The play, based on the true story of Seth and Lesley Goodburn, was written and developed in 2016 by Brian Daniels and the National Council for Palliative Care to help improve end of life care.
Brian Daniels wrote the play based on Lesley’s experience of supporting her husband Seth from his diagnosis with pancreatic cancer and his death 33 days later. In that time, although much of Seth’s care was excellent, other issues prevented him from dying at home as he wanted. Seemingly trivial issues, like hospital car parks or GP appointment systems, meant that Lesley was not with Seth at key moments, or that life-changing information was not communicated well. The play focusses on the little things that mean a lot.
Lesley approached the NCPC with her and Seth’s story so that others may not have to go through what she experienced. Since its premiere at the NCPC conference in 2016, it has been performed 16 times to nurses, doctors and other hospital staff, as part of training and service improvement programmes, and has been hailed as thought provoking and powerful in making a positive contribution to improving end of life care.
Thanks to support from Pancreatic Cancer UK, the Leeds Teaching Hospitals NHS Trust, St Giles Hospice and NHS England, the short drama has now been filmed. A workbook has also been produced, with questions and conversation starters to help staff reflect on the drama and their own experiences.
Lesley says “My world was turned upside down in little more than a month. In that time Seth and I had support from many great people, but there were still some things that made a terrible experience even worse. Brian has done a wonderful job in turning this into a drama, and now with the DVD it will be even more widely available. We know that people are finding this useful as a training resource, and now it’s even easier to learn from what happened to Seth and to me. By making this resource more widely available we are creating change and a legacy in Seth’s name”
Claire Henry, Chief Executive of the National Council for Palliative Care, said “End of life care has to be centred on the individual, and as it says in the Ambitions framework, all staff must be prepared to care. Seth and Lesley’s story shows what can go wrong, but through this DVD and the study pack we also know how to get it right. I’m grateful to Lesley for sharing her story, and to Brian for his skill in turning it into a play. The DVD would not have happened without support from Leeds Teaching Hospitals NHS Trust, St Giles Hospice, NHS England and Pancreatic Cancer UK. It is wonderful to be able to stand with such a range of partners as we seek to improve end of life care for everyone.”
Sarah Bell, Head of Services at Pancreatic Cancer UK said: “We’re delighted to have had the opportunity to work with our wonderful supporter Lesley and the National Council for Palliative Care to develop educational resources for health care professionals to help them provide good end of life care. Unfortunately, there are huge inconsistencies in this vital support across the UK. We believe it needs to radically improve, so we see all patients having their symptoms and pain controlled and their psychological and emotional needs looked after at the end of their lives.
“Good end of life care can make the world of difference to people with pancreatic cancer and their families, particularly as the vast majority of patients have precious little time. Tragically 80 per cent of patients are diagnosed at an advanced stage, and those patients will on average live for just two to six months. We believe patients should be spending this time with their loved ones and saying their goodbyes, rather than struggling to organise end of life care. We would like to say an enormous thank you to Lesley for sharing her and Seth’s story, to help improve the end of life care which other families affected by this tough cancer receive in the future.”
Homeward Bound has also been nominated in two categories at the Patient Experience Awards, with the results to be announced on March 21.