Fifth annual LeDeR report is published

The LeDeR report

The University of Bristol’s fifth annual Learning Disability Mortality Review (LeDeR) report was published yesterday 10^th June 2021. We send our condolences to those families who have lost loved ones.

LeDeR have been notified of 9,110 deaths of people with a learning disability in England between 1st January 2018 and 31st December 2020. The report states that in 2020 LeDeR were notified of 3,531 deaths with the most common cause of death being respiratory conditions. The most common condition-specific cause of death for adults with learning disabilities in 2020 was COVID-19. It has already been established that people with learning disabilities are at greater risk of premature and avoidable deaths than the general population and the report released yesterday highlights this continuing inequality. The combination of underlying health conditions and barriers to accessing timely healthcare have increased those risks during the current pandemic. Significant concerns highlighted in the report include:

• 42% of people who died in 2020 didn’t receive care that met good practice standards.
• Adults and children from Black/African/Caribbean/Black British ethnic groups, and mixed/multiple ethnicities had a higher proportion of treatable medical causes of death than people from other ethnic groups.

NHS England published yesterday, 10th June 2021, their third LeDeR: Action from Learning Report. Although there have been some improvements in the care of people with learning disabilities between 2018-2019, many people with learning disabilities have continued to receive inadequate heath care.

Our statement

The government must prioritise addressing the health inequalities faced by people with learning disabilities. They must accept and act on the recommendations published in the LeDeR report for NHSE to uphold the rights of people with learning disabilities to have their health needs met effectively.  This will include actions that:  

• Address diagnostic overshadowing
• Ensures equal access to healthcare for people with a learning disability and urgently address the additional inequalities experienced by ethnic minority groups
• Listen to and take account of family members and carers who know the person with learning disabilities
• Ensure all people with learning disabilities are offered productive and high quality annual health checks. The impact of health checks should be reviewed to ensure they are making a positive difference for people with learning disabilities and that any barriers to accessing health checks are addressed
• Ensure people with learning disabilities and their carers, wherever they are living, having timely access to covid-19 testing and Personal Protective Equipment and that all reasonable adjustments are made for the covid-19 vaccination

Read the full LeDeR report here.
Read the NHSE LeDeR: Action from Learning Report here.

Support from the CBF

We understand these figures are likely to be distressing for the families of children and adults with learning disabilities and/ or autism.

Resources on our website

Please see our website for resources and information related to Covid-19 for family carers, including information sheets about going into hospital with Covid-19 and accessing routine healthcare during this period.

Our COVID-19 resources

Health and challenging behaviour

Family Support Service

You can call the Family Support Service on 0300 666 0126 or email us at support@thecbf.org.uk

We are open at the following times:

• Monday – Thursday: 9am – 5pm
• Friday: 9am – 3pm

We offer information about challenging behaviour to anyone who provides support to a child, young person or adult with a severe learning disability. We can also signpost you to other specialist organisations and sources of information.

Please note we are a small support service so you may not be able to get support straight away. We will support families with urgent concerns as a priority.