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Coronavirus UK: Death rates of people with autism have DOUBLED

UK News

The NHS has launched an ‘urgent’ review after figures showed death rates of people with learning disabilities and autism have doubled during the Covid-19 crisis. 

The dramatic U-turn comes after it had previously reassured the deaths of people in this group had been ‘within expected range’. 

Analysis of data by two separate organisations showed that in April and May, more than double the number of people with a learning disability, some of whom may also be autistic, died compared with the same period last year.

Providers registered with the Care Quality Commission reported 386 deaths between April 10 and May 15 2020, a 134 per cent jump on the 165 people in 2019.

While the learning disability charity Mencap’s analysis showed 1,029 deaths were recorded in April and May – double the expected 480. 

Charity bosses called the rise ‘deeply troubling’ and a ‘stark reminder’ that the rights of disabled people were falling by the wayside. 

The NHS has now admitted the CQC data, presented a month ago, warranted an investigation.

It has been criticised for acting too slow and potentially costing lives by failing to protect those with disabilities who largely fall under NHS care.

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)

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)

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 review by NHS England and Improvement (NHSE/I) was discovered by the Health Service Journal.

Edel Harris, chief executive of the learning disability charity Mencap, welcomed the review, but said those with disabilities had largely been ‘forgotten’ during the pandemic.

She said: ‘NHS England’s review must be urgently completed and released so that steps ​can be taken to address ​inequalities and discrimination before further lives are lost. This is a matter of life or death. 

‘We can’t ignore the wider reality that people with a learning disability have been largely forgotten during the pandemic. 

‘Even though they have been disproportionately hit by Covid-19, they have not been prioritised for access to coronavirus testing and we haven’t seen timely data on deaths or any real efforts to address people’s needs and concerns.

‘Health inequalities for people with a learning disability have been evident for a long time, but this crisis has exacerbated these with serious consequences.’  

On May 15, the NHS said the Covid-19 death rates among people with learning disabilities, which include conditions like autism, Down’s syndrome and Williams syndrome, had been broadly in line with the rest of the population.

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.

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It said two per cent of Covid-19 deaths specifically, in hospitals, had been in those with learning disability and autism, which NHS England said was roughly proportionate to the number of people with a learning disabilities or autism in the population.

But on June 2, the Care Quality Commission, working with the Office for National Statistics (ONS), published data which suggested those with learning disabilities and/or autism had been disproportionately affected by Covid-19. 

It found that from 10 April and 15 May, there were double the amount of deaths that were normal. This is only part of the picture because it does not include figures from the start of the pandemic or in the past six weeks.

And it only counted analysed death notifications from providers registered to the CQC providing care to people with a learning disability and/or autism in the community and in hospitals. 

Of the 386 people who died, 202 were caused by the coronavirus. But 180 had not been caused by Covid-19 – an excess of 25 compared with the previous year, when 165 people died.

The CQC did not offer an explanation for these ‘excess deaths’ unrelated to Covid-19. But generally, excess deaths during the pandemic are thought to be as a result of compromised healthcare for other conditions, or Covid-19 deaths that have not been accounted for due to a lack of testing. 

None of the deaths across the data had been under the age of 25. Most had been in the age bracket 55-64 years. 

It followed the results of an analysis by Mencap which looked at deaths reported to the Learning Disabilities Mortality Review (LeDeR) programme, a database published by the NHS. 

It found an additional 550 deaths of people with a learning disability than expected for April and May.

Mencap said Public Health England estimates that over 3,400 people with a learning disability die each year, with an even number of around 240 people each month. 

However, over April and May, 1,029 deaths of people with a learning disability, or around an additional 550 deaths than we would have expected for this time of year, were reported to LeDeR. 

The NHS does not provide death data that can be used to compare death rates among those with learning disabilities and/or autism now compared with last year.

But it has now acknowledged the shocking statistics provided by the CQC.

The HSJ saw an announcement posted on a social media group for Royal College of Nursing members last week, in which NHSE/I said they were ‘urgently seeking clinical reviewers with experience in learning disability’.

HSJ reports that the message said: ‘The effects of coronavirus are having a far-reaching impact on all our lives. As we learn more about the virus, we are taking steps to make changes to safeguard our well-being.

‘For people with a learning disability, the number of deaths has doubled during the Covid pandemic. (compared to data on the number of deaths recorded during the same period last year).

‘As a result, we have a large number of deaths of people with a learning disability who have died during the pandemic whose deaths we want to review.’

When asked about the message by HSJ, NHSE/I did not respond. MailOnline has also approached NHSE/I for comment.

NHSE/I told The Spectator the suggestion that there would be an ‘urgent’ review was wrong and ‘from a badly drafted job advert’.

The NHS would reportedly review the deaths in the normal way – however the advert said clinicians would take two days to carry out the review, which is considerably shorter than normal.  

Writing in The Spectator, commentator Nick Cohen said there were dozens of warnings since the early stages of the pandemic that those with learning disabilities would need protecting.  

They are at a higher risk of respiratory illnesses and have higher rates of obesity, considered to be a risk factor for severe Covid-19.

Mr Cohen slammed the NHS for being ‘uninterested’ and in ‘no rush’ to count excess deaths in that group.

He wrote: ‘Official inquiries have examined the disproportionate death tolls among ethnic minorities. But on people with autism and learning disabilities, nothing. Or so little it might as well have been nothing.  

‘Until yesterday, that is, when months late – and long after the time when speaking out might have saved lives – NHS England announced that it had finally accepted what the Care Quality Commission had been telling it since June.’ 

The CQC said of the people they analysed that had died, half were receiving care from social care services in the community, meaning they were living in private homes but had support from carers, and half lived in residential social care – specialist care homes, for example. 

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: ‘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.’ 

Recent Mencap analysis of NHS England data reveals that almost half of deaths of people with a learning disability registered were COVID-19-related, which is higher than the proportion of COVID-19-related deaths in care homes (31.1 per cent in May).

Ms Harris added: ‘It is shocking that a higher proportion of people with a learning disability have died from Covid-19 than people in care homes. 

‘And people with a learning disability are dying of the virus at a much younger age than the general population.’  

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