Mencap has backed calls for the Government to set up a national body to monitor and investigate the deaths of people with a learning disability, as its research highlights that over a third (37%) of deaths of people with a learning disability are due to them not getting the right health care.

Mencap says that delays in diagnosis and treatment, lack of basic care and poor communication by health professionals, are costing the lives of hundreds of children and adults with a learning disability every year.

Tina Paplabropoulos died on 30 January 2009, aged 23 years old, at Basildon Hospital. Her death is being investigated by the Health Ombudsman. Tina’s mother Christine says:

I have lost one child needlessly - Tina was failed at every stage of her treatment…I need to know that my other daughter, who also has a learning disability, won't be treated with the same neglect and lack of dignity if she falls ill.

Mencap commissioned research by Professors Glover and Emerson of the Improving Health and Lives Learning Disabilities Observatory [1],which found that 1,238 children and adults die across England every year because they are not getting the right health care.

The research is a national estimate based on the findings of the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD), published today, which finds that people with learning disabilities are more likely to die prematurely compared to the general population. The Confidential Inquiry has been led by academics at the University of Bristol and funded by the Department of Health, and recommends the establishment of a National Learning Disability Mortality Review Body.

Jan Tregelles, Mencap’s acting chief executive, says:

A scandal of avoidable deaths on the scale of Mid-Staffs takes place every year for people with a learning disability in the NHS. These deaths, caused by poor care and delays in diagnosis and treatment, highlight the scale of discrimination faced by disabled patients in the NHS.

Mencap supports the Confidential Inquiry’s recommendations and we are calling on the Government to set up a national body to monitor and investigate the deaths of people with a learning disability, so we can learn from mistakes and stop this tragic waste of life.

Mencap has campaigned for many years against discrimination in the NHS. In 2007, the publication of its landmark report,Death by indifference, led to an Independent Inquiry, headed up by Sir Jonathan Michael.

The charity has continued to hear from families whose loved ones have died within the NHS. Last year, Mencap launched its report 74 deaths and counting, detailing these cases. 

ENDS

Mencap is in contact with and gives support to many families who have experienced the death of a loved one while in NHS care. If you would like to speak to a family, or a Mencap spokesperson, please contact: media@mencap.org.uk.

About Mencap

There are 1.5 million people with a learning disability in the UK. Mencap works to support people with a learning disability and their families and carers by fighting to change laws and 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.

[1]Estimating how many deaths of people with learning disabilities in England could be prevented, Professors Glover and Emerson of the Improving Health and Lives Learning Disabilities Observatory