Nov 18

The right words will come

Posted: 9 November 2018

Amanda-CheesleyAmanda Cheesley is Professional Lead for Long Term Conditions and End of Life Care at the Royal College of Nursing.  Here she talks about the nurse’s view on Bounce Back Boy

I saw Bounce Back Boy the very first time it was performed as a play and was moved to tears, I went back to the Royal College of Nursing (RCN) and told everyone about it and was determined to bring the play to as many nurses as I could. In 2016 we held a performance of the play at the RCN Congress in Liverpool and it made such an impact, we funded the making of the film.

This has enabled people – not just nurses – to hear Josh’s story and use it as a means to open discussion, provoke emotions and for us, to improve care.

Lynn’s story provokes such a range of feelings for me every time I hear it or speak to her, I see the love and joy she had in being Josh’s mum, her frustration and her fear about what was going to happen and I see her indomitable spirit that shines through the entirety of Josh’s short life. Despite all the difficulties Lynn steadfastly fights for every moment in his life to ensure that it is the best it possibly can be.

An important part of our work is ensuring that every nurse has the skills and confidence to talk to dying people and those that they love, about their end of life wishes.  Because the film is so powerful and provokes such a range of emotions, it helps nurses to reflect on what should and could have happened and on how they would have done it differently and what they can do to improve care in the places they work.

The thing that most distressed me was the lack of support the family got to help them to care for Josh when he was dying, the lack of information and discussion about what might happen and what to do and no recognition of the needs of not only Josh but his sister. It makes me angry that nobody seemed to make an effort to find ways of helping to make Josh’s end of life as good as it could be.

The insensitivity of all the services, some of whom should absolutely have known better, beggars belief and the fact that after Josh’s death the family were not only left bereaved but carless and homeless as the remaining money that had been awarded to Josh for his lifetime was withdrawn.
I am still angry for her and hope this discussion with Lynn makes anyone watching it angry so this sort of thing does not happen.

Hearing and seeing stories such as Josh’s and Lynn’s brings a reality that reading a case study does not. The film touches people in a visceral way. People remember not just what they saw and heard but how it makes them feel and that brings about change.

Nurses can and do play a vital part in supporting people to die in a way that does not leave anger and distress and much of it is not about technical and clinical skills.

The best care is when families remember the kindness an individual showed them, the time they spent talking to the dying person and the family, finding out what mattered to them, what they like doing who they were.  Time spent finding out about their fears and anxieties and trying to find some answers, practical and accurate information, helping them to navigate a complex system at a time when their world is falling apart.

Nurses are part of a team which must have the person at the centre, informing the decisions, involving family and friends and sharing correct and timely information. Helping to make sure that unpleasant symptoms are identified and managed and doing things when they should be done not waiting until there is time.   We should not fear saying the wrong thing and think of the person as someone they know and love then the right words will come.

I hope that the film does hep to improve care to people like Josh and everyone else who is facing the end of their lives. Nurses can do so much to make things better and we’re committed to making this happen.

I’m proud of the film and the associated learning materials and am humbled and honoured that Lynn agreed to our telling her story.

I wish I had known Josh but I feel I do through knowing Lynn and her family.

For more information and to access these resources visit www.hospiceuk.org/bounce-back-boy.