At our health and wellbeing conference on 12th September, Irene Tuffrey-Wijne, Professor of Intellectual Disability & Palliative Care at Kingston University, will discuss how we can involve people with learning disabilities in end-of-life care planning.
As part of her ongoing end of life care research, Professor Tuffrey-Wijne launched a toolkit known as the Victoria & Stuart Project. Here, she discusses what the toolkit sets out to achieve, how it can be used by people with learning disabilities, carers and support workers, and what she hopes to achieve by talking about end-of-life care planning at the conference.
Death and dying is part of life. We are all affected by it. Most people with learning disabilities will know a lot about it already, as they have lost people they loved. It is important that we help people to think and talk about something that affects them so profoundly. In the words of my colleague Amanda (who has a learning disability): “When it comes to the end of our lives, we want to make sure that we have OUR choices, not other people’s choices. We don’t want people to say, ‘Oh, it should be like this’ when that’s not what we want. We want to show people that we CAN make choices, even if they are difficult choices.”
The toolkit is for supporting people with a learning disability to be involved in end-of-life care planning. Most people agree that it is important that end of life decisions are made WITH people, not just FOR people. However, many staff and carers are worried about this. How do you involve people? Can you talk about dying? Will it be too upsetting? Will people understand it?
We knew that there were resources out there that tried to address this (for example, easy-read end of life care plans), but I was concerned that they hadn’t been properly tested. We wanted to know what approaches and resources were actually welcomed by people with learning disabilities, families and staff. What works? What doesn’t work?
The toolkit has a range of resources that might help you to open up conversations with people with learning disabilities, so you can explore together what people’s feelings, thoughts and preferences are. There are different resources for issues that arise when you are ill and approaching the end of life; and for thinking about your funeral. Some of these are pictorial resources, newly created for the toolkit.
There are also links to existing resources that we liked and that worked well (Talking Mats, Books Beyond Words and No Barriers Here). We have also created a set of interactive guides for staff, including lots of short demonstration videos, about how you can talk about dying, how to use the resources, etc.
There were almost 200 people actively involved in creating the toolkit, including people with learning disabilities. We employed four people with a learning disability as Kingston University researchers. They helped to plan the project, test the methods, ran focus groups, analysed the data and helped with telling the world (including chairing webinars). We held focus groups with people with learning disabilities, using fun methods that enabled people to relax and share their ideas about a difficult topic.
Nine people with learning disabilities (including our four researchers) were part of the “All Together Group” which held seven full-day workshops over six months to try out existing resources and help develop new ones. One unexpected finding was that they really didn’t like any of the easy-read forms, so we had to think outside the box!
Be inspired! I hope that you come away feeling that YES, you can do this. You can talk with people about death and dying. There is help out there. You don’t have to be afraid.
