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

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

Photo of a mother and her two adult children

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 Document

Resources

We have a number of resources useful in supporting someone to talk about death and dying.

Would you like to know more?

Please use the form below to contact Dying to Talk project team.

More about our approach

Autism

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Co-production

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…

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Employment

At MacIntyre, we believe that every person with a learning disability should have the opportunity to work.

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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.

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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…

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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…

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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.

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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.

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Resources

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Safeguarding

We are committed to the safeguarding of the children, young people and adults we support across the organisation and encourage openness and transparency.

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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.
View our resources