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.
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.
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.