The Candlelighters Supportive Care Research Centre
Did you know that of all children who die with cancer, 1 in 3 will die not because of the cancer, but because of the side effects of treatment? Worse still, research into reducing these side effects for children is under-resourced, sparse, and inadequate.
Amazing progress has been made in understanding and treating childhood cancers. Today, around 80% of children or young people diagnosed with cancer survive.
But despite advances in curative medicine, little has been done to improve the experience of living through and beyond cancer. Children often receive cancer treatments designed for adults and the impact on their smaller bodies can be severe. They suffer horrible side effects which can be traumatic, permanent, and even deadly.
Six-year-old Ralph has T-cell lymphoma.
The treatment he’s receiving is incredibly effective; it began immediately and he is responding well to it. But it’s shocking to see what the side effects are doing to his little body...
The chemotherapy is aggressive and makes him sick. It decays his teeth and five have to be removed. His skin is sore and painful to touch. His immune system is severely suppressed, and he develops sepsis. Ralph’s mum, Cleo says, “No one can prepare you for the side effects. He couldn’t walk, he swelled up from steroids, he would scream in agony.”
If the side effects of Ralph’s treatment aren’t controlled properly, there’s even a risk he could die. We urgently need better ways to care for Ralph that will limit his side effects, reduce his suffering, and improve his quality of life and chance of survival.
The care Ralph needs doesn’t exist yet – but it will.
Introducing the Candlelighters Supportive Care Research Centre
Developing effective, kinder care is the best and fastest way to improve the lives of children with cancer and increase their chances of survival. The research that will help us do this is called supportive care.
What is Supportive Care?
Supportive care refers to everything except the treatment of the cancer itself. Supportive care includes preventing side effects of treatment, managing pain and reducing infection. It’s the care that gives children as full a life as possible.
We know research makes a difference. After all, because of research, the five-year survival rate for children’s cancers increased from 73% to 86% between 1997 and 2016. Now, we’re establishing the first Candlelighters Supportive Care Research Centre (CSCRC) at the University of York to develop effective, kinder care for young people with cancer, which will save lives, reduce suffering, and bring hope.
The CSCRC will enable the world’s leading supportive care experts to carry out high-quality research. It will invest in future supportive care specialists. And it will save lives, reduce suffering and bring hope to young people with cancer – not just in Yorkshire, but around the world.
As part of our commitment to childhood cancer research, we’ve worked closely with experts to identify the huge impact that can be made through improved supportive care. We believe our Research Centre can change the landscape of cancer care and transform what it means to undergo cancer treatment as a child.
Here, a team of experts will conduct high-value research which will rapidly advance the care of children and young people with cancer. Creating the Candlelighters Supportive Care Research Centre is a five-year project which will cost just under £1m. Together, we can make it a reality.
In the last 25 years alone we have invested over £11m into childhood cancer research, to improve early diagnosis, survival rates, treatments and quality of life, and develop experts for the future. Now, we want to take our commitment to the next level,
What impact will the Candlelighters Supportive Care Research Centre have?
In the short term, we will look at how to minimise hospital stays, prevent severe mucositis (mouth ulcers) and prevent nausea and vomiting. In the long-term (5-15 years), we aim to see:
- A team of new, capable researchers who will take studies to the next level.
- Fewer children and young people dying from side effects caused by cancer treatment.
- Better nutritional interventions and improved psychological and social support.
- Sustainable generation of grant income to continue to produce high-quality research.
- A Yorkshire-based, world-class centre of excellence in research, impacting global care.
We want to ensure young people and their families are at the heart of our research. To learn more about how you can have your say on the research the centre will do, visit here.
We're currently looking for people, businesses or foundations who may be able to help with funding support for this ground-breaking research. If you would like to be involved or would like to find out more, email [email protected].