Nine point action plan announced in response to second annual report of Learning Disabilities Mortality Review (LeDeR)

The second annual LeDeR report showed that the median age of death for people with learning disabilities is 23 years younger for men and 29 years younger for women compared with the general population.

The report showed that people with learning disabilities were dying from sometimes entirely avoidable reasons. The main causes of death were problems breathing, blood or heart diseases and sepsis, and the report showed that some people might not have died if they had had better quality healthcare.

In response to the report, published in May from the University of Bristol, the government announced the following nine recommendations for improvement and action plans:

  • Improved communications between health and social care organisations
  • Improved health and social care records with electronic integration
  • Health Action Plans to be developed and shared with health and social care agencies
  • People with learning disabilities who have two or more long-term conditions should have a local, named health care coordinator
  • Providers should identify people who require reasonable adjustments, record the required adjustments and regularly audit their provision
  • Mandatory learning disability awareness training should be provided to all staff
  • National focus on pneumonia and sepsis in people with learning disabilities - including awareness on prevention, identification and early treatment
  • Local services to provide training and audit compliance ‘on the ground’ of the Mental Capacity Act
  • Take a national, strategic approach to ensure those carrying out mortality reviews and investigations are trained to be able to review deaths of people with learning disability

Charity Dimensions, one of the largest not-for-profit support providers in the UK, has launched a campaign called #MyGPandMe which calls for mandatory GP training on how to make reasonable adjustments for people with learning disabilities. As part of #MyGPandMe, Dimensions is conducting free, whole-practice GP training sessions co-led by people with learning disabilities.

The campaign brings together experiences of people with learning disabilities, their support workers and GPs to uncover the alarming primary healthcare inequalities experienced by people with learning disabilities, and the stark lack of training that GPs have received on caring for these patients.

“Dimensions welcomes the government’s much-anticipated response. It goes a long way to assuring us that the government recognises the urgent need to stamp out the profound health inequalities that people with learning disabilities experience,” Alicia Wood, Head of Public Affairs at Dimensions said.

“The proposal for mandatory learning disability awareness training for health and social care staff is a landmark step in the right direction. Our research shows that a staggering 98% of GPs are calling for further training on how to care for patients with learning disabilities. Through training healthcare professionals first-hand, co-led by people with learning disabilities, we’re already seeing the difference that this can make to eradicating health inequalities and increasing GP confidence.

“Increasing health, wellbeing and life expectancy of people with learning disabilities requires a holistic approach also involving their families, commissioners, and health care providers. We want to work closely with government to make this a reality, and to proactively roll out mandatory training more widely – our door is very much open.

“Proposals for named health care co-ordinators are also a welcome step to improving coordination and improving accountability, but having accountable local leadership in CCGs and on Health and Wellbeing Boards should also be a priority.

“The government response has rightly focussed on preventing early deaths. Many layers of the system surrounding the deaths of people with learning disabilities would benefit from greater scrutiny so we can better understand the real issues underpinning this. We would like to see the government tackle this issue head-on, in particular with the coronial system.”

Read the easy read version of the report.

Photo courtesy of Dimensions charity.