April is Teenage and Young Adult Cancer Awareness Month. The theme this year is ‘Empowering young people around healthcare’.
We know, from listening to our families, that the transition from child to adult services can be a big worry, they face losing the support, guidance, familiarity and understanding they had built up with their medical team and Tom’s Trust psychologist. Adding to that, the long-term effects caused by a brain tumour can make accessing services even harder. For that reason, we will be funding our first Independence Support Specialist in Cambridge, whose job it will be to ensure that teenagers, in East Anglia, who are living with the after-effects of a brain tumour and its treatment will have a smooth transition from children’s services to adult health services – something which currently starts to happen from the age of just 14. This expert will work with the child’s new medical team to ensure continuity in treatment and with their schools to ensure they continue getting the educational and emotional support they need, as they forge their own independent paths and enter their adult lives.
Chad’s story
Chad, 23, transitioned to adult services when he was 17, which is later than most teenagers. Chad and his mum, Sharron, felt the transition into adult services was rushed, lacked a personal touch and familiarity, and the family’s issues were ‘brushed aside’.
Sharron said: “Due to Chad’s side effects from treatment and his brain injury his paediatric consultant wanted to keep hold of him for a little longer which I’m eternally grateful for. It was nerve-wracking moving from paediatrics to adult services and having a new consultant who didn’t know Chad. Adult services felt very busy. At his appointment we met the consultant and his new specialist nurse. Both were pleasant. She asked Chad how he was doing, and Chad explained how he felt about the various side effects he experiences. She didn’t seem too concerned. She told Chad that she felt he could live a normal life, live independently in the future, learn to drive, eat a normal diet. The appointment only took around 15 minutes.
“I felt quite angry after the appointment. I felt she hadn’t read chads notes from paediatrics, in fact she had said the complete opposite to what we had been told a few years beforehand. The appointment was rushed. Once home we had a chat about the appointment and how Chad felt. He felt the consultant didn’t know anything about him and that he was being fobbed off. The side effects that were having a bad effect on him were brushed to the side. She was more interested in getting him back to college.
“I don’t think the transition from paediatrics to adult services went well. They didn’t consider that Chad has an acquired brain injury, memory, and processing issues. It would be better for there to be a clinic for 14- to 24-year-olds. There’s a teenage cancer unit so why not a clinic too. It would prepare them for adult services but still allow for more support. For me as a parent I could then see that Chad is supported and I would be more willing for him to attend appointments with me taking a step back.”
Future plans for Tom’s Trust
Tom’s Trust plans to roll the Independence Support Specialist role out to our other centres in time. That will see a transition specialist placed in Newcastle, Liverpool, and another to be announced soon… In broadening our service to our other centres, the national impact could eventually be +500 children. Helping to empower young people around their healthcare.