Robina Mallett – Family Carer and member of the National LeDeR Steering Group blogs about why some people with a learning disability are dying before they should and what is being done to prevent it. 

Our relatives with learning disabilities tend to have poorer health and die younger than the rest of the population. This is often due to the ways their healthcare and support are given, rather than because of any underlying condition to do with their learning disability. How can we change this situation?

One way of doing this is to review the death of everyone with a learning disability and see if anything helpful can be learnt about what worked well and what did not, in the social support and healthcare they received. In this way we will be able to identify what needs to be changed to improve people’s health.

From December, throughout England, every death of someone (child or adult) with a learning disability will be reviewed.

The National Learning Disability Mortality Review programme (known as LeDeR) is being led and supported by the University of Bristol, but each region of NHS England is responsible for rolling out the system of reviewing deaths in their area of the country. It will work like this:

1) When someone with a learning disability dies anyone can call 0300 777 4774 or give information online

2) A trained reviewer will be asked to find out about the individual by contacting people who knew them well and reading some case notes held on them. Family members, close friends and any day-to-day staff will usually be invited to talk about the person and answer questions.

Although this happens at a very difficult, sad time we have been told that many relatives find it comforting to talk about their family member – who they were, what they enjoyed, how things happened to and for them – with someone who is genuinely interested in their lives and the care and support they received.

Family members usually know their relative with learning disabilities better than anyone; they have the whole picture of the person rather than a limited view and can give details that are not always written down. They can also say whether they, as family carers, were listened to and treated well as partners in the care and support of their relative.

If families are able to help with the review we really appreciate their contributions, but if not, we understand.

3) By talking to everyone concerned the reviewer will write an Action Plan to take account of the learning. The plan (which will not name the person who has died) will be given to the local area steering group, who will see that actions arising from the learning do happen and monitor if recommended changes lead to improvements. The team in Bristol will also read all action plans so they can look out for patterns and ideas that the whole country needs to learn from.

We have early examples of changes that have begun to reduce the difference in well-being and life expectancy of people with learning disabilities. Continuing to review every death means we can carry on learning and improving care and support.

Find out more on the LeDeR website or contact the South of England Regional Co-ordinator Robert Tunmore – r.tunmore@nhs.net

Robina Mallett – Family Carer, National LeDer Steering Group – robinamallett@blueyonder.co.uk