Action needed to give people with learning disabilities equal access to end of life care
One hospice employs a full-time Clinical Nurse Specialist (learning disabilities), some research now exists into the experience of people with learning disabilities at the end of life, and a collection of resources have been created to improve communication with this patient group about issues surrounding death and dying, but there’s so much more that needs to be done.
That was the overwhelming takeaway message from St Christopher’s first ever Learning Disabilities and Palliative Care Conferenceheld on 10 October.
In the day’s final session, Michele King, St Christopher’s Social Work Team lead, provided delegates with a message that captured the theme of the whole the conference, as she urged them to provide people with learning disabilities with the tools to make their own decisions.
“It’s about liberating people with learning disabilities, not rescuing them. Ask yourself, ‘would I be treating someone without learning disabilities in this way’.”
Delegates had earlier been provided with examples of current best practice as well as an update on the expanding body of research on this important subject that affects approximately 2% of the population and yet sees almost four in ten of them die an avoidable death – twice the proportion of the rest of the population.
The conference was the brainchild of St Christopher’s Palliative Care Consultant Emma Hall and Phoebe Mooney, the first Clinical Nurse Specialist (Learning Disabilities) to work in a UK hospice.
Phoebe began the day spelling out that issues facing people with learning disabilities – that they’re less likely to have access to palliative care and so less likely to get the care they need when they need it. This is exacerbated by the fact their symptoms are more likely to go undetected for longer, so they receive a later diagnosis.
These stark observations were rendered even more concerning by the findings of the The Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) programme, shared by Professor Henk Parmentier, Croydon GP and Croydon Neurodiversity Clinical Lead. Most concerning of all was the revelation that people with learning disabilities die almost 20 years younger than the rest of the population.
A number of speakers talked about the problem of delayed diagnosis. One reason for this, Phoebe said, is clinicians’ false assumption that their health issue is related to their learning disability. She urged people to ‘always think physical first’.
Through Phoebe’s concerted outreach to learning disabilities organisations, St Christopher’s has increased its caseload to 40 patients, almost three quarters of whom she and colleagues support to live and die in their own home. Simply making clinicians in the community aware that they can refer these patients directly to the hospice has made a marked difference, Phoebe added.
She also shared best practice and the latest research with her hospice colleagues, while supporting care homes in the local area as well as preparing families of people with learning disabilities for their deaths.
Sharing photos of some of her patients, Phoebe said:
“Behind every photo is someone who is very special.”
Phoebe (left), Tim (centre), Harriet Hughes, Clinical Paramedic Practitioner (right)
Several speakers built on this important sentiment, sharing how staff and fellow residents in care homes needed support to prepare for their patient’s and friend’s death.
In fact, the importance of appropriate collaboration and communication were also key themes of the conference – whether that’s co-creating resources with people with learning disabilities and fellow professionals or running regular clinical case meetings with a wide multi-disciplinary team.
That kind of co-creation is exemplified in the Victoria & Stuart project, run at Kingston University and Professor Irene Tuffrey-Wijne and Dr Andrea Bruun inspired the audience with a number of short films demonstrating the work they do with their team of researchers with learning disabilities – including the end of life care toolkit they’ve created.
Being prepared to offer a measure of flexibility for this patient group was a further key takeaway from the day. Clinicians were encouraged to consider reasonable adjustments such as arranging hospice visits before a stay, extending appointments, following up on no-shows, and arranging for consistent staffing.
Emma Hall said while it might take an army of people to help someone die at home, in line with their wishes, people with learning disabilities have as much of right to do so as anyone else.
One major barrier to this is late diagnosis and that, Prof Parmentier said, is often down to a failure to carry out routine cancer screening for people with learning disabilities. Raising awareness and distributing screening kits in care homes and conducting annual health reviews can make a significant difference, he added.
Several of the speakers shared patient stories either verbally or on video to illustrate examples of good and not so good experience and two family carers shared their experience in person. Sarah exemplified the importance of communication – in a case study shared by Sue Marsden, Clinical Nurse Specialist Leader, Greenwich and Bexley Hospice.
By recognising Sarah’s risk of dying, Sue and her colleagues have been able to work with her and her friends and family to plan for it. Acknowledging the risk doesn’t mean you’re giving up on that patient, she stressed, emphasising that she’s now known Sarah for 14 years.
Any delegates seeking a call to action, got what they were looking for, from Jane Kachika, Clinical Quality Improvement Senior Manager, Learning Disabilities and Autism at NHS England, said:
“Every statistic represents a family, an individual and a story – it is not just a clinical concern but a moral one. Yes, there is some hope, but this must be matched with future action.”
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