{"id":583309,"date":"2025-11-20T21:09:20","date_gmt":"2025-11-20T21:09:20","guid":{"rendered":"https:\/\/www.europesays.com\/uk\/583309\/"},"modified":"2025-11-20T21:09:20","modified_gmt":"2025-11-20T21:09:20","slug":"york-research-helping-to-shape-supportive-care-for-children-and-young-people-with-cancer","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/uk\/583309\/","title":{"rendered":"York research helping to shape supportive care for children and young people with cancer"},"content":{"rendered":"

Posted on 20 November 2025<\/p>\n

Pioneering research led by the University of York is transforming supportive care for children and young people with cancer, directly driven by the crucial insights of patients and their families.\n<\/p>\n

\"\"Professor Bob Phillips. Photo credit: Charlotte Hedgecock Photography <\/p>\n

The Candlelighters Supportive Care Research Centre (CSCRC), a \u00a31 million partnership launched two years ago between the Yorkshire-based children\u2019s cancer charity Candlelighters and the University of York\u2019s Centre for Reviews and Dissemination, is leading the drive to improve the experience and outcomes of children undergoing cancer treatment.<\/p>\n

Groundbreaking<\/strong><\/p>\n

At the heart of this groundbreaking work are the Patient Family Involvement Research Groups, where children, young people, and their families meet with researchers to guide the focus and design of vital supportive care studies.<\/p>\n

The Groups, primarily run from the Candlelighters<\/a> family support centre in Leeds, provide a platform for those with direct experience of childhood cancer to influence research priorities.<\/p>\n

Professor Bob Phillips<\/a>, one of the world\u2019s leading experts in childhood cancer research, leads the CSCRC<\/a> and is a Paediatric Oncology Consultant at Leeds Children\u2019s Hospital and Professor in Paediatric Oncology at Hull York Medical School.<\/p>\n

He said: “These are really interactive and thoughtful sessions, which draw on the expertise and experience of childhood cancer patients and their parents. This work helps us to improve and prioritise the research needed to improve supportive care for children and young people with cancer.<\/p>\n

\u201cResearchers from around the world want to include the considerations from the group in their planned works. It\u2019s highly unusual and very positive to have a group where patients and parents are so engaged.\u201d<\/p>\n

Legacy<\/strong><\/p>\n

Shaun was diagnosed with acute lymphoblastic leukaemia in April 2015, aged five. He underwent treatment and a stem cell transplant which was initially successful, but sadly he relapsed and died in June 2017.<\/p>\n

Since then, Shaun\u2019s mum, Tina, has channelled her experience into supporting research that can improve care for other children. Taking part in the Patient and Family Involvement research groups at Candlelighters helps her carry forward Shaun\u2019s legacy and ensure his experiences make a difference.<\/p>\n

\u201cResearch is so important to us as a family. Without it, we wouldn\u2019t have had the time that we had with Shaun,” she said.\u00a0 “So even though he\u2019s not benefiting from it now, he did benefit from it. We probably had two and a half years more than we would have done. Children many years ago with Shaun\u2019s diagnosis would have died very quickly.\u201d<\/p>\n

\u201cMucositis, for example, was something he suffered really badly with. Being involved with new treatments like the red-light therapy, which was the focus of a recent research group, makes me feel positive that children in the future aren\u2019t going to go through what Shaun went through. The PPI groups are a really important way for children now to have a voice.\u201d<\/p>\n

In August 2023, 11-year-old Joshua received the diagnosis of cancer. His aggressive lymphoma required intensive chemotherapy treatment and a four-month stay in Leeds General Infirmary.<\/p>\n

Two years on, Josh is recovering well and the whole family have been doing everything they can to raise money and awareness of childhood cancer. Helen and Gavin, Josh\u2019s mum and dad, explain why all three of them have been taking part in the research groups.<\/p>\n

Treatments<\/strong><\/p>\n

Helen said: \u201cWe\u2019re about to embark on our third group. I think we\u2019re the kind of people, Josh included, that if we can make a small fraction of someone\u2019s experience better, then we feel it\u2019s our obligation to try and help.<\/p>\n

\u201cThe group sessions are great. They\u2019re a mixture of updates as to where the research studies are up to, and then they get our experiences and opinions on things, including the kids. There are families with completely different experiences, different diagnoses, different treatments and different outcomes, so you get such a lot of different perspectives.<\/p>\n

\u201cOur journey with research started when Josh was in isolation. He did a video of him using the red light therapy on himself, to show it\u2019s nothing to be afraid of, and we did an interview about what it was like. It was something we really benefited from, so it was really important to us that we tried to do as much as we could, so that other families didn\u2019t have to go through the same complications with mucositis that Josh did.\u201d<\/p>\n

Impact<\/strong><\/p>\n

Hearing that things are actually changing or being put in place because of the research groups and the Supportive Care Research Centre, it\u2019s amazing. Knowing that we are helping to shape things, even if it helps just one patient or family, that\u2019s mission accomplished for us.\u201d\u00a0<\/p>\n

Professor Phillips added:\u201cA startling statistic is that of all children who sadly die with cancer, one in three die not because of the cancer itself, but because of the side effects of their treatment. Worse still, research into reducing these side effects for children is under-resourced, sparse, and inadequate.\u201d<\/p>\n

The CSCRC is dedicated to tackling this issue by focusing on managing side effects, reducing infection, and controlling pain, ultimately increasing the likelihood of survival and reducing long-term impacts.<\/p>\n

Emily Wragg, CEO of Candlelighters, added: \u201cMore than 2,400 children and teenagers are diagnosed with cancer in the UK each year. Amazing progress has been made in understanding and treating childhood cancers. Today, around 80% of children or young people diagnosed with cancer will survive.\u00a0<\/p>\n

\u201cThis is an incredibly encouraging statistic, but despite advances in curative medicine, little has been done to improve the experience of living through and beyond cancer.<\/p>\n

\u201cInitial investment from Candlelighters enabled the opening of the groundbreaking Candlelighters Supportive Care Research Centre \u2013 the first dedicated centre in the world to focus on improving care for children with cancer.\u00a0<\/p>\n

\u201cLess than 5% of all cancer research is spent researching the care needs of cancer patients, especially young people, and how best to meet them. We are funding research that most others don’t, in this vital yet underfunded area of cancer care.\u201d<\/p>\n

In just two years, the CSCRC has already driven significant research, often directly inspired by the Patient Family Involvement Research Groups:<\/p>\n