What We Do
450 children are diagnosed with a brain tumour every year in the UK.
80% of them are deemed cured 5 years later. More children are surviving, and are living longer, thanks to more intensive surgical and oncological therapies, but this almost always comes at a significant price. The aggressive treatments can harm developing brains, causing physical and learning disabilities and a range of health problems.
Success provides a range of support services to help survivors, and their families, who are struggling with life after cure.
Multi-Disciplinary Survivor’s Clinic
Success is making the case for dedicated, multi-disciplinary ‘one stop shop’ clinics, based at key hospitals around the UK, to provide ‘joined up’, continuous rehabilitative outpatient services for children and young people surviving the aftermath of a brain tumour.
The service will provide access to allied therapists, (including psychologists, occupational, speech & language, physiotherapists, vocational advisers and social workers), and clinical support in neuropsychiatry, neuro-endocrinology, specialist nursing and neuro-rehabilitation medicine.
Return to School Support
Success has identified the lack of support for survivors of childhood brain tumours when returning to school, post treatment. The reintegration back into school can be very hard; Children are routinely bullied, excluded, misunderstood, or ignored; Many schools assume ‘cure’ means return to health, and misunderstand the nature, and evolving effects, of what is in most cases an acquired brain injury. Families are often provided with reports of neuropsychological assessment, but struggle to prioritise the recommendations.
Success are working to:
- Support families and teachers to implement recommendations from existing neuropsychological assessments and to create a tailored programme best suited to every child’s differing injury, needs and situation.
- Increase advocacy and access to Educational Health Care Plans (EHCP)
Research Projects
We also conduct our own, and support other, externally led research studies into the unmet needs of survivors of brain tumours diagnosed in childhood, to provide evidence to inform the need for, and development of, new treatment and support protocols.
Neuroendocrine ‘late effects’ start with the tumour and are aggravated by treatment and failed rehabilitation. Understanding the causes of each, which treatments are most implicated, and how we might avoid them, will help oncologists and neurosurgeons tailor their therapies.
Success’s research effort is aimed at funding a deeper understanding of the (unrecognised yet treatable) neuro-endocrine consequences of brain injury after tumours and cancer related therapies.
To find out more about taking part in current research studies please click HERE.
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