Solving Kids’ Cancer UK is a parent-led charity for children with aggressive and rare cancers. CEO Stephen Richards talks about the charity’s mission to help more families benefit from its services.
Founded over ten years ago, Solving Kids’ Cancer helps raise funding to pay for treatments and clinical trials in Europe and the USA which are not yet available in the UK.
It also lobbies policymakers to help children with rare cancers access evidence-based care and support in the UK. The charity has specific expertise in neuroblastoma, a cancer of the neural crest cells involved in the development of the nervous system and other tissues.
“Around 100 children are diagnosed in the UK each year with this particularly devastating cancer,” explains Stephen Richards, who recently joined the charity, having previously worked for Macmillan Cancer Support. Based at Old Street, London, it has nine members of staff and around 19 office-based volunteers.
“We’re very careful about making the best use of donations. We fund a small team who provide emotional, practical and clinical support to families to help them make the right choices for their children’s treatment.”
Knowledge and support
More than 150 parents, children, clinicians and researchers from around the world attended the charity’s latest annual residential Neuroblastoma Parent Education Conference. “It was the first time I had attended,” says Stephen.
“It was wonderful to see parents, clinicians and researchers meeting and discussing the latest treatments and clinical trials in a way which was informative and equal. It amazed me how much knowledge the parents have and how passionate and committed they are to obtaining the best for their child. I was also impressed by the clinicians and researchers – many had travelled from the USA, Germany and Spain – in how open they were to having a dialogue with the parents. It’s also a chance for families and children to get together and share experiences, receive and give support.”
A current focus for the charity is to challenge the National Institute for Health and Care Excellence’s (NICE) decision not to approve immunotherapy for NHS use in England and Wales – largely because of cost. “Immunotherapy has been proven to be an effective form of treatment for some cancers, including neuroblastoma. It means families need to raise up to £250,000 to access the treatment abroad.”
Sharpening our focus
“Fundraising is a challenge as we’re a small organisation without the funds to promote ourselves compared with other larger charities,” explains Stephen, who says the charity is embarking on a strategic review to better focus on its goals. “We want to continue to use donations to best effect and be more thorough at measuring the difference we make. We also want to be more effective at communicating our message so that more families can benefit from our services.”
A helping hand from Shipleys
Solving Kids’ Cancer has been a client of Shipleys for many years “Shipleys helps us make sense of our financial numbers so we comply with legislation and best practice, introducing us to other organisations that we can learn from. Their technical expertise is second-to-none and for a small (but ambitious) charity such as ourselves to be able to access such a service is very reassuring.”
Want to help?
Solving Kids’ Cancer UK would be delighted to work in partnership with readers of Shipshape. For more information, email: firstname.lastname@example.org or visit the Solving Kids’ Cancer UK website