Pioneering Cognitive Rehabilitation Pilot for Children After Brain Cancer Treatment at Great Ormond Street Hospital

Pioneering rehabilitation for children after brain cancer moves from gap to pilot

A new cognitive rehabilitation programme designed at Great Ormond Street Hospital is being tested with children who have completed treatment for brain tumours—targeting the neurocognitive difficulties that can persist long after surgery, chemotherapy or radiotherapy have ended. Clinicians say there are currently no tested, NHS-delivered cognitive rehabilitation programmes built specifically for this group, leaving families to navigate a patchwork of school supports and ad‑hoc therapies at a critical stage of recovery. The pilot sits within the wider framework of the NHS Long Term Plan, which commits the health service to improving outcomes and follow‑up for children and young people living with the late effects of cancer treatment.

What the pilot is testing

The trial is designed as an early test of whether a structured, NHS-deliverable intervention can be integrated into routine follow‑up care and, in time, aligned with national service specifications for paediatric neuro‑oncology.

• Focus areas: memory, attention and cognitive fatigue that commonly affect survivors’ learning and daily functioning.
• Scale: 36 children and young people enrolled.
• Age band: 7 to 17 years.
• Design goal: determine feasibility and acceptability to inform a larger UK trial and the pathway for national roll‑out.
• Funding: National Institute for Health and Care Research (NIHR) and Success Charity – Life After Cure.

Further technical detail on the intervention and outcomes is set out in the publicly available trial protocol.

What families say

One of the first participants is 11‑year‑old Sophia Chant, who lives with the late effects of a childhood brain tumour. Her mother, Nina, described the impact on day‑to‑day life and learning.

“Having the opportunity to be part of this study has been life-changing.

“It’s given us a way forward as a family. It’s helped Sophia understand her brain fatigue and problems with her memory, and her different feelings and emotions.

“It’s given us all some good techniques for how to deal with these and also apply them in different situations, such as at home and at school.

“The team was so kind and supportive, and we were able to join the sessions online and in-person, too. The study really took into consideration the whole family.

“We’re so grateful for the care Sophia has had at Gosh both during and after her brain tumour treatment.”

For policymakers and commissioners, such testimonies highlight how gaps in structured rehabilitation are currently being filled informally by families and schools, often without consistent clinical guidance.

Clinical aims in the words of the research team

Dr Charlotte Malcolm, chief investigator and principal clinical neuropsychologist, outlined what the team hopes to prove and change.

“This is the first trial of its kind to explore cognitive rehabilitation tailored for children and young people following treatment for brain tumours in the UK.

“We hope the programme will empower young people and their families with tools to better manage the cognitive challenges they face after treatment and to improve their quality of life.

“National guidelines recommend cognitive rehabilitation, yet access remains limited due to a lack of research and funding, and practical barriers.

“We hope this trial will address this gap and lead to improved post-treatment care.”

The team’s immediate objective is to generate the kind of pragmatic evidence—on uptake, adherence and measurable benefit—that can credibly inform future updates to clinical guidance and NHS commissioning decisions.

Why post‑treatment cognitive effects matter at population level

Behind each individual story is a cohort of survivors whose needs extend well beyond tumour clearance and headline survival statistics.

• Common late effects after paediatric brain tumour treatment include difficulties with sustained attention, working memory, processing speed, executive function and cognitive fatigue.
• These changes can affect school progress, independence and family wellbeing—areas not captured by tumour response metrics.
• Structured cognitive rehabilitation is intended to improve real‑world functioning and participation rather than test scores alone.
• Unaddressed, these cognitive sequelae can widen existing inequalities in education and employment outcomes for young people with serious childhood illness.

For health systems under pressure, interventions that protect long‑term educational attainment and independence are increasingly seen as part of a wider social productivity agenda, not solely as specialist add‑ons.

System capacity and policy implications

The pilot is also a live test of whether England’s and the devolved nations’ cancer and children’s services can absorb a new, structured component of follow‑up care without over‑stretching an already thin specialist workforce.

• Access to paediatric neuropsychology and structured cognitive rehabilitation remains variable between regions, reflecting workforce constraints and service fragmentation across tertiary cancer centres, community paediatrics and education support.
• Remote and hybrid delivery piloted in this study could reduce travel and widen reach to families living far from specialist centres.
• Embedding measurable, functional outcomes can help commissioners compare value across services and support stable funding where benefits are demonstrated.
• For families in Northern Ireland, care coordination typically spans tertiary centres and community services; local information on pathways and contacts is published by the Belfast Health & Social Care Trust neuro‑oncology service.

If the intervention proves feasible, it could inform future service specifications negotiated between NHS England, devolved health departments and providers, including expectations around digital delivery, workforce mix and school liaison.

How impact will be measured without adding burden

Because families are already managing intensive medical and school demands, the trial has been designed to minimise extra appointments while still generating data credible enough for regulators, funders and guideline bodies.

• Feasibility and acceptability metrics will determine whether the full programme can scale across multiple NHS centres.
• Functional outcomes—such as everyday executive skills and goal attainment—are prioritised alongside caregiver‑reported fatigue and quality‑of‑life measures.
• Safety monitoring follows standard NHS research governance for low‑risk behavioural interventions.

By pairing clinical measures with caregiver‑reported outcomes, the team aims to show not just whether the programme works in theory, but whether it translates into changes that matter in classrooms and family life.

What this could change if the pilot succeeds

Although this is an early‑phase study, its design anticipates the information needs of health leaders, educators and finance officials who decide what ultimately becomes part of routine care.

For a generation of children now surviving brain cancer in greater numbers, the question for health systems is shifting from “can we cure?” to “how well can we help them live, learn and participate afterwards?” This pilot is an early attempt to provide an evidence‑based answer.