Posted: 7 November 2018
Claire Henry was formerly the CEO of National Council for Palliative Care that merged with Hospice UK in 2017. She was awarded an MBE for her services to improving end of life care and is now Director of Improvement and Transformation at Hospice UK. Claire shares the story of their involvement with Lynn and Josh.
When Lynn Cawley got in touch with us about Josh’s life and death, I felt it was such an important topic and Josh’s story needed to be told.. We’d already been in touch with Brian Daniels a playwright who had agreed to write and direct the play and we debuted Bounce Back Boy in front of an invited audience for the start of Dying Matters (a public awareness campaign).
I think that the reason the play work has been successful is because, while it focuses on a lack of suitable end of life care, it isn’t about finger pointing. It’s about learning and improving.
Lynn is right to be angry about the treatment Josh did and didn’t receive, but she also wants us to remember the good parts of his life. Her generosity, and Josh’s personality, comes through as well as the difficulties.
Hospices today face multiple challenges in supporting and delivering the end of life care Josh needed , but the truth is that hospices don’t see people like Josh very often. So if someone has needs outside of your usual experience it can be hard at first to see how you’re going to help. The point of Bounce Back Boy is to help people get past that initial reaction and see the need and sort out their response to caring.
The key skills and capabilities of hospice staff are compassion and concern for the individual and their families of course, which you also find that in many other settings beyond the hospice. What’s different in end of life care is the idea that there’s only one chance to get it right for each dying person and those important to them.
For us at Hospice UK, it’s about staying focused on the individual and their wishes. This includes being clear about what the options are at each point and making sure that you’re really listening to the person and those important to them.
When someone’s life is coming to an end, getting it right means that the experience of this is as good as it can be. Then you’re also looking to support the family and friends, both before and after the person dies. This is true for everyone, but it’s really important for people like Josh with complex needs.
The important question to keep asking is “What matters to you today?”.
We’ve known for a while that, on the whole, end of life care in the UK is good, but also that it isn’t evenly distributed. It varies by location, by condition and by the background of the individual. Bounce Back Boy won’t fix all of this, but I think we will be able to look back and say that it helped improve both timely access to end of life care and the quality of that care for people with learning disabilities or complex needs.
What struck me the first time I saw Bounce Back Boy, and what strikes a lot of people first time, is how funny it is. It isn’t a happy story to tell, but Josh refused to be downcast by what happened to him, and Lynn never stopped being a loving, caring, laughing mum throughout her struggles to get him the care he needed. You don’t come out of Bounce Back Boy feeling particularly buoyant, but you do feel that things must change and you know how they can improve, and you’ll be pleased to have spent a little time in Josh’s company, as its been shaped by Brian’s writing.
My final thought is the words of Josh’s mum, Lyn, telling Josh’s story has given him the voice he never had.
To access Bounce Back Boy resources and film visit www.hospiceuk.org/bounce-back-boy. This project is a partnership between Skills for Care, Royal College of Nursing and Hospice UK. This project is a partnership between Skills for Care, Royal College of Nursing and Hospice UK.