Written by Andrea Bruun, Research Associate, Kingston University.

Earlier this year, we gathered a group of people together to create resources to help Support Workers with end-of-life care planning with people with learning disabilities. Last week, we had our very last meeting with the group, celebrating all our hard work. Let’s take a walk down memory lane - but also have look at the future.

What is the "All Together Group"?

The co-design group, as it is called in research jargon (luckily we have some creative minds on the team, and the group was renamed the All Together Group), included people with learning disabilities, family members, Support Workers, service managers and healthcare professionals. They started working together back in January 2023 with the goal to test and develop resources together for end-of-life care planning with people with learning disabilities.

What did the group do?

The All Together Group built upon the work from earlier parts of The Victoria & Stuart research project by:

• Looking, discussing, and testing resources and approaches found in our scoping review

• Using and learning from the knowledge we got from our focus group study

If you want to know more about these studies, you can see our webinars about them here. The All Together Group brought the findings from these studies together to see what resources work well and what might be missing - and then create new ones! In the end we will have a final toolkit, or bank, of good ways to do end-of-life care planning with people with learning disabilities.

After a lot work with testing and talking, we agreed that new resources were indeed needed. And that kept the group very busy. We ended up making three new resources. These are:

• Let’s Talk About Funerals conversation-starter pictures

• My Funeral planning cards

• When I’m Ill thinking cards

Let’s Talk About Funerals pictures

Is a set of 14 cards that is meant as a conversation-starter to get people talking about funerals, death and dying. They have been developed in collaboration with Books Beyond Words.

My Funeral cards

Are developed to help people plan for their own funeral. The cards are divided into four sections that deal with different aspects of funeral planning: What happens with my body, The day of my funeral, Remember me, and Planning my funeral. The cards include illustrations by artist Grace Barnes.

When I’m Ill cards

Are for thinking, understanding, and exploring a person’s preferences and experiences around health-related matters when being ill and dying. These cards have five sections: About me, Where, Treatment, Needing help, and Before I die. These cards are also the brilliant work of Grace Barnes.

What’s next?

Last week, we got the final research approvals to start testing the resources. We are testing the three resources, and the Am I going to Die? book, with around 40 Support Workers from social care organisations such as our collaborators MacIntyre and Dimensions, but also smaller organisations. In November, we will open the study for anyone else interested in testing them out. We will let you know once we are ready!

However, this also means that the All Together Group has now done its job. We had to say goodbye to each other, and we did that with a big celebration of all our hard work. We played games, danced to our theme tune, and held a certificate ceremony where we said nice words about each other. It was a wonderful and emotional day.

The All Together Goup has become like one big family, and it has been a pleasure working with such amazing people. A big thank you to all our group members, we could not have done this without you!

THANK YOU