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People with learning disabilities continue to die prematurely, new report shows

Tuesday 21st July 2020


Please note: This article contains distressing information.

The fourth annual report from the Learning Disabilities Mortality Review (LeDeR) programme shows that people with learning disabilities in England are more likely to die prematurely and from treatable causes of death compared to the general population.

34 per cent of the 3,060 deaths (of which 246 were children) reported in 2019 were from treatable conditions compared to just eight per cent of the general population

Two out of every five reviews of deaths (44 per cent) completed by experts at the University of Bristol showed that the person's care was not of a standard that meets good practice.

In more than 120 cases the care people received was so bad it significantly affected their wellbeing and may have "directly contributed" to their death. This was often linked to delays in treatment and omissions in the care provided.

LeDeR will report on deaths of people with learning disabilities as a result of COVID-19 later in the year.

What else did the report find out?

  • Women with a learning disability died on average at 59 years old (27 years earlier than women in the general population).
  • Men with a learning disability died on average at 61 years old (22 years earlier than men in the general population).
  • People who are from Black, Asian and Minority Ethnic (BAME) groups die even younger (43% of deaths of children were from BAME groups).
  • The biggest cause of death for people with a learning disability was pneumonia, an illness which is normally treatable in this country.

What were the reason that care wasn't as good as it should be?

  • Delays in finding out what was wrong with the person and treating their illness.
  • Different service not working well together.
  • The Mental Capacity Act not being followed as it should be.
  • People not being referred to specialist as quickly as they should be.
  • Families not being involved in decision about care.

The report makes a number of recommendation specific to children:

  • The need for a key worker to coordinate care and ensure all agencies are involved and informed.
  • Planning in relation to advanced care plans and end of life care.
  • Better planned and coordinated discharge from hospital.
  • Consistent support for and communication with families.

Watch this webinar on YouTube to find out more about the LeDeR report.

What is the NHS doing in response to this report?

NHS England and NHS Improvement has also published their second LeDeR: Action from Learning report and easy read version, which describes both the actions undertaken to date and new commitments to reduce health inequalities and premature mortality amongst people with a learning disability.

Annual Health Checks for young people with learning disabilities

One of the actions from the NHS report is to increase awareness of Annual Health Checks for young people aged 14 and over with GPs and parents.

We have produced a factsheet explaining how parents can get on the learning disability register [PDF] and access an Annual Health Check for their child. This resource is also shared in the NHS action report.

Some of the other things NHS England are going to do include:

  • Train unpaid and paid carers to know when there is a problem with someone's health sooner to stop them getting more poorly.
  • Find out why people from black and minority ethnic backgrounds do not get the health care they need.
  • Provide information for people with a learning disability about stopping, finding and managing pneumonia.

Need to talk?

If you want to talk about any of the issues raised by this report, we offer 1-1 telephone appointments with a family support adviser for parent carers looking for a listening ear, reassurance and practical and emotional support. 

Visit our Eventbright page, choose the day (morning, afternoon or evening), and when you register choose the time slot you want.

Contact to help co-design and deliver national Oliver McGowan training trial

On Friday we announced that Contact and the National Network of Parent Carer Forums (NNPCF) are two of 15 organisations who will help co-design and deliver a 12 month training trial aimed at health and social care staff who support patients with learning disabilities and autistic people.

Find out more.