“I’m No Longer Scared”: The Impact of Opening Up End of Life Conversations for People with Learning Disabilities

In 2025, we were approached to deliver a series of end of life planning workshops with adults with learning disabilities across three community settings in and around Edgbaston.

What began as hesitation became transformation.

At the start, several participants were unsure about attending.

“I didn’t want to join the sessions as I don’t like talking about death and dying, it worries me a lot.”

Others described the topic as “morbid” or “too emotive.” For some, recent bereavement made it feel especially difficult.

But something powerful happened when the conversations began.

Using the NoBarriersHere© toolkit, (a creative, co-produced and accessible approach that incorporates collage, weaving and guided discussions) and aspects of the Victoria and Stuart End of Life Planning Toolkit, participants explored deeply personal questions about who would matter most to them at end of life, where they would want to be cared for at end of life, how they wanted that care to be delivered, and how they would like to be remembered.

The creativity mattered. It made the space feel safe. It made difficult conversations possible.

As one participant reflected:

“I thought at first… that’s going to be quite morbid. But it’s not. You’ve made it in a way that we can feel free to talk about how we feel.”

Another shared:

“I initially didn’t want to join… But I am really glad that I joined in the sessions. I’ve learnt lots and I’m no longer scared about my future.”

That shift, from fear to confidence, was seen across all three cohorts.

But the impact didn’t stop at conversation.

Participants took meaningful action:

• Sharing their wishes with family members for the first time

• Reviewing or arranging Powers of Attorney

• Clarifying funeral plans

• Using their artwork to start conversations at home

One participant described the importance of having their choices documented:

“It’s everything about my choice… It’s made me feel secure that I can actually get things put into a formal document.”

For some, the sessions also supported emotional healing. One participant reflected that the workshops had helped them process their grief while also thinking about their own legacy.

Across the project, the message was clear:

• People with learning disabilities want to talk about end of life.

• They want to make decisions.

• They want their voices heard.

When given the right environment and support; one that is creative, accessible and respectful, conversations about death and dying are not frightening. They are empowering. They build confidence, strengthen relationships and reinforce autonomy.

This project has shown that end of life planning is not just about future care. It is about dignity. It is about having a voice. And it is about ensuring that everyone, regardless of disability, has the opportunity to shape their own story.

If you would like to learn more about our work or explore delivering similar workshops within your organisation, we would welcome a conversation.