Statement on NHS £5m funding for learning disability services

The Down’s Syndrome Association gives a cautious welcome to the announcement today that the Government is to provide an additional £5 million for addressing the health inequalities experienced by people with a learning disability.

Given the scale of the problems identified by the most recent LeDeR annual report, we fear however, that this funding is insufficient to address the widespread and ingrained inequalities many people with a learning disability encounter in some health settings.

We are pleased that Professor Stephen Powis has written to doctors and nurses across the NHS to ensure that a learning disability or Down’s syndrome should never be a reason to issue a ‘do not resuscitate’ order or cause of death on a death certificate. The fact that this could occur in a 21st Century NHS is wholly unacceptable and a Human Rights travesty.

It is of concern to us to note that the Third Annual Report of the LeDeR programme, published this week shows that:

  • Only 25% of the 1,081 deaths notified had been reviewed by local areas in England.
  • 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.

Submit your experiences to our Health Alert! Campaign

The continue to call on people to share their experiences of accessing health care (good or bad) through our Health Alert! Campaign. Case studies and personal experiences help us levy for a better future. Last month we were able to submit 30 case studies in our response to the latest consultation on mandatory learning disability training for health and care professionals. You can submit your concerns, or praise, regarding health care via email to or by calling our Helpline and telling your story to one of Information Officers on 0333 12 12 300.