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A good death – working together to improve end of life care

Sally Gretton, End of Life Care Lead, Skills for Care

Sally Gretton is the End of Life Care Lead at Skills for Care. She offers an insight into an upcoming resource, ‘Bounce Back Boy’ that will offer shared learning around the difference we can make to someone who is approaching the end of their life and the value that we can contribute to a ‘good death’ through compassionate, person-centred care.

I wanted to start by sharing this quote by Dame Cicely Saunders, founder of the modern hospice movement, as it felt quite poignant when thinking about ‘a good death’.

“You matter because you are you, and you matter to the end of your life.”

End of life care can be the most challenging, yet most rewarding work that health and social care workers face, when supporting people who choose to die at home or in their residential care home. It’s very much an embedded part of what we do in social care. This can be humbling when the experience upholds the individual’s views, wishes and dignity. Sadly, sometimes these elements are often missing and the care worker has to then deal with anguish, guilt and anger both from the individual being cared for and their family.

So what’s the answer? The key to a good death is for individual agencies and care organisations to work together to support the needs of the individual in the most dignified and compassionate way. Support is available.

‘Bounce Back Boy’ supports end of life care learning

Due to launch in November 2018, in collaboration between Hospice UK, the Royal College of Nursing and Skills for Care, new resources will be available, based on a play called ‘Bounce Back Boy’.

This play was written by Brian Daniels and shares the experiences of Josh Cawley and his family. Josh had complex needs caused by catastrophic injuries that his birth parents inflicted on him when he was a baby. He was adopted by Lynn Cawley who cared for him until his premature death, aged just 22 years.

The play explores how Josh’s family had to accept that Josh’s needs were too ‘complex’ for the hospice as well as support Josh’s transition from boy to teenager to adult; whilst being his advocates, carers, interpreters and more.

In May 2018 the play was made into a film by the Royal College of Nursing, working in partnership with Skills for Care and Hospice UK.

The primary purpose of the film and this resource is to share this true story as a catalyst for learning. We invite facilitators and learners to work through Josh and his family’s journey from their own perspective: to consider it in the light of their own roles and responsibilities and think about how they might make improvements to end of life care in practice.

The work continues to bring agencies and services together and:

  • raises awareness of the multiple challenges that can arise when a young person with complex needs is dying
  • promotes understanding of the human impact of inadequate support for individuals and those that love them at the end of life
  • highlight the importance of tailoring care to individual and family needs at the end of life
  • improve the quality and experience of palliative and end of life care for young adults and people with learning disabilities.

    You can access the ‘Bounce Back Boy’ resources on the Hospice UK website from November at www.hospiceuk.org

‘Working together: Improving end of life care through better integration’
Produced by workers from both health and social care, this Skills for Care film and booklet increases the awareness and understanding of how all the different job roles involved can work together to improve end of life care. It can be accessed at www.skillsforcare.org.uk/eolc.

Other useful Skills for Care resources are available to support end of life care at www.skillsforcare.org.uk/eolc

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