Who we are
Tom’s Trust is the UK’s leading charity dedicated to providing psychological support to children with brain tumours and their families. By supporting the whole family, we help them to create their brightest possible future beyond diagnosis.
Our clinical psychologists support hundreds of children, and thousands of family members, within hospitals in the UK, helping from diagnosis, through their brutal treatment and as they return to life at home. Our team will also be there to support a family if their child is dying or has sadly died from this devastating disease.
Why families need support from a Tom’s Trust psychologist
Approximately 10 children and young people aged 0-19 are diagnosed with a brain tumour each week in the UK, that’s around 500 a year. Survivors of paediatric brain tumours face the worst long-term outcomes of any cancer group, and many will go on to experience life-long social, cognitive, physical and emotional challenges. Those with low-grade non-cancerous brain tumours can also still experience major long-term impact from their brain tumour.
No matter the diagnosis, many of these children and young people will experience serious mental health issues because of their tumour, and 62% of those who survive will then live with life-long disabilities. 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.
Early intervention and assessment of key areas of brain function can reduce the impact 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.
How our clinical psychologists support children and families
Our clinical psychologists are highly trained specialists in the complexities of the brain and the lasting impact from a brain tumour diagnosis and treatment. They understand that every child’s brain will be changed in some way — with cognitive, emotional and physical effects that can last a lifetime. Our team supports children as they adjust to life after, or with, a brain tumour, along with being there for the parents/carers and siblings too – because a child’s brain tumour diagnosis impacts the whole family. The Tom’s Trust clinical psychology team can provide:
• Neuropsychological assessments – help to measure a child’s cognitive abilities, psychological and emotional state. These assessments are a foundation for a child’s recovery and the results from this help to form a pathway of care and provide a benchmark for any future progress or decline.
• One to one support – help children to process their emotions, build resilience, and identify coping strategies.
• Parental support – individual sessions, groupwork, or workshops to tackle different subject areas such as uncertainty or to discuss what a parent wants to work through.
• Palliative care – available to help children with managing difficult symptoms, focused on quality of life as well as providing care following a child’s terminal diagnosis.
• Sibling support – through individual sessions or group work – holding space for a sibling’s experience in this situation.
• School liaison – for the child and their siblings, working with schools to ensure they are supported, a school understands how best to support them, and putting in place processes and learning tools to best reintegrate that child. Our CPs can also support with Education and Health Care Plan (EHCP) applications.
Our team and our strategy
Our team is based across the UK, with our Head Office in Cambridge and led by CEO Rebecca Wood (pictured). We currently provide our clinical psychology services in four centres in the UK – Addenbrooke’s Hospital in Cambridge, the Great North Children’s Hospital in Newcastle, Alder Hey Children’s Hospital in Liverpool and the John Radcliffe Hospital in Oxford and are continuously expanding our online national resources and services. We are also supported by an incredible team of Young Ambassadors (and their families). Find out more about our vision and strategy.
The founding story of Tom’s Trust
Tom was a healthy eight-year-old boy. He was happy and sociable and very handsome. He loved Manchester United; his favourite band was JLS, playing football and rugby and messing around with his two sisters and friends. In March 2010 Tom started getting headaches and vomiting, and he complained of neck pain. A few weeks after his symptoms started, he was diagnosed with a huge Medulloblastoma brain tumour. Tom had surgery and four months later was given the all clear. Two months’ later, at a routine scan, Tom’s family received the devastating news that Tom had a spinal tumour, and he had weeks to live. Tom died on 8th November 2010, eight months after his initial symptoms.
Tom’s Trust was founded in 2011 by the parents of Tom Whiteley – Andrew Whiteley and Debs Mitchell. No mental health support was given to their family as they navigated his diagnosis, and they grew determined that no other family should go through what they had experienced unsupported. Watch Tom’s story.