Anger has greeted the latest data shared around the scale of premature deaths of autistic people and those with learning disabilities occurring in England and Wales.

Updated data published this week has revealed that individuals with learning disabilities are dying 25 years earlier than the general population.

Examples highlighted in the latest annual report from the Learning Disability Mortality Review (LeDeR) programme included 'Matt', who died aged just 29 from pneumonia.

The University of Bristol analyses the findings from completed reviews of deaths and publishes these in its annual reports. This year's report details that policies relating to the care and support of people with learning disabilities "still require strengthening". The report has 12 recommendations.

This is the third annual report of the LeDeR programme, which is the first national programme of its kind in the world. Between 1 July 2016 and 31 December 2018, 4,302 deaths were notified to the programme.

These are some of the report’s key findings:

  • By 31 December 2018, 25% (1,081) of deaths notified had been reviewed by local areas in England.
  • Adults with learning disabilities from Black, Asian and Minority Ethnic (BAME) groups appear to be under-represented in notifications of deaths.
  • Just under half of the reviews completed in 2018 reported that the person had received care which met, or exceeded, good practice.
  • One in ten (11%) of reviews completed in 2018 reported that concerns had been raised about the circumstances leading to a person’s death.
  • 71 adults (8%) were reported to have received care that fell so far below expected good practice that it either significantly impacted on their well-being, or directly contributed to their death.
  • Women with learning disabilities died 27 years earlier; men 23 years, when compared to the general population.
  • Pneumonia, or aspiration pneumonia, were identified as causes of death in 41% of reviews - conditions which are potentially treatable, if caught in time.
  • There was evidence of bias in the care of people with learning disabilities, resulting in unequal treatment.

Response

"It is appalling that so many deaths of people with a learning disability or autism could have been prevented," said Clare Taylor, Managing Director for Mental Health and Learning Disabilities at Turning Point."

"Every individual deserves the right to good healthcare. It is a point of pride in this country that the National Health Service is for everyone and yet people with learning disabilities and people with autism are simply not getting the same level of care."

"This is why it is a priority for Turning Point that the people we support have access to the healthcare services they need. Coming as it does, on the same day as the CQC interim review of restraint, seclusion and segregation, this report makes clear the way we treat people with learning disability in this society needs to change."

"This is the third LeDeR report and yet there are still too many avoidable deaths. The government need to take action as matter of urgency."

The LeDeR data follows publications in recent days from the Care Quality Commission and The Children's Commissioner again highlighting use of restraint, seclusion and segregation against people with learning disabilities, autism and mental health conditions.

"This is the third national report this week raising deep concerns about the quality of care for people with learning disabilities, some of whom may be autistic, said Tim Nicholls, Head of Policy at the National Autistic Society."

"This must not be allowed to continue. The Government and NHS England need to show leadership." 

"NHS England's commitment of £5 million to fund individual reviews of these deaths is welcome. But it is wrong that deaths of autistic people who don't have a learning disability could go without investigation."

“Research suggests on average autistic people have much worse physical and mental health than the general public – and may even be at greater risk of dying early. In many cases – as with people with a learning disability - this will be because of barriers autistic people face accessing vital health and care services."

"We are calling on NHS England to expand the review to cover the whole autism spectrum, so this unacceptable health inequality can be tackled."

Dan Scorer, Head of Policy & Public Affairs at Mencap, said: "Today’s report highlights the completely unacceptable levels of inequalities within our healthcare system. Nearly one in ten adults with learning disabilities received care that fell so far short of good practice that it significantly impacted their well-being or, more significantly, directly contributed to their death."

"Shockingly, 246 people had their underlying cause of death described as Down’s Syndrome, while 19 reviews found that the term ‘learning disabilities’ or ‘Down’s syndrome’ was given as the reason for ‘Do Not Resuscitate’ orders.

"These findings expose the underlying prejudice that people with a learning disability face in our health system and which contributes towards avoidable deaths. Can you imagine doctors refusing to save someone’s life because of their race or gender?" 

“The thousands of deaths that have still not been reviewed must be addressed as a matter of urgency with the new money announced, so that all reviews are carried out quickly and thoroughly."

"NHS England also need to address serious concerns from families that some NHS bodies are failing to cooperate with the programme and learn from deaths."

"Families of people with a learning disability who have died avoidably need to see concrete evidence that the recommendations from reviews are being acted on, both at a local and national level, to prevent deaths in future."

"People with a learning disability should not face a life cut short because the NHS is failing to provide them with the support and care they deserve and need."

"Research commissioned by Mencap in 2017 found that one in four doctors and nurses have never been given training about learning disabilities and 45% thought that the lack of training may be a contributing factor in avoidable deaths."

"That’s why we urge the government to get on with mandating and putting in place learning disability training for all healthcare professionals and to work with the NHS to ensure that no doctor or nurse sets foot on a ward without knowing how to meet the needs of their patients with a learning disability."