specialist support when this has been needed.

"There has been clear planning between services to ensure that the person can go home, with any additional support they may need.

On testing they said: "Any service which has an outbreak of Covid-19 in Oxfordshire, regardless of the residents they are supporting, can currently access testing through local arrangements.

"Oxford Health NHS Foundation Trust’s teams are regularly visiting and testing residents across all settings including supported living and residential/nursing care services.

"For anyone showing symptoms and information regarding access has been widely publicised and disseminated through associations of care providers.”