Tom’s Trust clinical psychologists support hundreds of children, and thousands of families, within hospitals in the East, North-East, North-West, and now Thames Valley; helping them from diagnosis, through treatment and as they return to life at home. The clinical psychology team will also be there to support a family if their child is dying or has sadly died from this devastating disease.
The paediatric neuro-oncology service at the Children’s Hospital in Oxford is the Principal Treatment Centre (PTC) for the Thames Valley region - reaching Swindon, Milton Keynes, Slough, Wycombe, Reading, and areas of Northamptonshire. In this region, there are approximately 30-40 children and young people diagnosed with brain tumours per year. Children are often followed up by the service for up to 10-years post treatment.
The new Tom’s Trust clinical psychology service at the Children’s Hospital in Oxford will exclusively support the needs of children with brain tumours, and their families, recognising the complex psychological needs of this unique group. The Tom’s Trust service will triple the team’s current capacity for direct clinical work, and they expect to be able to offer an additional 300 appointments to children with brain tumours and their families each year.
Dr Jeni Tregay, Paediatric Clinical Neuropsychologist at Oxford University Hospitals, says:
“Our current service sees many of the children and young people in our region diagnosed with a brain tumour but, like many similar services, we have no dedicated funding for neuro-oncology meaning that we are often unable to provide the depth of psychological support and intervention that we would like or the timely re-assessment and follow-up that these children need. From speaking with our families, we know that there is a high level of unmet need that extends beyond active treatment, and we are very grateful to have been selected as one of the UK Principal Treatment Centres (PTC) to benefit from a fully funded Tom’s Trust clinical psychologist post so that we can begin to change this.
“With the new Tom’s Trust service, we will be able to increase both the depth and breadth of psychological care that patients and their families receive. The new service will provide greater capacity for psychological intervention at an individual, family, and group level that we hope will help families to feel better supported through treatment and afterward. We also aim to offer proactive neuropsychological ‘check-ins’ with some more vulnerable families so that we can address concerns sooner and work toward better quality of survival once treatment ends.”
Rebecca Wood, CEO at Tom’s Trust, said:
“We are so proud to be able to help families living with a devastating brain tumour diagnosis and its effects in the Thames Valley region. We know this new service will make a positive impact on the families who so desperately need this vital support. We are fundraising hard to develop and sustain this brilliant new service as well as to allow us to plan our next two services to help families in other parts of the UK.”
Why do families need support from Tom's Trust?
There is a common misconception that children treated for brain tumours make a full recovery. The reality is that a brain tumour is emotionally, physically, and mentally devastating, and for children the impact of their medical treatment can continue to unfold for years afterwards. A brain tumour diagnosis is also traumatic for the whole family and has a huge effect on the long-term wellbeing of everyone involved.
Approximately 500 children aged 0-19 are diagnosed with a brain tumour each year. That’s nearly 10 children per week. Many children experience serious mental health issues such as PTSD, anxiety, and depression, as a result of their tumour and treatments, and 62% of children who survive a brain tumour will then live with life-long disabilities (such as blindness, hearing loss, lost motor-function or learning disabilities).
Tom’s Trust clinical psychologists carry out cognitive, psychological, and emotional assessments on children and the results from this help to form a pathway of care and provide a benchmark for any future progress or decline. Also offered as part of the service is access to one-to-one support, school liaison reintegration, whole-family support, and group therapy sessions.
Early intervention and assessment of key areas of brain function can reduce the likelihood of long-term disabilities and provide the best chance for children to get back to school, resume their lives and go on to achieve their full potential. If Tom’s Trust didn’t exist these families would not have this support. Supporting one child and their family costs Tom’s Trust £3,335 per year.
What Tom’s Trust families say about the charity’s support:
- “When my son was first diagnosed with his tumour, my fear of the unknown was so great. I was so worried that I didn’t understand anything about brain tumours, even with a medical team standing in front of me. Once I had the support of Tom’s Trust, I knew I had found something really special. Our clinical psychologist saved us in so many ways.”
- “We cannot put into words how grateful we were for the intervention of Tom's Trust. Our daughter finally had a dedicated team, with a set of unique skills that were able to support both her and the wider family.”
- “Since our little boy’s surgery, he has suffered with anxiety. He has struggled with his sleep, has a phobia of sickness, has a lot of anxiety around noises and smells as well as travelling to different places. If it wasn’t for our clinical psychologist, we would have had no one to turn to.”
Tom’s Trust
Tom's Trust is the UK's only charity dedicated to providing mental health support to children and young people, with brain and central nervous system (CNS) tumours, and their families. The charity believes that every child with a brain or CNS tumour should have access to the mental health support that they need, as well as their loved ones.
Find out more about Tom’s Trust here: www.tomstrust.org.uk
