Does It Matter Where You Are Treated? A landmark report of NHS brain cancer services, reporting variations in care and solutions to address these
Published 28th February 2023
Published today by the Tessa Jowell Brain Cancer Mission (TJBCM), the report Does It Matter Where You Are Treated presents extensive insights collected in 2020-2022 into 28 of the 30 NHS brain cancer centres in the UK. It highlights significant geographical variation in treatment and care and sets out how to level up services. The report presents the most comprehensive dataset on NHS brain cancer services ever collected, providing the Mission with a unique strategic overview on how to drive change and innovation nationally.
The report reveals striking variation in brain cancer services across the UK, with disparities in the design, quality and extent of the treatment and care pathway. In all hospitals reviewed, treatment was delivered according to internationally recognised standards by a motivated team: however there was notable variability in access to genetic testing of tumour samples, involvement in clinical studies and the extent of nurse and allied health-led services. All of which have the potential to impact patient experience and outcomes.
As uncovered by the data, opportunities for improvement are evident in every Centre. Addressing these will be key to achieve greater equity in brain cancer care across the UK. The report also identifies and describes pockets of excellence across the centres assessed which, if widely shared and implemented, give an opportunity to elevate brain cancer care. It recognises a hard-working and dedicated workforce with a clear commitment to service development. Staff go above and beyond for their patients, addressing challenges through innovative solutions in an under-resourced and highly pressured environment.
The report makes three recommendations for the brain tumour community:
- Share examples of innovation and excellence nationally, so that more hospitals can benefit from the models and expertise developed by the best experts in the country
- Empower hospitals to address their unique issues and local challenges
- Collaborate nationally to overcome the most difficult challenges that affect all hospitals
To deliver these recommendations, the Mission has launched a dedicated online networking and education platform. The Tessa Jowell Academy offers content and networks focused on the unmet needs uncovered in the national review, designed and delivered by NHS brain tumour professionals. The platform has active membership of 850 brain tumour professionals from 29 hospitals.
Dr Nicky Huskens, TJBCM Chief Executive Officer said, “I am excited at the potential of this important body of work to empower those who are commissioning services across the UK. This review will enable a highly targeted and precise approach in enabling equity while also fostering excellence. This is the first time that a review of brain tumour services has happened at this scale. I am grateful to all the hospital staff who have participated in the review.”
It is estimated that 88,000 people are living with a brain tumour in the UK, with 12,000 new patients diagnosed each year. Brain cancer is the biggest cancer killer of children and people under 40 and is the cancer that Baroness Jowell died from in 2018. Given the unique challenges faced by brain cancer patients, understanding and addressing variations in brain cancer care and research is crucial. The data collected have already played a key role in driving brain cancer health policy and will underpin the coordinated efforts by the TJBCM, UK centres, charities and commissioning groups to address the identified variation and challenges. It is the Mission’s aim to work towards equitable and excellent care, irrespective of a patient’s postcode.
The TJBCM report will be launched at a joint event with the Brain Tumour All Party Parliamentary Group, which will be publishing its inquiry report Pathway to a Cure – Breaking Down the Barriers, on the 28th of February in Portcullis House in Westminster. The report calls for wide-ranging changes to be made to how research into brain cancer is funded. The event will be attended by Professor Peter Johnson, National Clinical Director for Cancer at NHS England, who has commended the brain tumour community for its proactive work in identifying and addressing variation in care.
Ms Jess Mills, TJBCM co-founder and daughter of Baroness Tessa Jowell said, “The data published in this report was collected from every UK brain cancer centre that applied to become a NHS Tessa Jowell Centre Excellence. Our Tessa Jowell Centres of Excellence are our national effort, harnessing the extraordinary humanity, passion and ambition of the front line clinicians and nurses we work with in every hospital in the UK who are united with the shared purpose and vision to change the course of this unspeakable disease. This report holds something completely unique in the UK – the details of the real current picture of NHS Brain Cancer Services, but most excitingly, the potential of the picture of the future, where, as my Mum dreamed, the very best and latest science will be available to all.”
The findings in this report confirm the need for the brain cancer field and NHS policymakers to leverage the huge potential to tackle challenges in services and level up the care of brain cancer patients across the UK.
 Statistics about brain tumours | The Brain Tumour Charity