Stem cell charity Anthony Nolan, in partnership with Great Ormond Street Hospital Charity (GOSH Charity), has launched a UK-first research project to improve the supportive care of children and young people during and after cell therapy.
Cell therapies, including stem cell transplants and CAR T-cell therapy, help hundreds of children and young people in the UK each year with blood cancer and genetic disorders – but survival is only part of the story.
While treatment can be lifesaving, it can leave children with long-term health effects, including diabetes and heart conditions, and may also impact growth and fertility.
The intensity of treatment can affect quality of life during therapy and recovery, often at a critical stage in a young person’s development.
The charities say children and young people need tailored, consistent and sustained support to not only survive, but thrive. Yet supportive care – the help patients and their families receive to manage symptoms, cope emotionally and navigate the healthcare system – varies widely across the UK and there are no robust ways to measure how effective it is.
Treatment with and recovery from a cell therapy can take several years. Research from Anthony Nolan shows households lose an average of £30,000 in income following diagnosis1. This can cause significant stress in addition to the worry of going through treatment, yet only 17 per cent of UK transplant centres have a psychologist embedded in their stem cell transplant team2.
Hundreds of new advanced cell therapies are being developed – in 2025, the number of cell therapy trials in the UK reached 1933.
With the number of patients treated with cell therapies set to increase, Anthony Nolan and GOSH Charity say understanding patients’ long-term care and support needs has never been more important.
Over this two-year study, fully funded by GOSH Charity, Anthony Nolan researchers will conduct in-depth interviews with children, young people and their carers to understand exactly what support children and young people need – whether physical or psychological – during and after treatment. The study will investigate what support services are currently in place, how they vary across the UK, and what more is needed to best support young cell therapy patients.
The findings will lead to the development of new support services and resources for children, young people, and their families who are treated with cell therapies.
Rachel Miller, lead nurse and head of patient services at Anthony Nolan, said: “Cell therapies are now regularly saving the lives of children and young people with conditions that were once considered incurable. But survival alone is not enough – life after treatment should be about thriving, especially for young patients who have so much of their future ahead of them.
“The treatment journey can be very intense, with young patients often having to spend long periods of time in hospital, not able to go to school and left to cope with long-term health effects.
“We know the number of patients receiving cell therapies is set to increase over the coming years, which is why we’re excited to be partnering with GOSH Charity on this UK-first research. With our combined experience in caring for young people going through cell therapies, both charities are uniquely placed to investigate what support these patients need and how to put these services into practice.”
Aoife Regan, director of impact and charitable programmes at GOSH Charity, said: “Treatments like cellular therapies are transforming outcomes for children and young people with cancer and rare blood disorders, but a child’s experience goes far beyond survival. Missing school, friendships and key milestones can have a profound impact, and the effects of treatment can last long after they leave hospital.
“That’s why it’s so important we understand not just how to save lives, but how to support children and young people well into the future. GOSH Charity’s research with Anthony Nolan is a vital step towards building a clearer picture of the long-term support patients and their families urgently need.
“Alongside this, we are investing in the future through the development of a new Children’s Cancer Centre at GOSH, which will bring together pioneering treatments, cutting-edge facilities and child-centred care and help give seriously ill children the best chance, and best childhood possible for generations to come.”
Harley (pictured) was eight when he was diagnosed with acute lymphoblastic leukaemia, a type of blood cancer. Following two years of intense treatment, he had a stem cell transplant around the time of his 10th birthday, which he had to celebrate on the wards.
“I’m immensely proud of him,” Harley’s mum Rachael said. “When Harley was having treatment, the emotional resilience that I saw in him, even on the really tough days, was amazing. I feel like he could attack anything now.
“As a parent that has travelled the oncology journey for a number of years now, I have my own experience as well as the stories of many other families we have met along the way. It is quite evident to both professionals and parents that the initial cancer itself is not what causes long term side effects or even the death of a child, but the drugs and treatment itself resulting in compromised immune systems.
“We as a family were warned at the start of each level of treatment of the potential side effects. We were warned that we would have to see our child’s body reach the ‘edge of death’ to complete treatment and see him healed of the disease.”
Rachael added: “Despite all his health challenges and each obstacle thrown at him, Harley has always maintained the best attitude. Those that don’t know him would never imagine what he has been through.”
