Deaths of people with learning disabilities DOUBLED during Covid-19 crisis

The number of deaths among people with severe learning disabilities more than doubled in the midst of the coronavirus pandemic, damning statistics show.

The Care Quality Commission, which regulates services caring for people with disabilities in England, found that 386 people died between April 10 and May 15.

This was 134 per cent higher than the same period last year, when the total was 165.

Almost all of the extra deaths were accounted for by the coronavirus – some 206 of those people died with confirmed or suspected Covid-19.

Charity bosses representing the sector said the statistics were ‘deeply troubling’ and a ‘stark reminder’ that disabled people’s health rights were falling by the wayside.

The data was published today for the first time, almost three months since the first Brit was killed by the coronavirus.

More people with learning disabilities have died of Covid-19 during the five-week period from April 10 than died in total in that same period last year (206 compared to 165)

The Care Quality Commission, which regulates services caring for people with disabilities in England, found that 386 people died between April 10 and May 15. This was 134 per cent higher than the same period last year, when the total was 165

The Care Quality Commission, which regulates services caring for people with disabilities in England, found that 386 people died between April 10 and May 15. This was 134 per cent higher than the same period last year, when the total was 165

This took ‘too long’, critics said, and still only shows a partial picture. They have called for more widespread testing of people with disabilities, who are more likely to die of lung infections than the general population.

‘The devastating impact of Covid-19 on our community is shocking, but sadly not surprising,’ said Edel Harris, chief executive of the charity Mencap.

Mencap supports people living with learning disabilities such as autism, Down’s syndrome and Williams syndrome.

Ms Harris said: ‘We have long been warning that the healthcare rights of people with a learning disability are under threat like never before. 

‘Throughout this crisis, we have repeatedly challenged discriminatory healthcare guidance and practice, and we continue to support people with a learning disability and their families to access the treatment and support they have a right to.’

Dan Scorer, the head of policy at Mencap, said on Radio 4 this morning that the data was still missing the peak of the outbreak and its early days, meaning it only shows a partial picture.

He told the Today programme the data was ‘extremely worrying’ and said: ‘I think it makes it even more extraordinary that people in care homes people with learning disability can’t don’t have access to testing. 

‘That’s only available for older people and people with dementia. So that needs to change urgently. The Government needs to change the criteria for COVID testing

‘The Government has understandably had a very strong focus on social care and old people in social care but… remember that half of the social care budget is spent on disabled adults of working age.

‘Yet they’ve been largely forgotten from the discussion around supporting people in care homes, supporting people who receive social care in the community.’ 

PEOPLE WITH LEARNING DISABILITIES MORE LIKELY TO DIE WITH LUNG INFECTIONS 

Lung infections and breathing problems are the leading cause of death among people with learning disabilities, according to officials.

People with learning disabilities include those with conditions like autism, Down’s syndrome and Williams syndrome, as well as others who have severe brain damage or developmental delays.

The Scottish Government said in a report in 2013: ‘Respiratory [lung] disease is the leading cause of death for people with learning disabilities and is responsible for around half of all deaths among people with learning disabilities; these rates are much higher than for the general population. 

‘Pneumonia and aspiration [inhaling fluid] are more common which may be linked to the prevalence of swallowing and eating problems and gastro-intestinal disease amongst people who have profound and multiple needs.’

The report explains that poor oral health and the presence of bacteria in people’s mouths may contribute to this increased risk of lung infections.

People with some learning disabilities may also have difficulty swallowing – a symptom called dysphagia – which can contribute to the risk of infection.

Many of the muscles involved in swallowing are also key for healthy breathing – and strong breathing control helps to prevent infection by expelling bacteria or viruses by coughing, and stopping people from inhaling substances or fluids which might interfere with their lungs.

Working with the Office for National Statistics (ONS), the CQC analysed all death notifications from registered providers providing care to people with a learning disability and/or autism in the community and in hospitals. 

Of those who died, 184 were receiving care from social care services in the community, meaning they were living in private homes but had support from carers.

While 195 of the victims lived in residential social care – specialist care homes, for example.

There were fewer than five deaths notified in each of the other settings, including community health, hospice services and mental health services, the CQC said. 

The regulator said the Government should consider widening the availability of testing for people with learning disabilities, who are particularly vulnerable.

Chief inspector of adult social care at the CQC, Kate Terroni, said: ‘Every death in today’s figures represents an individual tragedy for those who have lost a loved one. 

‘While we know this data has its limitations, what it does show is a significant increase in deaths of people with a learning disability as a result of Covid-19. 

‘We already know that people with a learning disability are at an increased risk of respiratory illnesses, meaning that access to testing could be key to reducing infection and saving lives. 

‘These figures also show that the impact on this group of people is being felt at a younger age range than in the wider population – something that should be considered in decisions on testing of people of working age with a learning disability.’ 

The CQC said it is not mandatory for providers to tell them if a person who has died has a learning disability. 

Its analysis does not account for patients detained under the Mental Health Act – also known as being ‘sectioned’. 

Public Health England (PHE) said it was looking at the impact of Covid-19 on individuals with learning disabilities and would publish its findings. 

Dr Rhidian Hughes, chief executive of the Voluntary Organisations Disability Group (VODG) welcomed the analysis but said it had taken the CQC ‘too long’ to produce it. 

He said: ‘These findings are a sad and stark reminder to us all of the impact that coronavirus is having on people with a learning disability and/or autism. 

‘The figures are a wake-up call for Government to put right its testing programme that is currently neglecting disabled people of working age who use care services. 

‘The current focus of the testing programme is on older people in care homes with a diagnosis of a dementia. 

‘That decision needs to be reviewed urgently so that symptomatic and asymptomatic disabled people can readily access tests.’  

A Department of Health and Social Care spokesman said: ‘Every death from this virus is a tragedy and we are working hard to save lives and protect people most in need of support.

‘We have significantly increased testing capacity so everyone with symptoms of coronavirus can be tested, and have already carried out more than four million tests. 

‘We are working to improve our understanding of how different groups may be affected by the virus, including those with learning disabilities or autism, to ensure we can provide the best support and protect those most at risk.’ 

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