The shortage of learning disability nurses in NHS posts and the role they play in reducing the often-fatal health inequalities affecting people with learning disabilities and autistic people was discussed at a recent meeting of the All-Party Parliamentary Group (APPG) for Disability.

Harrow Mencap co-hosted the event as part of the charity’s Learning Disability Nurses Not Hearses campaign, which aims to raise awareness of, and address the lack of specialist learning disability nurses posts across the UK to ensure that people with a learning disability can receive fair and equal treatment in the healthcare system on par with the wider population.

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Sir David Amess MP said: “There should be a team of specialist learning disability nurses in every hospital to meet the requirements of different syndromes, conditions, age groups and behaviours.”

Representatives from Harrow Mencap brought together parliamentarians, people with learning disabilities, carers, and healthcare and disability experts for the virtual roundtable discussion who shared their experiences of hospital settings both with and without learning disability nurses.

This included:

  • MP Lisa Cameron chair of the APPG for Disability.
  • Ken and Patricia Booth, the parents of Laura Booth who died at Royal Hallamshire Hospital in 2016, after being admitted for a minor operation which never took place. 
  • Self-Advocate Brendan Chivasa from Harrow Mencap.
  • Jonathan Beebee, Learning Disability Nurse, Royal College of Nursing and Glenn Batey, Senior Lecturer in Learning Disability Nursing, University of Sunderland.
  • MP Sir David Amess an officer of the APPG for Learning Disability.
  • Jim Blair, independent consultant learning disability nurse who was joined by Lauretta Ofulue, a student learning disability nurse who lost her 4-year-old autistic son Otito last year, and Scott Watkin, who leads engagement at SeeAbility and has a learning disability himself.
  • Professor Sam H Ahmedzai, Emeritus Professor, University of Sheffield.

The group also discussed learning disability nurses’ role in ensuring equal treatment of people with learning disabilities in healthcare, wider social attitudes, and how they would like to see the government and NHS address these problems in future. Since 2010, there has been a 40% reduction in the number of learning disability nurses from 5,368 to 3,223 in 2020.

Scott Watkin said: “We've got to start thinking that people are human beings with a learning disability, we are not aliens, we are not people who can't do stuff, with the right support we can lead independent healthy lives and work as well.”

Jonathan Beebee and Glenn Batey highlighted that these nurses are unique as the only healthcare profession supporting people with learning disabilities specifically. Jim Blair added: “We really have got to act now and enhance and save lives and that is what learning disability nurses can and do alongside others.”

Laura Booth’s story

The APPG also heard from Professor Sam Ahmedzai, who spoke about Laura Booth, a patient who was admitted for a planned minor operation that never took place.

He said this was because the hospital had failed to act on a seriously abnormal blood test taken two weeks previously, which made it too risky for her to have a general anaesthetic.

"She then caught hospital acquired pneumonia," he said. "And a cascade of other medical mishaps, all compounded by flagrant disregard for her nutrition needs and unlawful failure to comply with the Mental Capacity Act.”

Speaking about her daughter’s hospital experience without specialist support, Patricia Booth said: “The doctors wouldn't even go to the bed they just ignored her as though she wasn't there. Laura was putting her arms out to them, but they would just ignore her. She could do makaton and I was trying to tell them what Laura was doing, but they wouldn't even stop to listen, they'd go through the door.”

Learning Disability Nurses Not Hearses Campaign

Harrow Mencap works with over 1,400 people with a learning disability each year providing support to people from childhood through to older age and it runs a number of grant funded projects promoting inclusion and community engagement.

The Learning Disability Nurses Not Hearses Campaign, which recently won the Your UK Parliament Awards Digital Campaign of the Year Prize, is run by Harrow Mencap with support from the Royal Mencap Society and the APPG on Disability.

The campaign saw Harrow Mencap activists and self-advocates collaborate with residents, councillors, local MPs, and others to successfully secure the appointment of an extra learning disability nurse at the North West London NHS Trust last year.

Harrow Mencap are planning on producing a report on the APPG meeting, which will make the case for more learning disability nurses and highlight the impact the shortage is having on people with learning disabilities. Once the report is produced, the APPG will send a letter sponsored by supportive MPs to the Secretary of State for Health and Social Care.