Mencap responds to CQC’s data on the number of deaths of people with a learning disability notified to the care regulator between 10th April and 15th May 2020.

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

"A 134% increase in the number of reported deaths of people with a learning disability is deeply troubling, especially as many are dying of COVID-19 much younger than the general population.

"The devastating impact of COVID-19 on our community is shocking, but sadly not surprising, when 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.

"While we welcome Public Health England’s move to bring together data on deaths of people with a learning disability from COVID-19 across health, care and community settings, it must be completed and released as soon as possible so that steps can be taken to address any potentially discriminatory practice now before further lives are lost. We’ve been telling the Government for weeks that it is putting people with a learning disability at risk by not giving them priority testing; it’s time the Government acted to make sure that everyone who needs social care, regardless of their age, disability or care setting, is prioritised for testing. This is a matter of life or death, yet people with a learning disability continue to be forgotten."

Contact CQC’s press office for the full report: www.cqc.org.uk/news/stories/cqc-publishes-data-deaths-people-learning-disability

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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 (9am-3pm, Monday-Friday) or email helpline@mencap.org.uk. Or visit Mencap’s website: www.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, 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.