Harrow Mencap, APPG host lifesaving Learning Disability Nurse Meeting

The West London charity Harrow Mencap took their campaign for lifesaving learning disability nurses and reasonable adjustments to the All-Party Parliamentary Group (APPG) for Disability.

On 8 June, representatives from Harrow Mencap brought together parliamentarians, people with learning disabilities, carers, and healthcare and disability experts for a virtual roundtable discussion on how to overcome the shortage of learning disability nurses in NHS posts across the country, and the role they play in reducing the often-fatal health inequalities affecting people with learning disabilities and autistic people.

The APPG and 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 in NHS 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.

The APPG roundtable heard from:

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.
Prof. Sam H Ahmedzai, Emeritus Professor, University of Sheffield.

Speakers shared their experiences of hospital settings both with and without learning disability nurses, and the difference these specialist healthcare professionals can make to the support a person or family receives. One of these included the story of Laura Booth who experienced what a coroner called ‘gross failures of care’ that contributed to her death.

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, while Jonathan Beebee and Glenn Batey highlighted that these nurses are unique as the only healthcare profession supporting people with learning disabilities specifically.

(Patricia and Ken Booth with a photo of their daughter Laura)

Some of our speakers said:

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.”

Jim Blair said:

“We really have got to act now and enhance and save lives and that is what learning disability nurses can and do alongside others.”

Harrow Mencap Self-Advocate Brendan Chivasa said:

“I used to go in and out of the NHS quite a lot from a young age. I often found it hard to understand. I never used to know what they were going to do at all. I want to say a learning disability nurse is very important. Having a learning disability nurse gave me more opportunities to speak.”

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.”

Lauretta Ofulue said:

“Unfortunately, because he [my son] communicated differently, he would often be in pain and staff would not be able to understand or identify that he was in pain. Because they were not trained to understand.”

Lauretta also said meeting a learning disability nurse:

“Gifted us a wonderful final year in what culminated into the last year of his [my son’s] life, because … he had personalised pain scales for identifying his pain and then they could justify the reason for giving him the medicine [pain relief].”

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.”

What we want to do next

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

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Harrow Mencap, APPG host lifesaving Learning Disability Nurse Meeting

The APPG roundtable heard from:

Some of our speakers said:

What we want to do next

Harrow Mencap, APPG host lifesaving Learning Disability Nurse Meeting

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Harrow Mencap, APPG host lifesaving Learning Disability Nurse Meeting

The APPG roundtable heard from:

Some of our speakers said:

What we want to do next

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