People with a learning disability are three times more likely to die at a younger age than the general population, yet they frequently experience inadequate end of life care. To mark Learning Disability Week, we speak to Gemma Allen, Diversity and Inclusion Lead at The Mary Stevens Hospice about changing this.
Around 2.5 per cent of the UK population have a learning disability, which the Department of Health defines as a “significant reduced ability to understand new or complex information, to learn new skills, with a reduced ability to cope independently”. The number is growing due to improvements in neonatal care and increased life expectancy, which has clear implications for palliative care. They’re also more likely to have chronic or life-shortening conditions such as obesity, epilepsy, respiratory illnesses, and heart disease.
The 2013 report on the premature deaths of people with a learning disability found a number of issues with end of life care, including identifying when the end of life was approaching, problems coordinating end of life care, and with accessing continuing healthcare (CHC) funding. It also found a lack of reasonable adjustments to help people with learning disabilities access healthcare, particularly non-emergency secondary care, poor record-keeping, and issues with nutrition, with a higher number of people than expected either underweight or obese. The report stated that a potential reason is simply that care providers rely on stand-on or sit-down scales that some people are unable to use.
Listening to people’s needs
The Mary Stevens Hospice in Stourbridge, West Midlands, has pioneered a number of initiatives to improve access to hospice care for people with learning disabilities, and last year was shortlisted for a Guardian Public Service Award. Gemma Allen explains that to develop these programmes it’s been crucial to have input from people with lived experience. “When first exploring the priorities and experiences of people with learning disabilities I discovered many rarely had the opportunity to discuss death and dying and heard several examples of distressing death and bereavement experiences.
“This made it more important to connect with our community at a grassroots level and hear their stories, which led to a richness of resources that were generously shared. Partnerships with community groups, organisations, and local health and social care services have provided people with a learning disability the opportunity to discuss what matters most, what is significant in their lives, and speak out about end of life issues, including loss and grief.
After speaking to individuals and organisations, the hospice looked at how it could provide more inclusive end of life care. Suggestions included providing accessible information, sensory equipment and signage, and so the hospice applied for a grant of over £20,000 to make this possible.
“The monies received enabled us to purchase specialised equipment and software, focus groups, network days, easy read information, books, staff resources and bespoke training” Gemma says. “We also worked alongside people with learning disabilities to develop easy read publications and bespoke hospice information, all peer-read prior to publishing and including an easy read version of the advance care planning document Planning for Future Care.”
In addition to this, the hospice received funding from The Masonic Charitable Foundation and Hospice UK for ‘No Barriers Here’ a project that focuses on advance care planning for people with learning disabilities. “This is planned through the delivery of education workshops, co-led and facilitated by people with lived experience, and delivered to health care professionals and people with learning disabilities living in community settings” Gemma explains.
“The workshops will be initially delivered in Dudley, but we hope to create future opportunities to extend the workshops nationally. Art will also be incorporated into the No Barriers Here project, with an international call of interest for individuals and organisations who would like to be involved in a virtual community collective art initiative.”
Last year, the hospice joined Birmingham City University to form the Midlands Palliative and End of Life Care for People with Learning Disabilities Network. It now has over 100 members, including clinicians, primary care, academics, allied health care professionals, hospices, students, residential care and importantly, people with learning disabilities themselves.
“During 2019 we hosted two events for people to come together, share ideas and learn from one another. With the second event fully booked within 48 hours we realised people felt it was significant. At both events we explored a series of questions and discovered five prominent themes to use as a preliminary platform for future work and research. An easy read abstract about LDEOL (Learning Disabilities and End of Life) Network, co-developed by people with learning disabilities, was accepted and presented at Hospice UK’s National Conference in 2019.”
Another initiative the hospice is involved in is the Safe Places scheme, a programme developed by the charity Dudley Voices for Choice in collaboration with West Midlands Police and Dudley Metropolitan Borough Council. “Safe Places provides people who may be vulnerable, including people with learning disabilities and autism, living with dementia or who need support and assistance, with a temporary place of safety when out in their local community. It encourages vulnerable people to deal with situations effectively, and to feel confident and safe when out by having a recognisable symbol displayed in windows, identified by users of the scheme. We were delighted for The Mary Stevens Hospice and retail stores to be accredited ‘Safe Places’.”
Overall, there are many challenges for hospices at the moment, but Gemma emphasises that the requirements of the most vulnerable in society must be addressed. “We need to provide care for more people, addressing the needs and complexities of those most vulnerable in our communities, and commissioners should ensure palliative care and bereavement support services for people with learning disabilities are included in the funding and provision of palliative care.”
“Adult hospices may not be accessible or equipped to support people with learning disabilities, therefore barriers should be identified and considerations made of the best way these can be removed. You can do this by asking if services are accessible, is information available that people can understand and how to better support and care for people with a learning disability. Collaborative working, skill sharing, and joint decision making is essential in ensuring people with learning disabilities are aware of, can access and benefit from palliative and end of life care, including bereavement support.”
The LDEOL Network is keen to hear from people with a learning disability willing to share their experiences. To join email email@example.com
For more information visit Mary Stevens Hospice