58. Can we get better at spotting that someone needs palliative care? Co-producing a new approach

One of the things we value most in the DAPPLE project is bringing people together. People with a learning disability, family members, health and social care professionals, and researchers all have different knowledge and experiences that can help improve care.

We wanted to bring together that knowledge in the part of DAPPLE where we have been trying to find ways of recognising when a person with a learning disability may be in the last year of their life.

Why is this important?

The national database study we conducted in the first part of DAPPLE showed that people with a learning disability are often recognised as needing palliative care much later than other people. This can mean missed opportunities to manage symptoms, plan care, and have important conversations about what matters most to the person and those around them.

Learning from each other

Our co-production group brought together family members, learning disability services, GPs, palliative care professionals, and colleagues from hospital and community services. Over several workshops, we shared experiences, discussed barriers, explored existing tools, and talked through ideas for new approaches to improve the recognition of palliative care needs. Each person in the group brought a different perspective, helping us build a shared understanding of what was needed.

Building on what is already being done

Together, the group decided that the best approach was not to create another assessment tool, but to make better use of information that is already being collected. They felt that the approach should be aimed at families and support workers, as they know the person best and are often the first to notice changes in their health.

The approach we have developed uses information that learning disability services often collect, such as weight, health observations, hospital admissions, and changes in what is 'normal' for that person. While each piece of information on its own may not tell you very much, bringing it together and visualising it over time could help families and staff build a picture of how the person's health has changed. This can then support conversations with GPs and other healthcare professionals about their concerns.

Becky's presentation from The KIND Research Group webinar on 11th June 2026

Keeping the person at the centre

We took our developing ideas to the Better Care Before Death group. They agreed that family members and support workers are often the people best placed to notice changes in health, but stressed that the person with a learning disability must always be listened to and involved in conversations about their care wherever possible.

As a result, we strengthened our resources to place even greater emphasis on involving the person and supporting conversations with healthcare professionals in a way that helps them tell their own story.

What happens next?

The next stage is to test the approach with families, support staff, and healthcare professionals. We want to understand how the resources work in real-world settings, what could be improved, and how they might fit into different organisations. As with every stage of the project, the people who will use the resources will continue to shape their development.

The value of co-production

Families, professionals, and people with learning disabilities all contributed something unique, and we hope that their combined knowledge has helped us develop an approach that is practical, grounded in real experience, and centred on the person. The members of our group also valued the opportunity to work with and learn from people they might not usually meet. One learning disability service manager reflected:

"It's been great having such honest conversations with such a vast range of professionals."

We hope this work shows that when people with different experiences come together as equal partners, they can create solutions that are more practical, more person-centred, and ultimately more likely to improve care for people with learning disabilities.

Written by Dr Becky Anderson-Kittow, co-Principal Investigator at Kingston University London