Pioneering at-home chemotherapy service praised by Wakefield family of five-year-old Alfie

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.

And one family who has benefited from the pioneering service is Sara and Phil Akers from Horbury, who have two children, Alfie, 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.

Sara said: “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 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.”

Sara said there haven’t been many pleasant surprises in Alfie’s cancer journey, but how he was going to receive chemo was.

"Chemo at home meant that for us,” Sara said.

"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.

“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.”

And 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 said.

“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.”

Neil said: “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 said: “Our introduction of an at-home service has quickly demonstrated numerous benefits to families.”

"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.

“This pioneering role is the first of its kind, and we’re hoping to inspire other teams across the country to adopt similar approaches.”

Alfie is recovering well from his various treatments and flourishing at school.

Sara said: “He still has mobility and balance issues from his initial surgery, along with some sickness, but he doesn’t let that slow him down.

"And, of course, he’s super excited about celebrating Christmas!”

Candlelighters, which receives no government funding, supports families facing children's cancer in Yorkshire, getting involved in many different projects to help ordinary families who are facing extraordinary circumstances.

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.

As well as funding roles they also invest heavily in equipment, such as play equipment and IT equipment to keep families connected to the outside world.They media workshops so children can get creative even if they are unable to get to school, making a really difficult time in the hospital that bit easier.

To learn more about Candlelighters, please visit www.candlelighters.org.uk