Services for children with a brain tumour are impacted by regional and local variations in NHS provision, according to a new landmark study from the Tessa Jowell Brain Cancer Mission.
The study looked at 15 of the 17 NHS centres which treat and care for children with a brain tumour across the UK. The 15 centres provided detailed data about patient pathways, while feedback from more than 200 patients and their families was provided by The Brain Tumour Charity.
While every centre is staffed by highly committed professionals providing safe and effective core treatment in line with international standards – such as surgery, chemotherapy and radiotherapy – the study highlights variation in other areas:
- Fewer than half of NHS centres (7/15) reached a genetic diagnosis within the target timeframe of 2 – 4 weeks, creating uncertainty for patients and families, and potentially delaying treatment decisions and access to new therapies
- Turnaround times for whole genome sequencing (WGS) often exceeded the 42-day target by months, which limits clinical value. Some NHS centres submitted few samples for whole genome sequencing
- Almost all NHS centres (13/15) reported shortages of rehabilitation staff, and fewer than half (7/15) were able to offer specialist rehabilitation to patients who live far from the main hospital of the NHS centre
- A third (5/15) of NHS centres lacked specialised neuropsychology support and, across all centres, patients waited up to 1 year (19 weeks on average) for outpatient access
- Only half of patients and families (49%) reported access to a play specialist
- Only a small number of late-stage (phase III) clinical trials (3/9) were available in every NHS centre
- Only a small minority of NHS centres (3/15) were able to offer clinical trials to patients who live far from the main hospital of the NHS centre
- Education support was not uniformly embedded into care pathways
The standards used for analysis were developed by 24 leading childhood cancer experts including surgeons, doctors, nurses and other health professionals specialising in childhood cancer.
“To care for a child with a brain tumour is extraordinarily difficult,” said Dr Stephen Lowis, the consultant children’s cancer expert who led the research programme, which began in 2023, “treatment is complex, changes often, and is fraught with complications. We have found excellence in every paediatric oncology team, but some have struggled to achieve the smooth operation which matters to the patient.”
“We have found that the most successful centres have clinical teams which incorporate clinicians and managers. They are characterised by excellent communications, a dynamic approach to problem-solving and a responsive organisation,” added Lowis, “The main limitations we found were in resilience, and, in particular, unfilled gaps in teams due to absence of key members.”
Nicky Huskens, CEO of the Tessa Jowell Brain Cancer Mission, said: “For the first time, we have a detailed national picture of where care for children with a brain tumour excels and where it falls short. This study shows that, for children with a brain tumour in the UK, whereabouts in the country they live, and whether they live in a city or in a rural area, can affect their treatment and care.”
“The treatment and care of children with a brain tumour should not be impacted by their postcode,” added Huskens, “the task is now to turn the insights in this study into action, and ensure every child has access to the highest standards of treatment, care and research. Already, centres in the study are making significant, targeted improvements.”
The report was officially launched on 2nd December at an event hosted by Great Ormond Street Hospital, at which Cancer Minister Ashley Dalton spoke. Also on the 2nd, the Tessa Jowell Brain Cancer Mission launched a new Tessa Jowell Academy for Paediatrics, together with a roadmap to improve treatment and care for children with a brain tumour.
Minister Ashley Dalton MP spoke at an event marking the launch of the Towards Excellence report.
The key elements of the roadmap are:
- No child waits for diagnosis or treatment due to shortages in staffing or equipment
- Every child has access to holistic, wraparound care, such as rehabilitation, palliative care and psychological support
- Every child is offered access to a late-stage clinical trial where available, regardless of where they live
- Sustainable funding for essential services currently reliant on charity support.
- Strengthened shared care networks, ensuring children can safely receive elements of treatment closer to home.
Recommendations from the landmark report “Towards Excellence – Building a Better Future for Children with a Brain Tumour”
Brain tumours are the most common cause of death from cancer in children. Of those who are cured, many will experience severe long-term effects from both the tumour and the treatment. More than 400 children in the UK are diagnosed with brain tumours every year.
The study found striking examples of best practice in the treatment of children with a brain tumour and in quality-of-life care, together with a strong and dynamic research environment. UK centres treating children with cancer collaborate closely, noted the study, with health professionals often reaching out across the network for advice. There is a high level of standardisation in core treatment, backed up by high-quality research. A focus on enabling patients to receive care close to home has led to the introduction of robust shared care infrastructure in many parts of the UK.
Each of the NHS centres studied was given a detailed feedback report, describing at length key elements of care needed for best management of the patient. Anonymised findings have also been shared with NHS England and the Department of Health and Social Care. Six centres were designated as Tessa Jowell Centres of Excellence in April 2024, with a further four receiving the designation in December 2025. Five more are designated as Tessa Jowell Network Centres, recognising their safe and good quality treatment and pockets of excellence.
Map showing the Tessa Jowell network of centres highlighting the Centres of Excellence for Children, as of December 2025
