As we celebrated a year of the Tom’s Trust service at Alder Hey Children’s Hospital we took the opportunity to interview Dr Meghan Owens, our clinical lead at the centre, about the past year, challenges, how our funding helps, and looking to the future.
Before the Tom’s Trust Clinical Psychologist team came on board at Alder Hey it took an average of six months, for families facing a child’s brain tumour, to access psychological support. That wait has been hugely reduced. How do you feel about that?
Being able to work in a service where we know we can meet demand and be responsive is rewarding. We can now screen new referrals within two weeks, so they have a point of contact with our team. Not everyone will want support from us straight away but at least they know we are here. The Tom’s Trust funding towards our team makes a massive difference to families, and to us – we can do our job.
Dr Meghan Owens with Polly
What is the role of a Tom’s Trust Clinical Psychologist? How do you support children with brain tumours, and their families?
We work with families at all different stages; some may be at the point of diagnosis, some will be struggling with the impact of treatment, and some will be facing challenges getting back to school and daily life. We can now also offer sibling support; we couldn’t do that without Tom’s Trust funding.
During initial consultations we will introduce ourselves, offer help related to the child’s health, and find out about the whole child – not just their diagnosis. We ask who they were before this, what do they enjoy, what do they like at school, etc… We meet some patients six months down the line, so we ask what was their diagnosis like? What has their experience been so far? How was their medical team and hospital experience? Then we work on some collaborative goals for our work together.
We see a lot of parents at the end of treatment. They say that everyone celebrates at that point and returns to normality. But for our families it doesn’t work like that. They lose the safety net of Alder Hey, there can be concerns about relapse, and impact of treatment. We now organise an end of treatment parent’s group; designed to help parents connect, hear other’s stories, and receive support as they adjust to a new normal.
A big part of our work is also to support children back into school. After a neuropsychological assessment (that those at risk qualify for) we will make suggestions to a child’s school on how they can adapt their curriculum and school environment to meet the needs of that child. A lot of schools have never had a child who has gone through a brain tumour diagnosis. We help to make the transition as smooth as possible. Children can lose confidence and look visibly different. It isn’t enough to just support the child, we need to be involved with the family and the school – facilitating the whole system around that child to support the child.
During treatment we will also work with the child’s medical team to ask how we can give this child choice and control. Some children struggle with bloods / cannulas. We liaise with staff to make the treatment as easy as possible – this sometimes just requires a small tweak.
Our role varies so much – some need just a neuropysch assessment, some school liaison, some emotional support and at different stages through treatment. If a child remains under a consultant, we can support them, and now their families.
When you’re working with children what techniques do you use?
We use different therapeutic models. Cognitive behavioural therapy is a big one – managing low moods and anxiety. Using a narrative approach too – we’ve drawn someone’s tumour before, trying to externalize it. When a child is receiving treatment life becomes very medical, so we hold space to think about what makes them them, what do they enjoy – they’re not their tumour. For a family it’s about reminding them they’re still a person. For parents we use compassion focused therapy, identifying how can they be kinder to themselves. For small children we get very creative and use lots of drawing and storytelling to understand how they are feeling. We will also use exposure therapy if a child has a fear of treatment such as involving needles – we will arrange a meeting with phlebotomy and allow play with safe equipment. The sibling toolkit is a great resource for working with siblings too.
Why do you think your work, and the work that Tom’s Trust is doing, matters? What is the impact?
It makes a huge difference. A cancer diagnosis doesn’t just affect the child, it is everyone around the child – family, school, extended family, friends. If you are left to navigate this alone, outcomes for families would be very different. If a parent is struggling, they are not at full capacity to support their child. The families whose children who go on to reintegrate well into school and homelife are the ones who will have had good support from the whole oncology team. We believe in prevention rather than cure (wellbeing specific).
What would you like to see offered in the future for mental health support for children (and their families) who face a brain tumour diagnosis at Alder Hey?
That we all still have our posts funded and to continue to develop our offering. We can still see gaps and opportunities in our care. We would like to offer neuropsychological assessments to more people – there is currently a criteria threshold so we can keep up with demand. We would like to extend our school liaison provision, and to provide a rolling programme of group support to our parents and siblings.
Find out more about our North West service.
