In the third part of the study, we will bring together a team to look at what we have found in the first two parts of the study. This team will design a ‘toolkit’ that includes:

 

• Approaches for end-of-life care planning for people with learning disabilities.

• Resources to support this process (for example pictures, documents or videos).

• Training for learning disability support staff to help people with learning disabilities to plan for the end of life.

 

We will use a process called co-design to do this. This means people with different backgrounds and experiences coming together to find the best ways to do things. Our co-design team will include:

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• Researchers with learning disabilities

• Researchers without learning disabilities

• Other people with learning disabilities

• Learning disability support staff

• A learning disability community nurse

• Family members of people with learning disabilities

• Other people who are involved in end-of-life care planning

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The co-design study has now been completed. The co-design group, renamed the All Together Group, developed three new resources for end-of-life care planning with people with learning disabilities:

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• Let’s talk about funerals conversation-starter pictures

• My funeral planning cards

• When I’m ill thinking cards

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The Let's talk about funerals pictures were made in collaboration with Beyond Words. The My funeral and When I'm ill cards include illustrations by artist Grace Barnes.

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We are now writing up our findings into an article to be published in an academic journal. On 16th November 2023 we held a webinar to share the findings with you. Check out our WEBINAR page!