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.
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.
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:
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.
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
At the end of the project we wrote a report. Here is a 1 page summary of that report.
View DocumentWe have a number of resources useful in supporting someone to talk about death and dying.
This Easy Read form helps to discuss what someone wants to happen when they die so that their wishes are recorded.
This Easy Read form helps to discuss what someone wants to happen when they become unwell so that their wishes are recorded.
Please use the form below to contact Dying to Talk project team.
In conversation with Beth Britton, who discusses her latest collaboration with MacIntyre around learning disability and dementia.
As part of Grief Awareness Week with the Good Grief Trust, we’ve been nominated for the #ShineALightAwards!
We're delighted to share we were able to create a special session where people with a learning disability and autistic people could learn about death…
To mark Grief Awareness Week with the Good Grief Trust, we wanted to shine a light on how we support people experiencing loss and bereavement.
Autism is a lifelong neurological difference in how individuals approach social communication, social interaction and social imagination. There are many…
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…
We know that good things happen when we connect with others around us. Our Everyone Everywhere approach is about making these connections a more intentional…
MacIntyre was established in 1966 by the parents of a disabled child. Our relationships with families and what we do today is still inspired by their…
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…
Intensive Interaction is an approach to interacting with and teaching early communication and interaction skills to people who do not find it easy communicating…
Providing person centred support means always listening, learning and focusing on what is important to and for someone, now and in the future.
A Positive Behaviour Support (PBS) approach involves focusing on improving a person’s quality of life and understanding the reasons behind any behaviours.
Here you will find a variety of resources covering issues around health, wellbeing, end of life and other topics
We are committed to the safeguarding of the children, young people and adults we support across the organisation and encourage openness and transparency.
MacIntyre is one of five not-for-profit organisations that are calling for change in social care. Together we are known as More Than A Provider.