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.
Person supported by MacIntyre
Death and Dying
No one likes to talk about death and dying, but conversations about difficult topics are important. MacIntyre’s Best Practice Health Team are leading the way in facilitating those conversations with people who draw on our support, their families and our staff.
At MacIntyre, we believe that living well includes dying well. We’ve developed a range of resources to support people. These resources help people to understand and explore end of life planning, care and decisions, giving the people who draw on our support choice and control, and you’ll find them on this page.
The resources we share here include both the practical and, more importantly, the emotional aspects of death and dying. We designed them specifically for people with a learning disability, autistic people and their circles of support.
The Dying to Talk pilot project
Through the delivery of our three-year (2016 - 2019) Department of Health funded Dementia Project it became apparent that many people with a learning disability are not spoken to when it comes to end of life care, dying and making decisions regarding their death.
In May 2021 we 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.
Working with people with a learning disability, support workers, family members and the wider sector we:
- delivered workshops
- provided information and
- created resources
to find the best ways of actively promoting equality in all aspects of life, inclusion and best practice in respect of end of life planning.
The Dying to Talk team were nominated for three national awards. We were ‘highly commended’ at the Women Achieving Greatness in Social Care awards.
We have produced a final report on the Dying to Talk project. We are so proud of what the project achieved, and continues to achieve.
The first session I stood up and walked out because I didn't want to do it but now I'm quite happy to do it
Sharon
Dying to Talk participant
Main aims of the project
- Help people we support feel less frightened to hear and talk about death and dying
- Help people we support gain more knowledge about death and dying so they can have a greater personal choice
- Help family members of people we support feel more comfortable speaking to their loved ones about death and dying
- Help MacIntyre staff members feel more comfortable speaking to the people they support about death and dying
- Help professionals outside of MacIntyre understand the importance of speaking about the issues relating to death and dying
- Develop a legacy of resources and training guidance
- Help guide more people to have advance care plans and wills
Dying to Talk Case Study
A case study with MacIntyre family member Janet, around the death of her adult child and the impact on her other two adult children, who have a learning disability.
View Document
Dying to Talk report
At the end of the project we wrote a report. Here is a 1 page summary of that report.
View DocumentResources
We have a number of resources useful in supporting someone to talk about death and dying.
Advance Care Planning
Part of Wellbeing for Life series
An Introduction to End of Life Care
Part of Wellbeing for Life series
Exploring End of Life Care
Part of Wellbeing for Life series
Jan, Frontline Practitioner - Case Study
Jo, mother to Jess - Case Study
Linda, Frontline Manager - Case Study
Loss, Change and Grief
Part of Wellbeing for Life series.
My plan for after I die - Easy Read
This Easy Read form helps to discuss what someone wants to happen when they die so that their wishes are recorded.
My plan for before I die - Easy Read
This Easy Read form helps to discuss what someone wants to happen when they die so that their wishes are recorded.
Providing the Best Support
Part of Wellbeing for Life series
Talking About Death and Dying
Part of Wellbeing for Life series
Would you like to know more?
Please use the form below to contact Dying to Talk project team.
More about Death and Dying
25 Aug 2023
Janet's Dying to Talk
Janet shares her experience of discussing death and dying with her adult children, who have learning disabilities, around the death of her daughter.
20 Jun 2023
Breaking down barriers in training
To mark Learning Disability Week 2023, we are sharing details of an incredibly productive partnership between MacIntyre and ARC England
4 May 2023
Dying Matters Week – reflections and resources
Some reflections on supporting people to talk about death and dying, and helpful resources
2 May 2023
Dying Matters Awareness Week 2023
In Dying Matters Awareness Week 2023, we share some resources around this sensitive topic
More about our approach
Autism
Autism is a lifelong neurological difference in how individuals approach social communication, social interaction and social imagination. There are many…
Communication
We believe that everyone, irrespective of the complexity of his or her needs, wants to and does communicate.
Dementia
We have expertise in supporting people with dementia or at risk of developing dementia.
Families
MacIntyre was established by the parents of a disabled child in 1966 for all people with a learning disability to live a life that makes sense to them.
Great Interactions
Great Interactions are based on 10 facilitation skills, including touch, warmth, eye contact and creativity, which when used well result in good outcomes…
Health
People with a learning disability are living longer, yet they are still dying 20 years younger than the rest of the population. It is well known that…
Health and Safety
At MacIntyre we are committed to achieving excellence with our health and safety practices.
Intensive Interaction
Intensive Interaction is an approach to interacting with and teaching early communication and interaction skills to people who do not find it easy communicating…
Learning Disability
It is estimated that 1.5 million people in the UK have a learning disability.
Person Centred Approaches
Providing person centred support means always listening, learning and focusing on what is important to and for someone, now and in the future.
Positive Behaviour Support
A Positive Behaviour Support (PBS) approach involves focusing on improving a person’s quality of life and understanding the reasons behind any behaviours.
Resources
Safeguarding
We are committed to the safeguarding of the children, young people and adults we support across the organisation and encourage openness and transparency.
Voice of the people we support
We know that we can’t make decisions about a person’s support, staffing changes or new activities without involving them and understanding what is important…
Have you seen our resources?
As part of sharing our expertise we created a number of resources.
These include: guides, posters, leaflets, case studies and much more.
These include: guides, posters, leaflets, case studies and much more.