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Dying to Talk - celebrating our impact

15 March 2023
News

In May 2021 MacIntyre secured almost £170,000 of National Lottery funding for a new project to test solutions to break down the barriers people with a learning disability experience regarding end of life care, dying and death.

The ‘Dying to Talk’ pilot project allowed us to help people we support, their families and MacIntyre staff understand and feel supported talking about death and dying.


The Results

Our final report on an incredibly successful project is now available. Dying to Talk trained, supported or raised awareness with over 1,000 people we support, family members, staff and professionals from other organisations. This far surpasses our original target to help 185 people.

We increased the knowledge and confidence of the people we support so they are not so scared to talk about death. At the start of the project, 28% of people we support in participating services said they felt ok talking about dying. By the end of the project this almost doubled, to 54%

One of the people supported by MacIntyre who participated in the project said:

“I liked talking about grandma. I liked talking about my best song. I liked having ideas on what I want. It made a lot of thoughts in me. I want to talk more. It is not scary or sad after all.”

We increased the knowledge and confidence of staff so they feel more comfortable talking about death with the people they support. Before Dying to Talk training 28% of staff said they felt very comfortable talking about death and dying with the people they support. This doubled, to 60% after training.


The future

There is more to do. We have just scratched the surface. We want to share this approach widely so everyone with a learning disability has the opportunity to think about what is important to them near the end and talk about feelings of grief and bereavement. We used what we learnt in Dying to Talk to create a resource pack and e-learning module for staff in all MacIntyre services, which could also be shared with other organisations. We will continue to promote the reasons it is important to talk about death and how to do this as part of our day to day work.


Find out more at our upcoming event

Feel you need to make a plan for the future but don’t know how to start? Want a chance to talk to other family members and have the opportunity to learn more about planning for the future? Our event in Milton Keynes on 10 May is just for you.

This event is open to anyone who is thinking they need to make a plan for the future, for yourself or someone who receives care and support.

For more details and free registration go to the event page.


More about Death and Dying

26 Jan 2023
Blog post

What is the Victoria & Stuart Project?

Meg Wilding shares her experiences of being involved in Victoria and Stuart Project

Find Out More
7 Dec 2022
Blog post

Using the "No Barriers Here Approach" to end of life planning

MacIntyre’s Dying to Talk Project Lead, Rachel Furniss, shares her experiences.

Find Out More
2 Nov 2022
Blog post

Supporting Sharon and her family to make future plans

Rachel Furniss, shares her experiences of working with Sharon and her family to think about and plan for the future.

Find Out More
16 Sep 2022
Blog post

How and why we must involve people with learning disabilities in talking about death and dying

Prof Irene Tuffrey-Wijne reflects on her involvement with the Dying to Talk Project.

Find Out More
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