Yorkshire cancer charity Candlelighters is celebrating after their successful funding of a pioneering at-home chemotherapy service for children.
Throughout 2024, the charity funded a brand new NHS role, the Candlelighters’ Chemotherapy Project Nurse Specialist. The role will be funded by the charity for two years to enable evidence to be built of the benefits of chemotherapy at home. The aim is that it will be incorporated as a standard role, within Leeds Teaching Hospitals NHS Trust.
Specialist nurse Neil Shaw explains: “This project was about demonstrating the benefits of an at-home chemotherapy service for child cancer patients. Whilst some children remain in hospital for much of their cancer treatment, there are many others who go home and come back to hospital on a regular basis. But this presents its own difficulties.”
“For a lot of families in Yorkshire, the nearest treatment centre is Leeds Children’s Hospital. This can mean long trips to and from Leeds, which are time-consuming and expensive. For those using public transport, it can be almost impossible. The long hospital journeys often result in missed school or work, and disruptions to their family life. These challenges have emotional, practical, and financial implications, intensifying an already very difficult time for the child and their family.”
Emily Wragg, CEO of Candlelighters says: “Candlelighters recognised there could be a tremendous positive impact for children and their families by administering chemotherapy at home. Our introduction of an at-home service has quickly demonstrated numerous benefits to families.”
Sara Akers is mum to Alfie, aged four and Poppy, two. Alfie was diagnosed with medulloblastoma, a type of brain cancer, in September 2023, as part of a routine eye test, when he was three years old.
Yorkshire-based Sara explains the benefits of the at-home chemotherapy service. “The impacts of a child cancer diagnosis are massive – the shock and worry are huge. But there are also additional unexpected difficulties, during treatment. In the first few months it put a big divide between us as a family unit, I was mainly with Alfie in hospital and Phil my husband was at home with Poppy. We spent a couple of weeks together at Christmas and then straight into chemotherapy. Phil is self-employed, so when he took time off initially he didn’t get paid, which also put a strain on us.”
She adds: “There haven’t been many pleasant surprises in Alfie’s cancer journey, but how he was going to receive chemo was one of them. Chemo at home meant that for us, Alfie only had to be physically in hospital for 20 planned days over the eight-month period he was under treatment. This was an absolute game changer, because for the first part of our journey I was in hospital a lot with Alfie, which meant I barely saw my little girl and husband.”
“The main benefits for us were minimising disruption caused by treatment. Luckily for Alfie, for the most part, he was able to continue living his life including going to nursery when he was well. During his cycle we were able to arrange a time that worked for us, which mostly was at the end of the nursery day. This meant I was able to have both children with me at home and do the usual tea and bed time routines.”
“My husband Phil would often need to take time off to be in hospital with us or to look after our daughter, but he didn’t need to do this when we were at home, which was a huge benefit. It just made life that bit easier, which we so desperately needed. Most importantly we have been able to stay together as a family unit.”
Sara is full of praise for specialist at-home chemotherapy nurse Neil Shaw. “Having the same warm friendly face was, without a doubt, one of the most important elements. Alfie built a trusted bond with Neil.”
She says: “Neil cares, not just about Alfie but all of us. I looked forward to Neil’s visits as I desperately relied upon him when I was having my bad days. He knew Alfie’s case inside out, he was present in the oncology meetings and above all he knows his stuff. He was able to listen and support in a way he knew I needed.
“I’d say this personalised service was probably the key benefit. As people, we like to feel respected, understood, seen and heard. Receiving life-saving treatment is no exception to that. Neil was able to do all that and more.”
Emily Wragg of Candlelighters says: “This pioneering role is the first of its kind, and we’re hoping to inspire other teams across the country to adopt similar approaches. Already after one year, we’re seeing huge benefits for children and their families who are finding this service incredibly valuable.”
Candlelighters receives no government funding. They are able to provide a huge range of support to children and their families through a childhood cancer diagnosis because of the people, communities and businesses that fundraise for or donate to the charity.
To learn more about Candlelighters, please visit www.candlelighters.org.uk