Advancing Equity in Palliative Care: A New Model for Supporting People with Learning Disabilities

Redefining Best Practice: Integrating Learning Disability Expertise into Palliative Care

Two and a half years since becoming the first Clinical Nurse Specialist (Learning Disabilities) at St Christopher’s, Phoebe Mooney remains the only such nurse working in a hospice in the UK.

With 1 in 50 people in the country living with a disability, many of whom will have palliative care needs, Phoebe would much rather be a change maker than a lone voice.

It’s for that reason – to facilitate greater cooperation between hospices and learning disability teams in their area – that Phoebe and St Christopher’s Consultant Dr Emma Hall have organised a conference – Learning Disabilities and Palliative Care – on 10 October.

Phoebe says:

“It’s the first time St Christopher’s has hosted a conference on this subject and after facilitating a successful workshop for professionals in South East London, we thought it was really important to share what we’ve learned about improving access to, and best practice in, provision of palliative care for people with learning disabilities.”

Being a trailblazer, Phoebe has already seen a significant impact since joining the hospice and is keen to share what she, colleagues and patients and their carers have learned.

“Generally, research shows that there is a huge gap and that people with learning disabilities are not getting access to palliative care. I feel very privileged here to be able to play a part in closing that gap.

“I never quite imagined when I joined St Christopher’s in February 2023 that we’d have grown the number of people we’d care for with learning disabilities from about 30 a year to 80.”

Two key factors in this success have been building partnerships, and Phoebe and her colleagues’ willingness to learn from each other.

“It takes an army of people to get it right. Right at the start I was given the freedom to make connections with the learning disabilities teams locally and we’ve built some great relationships with them so that joint working has really worked.

We’ve also involved the community nurses and there’s been so much shared learning with my colleagues here at St Christopher’s about what to expect and when to refer. I had no experience in palliative care when I started so I’ve learned loads from them too.”

Pictured left to right, Phoebe Mooney (Clinical Nurse Specialist), Tim (patient), Harriet Hughes (Clinical Paramedic Specialist).

Phoebe identifies referrals as one of the major issues affecting equal access to palliative care for people with learning disabilities.

“People can struggle to express their wishes and communicate their symptoms. Often people with learning disabilities are more socially isolated and vulnerable which makes services harder to reach and they are referred to us later. That can then mean we have less time to overcome their anxieties.”

So, what can people expect to discover and learn from the conference?

As well as Phoebe sharing her experience of building her practice at St Christopher’s, delegates will be appraised of the latest research, hear from the team behind the Learning from Lives and Deaths programme and, perhaps most importantly get to hear from people with lived experience – both patients with learning disabilities and carers.

“I hope people who come to the conference will take away insights from those people that will enable them to enrich their personal practice and improve care within their setting so that together we can help to close the gap and address health inequalities,” adds Phoebe.

Whether you work in palliative care or care for people with learning disabilities you won’t want to miss this conference. To find out more about the speakers and to book your place, either in person or online, click here.