A ground-breaking mental health support service for children with brain tumours and their families, launched by Tom’s Trust at the Oxford Children’s Hospital in October 2024, is already making a significant difference. The dedicated clinical psychology service is helping families cope with the devastating impact of brain tumours, providing vital support during and after treatment.
Immediate Impact on Families
In just a few months, the service has already:
- Cleared waiting lists for cognitive assessments and therapeutic interventions.
- Improved access to vital appointments for children and their families.
- Supported children’s reintegration into education post-treatment, with Dr Emily Townsend, the lead clinical psychologist, collaborating closely with schools and other organisations.
Dr Townsend is also introducing follow-up cognitive assessments for children already seen by the service. These assessments form a pathway of care, helping track progress and identify any areas requiring additional support. End-of-treatment support groups and expanded school outreach initiatives are also being planned.
A Vital Resource for the Thames Valley
The Oxford Children’s Hospital is the Principal Treatment Centre (PTC) for paediatric neuro-oncology in the Thames Valley region, covering areas such as Swindon, Milton Keynes, Slough, Wycombe, Reading, and parts of Northamptonshire. Annually, 30–40 children in this region are diagnosed with brain tumours, and many require long-term follow-up care for up to a decade post-treatment.
This new service has tripled the hospital’s capacity for direct clinical work, allowing an additional 300 appointments per year for children and their families. These appointments are tailored to meet the complex psychological and emotional needs of families navigating the life-altering challenges of a brain tumour diagnosis.
Rebecca Wood, CEO at Tom’s Trust, Comments
“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 service will make a positive impact on the families who so desperately need this vital support, and it is so promising to see these results four months in.”
Why This Support Is Crucial
Brain tumours are the biggest cancer killer of children and young adults in the UK, with approximately 500 children aged 0–19 diagnosed every year. Many survivors face life-long challenges, such as:
- Disabilities: 62% of survivors live with conditions like blindness, hearing loss, or impaired motor and cognitive function.
- Mental health struggles: PTSD, anxiety, and depression are common among children and their families.
- Education barriers: 90% of children report their education being disrupted by their diagnosis or treatment.
Early psychological intervention can dramatically improve outcomes, helping children return to school, rebuild confidence, and achieve their full potential.
About Tom’s Trust
Founded in 2011, Tom’s Trust is the UK’s only charity dedicated to providing psychological support to children with brain tumours and their families. Named after Tom Whiteley, who passed away at age nine from a brain tumour, the charity was established by his parents, Debs Mitchell and Andrew Whiteley, to ensure no family faces this journey alone.
Tom’s Trust provides:
- Cognitive, psychological, and emotional assessments.
- One-to-one therapy and whole-family support.
- Liaison with schools to aid children’s reintegration post-treatment.
- Compassionate care for families coping with bereavement.
What Families Say
- “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.”
The Cost of Care
Supporting one child and their family costs £3,335 per year, but the impact of this care is life-changing. Families gain tools to cope with the long-term challenges posed by a brain tumour diagnosis and treatment, ensuring children can thrive despite their circumstances.
A National Mission
The Oxford service is part of Tom’s Trust’s vision to provide clinical psychology support to children with brain tumours across the UK. Currently operating in regions such as the East, North-East, and North-West, Tom’s Trust aims to expand further to reach every family in need.
How You Can Help
To support this vital work or learn more about the charity, visit www.tomstrust.org.uk. Donations, corporate sponsorships, and community fundraising events all contribute to ensuring that no family faces a brain tumour diagnosis alone.
In Conclusion
The Tom’s Trust clinical psychology service at the Oxford Children’s Hospital is already transforming lives by providing essential mental health support to children with brain tumours and their families. Through this pioneering initiative, families gain the emotional and psychological tools needed to navigate one of the toughest challenges imaginable.
As Rebecca Wood puts it: “Together, we can give these children the best chance to thrive and make a meaningful difference in their lives.”
