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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 and empower survivors, and their families, who are struggling with life after cure and seeks to improve holistic provision for survivors of childhood brain tumours in the healthcare and educational sectors.
Success currently offers an annual survivors conference, mentorship, daily advocacy and access to a novel tele rehabilitation platform. Future hopes are to develop a ‘one stop shop’ multidisciplinary service dedicated to brain tumour survivorship and support reintegration back into school and employment following treatment.
Annual Survivors conference
An annual Survivors' Conference gives survivors a voice; raising awareness of their unmet needs and their right to a life worth living, after cure and provides:
- a safe space for survivors and their families to meet, connect and create new networks of support
- advice, information, resources, and signposts to other support services
- inspiration, through hearing first-hand how survivors have overcome challenges to achieve life goals
“A truly inspiring event. Thank you to everyone who has contributed and shared their stories so honestly. It’s been amazing and I have learned so much. I have gained knowledge that will help me understand my son’s condition much better. ” Parent and delegate, 2020
Peer support occurs when people who share a common problem or challenge learn together and support one another. It is a unique form of support provision, since it can only be provided and received by those who share similar experiences. This is of particular importance as in general, young people are more likely to speak to friends, family members or other informal sources rather than to doctors, psychologists and psychiatrists about their problems.
There are many known benefits to peer support; including helping impacted young people feel more positive about themselves and seeing their relationships improve.
Success has created a sustainable network of peer coaches and mentors who are trained to listen, empathise, support, share experiences, strategies and resources in coping with the challenges of everyday life.
Peer mentoring can help a childhood brain tumour survivor feel supported, understood and no longer alone on their recovery path.
The aims of Success’s Peer Mentoring Programme are:
- Survivors will receive emotional and social support from another young person who has shared a common lived experience of surviving a brain tumour.
- Mentors will receive accredited training in peer mentorship to prepare them appropriately for their role.
- Ongoing support and supervision will be provided and safeguards in place to ensure the effectiveness of the programme, and the wellbeing of all participants.
In addition, Success runs a dedicated online forum for survivors of childhood brain tumours and their families. The forum, hosted by HealthUnlocked offers a safe place to access information, advice and the support of a wide network of peers who share the same challenges, fears and frustrations. It is designed for those over the age of 16 and is free and simple to join up.
Success Charity have teamed up with ReAbility Online UK to provide daily, affordable, accessible, remote but supervised, individualised neuro-therapy sessions, delivered by a novel and highly sophisticated virtual games based platform.
Following a successful pilot with ReAbility Online UK and Great Ormond Street Hospital, and in response to the logistical restrictions that Covid-19 has placed on patients accessing traditional rehabilitation treatments, a new bursary programme is being offered by Success during 2022. We aim to provide easy access to daily, individualised neuro therapy sessions, supervised every week online by a trained therapist and delivered into homes and schools.
The bursary programme will provide completely free access to patients, aged up to 19 over a 12 week period.
Therapists will support families throughout the program and undertake the initial and exit assessments with them. In addition to the daily self-practice sessions, therapists will supervise and monitor live online sessions every week, offering virtual face to face sessions to support, feedback, and enhance the children’s progress.
The ReAbility Online UK system tracks patients’ performance, while the weekly sessions are used to encourage adherence, increase intensity and verify clinical improvement.
"Being able to access daily interactive therapy conveniently through ReAbility Online has been fantastic. Shakeerah progressed through her goals quicker than the time it would have taken through traditional therapy and she had so much fun too.” Yasmeen Crowther, Mum of Shakeerah. (RO Pilot user).
The Multidisciplinary Brain Tumour Survivorship 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 is 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)
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 efforts are aimed at funding a deeper understanding of the (unrecognised yet treatable) neuro-endocrine consequences of brain injury after tumours and cancer related therapies.
How can you help?
£70,000 funds a neuropsychologist to support re-integration to school for a year
£50,000 funds a nurse advocate to navigate a return to school or employment for one year
£1000 funds a 12 week online rehabilitation programme delivered daily
£700 funds a cognitive assessment
£650 pays for face to face training for a survivor to achieve an ASDAN peer mentoring qualification
£500 sends two volunteers to a UK conference to promote success charity
£60 funds a survivor to attend our annual conference
£65 funds a face to face Occupational Therapist or Physiotherapist for an hour
£35 funds our telephone nurse helpline for an hour.