Fourth annual LeDeR report

July 17, 2020

The fourth annual Learning Disabilities Mortality Review Programme (LeDeR) report has been released this week.

The LeDeR Programme reports on the deaths of people with learning disabilities over the age of four. It aims to reduce the number of early deaths and health inequalities amongst people with learning disabilities by ensuring that learning is gained from reviews of people who have died. The programme is led by the University of Bristol and commissioned by NHS England and NHS Improvement.

The fourth annual LeDeR report has identified that 3450 deaths were notified to the LeDeR Programme in 2019. In 122 of the cases reviewed, people received care that fell so far short of expected good practice that it significantly impacted on their wellbeing or directly contributed to their cause of death.

Many have expressed dismay at this, with Julie Bass, Chief Executive at Turning Point saying, 'As highlighted by previous reports, people with a learning disability continue to be denied access to the healthcare they have a right to. People with a learning disability die from an avoidable medical cause of death twice as frequently as people in the general population. Each of these deaths is an avoidable tragedy and action must be prioritised by government.

'We won’t see the “Covid-effect” LeDeR report until this time next year, but the issue of DNACPRs which do not meet the requirements of the Equalities Act or the Mental Capacity Act is raised again in this report, which notes that 78% of DNACPRs were ‘appropriate’ - meaning 22% were not. This is extremely concerning and something that we want to change.'

The report makes several recommendations for Government and its partners to act on. These include:

  • A continued focus on the deaths of adults and children from BAME groups.
  • For the Department of Health and Social Care to work with the Chief Coroner to identify the proportion of deaths of people with learning disabilities referred to a coroner in England and Wales.
  • Incorporating compliance with the Mental Capacity Act into the standards against which the Care Quality Commission inspects.
  • Establishing and agreeing a programme of work to implement from the Best practice in care coordination for people with a learning disability and long term conditions report, and liaising with the National Institute for Health Research regarding commissioning a programme of work that develops, pilots and evaluates different models of care co-ordination for adults and children with learning disabilities.
  • Adapting and adopting the National Early Warning Score 2 regionally to ensure it captures baseline and soft signs of acute deterioration in physical health for people with learning disabilities.
  • Considering implementing: specialist physicians for people with learning disabilities who would work within specialist multi-disciplinary teams; a Diploma in Learning Disabilities Medicine; and making ‘learning disabilities’ a physician speciality of the Royal College of Physicians.

Read the full report on the University of Bristol website.

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