Edel Harris, Chief Executive of the learning disability charity Mencap, said:

“We are deeply saddened to see that at least 451 people with a learning disability and/or autism have died of COVID-19 in acute hospitals in England during this crisis. This is a huge loss to our community and our hearts go out to their family and friends at this difficult time.

“This data, albeit incomplete, is an important first step to understanding the impact the coronavirus pandemic has had on the lives of people with a learning disability. We are glad that NHS England listened to our calls and published this data; however, big questions remain. Information about 6,181 people who have died remains incomplete and this must be addressed as a matter of urgency. With the healthcare rights of people with a learning disability under threat, it is more important now than ever that we have a timely, full and accurate picture of COVID-19-related deaths of people with a learning disability across all settings, not just acute hospitals, so action can be taken to address any issues revealed by the data.

“We have long been concerned that some people with a learning disability have been struggling to access the healthcare they need and have a right to during this crisis. We sounded the alarm about discriminatory guidance from NICE which would have deprioritised people with a learning disability for intensive care treatment because they have support needs. Despite our success in getting this changed, GP surgeries have sent letters to people with a learning disability asking them to consent to DNACPR notices being placed in their medical file and discouraging them from going to hospital should they contract coronavirus, because of their care needs and that they would be unlikely to benefit from medical treatment. We urgently need a complete picture so that steps can be taken to address any potentially discriminatory practice now. This is a matter of life or death and the lives of people with a learning disability matter equally.”

At least 451 people with a learning disability and/or autism have died of COVID-19 in acute hospitals in England so far during the coronavirus crisis, according to NHS England’s COVID-19 total announced deaths 14 May 2020. Access NHS England’s data ‘COVID 19 total announced deaths’ online here.

Visit Mencap’s website to access easy read information about coronavirus and resources on your rights and how to ask for reasonable adjustments in hospital.

If you are concerned that you or someone you’re supporting is struggling to access the healthcare they need, please contact Mencap’s Freephone Learning Disability Helpline on 0808 808 1111 (9am-3pm, Monday-Friday) or email helpline@mencap.org.uk.

-ENDS-  

For further information, contact Mencap’s media team on media@mencap.org.uk or 020 7696 5414 (including out of hours).  

For advice and information on learning disability, including advice on coronavirus and healthcare, please contact Mencap’s freephone Learning Disability Helpline on 0808 808 1111 (8am-6pm, Monday-Friday) or email helpline@mencap.org.uk. 

Notes to editors

About Mencap

There is 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 and also campaigns to change laws, improve services and challenge negative attitudes towards people with a learning disability. Visit www.mencap.org.uk.

Treat me well campaign

In 2018, Mencap launched our Treat Me Well campaign to help save lives and to transform how the NHS treats people with a learning disability in hospital.

It is estimated 1,200 people with a learning disability die avoidably every year when timely access to good quality care could have saved them. While people with a learning disability die on average over two decades younger than people without a learning disability.

Over ten years after Mencap highlighted the issue of people with a learning disability dying avoidably (PDF), Mencap’s Treat me well campaign is working with healthcare professionals and campaigners to change that.

Working alongside healthcare professionals and campaigners like Paula McGowan, mother to Oliver McGowan who died in hospital, the Treat me well campaign has succeeded in securing mandatory learning disability training for all health professionals which will be named in honour of Oliver and will be piloted shortly.

Simple changes in hospital care can make a big difference – better communication, more time and clearer information.

But we know the treatment that people with a learning disability get in hospital is still not good enough in many parts of the country. This has to change.

Our Treat me well campaign is working with healthcare professionals and campaigners to make sure people with a learning disability are treated equally in hospital and get the healthcare they need and have a right to which can help to save lives.  

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.