Behind the scenes: TJBCM’s unique collaboration with NIHR to deliver progress on brain cancer

TJBCM

Published 14th May 2024

Nicky Huskens (TJBCM CEO), and Andrew Wright (TJBCM Programme and Policy Manager) reflect on the Mission’s role in the Government’s new brain tumour initiatives, announced  announced at a roundtable in Westminster today.  In this post, they reflect on the work that lead to this announcement, and discuss how patients stand to benefit.

Patients, researchers, industry leaders, funders and politicians are gathering today in Westminster for the announcement of the largest ever combined package of brain tumour initiatives. Minister of State for Health Andrew Stephenson and Professor Lucy Chappell (Chief Executive NIHR) will chair a roundtable to discuss the new investments in brain tumour research.

In 2018, following the death of Dame Tessa Jowell from a brain tumour, the Government pledged £40 million to brain tumour research. Following her diagnosis, Tessa dedicated her final campaign to improving brain tumour outcomes. Tessa Jowell Brain Cancer Mission (TBCM) was set up to support new national initiatives.

Since the Mission was founded, we have delivered multiple programmes with the help of a dedicated community of clinicians, researchers, charity and patient representatives. These include a brain tumour research therapeutics accelerator, the Tessa Jowell Centres of Excellence and a training academy for NHS staff. The NIHR has been immensely supportive of our work, with dedicated funding for the Tessa Jowell Academy, new neuro-oncology Fellows, and direct funding for the running of the TJBCM.

Several other new national initiatives are also contributing, including The Minderoo Precision Medicine Programme, the 5G trial platform and Tessa Jowell Brain MATRIX. This is in addition to the tireless work of our charity partners.

Despite encouraging progress there remains an urgent need to develop new treatment and care options for patients.  Patients need new treatment options to extend their life expectancy. Since 1971, survival for the most severe brain tumours has only increased by 10%. To find new treatments, investment into research and clinical trials is essential.  A total of £100 million was invested in pre-clinical brain tumour research in the UK from 2016-2021 by relevant grant bodies (including charities). The additional 40M pledged by the Government is therefore an extremely important addition.

We have been working with the NIHR for over a year to develop new targeted funding calls announced today. The collaboration started at TBCM’s five-year anniversary summit where attendees highlighted three areas of unmet need:

  1. Support for early-phase clinical trials
  2. Investment in quality-of-life research
  3. Support for allied health professionals (AHPs) who want to be involved in research

Other important lessons were learned through the All Party Parliamentary Group’s Pathway to a Cure report, led by Derek Thomas MP.

TJBCM worked with a dedicated NIHR and DHSC team to develop new initiatives within the remit of the NIHR that address these three priorities. We conducted in-depth interviews with researchers, clinicians and charities to test new ideas prior to today’s announcement. The new funding calls announced today are the start of a new chapter in brain tumour research.  In the announced treatment call, we have an important opportunity to unlock the potential of the cutting edge of brain tumour treatment and expand precision medicine across the UK. In the care call, for the first time ever we have a specific initiative dedicated to research into all aspects of the care of patients with brain tumours. So often overlooked, improving care for patients is vital in fulfilling Dame Tessa’s desire that people should live and die well with cancer. And with the Allied Health Professional (AHP) Fellowships, we have a first-of-its-kind programme that will provide AHPs with the skills they need to build the evidence base for rehabilitation. This is a crucial step, given the historic lack of high-quality of evidence informing how rehabilitation is done for patients with brain tumours, despite the significant physical and psychological impact of a brain tumour and its treatment on a patient.

Two key members of the Mission further explain how the UK will benefit from today’s announcement:

 Professor Richard Gilbertson, Chair, TJBCM, and CRUK Centre Director, University of Cambridge:Brain tumours remain one of the most difficult cancers to treat; but the UK is a world-leading research and healthcare ecosystem.With the transformative announcements made today, together with the hard work of our doctors, nurses, researchers and patients, we are ready to take on the challenge presented by brain tumours. Thanks to Tessa’s legacy and with the support of the Government and our charity partners we are positioned more than ever to capitalise on the unique alignment of research and the NHS to make significant advances in the treatment of these devastating diseases”

Elisa Stephenson, TJ Academy Founding Member and Specialist Physiotherapist in Neuro-Oncology at Leeds teaching hospitals: “Today’s announcements mark an important step forward in building an evidence base to support the work that all AHPs do to help patients to live well with a brain tumour and to minimise the adverse effects of treatment on their quality of life. The rehabilitation that AHPs deliver is the most important factor in helping them to regain, maintain or improve their function and independence. It is so refreshing to hear that the importance of AHP-led research is being recognised and that so many opportunities will be available to produce meaningful research centred on patient experiences and outcomes.

We are really proud of this unique collaboration and the team at the Mission will stand ready to support the timely delivery of these initiatives. We hope that through efforts like these, patients will eventually gain access to new treatments and benefit from the best wrap-around care to improve their quality of life.

 

The Tessa Jowell Brain Cancer Mission is funded by Act for Cancer, The Brain Tumour Charity, Brain Tumour Research, brainstrust, Brain Tumour Support, Cancer Research UK, Children with Cancer, Great Ormond Street Hospital Charity, The Secretary of State for Health and Social Care, acting through the National Institute for Health Research, The Minderoo Foundation and The Tessa Jowell Foundation.