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Be more Josh

 Kate Lillie 22 May 2019

It all started two years ago when a play, Bounce Back Boy, written by Brian Daniels, was performed at RCN Congress


The play told the story of Josh Cawley, who was 22 when he finally died from the catastrophic injuries his birth parents inflicted on him. These resulted in his inability to speak or to move from his wheelchair. 

He was adopted by Lynn Cawley, whose devotion to Josh ensured that he lived his short life as positively and "normally" as possible. As well as being his mum, Lynn was expected to be his palliative care consultant, his nurse, his campaigner for compensation and she had to fight the ongoing battles with the system.

The play explores their real story - having to accept that Josh's needs were "too complex" for the hospice - dealing with Josh's transition from boy, to teenager to adult and all the time being his interpreter. 

Seeing the play and the description of Josh's death moved me to tears. The forum really felt that it had real potential to engage all members of the nursing family, challenging us to consider what we can do to continue fighting to ensure everyone has optimal access to appropriate services for their needs at the end of life.

The first task was to raise money for filming, so the play could be shared more widely. The experience of the RCN was invaluable here, and we were delighted with the work that George Horne from Made by Wander produced.

It was also wonderful that Joey Taylor, an actor who had performed the stage version many times, was able to reprise the role for the film. Lynn was hugely supportive of the project, and perhaps the most rewarding part of the whole process for me was meeting and interviewing her for the filmed question and answer section that follows the film.

Once the film was complete the next step was ensuring the resources were used and seen. Again the RCN's links with other organisations was invaluable. 

It has been a lot of work over the past two years, but I really think the play raises important issues and am delighted to have helped in making Josh's story more widely available for nurses.

Be more Josh


Kate Lillie

Kate Lillie

RCN Pain and Palliative Care Forum steering committee member

Lecturer

Kate's professional focus is to promote excellence in end of life care through practice, research and education. She is a lecturer at Keele University School of Nursing and Midwifery.

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