High death toll among people with learning disabilities raises alarm

The PHE report is based on data gathered by the English Learning Disabilities Mortality Review and NHS England’s Covid-19 Patient Notification System, which records deaths in hospital settings.

Not all deaths are recorded routinely

From 21 March to 5 June, 451 people in every 100,000 registered as having a learning disability died with Covid-19 – a death rate 4.1 times higher than the general population after adjusting for factors such as age and sex.

However, these databases do not record every death of those with a learning disability. As a result, researchers estimate that the true rate may have been as high as 692 per 100,000, or 6.3 times higher than the population at large.

PHE suggests:

• death rates were higher among younger adults with learning disabilities when compared to their older counterparts
• the disparity could be linked to high rates of conditions such as diabetes and obesity among people with learning disabilities
• having difficulties in recognising symptoms and understanding guidance could be another factor
• adults in residential care settings were particularly at risk of death – perhaps because they tend to be older and have a more severe type of disability
• people with certain conditions – such as Down syndrome, are more prone to experiencing respiratory infections – can face a greater risk of dying with Covid-19

 It is deeply troubling that one of the most vulnerable groups in our society suffered so much during the first wave of the pandemic. We must do everything possible to prevent this happening again [Professor John Newton, PHE]

'Deeply troubling'

Professor John Newton, PHE director of health improvement, said: ‘It is deeply troubling that one of the most vulnerable groups in our society suffered so much during the first wave of the pandemic. We must do everything possible to prevent this happening again.

‘There are now regular tests in care homes to make sure cases of coronavirus can be quickly identified and isolated, even if people do not recognise the symptoms themselves.

‘But with cases developing across the country, it is essential to practise rigorous infection control if you are in contact with someone with a learning disability, whether or not they live in a care home’

Staff 'tested regularly'

Social care minister Helen Whately said: ‘A third of those with learning disabilities who sadly died were living in residential care. There is now regular testing of staff and residents in care homes, and testing has also been rolled out to supported living settings in high-risk areas.

‘We’re also offering free PPE [personal protective equipment], and the joint committee on vaccines and immunisation has proposed those living and working in care homes should be top of the list for vaccination.’ 

The PHE report noted that some people with learning disabilities struggle to recognise Covid-19 symptoms or follow government advice on obtaining tests, self-isolation, social distancing and infection prevention and control.

Care home concerns

In response, the Down’s Syndrome Association (DSA) said: ‘Typically, adults who have Down’s syndrome live with their family or share a house in a supported living setting. It is of great concern to us to note that almost half of those adults who had Down’s syndrome and died from Covid-19 during the first wave, were living in a care home.

‘More than half also had a diagnosis of dementia. Priority must be given to measures to prevent the spread of Covid-19 in these settings, including regular testing of care staff.

‘We now have a greater understanding of how the virus may affect particular groups of people and we now know that additional vigilance and care is needed in the support of adults who have Down’s syndrome, especially for those over the age of 40.

‘This, together with better treatment interventions, should mean better outcomes for anyone who has Down’s syndrome who does become infected with Covi-19.

Consent is vital

But while the DSA said a decision by UK chief medical officers to add every adult with Down’s syndrome to a ‘clinically extremely vulnerable’ list should encourage people who have underlying health conditions to take extra care, it added: ‘However, professionals also need to ensure that adults who have Down’s syndrome continue to be treated as unique and individual and that the advisory guidance for those on the list is not imposed arbitrarily or without their consent.’

To see the report in full, visit: www.gov.uk/government/news/people-with-learning-disabilities-had-higher-death-rate-from-covid-19

The Down’s Syndrome Association’s website offers easy read guidance on staying safe and healthy. Visit: www.downs-syndrome.org.uk/coronavirus-covid-19

The association has signed a letter being sent by umbrella organisation Learning Disability England to health and social care secretary Matt Hancock, calling for better support for people with learning disabilities. It invited others to sign the letter. See: https://www.learningdisabilityengland.org.uk/wp-content/uploads/2020/11/Social-Care-Taskforce-Minister-Letter-Final.pdf