Shine a Light - The Good Grief Trust
We’re delighted to share that we’ve been nominated for the #ShineALightAwards for the Good Grief Trust, as part of Grief Awareness Week. We know no one likes talking about death and dying, and people with a learning disability and autistic people are often some of the most excluded and marginalised.
MacIntyre’s Best Practice Health Team are leading the way in facilitating conversations with people who have a learning disability and autistic people, families and staff about palliative and end-of-life care. The team consists of expert by experience, Jessica Hiles, freelance dementia consultant, Beth Britton, and Health and Families manager at MacIntyre, Nicola Payne.
Building on the work of MacIntyre’s highly acclaimed Dying to Talk Project, the team developed resources (many of which are freely available on the website) that provide practical and emotional support to help people from all backgrounds and with a range of disabilities to have choice and control as they navigate end-of-life planning, care and decisions in ways that make sense to them.
MacIntyre has:
- Trained over 100 staff in their bespoke workshop on breaking bad news and planning for a good death.
- Run innovative workshops to help people supported to plan for their death.
- Trained hospices in how to talk to and support people with a learning disability.
- Created accessible easy-read information explaining cancers and how to check for signs and symptoms.
- Created a pack of Makaton cards to support communication about death and dying. 9 Living well /Dying Well Cards)
- Collaborated with Marie Curie to develop easy-read information for the National Day of Reflection.
- Created free resources for planning end-of-life care.
- Trained a member of the MacIntyre Health Team as a No Barriers Here facilitator (art-based end-of-life care planning).
- Collaborated in the Victoria and Stuart Project, co-producing accessible ACP resources.
Here at MacIntyre we are so proud of our award winning, co-produced Loss and Bereavement workshops, which you can find here.
The team behind this creative and accessible workshop had a vision to support social care providers to gain more understanding of how loss and bereavement can affect a person living with a learning disability
This workshop has the voice of lived experience throughout and the creation was a co-produced team work approach to ensure the content made sense to the team who were planning to run this to others.
Health and Families Manager, Nicola Payne said:
“Jess, Beth and I have co-produced, in partnership with ARC England, an interactive and accessible workshop. We have truly worked collaboratively, and it’s been wonderful to see Jess’s confidence grow in this topic. Teamwork really can make the dream work with creative thinking and a determination to overcome barriers together.”
Sarah Burslem, MacIntyre’s CEO said:
“MacIntyre’s view is that people with lived experience are best placed to design and deliver training. We are delighted that this has been the case for the MacIntyre and ARC England Loss and Bereavement course. I have no doubt that the impact of this training will be quite profound.”
A few participants who have attended previous workshops also wanted to share their thoughts:
“I’ve learnt far more from people with lived experience than any textbook."
"Jess’ input was very useful as its insightful seeing things from another person's perspective."
"Hearing from Jess made it more human and relatable."
"Absolutely Brilliant. The co training is definitely best. It’s better to listen to someone with lived experience."
"It was very good training and gave us lots to think about."
"It was very helpful, reading the case study and listening to lived experience gave me a lot to think about and was very sad."
"Jess was/is a STAR and her input and inclusion was very helpful."
We hope to encourage others to see the benefit in working in this way, not only throughout “Shine a Light Week”, but that this collaborative approach becomes the norm, and people feel empowered to have the difficult conversations around death and dying, and care at the end of someone’s life.
