Palliative care for people with learning disabilities: a focus on carers

Categories: Education.

Latest figures from Improving Health and Lives Learning Disabilities Observatory estimate there are 1.14 million people with a learning disability in England alone. It is also estimated that, out of those who are adults, only 22% are registered with a GP as a person with a learning disability. 

The Observatory also estimates that the median age at death for people with learning disabilities is about 24 years(30%) younger than for those who do not have learning disabilities.

I don’t know about you but these figures deeply concern me.

We know that, historically, health and social care services have not adequately met the needs of people with a learning disability. While we appreciate advances have been made, inequalities are still evident today.

These inequalities extend to hospice care and palliative care and directly concern our sector, so what are we doing about it?

The PCPLD (palliative care for people with learning disabilities) Network was set up in 1998 and continues today to be a thriving and ever growing community of professionals who work in both palliative care settings and learning disability settings. I am the chair of this network and our aim is simple.

What we do:

  • Raise awareness of the palliative care needs of people with learning disabilities.
  • Share and promote ‘best practice’.
  • Enhance collaboration between all services providers, carers and people with a learning disability.

One of the ways we achieve the above is by hosting an annual conference. As we are a UK-wide network (and now extending overseas) we try to ensure that our conferences are held in different areas each year. In 2014 we were in Glasgow. This year we will be in London.

I follow the learning disability carers community on twitter (#LDCommunity) where carers of those with learning disabilities can access services, feel listened to, find useful information and build a social life. It’s here where I read stories from family carers living in very demanding situations, often lacking support and feeling very isolated.

These carers are often described as invisible and not counted or included. So, this is why this year we have chosen carers and family carers as the theme of our 2015 conference ‘Who cares?’

When people with learning disabilities are on the palliative care journey, carers are crucial, yet their needs are often overlooked. Furthermore, failing to involve carers can lead to poorer outcomes for individuals.

We are delighted to gather national researchers, skilled specialists and carers, from a variety of backgrounds, to share with us their professional and personal insight into the complexities and challenges of caring for someone who has learning disabilities and palliative care needs. In sharing their experiences, knowledge and expertise we aim to highlight and promote best practice.

Additionally, the conference will commemorate the life and work of Peggy Fray, who sadly died in April 2014. Peggy was a long-standing carer representative on our steering group. A lifelong advocate for people with learning disabilities, Peggy supported her sister Kathleen, who had Down’s syndrome and latterly dementia. Her book, Caring for Kathleen has been an inspiration for many of us in this field of care.

The day will provide an opportunity to explore various complex issues in relation to carer involvement and support in the area of learning disabilities and palliative care and challenge and support attendees to address these within their day-to-day practice.

The conference is taking place on Monday 16 November 2015 at St Joseph’s Hospice in Hackney, central London. For further information please download the conference flyer, or visit the PCPLD Network website.

I look forward to seeing you there.

Jason Davidson is also the manager of supportive care services at the Marie Curie Hospice in Hampstead, London. 

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