Tom’s Trust is funding a new role at Addenbrookes to ensure that teenagers in East Anglia, who are living with the after-effects of a brain tumour and its treatment, are supported in their transition from child health services to adult health services.
Taking up the role of Independence Support Specialist is Caitlyn Gray, an assistant psychologist at Addenbrooke’s, who started in the new role last month. The role is the first of its kind.
Caitlin, our Independence Support Specialist
The new role, based in the hospital’s Paediatric Clinical Psychology Service, will focus on supporting young people with brain tumours and their families as they transition from children’s to adult services.
The move from children’s to adult services has patients seeing a different team at their local hospital or health and social services department. For the patients, losing the familiarity with their child health services teams, paired with the loss of familiar support, guidance and understanding with their medical team and Tom’s Trust psychologist can be daunting time.
In addition to this, the long-term effects to a patient caused by a brain tumour, such as cognitive and memory difficulties, fatigue and personality changes can make accessing those services even harder.
In order to help this transition run smoothly, Tom’s Trust have appointed their first Independence Support Specialist to ensure that everyone involved understands the process and feels supported. Caitlyn will also make sure the child will not be discharged from children’s health services until their care has been transferred to adult health services.
Why this role is needed
The new position will hopefully help young people in their move between services, such as Chad, who had a negative experience transitioning to adult services when he was 17 years old. Both Chad and his mum, Sharron, felt the transition was rushed, lacked a personal touch and familiarity, and the family’s issues were ‘brushed aside’.
Sharron said: “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 Chad’s 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.”
How this role will help
As the move between services begins at the age of 14, the Independence Support Specialist will work with the child from this age, and their new medical team, to create a smooth transition between the services and their treatment. They’ll also be working with the child’s school to ensure they continue to receive the required educational and emotional support, whilst simultaneously forging their own independent paths as they enter their adult lives.
Dr Lynda Teape, Director of Services Development at Tom’s Trust, says: “On behalf of Tom’s Trust, I am delighted to welcome Caitlin to the team, joining colleagues at Addenbrooke’s Hospital. We’re so excited to see the progress of her work on improving the psychological care of young people with brain tumours, and their families, as they make the challenging transition from child to adult healthcare services.”