Going back to school can be an exciting time for millions of children and young people across the UK – but for some, this isn’t the reality. For children and young people living with, or recovering from, brain tumours, the new school year is likely to bring several physical, psychological and social challenges.
Children with brain tumours may face numerous challenges, including cognitive impairments and life-altering disabilities after their tumour diagnosis, treatment and recovery. For some, this can make going back to school an incredibly daunting time, where what they go back to isn’t the same as it was before – in their abilities, stamina, social circumstance and emotional capacity.
How our team support
Anna Roberts, one of Tom’s Trust’s psychological wellbeing practitioners at Alder Hey Children’s Hospital, has spoken about the reality of this time for children they help, and the importance of their work in ensuring this transition is as smooth as possible.
Anna says: “One of the main ways that we supports families in this time is by working alongside the medical team to support individuals in getting back to school – that could be us attending meetings to help the school understand what that young person may have experienced, what difficulties that they might be experiencing still, and what cognitive impairments there might be.
“We will support families by helping to make sure all those things are in place in school to make sure the child can go back, and they’re as comfortable as they can be and as safe as they can be.”
Social challenges and isolation
Tom’s Trust recognise that one of the most significant challenges children diagnosed with brain tumours face is difficulty in forming and maintaining friendships. Naturally, these would be formed in their community and during school – but for a child facing a brain tumour, these moments would be missed due to being in and out of hospitals for treatments.
Social interactions can become more difficult and complex to navigate – particularly when approaching adolescence. Peer relationships are one of the most important factors in a child feeling valued and accepted, meaning this can be a particularly sensitive times in their development – especially to girls, who often face challenges in developing friendships.
Camille’s experience
Hayley from Suffolk, whose daughter Camille was diagnosed with an Ependymoma brain tumour at just 16 months old in 2009, recalls how difficult this time was for her and her family. She remembers the gap widening between Camille and her peers as time went on, and how incredibly isolating it was for her daughter.
Hayley says: “At school, for the first few years it was fine, because Camille was going along nice and steady with all of her peers – and then it went from being all nice, and from her coming up here to her being down here – just because she couldn’t keep up with the learning.”
Whilst Hayley recognises that the school gave a good amount of support with their Special Educational Needs (SEN) team, which she describes as ‘great’, she also notes that it didn’t necessarily fix the emotional damage done.
She said: “The case with a lot of children diagnosed with brain tumours is that they’re not necessarily bullied but are isolated – and that’s probably one of the hardest things we’ve had to deal with.
“Camille was isolated from friendship groups, and her attempts to make friends wasn’t reciprocated by her peers. She wasn’t invited to birthday parties which we knew were happening, and that gap just widened and widened. It was really hard. The staff in the school did their best, but you can’t force children to play with another child.”
As Camille went into high school, her SEN team grew a little wider, which introduced her to young people who shared similar difficulties to her. Although this change was better than before, it still wasn’t easy.
Hayley says: “It’s been really difficult for her – school is not easy for a child who had what she had, and social isolation is one of the biggest issues facing these children.”
Building confidence and resilience
That’s why Tom’s Trust is keen to help children, young people and their families to introduce positive experiences, support and coping mechanisms during such difficult times. We aim to help increase children’s self- esteem, help in creating a firmer structure, and assist in providing a more solid foundation for the future, through the use of their clinical psychologists and psychological wellbeing practitioners.
The families aren’t the only people who have to adjust to this new normal, though. Teachers, staff members and even the physical layout of classrooms should be considered. Our clinical psychologists, medical team and practitioners have regular check-ins with the schools to liaise, check on plans, and provide advice on how the school can best adjust, to ensure children and young people are welcomed back to school in the most supportive and accommodating way.
Faris’s experience
For some, with support from Tom’s Trust, going back to school can be a good experience:
Faris, 19, from Liverpool, was diagnosed with a brain tumour four years ago, and is currently supported by Tom’s Trust. He remembers the changes his sixth form made for him on his return, and how accommodating they’d been.
Faris says: “At first when I finished treatment I went back to sixth form, and it all felt a bit weird. But they were extremely helpful and supportive with everything I needed at the time – not only with emotional support, but physical support as well, putting things into place for me and taking suggestions from me.”
Faris’ sixth form considered both physical and psychological impairments that he was experiencing , from finding ways to accommodate to his eyesight, to constantly considering his mental capacity with schoolwork.
Their eagerness to make him feel more comfortable had, in turn, given Faris the confidence boost he needed to move through to college – who were thankfully similar in their approach.
He says: “I felt more confident moving through to college. I was immediately met with student support services, and they were more than happy to put things into place – such as giving me a laptop instead of a piece of paper, as reading is quite difficult.
“They sat me at the front, so I was able to see the screen and see any reading material the teacher was reading off the whiteboard and smartboard. There was a lot going on at the time, but they even helped with emotional support. I’m contacted by someone from the college who will just check up on me every once in a while, so it’s been really good.”
Faris is currently post-treatment and while he is being monitored by Alder Hey, he is also getting back into the routine of work, college and friendship whilst trying to navigate the bad days.
He says: “With all the support from people like Tom’s Trust, it’s been really helpful to integrate back into life – particularly as Anna helps me structure my days again.”
Working together
Regarding the support given to children and young people like Camille and Faris, Anna says: “We’re really fortunate here in Alder Hey, that we do have quite a wide variety of services that get involved. So, we work quite closely with our clinical nurse, our specialists, we have regular meetings to make sure all is in place for the young people that are going through treatments, and that are post treatment.”