To mark their five year anniversary, The Tessa Jowell Brain Cancer Mission has published a report highlighting the variations in care across NHS brain cancer services in the UK
By Frankie Johnson
Does it matter where you’re treated?
Tessa Jowell Brain Cancer Mission (TJBCM) have published their report: ‘Does It Matter Where You Are Treated‘. The report looks into quality of care across 28 of the 30 UK brain tumour centers from 2020-2022. This in-depth data collection is the biggest of its kind across NHS brain tumour services. The data has created a comprehensive overview of what improvements need to be made in brain tumour care.
The report shows vast disparities across services and care available to patients depending on where they are treated. These differences include variations in the design, quality and overall extent of peoples brain tumour care pathways.
All hospitals deliver their treatment according to international standards by dedicated teams. However, access to treatments and services alter drastically between centers. Differing access to clinical trials, genetic testing of tumour samples, and the extent of services all have real impacts on patient experience and outcomes.
Improving brain tumour care
The report recognises the dedicated teams that are committed to developing the service for all brain tumour patients across the UK. It is clear that NHS staff go the extra mile for their patients, coming up with innovative solutions in a high pressure environment despite lack of resources.
Addressing variations in care pathways is the first step towards equitable care for all brain tumour patients in the UK. In the report, The TJBCM suggest ways all Centres can improve patient experience. Making these changes is an important step towards achieving equity throughout the UK.
The report also identifies and describes areas of excellence across the Centres. In doing so, Centres can easily share their experiences with one another. By sharing these practices, areas of excellence in care can be implemented throughout the UK.
Graham Norton, Interim CEO of The Brain Tumour Charity, said, “It is so inspiring to see the fantastic work of the Tessa Jowell Brain Cancer Mission (TJBCM) over the last five years and this report recognises some of the outstanding achievements across the centres. I think what is clear is that the Centres have worked incredibly hard to maintain high standards and that so many of the staff go above and beyond every day to ensure people diagnosed with brain tumours get the best care possible.
It is nonetheless concerning that there are some gaps emerging but I am confident that this report is the first step in ensuring they do not grow. We are incredibly proud to have contributed to these reports and the success of the Centres through our Improving Brain Tumour Care surveys, and we will continue to work hard alongside the TJBCM. Like them, we want to see these recommendations taken forward to ensure everyone diagnosed with a brain tumour can access the best care possible, regardless of where they live.”
Equitable care for brain tumour patients
Peter Johnson, Clinical Director for Cancer at NHS England speaking at the event
88,000 people in the UK are currently living with a brain tumour, with 12,000 new patients diagnosed every year. Brain tumours are the biggest cancer killer of children and adults under 40. Understanding the unique challenges and differences in brain tumour care across the UK is crucial. In doing so we can address the problems and improve the quality of live of those affected by a diagnosis. The data collected, including that from our Improving Brain Tumour Care surveys, has already played a key role in driving brain tumour health policy. The findings from this report are central to ongoing efforts to address these variations in brain tumour care.
Alongside the TJBCM, we are committed to working towards equitable and excellent care for all brain tumour patients.
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.“
Delivering the recommendations
TJBCM has launched an online networking and education platform, The Tessa Jowell Academy, to carry out these recommendations. The Academy is bringing together networks and information that focuses on the unmet needs that their report has uncovered. All content is both designed and delivered by NHS brain tumour professionals to help empower others in the sector. Currently the platform is being used by 850 brain tumour professionals across 29 hospitals.
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.
Dr Nicky Huskens, TJBCM Chief Executive Officer
Dr Nicky Huskens, CEO of TJBCM speaking at the report launch 28 February
How you can help
TJBCM suggest three ways the brain tumour community can continue to help improve care pathways:
Share your positive experiences. Sharing examples of when you receive a great quality of care means that the same services can e implemented elsewhere for others to benefit from. You can do this through our Improving Brain Tumour Care survey’s.
Empower hospitals to address their local challenges. Everywhere is different and every hospital will face different challenges and specific needs from their patients. By empowering centres to create unique care pathways that are designed specifically for their location, we can help to create equity across brain tumour care.
Collaborate to overcome the most difficult challenges that affect all hospitals. NHS services are under a lot of pressure at the moment. It is imperative that face these adversities by working together to overcome current challenges to brain tumour care.
What’s next for brain tumour care
‘Does It Matter Where You Are Treated‘ will be launched at a joint event with All-Party Parliamentary Group on Brain Tumours (APPGBT) on the 28 February where the APPGBT are also launching their inquiry report ‘Pathway to a Cure – Breaking Down the Barriers‘. The report is calling for important changes to be made to how brain tumour research is funded.
Professor Peter Johnson, National Clinical Director for Cancer at NHS England, is attending the event. He has commended the brain tumour community for its proactive work in identifying and addressing variation in care.
The disparities in care that this report highlights, confirms the need for change. Those in the NHS have the potential to leverage the care of brain tumour patients across the UK by addressing these issues together.
