Children with brain tumours face uneven NHS care, says report

A report has found that children with brain tumours face “uneven” NHS care, depending on where they live.

Louise Fox, from Barton-le-Clay, Bedfordshire, whose son George died from a glioblastoma in 2022 aged 13, said it was “heartbreakingly clear” that where a child lived could affect the treatment they received.

A review of the UK’s paediatric neuro-oncology system by the Tessa Jowell Brain Cancer Mission has identified gaps in the care children with brain tumours may face.

Its report has highlighted concerns about testing, before and after-school care, and a lack of access to clinical trials in some parts of the country.

It also raised concerns over delays in genetic testing and whole genome sequences.

Some centres have shortages of rehabilitation staff and inconsistent access to specialist care for children living far from hospitals.

The report noted that only half of patients had access to a play specialist, and educational support was uneven.

The authors of the report said: “There are notable disparities in access to clinical trial opportunities… a particular challenge is ensuring patients who live far from large academic centres can still participate in new research.”

George’s mother described her son as “a bright, kind and caring boy who dreamed of becoming an architect and loved Lego, Arsenal and golden retrievers”.

She said: “We really feel strongly that no matter where you live, you should get the same amazing care.

“You should know exactly what to expect and you should get the same hope and opportunities wherever you are in the UK.”

Tessa Jowell Brain Cancer Mission is named after Dame Tessa, a former Labour cabinet minister who died from a brain tumour in 2018.

On Tuesday, a group of mothers walked from Westminster to Great Ormond Street Hospital in memory of their children and to raise money for the charity.

Nicky Huskens, the mission’s chief executive, said: “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.”

She added that centres included in the study were making “significant, targeted improvements”.

The organisation has created a “road map” to improve treatment and care for children with brain tumours, which includes recommendations from the report.