Change that leads to better lives

It’s time for greater action and accountability

Madeline Cooper-Ueki, Programme Lead for Learning Disabilities, discusses the publication of The Learning Disability Mortality Review Report

Le De R annual report

Its long been known that people with a learning disability have a lower life expectancy than the general population- 15-20 years less. Sadly, things clearly haven’t changed. Today sees the publication of the Learning Disability Mortality Review Programme report for 2016-17, the first of its kind since the LeDeR programme began.

Whilst LeDeR puts the onus on local investigations and improvement plans, today’s report shows that this is a national issue. No single area is alone in failing people with learning disabilities, especially those with higher support needs or additional communication needs.

This is not simply because of issues associated with their disability. Many of these people die in avoidable circumstances. It’s been a number of years since CIPOLD (Confidential Inquiry into Premature Deaths of People with Learning Disabilities) report (CIPOLD 2015) evidenced the issues and reasons behind this unacceptable situation.

The most common recommendations in the LeDeR report relate to the need for:

  • Inter-agency collaboration and communication
  • Greater awareness of the needs of people with learning disabilities
  • The understanding and application of the Mental Capacity Act (MCA)

These things should be simple. Programmes such as the Learning Disability Public Health Observatory (IHAL) have been essential in generating the much-needed practical resources and support around best practice. So why do we still have a gap in awareness and collaboration?

Ultimately this is about people. Each person, wherever they live, has the right to equal care and consideration. Each one of those avoidable deaths was a person, with people who cared for and loved them, and a number of people from health, care and community services were involved in their lives. Each bit of information sharing, communication and knowledge which should have taken place depended on people to do it.

It isn’t time to play a blame game, but it is time for greater action and accountability. The knowledge and understanding of how to improve things has already been established. It’s time to just get on and do it.

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