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End of life care for adults with a learning disability
As a GP, would you recognise when an adult with a learning disability is approaching the end of life? A ground-breaking pathway in Nottinghamshire is helping GPs and associated health care professionals do just that while transforming the end of life care experiences of people with a learning disability.
Nottinghamshire Healthcare NHS Trust and Sherwood Forest Hospitals NHS Trust have developed a cross-discipline project team led by Learning Disability Nurse Specialist, Claire Henley (pictured left) and Learning Disability Health Facilitator, Gemma Del Toro (pictured right).
The team has created a range of resources, including:
All of these tools are available to GPs and associated health care professionals and can be adapted for use in your own area.
The Learning Disability Resource Pack, which is now included in the standard end of life care folder sent out to all GP surgeries and care homes across Nottinghamshire, is a key element of the pathway. The pack has been designed to signpost and support people with learning disabilities and is based on the Nottinghamshire End of Life Pathway for All Diagnosis.
Other resources include an easy-read version of the information prescription and a DVD, produced in conjunction with a local learning disability theatre group. Entitled ‘Make it Happen’, the film raises awareness of the best ways to support someone with a learning disability.
The ‘Pain Profile’, which was created by Gemma, helps people with a learning disability communicate when and where they are experiencing pain.
Dr Greg Finn, Consultant in Palliative Medicine at John Eastwood Hospice in Nottinghamshire, has welcomed the pathway. He said: "When you are identifying your one percent of patients who are in their last year of life you must remember those with learning disability - the so called 'disadvantaged dying'. This resource will help your patients and the professional team to provide tailored, quality care to this important patient group."
For Claire and Gemma the project was a natural development of their own professional interests. Claire explains: “Gemma and I are both passionate about end of life care. Both our roles involve making sure that people with a learning disability get equitable healthcare and after carrying out a questionnaire across Nottingham City we felt that this wasn’t always the case.”
They used Mencap’s best practice guide ‘Living and Dying with Dignity’ as the starting point for creating the pathway and received funding from the National End of Life Care Programme to set it up. Gemma says: “The project team included a district nurse, a speech and language therapist and a mental capacity act practitioner. The people involved in the project from the very beginning are a key part of the training that we provide.
"During the training, we go through the resource pack and use guest speakers. One of them is a lady with a learning disability who has a cancer diagnosis and leads workshops on how to ensure things are individualised and person-centred.”
The pathway is promoted via posters in GP practices and hospitals across Nottinghamshire and has received national recognition: Highly Commended in the 2011 Nursing Times Awards and shortlisted for the Medipex NHS Innovation Awards.
Claire commented: “We can only hope that the resources and pathway will open up communication of this usually swept under the carpet subject."
Gemma added: "The future is that people with learning disabilities are given the time to talk about death and dying and the opportunity to express their wants and choices in the care they receive at the end of their life, as all of us should.”