New analysis released today by Mencap reveals this is dramatically higher than the general population in England and Wales [i].
The data refers to deaths of people with a learning disability in England that were reported to the Learning Disability Mortality Review (LeDeR) [ii].
It highlights the appalling rate of disproportionate COVID deaths of people with a learning disability compared to the general population in England and Wales, where 45% of deaths were COVID related [iii].
To help prevent further deaths, the charity says everyone with a learning disability must urgently be included in group 6 on the vaccine priority list.
The data from LeDeR and the Office for National Statistics (ONS) also shows that in every week since the end of November, people with a learning disability have died from COVID disproportionately from the general population. And as the second wave continues to unfold, the disparity between the proportion of COVID deaths has grown dramatically throughout December and January.
Despite these shocking figures – and previous data from Public Health England showing people with a learning disability in England are dying from COVID-19 at six times the rate of the general population – not everyone with a learning disability is being prioritised for the COVID vaccine [iv].
Currently those with a severe or profound learning disability and adults with Down’s syndrome are on the priority list, but people with a mild or moderate learning disability are not being prioritised at all (unless they have other conditions that mean they’re included in the priority list).
Yet further data shows that 65% of those with a learning disability who died from COVID in the first wave in England had a mild or moderate disability [v].
Many are also dying much younger – further data from Public Health England shows younger adults aged 18-34 with a learning disability are 30 times more likely to die of COVID than young adults in the general population [vi].
Even before COVID-19, people with a learning disability faced serious health inequalities and had a significantly lower life expectancy – with women dying on average 27 years younger and men dying 22 years younger [vii].
Including all people with a learning disability in at least priority group 6 would enable a smoother vaccine rollout. There is currently no required or consistent way of identifying and recording what constitutes a mild, moderate or severe learning disability on GP learning disability registers.
Having to categorise patients in order to prioritise them could lead to confusion over who is eligible, would add extra strain on overwhelmed medical professionals to categorise them, and ultimately mean people miss out and their lives are put at risk. Mencap estimates that including all people with a learning disability in group 6 would only be an additional 100,000-200,000 people, so would not overwhelm the rollout of the vaccine [viii].
Harry Roche, Communications Assistant and Ambassador at Mencap and who has a learning disability, said:
“The death rate for 18-34-year-olds with a learning disability is 30 times higher than the rest of the population. I’m 32 years old and have a learning disability - this statistic scares me. I’m calling on Boris Johnson and Matt Hancock to rethink and prioritise everyone with a learning disability. We are too often forgotten, don’t ignore us now.”
Dan Scorer, Head of Policy at the learning disability Mencap, said:
“People with a learning disability have long been forgotten and discriminated against, and never more so than in this crisis. They have died at greater rates, had Do-Not-Resuscitate (DNR) orders slapped on their files and suffered through severe isolation. The services and support they rely on have been removed and their physical and mental health has suffered – many are struggling to cope.
“The Government is not acting on the clear evidence that all people with a learning disability are highly vulnerable to dying from COVID-19, not only those already included in vaccine priority groups. While age is understandably the key determinant in the priority list, it doesn’t take account of the fact that a person with a learning disability dies on average over 20 years younger than the general population. Ultimately the JCVI’s medical approach to the priority list is flawed and fails to consider a host of social, economic and health inequalities. We are urgently calling for everyone with a learning disability – who are among the most vulnerable in society to dying from COVID - to be prioritised in group 6 for the vaccine.”
For further information, contact Mencap’s media team on:
- 020 7696 5414 (including out of hours).
Notes to editors
[i] NHS England (2020 and 2021). Weekly COVID-19 deaths of patients with a learning disability notified to LeDeR. This data includes deaths of people with a learning disability notified to LeDeR in England only. Delays in reporting deaths to LeDeR may also affect weekly figures and deaths can sometimes be reported weeks after they have happened.
[ii] This data is based on deaths of people with a learning disability reported to LeDeR however deaths do not have to be reported.
[iii] Office for National Statistics (2020 and 2021). Deaths registered weekly in England and Wales, provisional. This data includes deaths in the general population in both England and Wales.
[iv] [vi] Public Health England (2020). COVID 19 deaths of people identified as having learning disabilities: report.
These figures are based on deaths reported to the Disabilities Mortality Review (LeDeR) programme, and deaths in hospitals from NHS England’s COVID-19 Patient Notification System (CPNS) and are adjusted for under-reporting. Standardising for age and sex, the rate of COVID-19 deaths notified to LeDeR, from 21st March to 5th June 2020, was 4.1 times the rate for the general population of England. Adjusting this for under-reporting, the rate is estimated at 6.3 times the general population rate.
Using rates calculated only from reports to LeDeR, the rate was 30 times the rate for the general population at ages 18 to 34.
[v] University of Bristol (2020). Deaths of people with a learning disability from COVID-19.
Adult deaths notified to LeDeR with confirmed or suspected COVID-19 and who died between 2nd March – 9th June 2020, shows that 65% of people had a mild or moderate learning disability.
[vii] University of Bristol (2020) The Learning Disability Mortality Review (LeDeR) Programme Annual report 2019.
LeDeR’s report shows that people with a learning disability died from an avoidable medical cause of death twice as frequently as people in the general population (44% of deaths of people with a learning disability; 22% of deaths in the general population). And data also suggests that the disparity between the age at death for people with a learning disability (age 4 years and over) and the general population (all ages) in 2019 was 22 years for males and 27 years for females.
[viii] Mencap has estimated that the numbers will not impact the further roll out of the vaccine to other groups or key workers:
- In England, there are 900,000 adults with a learning disability
- 224,000 are 65+
- 25,000-27,000 people with Down’s Syndrome are estimated to be over 18, and are therefore in priority group 4
- Up to 350,000 people have a severe learning disability and therefore should be in priority group 6 (Source: NHS site)
This leaves 301,000, but this will be much lower when you factor in that people with a learning disability have a high proportion of other serious health issues. For example, they are around twice as likely to have diabetes (mainly type 2) as the general population. They also have higher rates of obesity, heart disease and also serious mental health issues. All these conditions would mean they’re included priority group 6 already. Mencap estimates that prioritising everyone in group 6 would mean adding a further 100-200,000 people to the list.
There are approximately 1.5 million people with a learning disability in the UK.
Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities.
Mencap supports thousands of people with a learning disability to live their lives the way they want.
For advice and information about learning disability and Mencap services in your area, contact Mencap’s freephone Learning Disability Helpline on 0808 808 1111 (10am-3pm, Monday-Friday) or email email@example.com.
What is a learning disability?
- A learning disability is a reduced intellectual ability which can cause problems with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life
- Learning disability is not a mental illness or a learning difficulty, such as dyslexia. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’
- People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example, someone with a severe learning disability might need much more support with daily tasks than someone with a mild learning disability.