Helping young people who face terminal cancer
My Churchill Fellowship focused on a group of people who I had long felt were poorly understood and whose needs were not always being met as well as they might be. These were young people facing end of life care because of cancer.
"It has been inspiring to work with many international colleagues and to see the experiences of this group become much better understood." - Daniel Kelly, Fellow
I still remember young people who I had cared for in cancer settings who had received the most up to date, and sometimes very aggressive, cancer treatment. For some this had gone on for months or even years. Sadly, their cancer could sometimes return, and then they reached a point where no more curative options existed.
For my Fellowship I decided to travel to two major cancer centres, in Sydney and Melbourne, to see clinical services and meet people working in this field. I also wanted to talk to them about planning a research project that looked at young people’s unique needs in this field.
My trip took place in 2013 and since then I have maintained an active interest in this area. I have also returned to Australia to present the findings from two studies that I did on my return to the UK. One was a systematic review of published research, and the other was an in-depth interview study with professionals from across the UK who had experience of helping young people transition from active treatment to end of life care. I also supervised two PhDs in this area: one that looked at the ‘unspeakable nature’ of cancer in young people, and the other on the impact of working as a young nurse with cancer patients of that age. Book chapters, conference presentations and publications have also been produced.
However, the most pleasing part of my work is that I have contributed to changes in practice, such as via the Blueprints of Care produced by the Teenage Cancer Trust in 2016. I have also supported other researchers to investigate and improve the care of this age group. It has been inspiring to work with many international colleagues and to see the experiences of this group become much better understood.
My Fellowship came at an important time when I wanted to bring this issue to the fore and to inspire others. I gave presentations when I was in Australia, and I am pleased that there is now an active research group in Sydney that examines end of life care. I also spent time with clinicians and those providing emotional and physical interventions.
As I reflect on my Fellowship, I remember one young woman, who knew she was going to die but could not talk to her parents about it, as she knew they would become upset. So she kept it to herself and, when I met her, she said I was the first person she had talked to about her situation. Her name was Salome and she was extremely brave. She later sent me a letter in which she said she was about to embark on one more round of chemo “and then we’ll see how things are”. We both knew what that meant.
I have kept her letter to remind me of how lonely it can be for young people to be in this situation. I hope that others will continue to question what we do at present and to develop better support for young people with cancer facing the end of life at such a young age. They deserve the best support available.
For information on our Fellowships in this theme, see Our current themes.
The views and opinions expressed by any Fellow are those of the Fellow and not of the Churchill Fellowship or its partners, which have no responsibility or liability for any part of them.