There are so many uplifting stories we could share during Dying Matters Week.
Does it seem strange to use the word uplifting in a sentence about dying? Our experience at MacIntyre as we’ve all learned together is that open discussions about death and dying can indeed be uplifting, and liberating.
Dying to Talk Project
During our original Dying to Talk project, we worked with some external consultants and trainers, which added incredible richness to the result.
Beth Britton helped us to see the importance of making connections with local organisations and professionals outside of MacIntyre, including working with hospices and the value this can bring.
Prof Irene Tuffrey-Wijne reflected on the vital importance of involving people with a learning disability in discussions about death and dying, and how to do it well.
It is difficult to explain what happens in the workshops, and to convince those reluctant to talk about dying that it can, in fact, be a positive (and even fun) experience. Seeing is believing!
Our own Project Lead, Rachel Furniss, had some eye-opening training with the No Barriers Here team. They work alongside communities experiencing health inequalities, using arts approaches to create and support conversations about what matters most to people around advanced care plans.
You can understand their radical approach by watching this video
Recording people's wishes
But one of the most important aspects of supporting people who have a learning disability around death and dying is recording their wishes.
So one of the key outputs of our Death and Dying Project is actually very simple. We have two Easy Read documents for people:
My plan for before I die
This allows people to record their wishes around medical issues and end of life care. It includes decisions around resuscitation, and whether someone would ideally prefer to die at home.
My plan for after I die
This allows people to record their wishes around funeral arrangements, including any religious practices. It also goes into detail about practical things such as what will happen with their social media accounts and whether someone has a Will.
These Easy Read resources provide a helpful, thorough framework for people we support, their families, and our teams to work together. There are prompts to think about, and space to record everything that’s most important to people around death and dying.
We're very proud of the Easy Read resources. Do let us know if you use them and find them helpful.