6 Mar 2025 Community

Talking About Dying: Giving People with Learning Disabilities a Voice in End of Life Care

A groundbreaking initiative in West Yorkshire is ensuring that people with learning disabilities have a say in their own end of life care. The "Talking About Dying" project, funded by West Yorkshire ICB through its Working Together grant scheme, aims to tackle health inequalities by providing accessible ways for people with learning disabilities to engage in conversations about death, dying, and advanced care planning.

Led in partnership by St Anne’s Community Services, Mencap in Kirklees, and The Kirkwood, the project is based on co-production, meaning that people with lived experience of learning disabilities are actively involved in shaping the work. This ensures that the resources, discussions, and outcomes genuinely reflect their perspectives and needs.

For many people with learning disabilities, conversations about death and dying are rarely initiated. Even when resources exist, the challenge is often finding people willing to have those discussions with them. Emma Stripe, a key figure with The Kirkwood and who has been involved in the project, explains: "There are a lot of accessible resources available to support people with learning disabilities in talking about dying, but what’s missing is people who are actually willing to have those conversations with them. That’s the real issue.

“When you create a safe space to discuss these topics, you quickly realise that people have a lot to say. They have clear preferences about where they want to be cared for, who they want to look after them, and even how they’d like their funeral to be arranged. But they don’t often get the opportunity to express these wishes because conversations about death and dying can be uncomfortable for those around them."

Through a series of interactive workshops, the project has used specially designed accessible resources to facilitate these discussions, including:

• Talking Mats which are a visual tool that helps people communicate their thoughts and preferences.
• No Barriers Here which is an approach that helps people explore their feelings about end of life care in a creative and supportive way.
• The Victoria and Stuart Project which supports people with learning disabilities in understanding death and dying.
• My Future Wishes whuch is a structured way for individuals to document their wishes for future care.

By tailoring the conversations to different communication styles, the project has made discussions about dying more approachable and empowering.

As part of the project, a group of individuals with learning disabilities recently visited The Kirkwood hospice to learn more about hospice care. Many of them had never been inside a hospice before and had no understanding of what it was like.

"For many of the people in our group, today was their first experience of visiting a hospice. They had no prior knowledge of what a hospice looked like, what its purpose was, or who could receive care there," says Emma.

"What we know from research is that a disproportionately high number of people with learning disabilities die in hospital rather than at home or in a hospice setting. But hospices provide specialised, compassionate care, and it’s important that people with learning disabilities see them as an option." Emma added. 

The visit had a profound impact. Two attendees reflected on their experience, saying to Emma: "I really liked it; it was different from what I expected. If I reach the end of my life, I’d like to be cared for somewhere like this."

This reaction demonstrates the importance of giving people the opportunity to explore their options and challenge misconceptions. Without this experience, they might never have considered hospice care as a possibility.

Each individual in the project communicates in their own way, so the team used a variety of methods to capture their thoughts and preferences.

"Some people prefer a creative approach, so they designed colourful visual plans to represent how they would like to be cared for, where they want to be, and who they want around them," Emma explains.

"Others feel more comfortable writing everything down, so they completed a ‘Future Wishes’ document in written form. One individual preferred to talk while we wrote for him, so we used a large sheet of paper to jot down his ideas in a way that felt natural to him. Later, we transferred that into a structured ‘Future Wishes’ document." Emma said.

By adapting the approach to each person’s communication style, the project ensured that everyone was able to express their wishes in a way that suited them.

The Kirkwood has been a key partner in the project, helping to ensure that people with learning disabilities feel welcome in hospice settings. Emma emphasises the importance of inclusivity:

"It's so important that people with learning disabilities feel that they are part of the wider community and that they can access the same level of care as everyone else. In the visit, the group saw first hand that they are welcome here.

"The hospice staff were incredibly welcoming. The nurses on the In-Patient Unit took time out to chat with them, the reception team made them feel at home, and we all sat together for a cup of tea and had an open conversation. There were no closed off areas, no barriers. It was a completely inclusive and accessible experience, and that’s exactly how it should be. This welcoming approach not only reassured the visitors but also helped them see hospice care as a place of comfort and support rather than something to fear.” Emma said. 

Beyond the workshops and hospice visits, the project has developed training resources for carers and accessible materials for people with learning disabilities. These resources will support ongoing conversations about death and dying, ensuring that more people have access to the information they need.

Emma continued: "The ‘Talking About Dying’ project will be showcased at an event later this month. Everyone involved in the project will be sharing their experiences, and a training resource designed to help people with learning disabilities will be launched and the staff who support those with learning disabilities can think about their care.

“This resource will cover how they want to be looked after now, how they’d like to be supported if their health needs change, and ultimately, how they want to be cared for at the end of their life.

“We want this to be an ongoing conversation, not just a one off event. The more people we can reach, the better."

Despite the threat of funding cuts, the team remains committed to continuing this work and ensuring people with learning disabilities are not left out of end of life care conversations.

One of the most promising outcomes of the project is that it has inspired attendees to take on active roles in their communities.

Emma said: "One of the most encouraging things to come out of the visit was that one of the attendees expressed an interest in volunteering at the hospice. That just shows how valuable these experiences are.

“When people with learning disabilities see that they are welcome in these spaces, not just as patients, but as active members of the community, it changes everything. They start to see themselves as part of something bigger, and that’s exactly what we want."*

Through projects like "Talking About Dying," the message is clear: everyone deserves the opportunity to make choices about their care, and no one should be left out of these conversations.