In May 2017, Dame Tessa Jowell, former Labour MP and Culture Secretary, was diagnosed with a grade 4 glioblastoma. During the final months of her life, Tessa selflessly dedicated her energy and efforts into campaigning for change for brain tumour treatment funding and research.
Tessa was particularly struck by
- Lack of treatment options available to patients
- Lack of progress in research and available treatment
- Inequality of access to treatment across the UK
Tessa was passionate about
- Patients having access to the “latest and greatest science”
- People coming together and unifying efforts to create change
On the 25th of January 2018, Tessa gave a moving and seminal speech in the House of Lords about her cancer diagnosis and treatment. She made a call for action and called for ‘greater collaboration’ and the use of ‘adaptive trials’ to give patients access to innovative treatments. She quoted Seamus Heaney and said: “Noli timere, do not be afraid” She followed by saying, “I am not afraid, but I am fearful that this new and important approach may be put in the ‘too difficult’ box.” She received a standing ovation.
In response to the speech, the then Health Secretary Jeremy Hunt tasked Lord O’Shaughnessy to help make a change in combatting brain tumours. The Tessa Jowell Brain Cancer Mission was founded during a roundtable summit hosted by Tessa and the Government on the 22nd of February 2018. In the time following the roundtable, its members have taken an honest and critical look at the challenge of brain tumours in the UK and identified opportunities to make a difference.
In June 2018, Lord O’Shaughnessy (the then Under Secretary of State for Health) appointed Professor Richard Gilbertson as Chair, with the responsibility to structure the mission and set a high-level vision. Richard put in place four strategic programmes which each focus on a different subset of the challenge of brain tumours. Our areas of focus are: care for today’s patients, boosting brain tumour research, supporting clinical trial and trial infrastructure and specialist brain tumour training for clinical and medical oncologists
On 7 November 2018, TJBCM held its first offsite for all its members. Following a summer of strategic programme meetings and in-depth research and discussions, the strategic programme leads presented a set of short, medium and long term milestones. Following “peer-review” from members at the off-site, and additional feedback collected in the following weeks, the milestones for each of the programmes were further refined and approved. The milestones will now guide the work of the mission over the next three years and will be refreshed every year.
On this day, Jess Mills (daughter of Tessa Jowell) gave a beautiful speech on the importance of bringing innovation and hope to all people in the UK. The speech can be found here.
On 22 January 2019, the mission hosted a reception in the River Room in the House of Lords to commemorate the 1-year anniversary of Tessa Jowell’s speech. At this event we were able to look back and celebrate the progress of mission:
- Celebrated the national roll out of the “pink drink”, a surgical tool that makes brain tumour more visible during surgery.
- Welcomed the launch of the Tessa Jowell BRAIN-MATRIX: a ground-breaking UK-wide trial aimed at radically increasing opportunities for brain tumour patients to try non-standard treatments. The BRAIN-MATRIX is being funded with a £2.8m investment from The Brain Tumour Charity and will be led by Professor Colin Watts
- Reported good progress on the creation of dedicated neuro-oncology fellowships, which is a one-year finishing school for oncologists to specialise in brain tumours and be trained as the next generation of world-class doctors in the UK
- Announced plans to improve the pathway of care for all neuro-oncology patients across the UK, ensuring that all patients receive the same high standard of care
- Revealed plans to attract and train bright scientists, bringing new ideas and people to further grow the brain tumour research community
- Thank the Government for their pledge of the £40m brain cancer research fund in Tessa Jowell’s honour
In July 2019 the JSB decided to add two new strategic programmes. The first one is the emerging data and technology programme, which consists of a group of experts to support the other tracks on opportunities in data and technology. The second programme is the Tessa Jowell Centre of Excellence Designation, which will be tasked with defining best practice clinical and patient care, clinical trial access, research activity and staff training opportunities. More about these programmes can be found in the Programme pages.
On the 5th of November, 2019 the JSB met at the yearly offsite to discuss progress made across the strategic programmes:
Training: The TJBCM designed a curriculum for one-year fellowship for clinical and medical oncologists together with key experts and the Royal Colleges support, established a faculty and found centres to host the Tessa Jowell Fellows.
Treatment and Trials: The Brain Tumour Charity initiated and funded the Tessa Jowell BRAIN-MATRIX and secured the participation of 10 neuro centres across the UK. The TJBCM convened clinical trials experts and wrote a paper on solutions to delays in opening clinical trials.
Brain Tumour Research: The TJBCM recruited leading experts in other fields to engage with brain tumours and hosted a sandpit with those scientists to define new collaborative research ideas
Patients: aligned on the Integrated Multidisciplinary Model of Care as preferred model of care, and fed into the NHS neurology review. Together with The Brain Tumour Charity, researched and began setting up an early diagnosis campaign.
Tessa Jowell Centres of Excellence: TJBCM Director Nicky Huskens and Programme Lead Professor Katie Bushby introduced a position paper which further conceptualised the Tessa Jowell Centres of Excellence.
In January 2020 the TJBCM held a meeting at the Academy of Medical Science to initiate the establishing of the Tessa Jowell Standards of Excellence in collaboration with key experts, setting the baseline of excellence to which all future Tessa Jowell Centres of Excellence would be held.
The TJBCM also held a further meeting attended by all partner charities to set out how to increase funding for brain tumour research and improve access to available research grants.
In June 2020, the Tessa Jowell Standards of Excellence and the designation application form were piloted with four hospitals and their feedback was incorporated to finalise the form and standards ahead of the official launch.
The standards in many cases go above and beyond existing guidelines and were aimed at both offering clinical excellence, as well as having a strong emphasis on patient quality of life. The standards and accompanying assessment process were developed in collaboration with NHS England, Department of Health and Social Care, NCRI and partner charities CRUK, The Brain Tumour Charity, Brain Tumour Research and Brain Tumour Support.
On the 26th of October 2020, the TJBCM launched the first round of application and 26 neuro-centres across the UK were formally invited to submit an application to obtain designation. The application form consisted of six sections which cover treatment, patient care, clinical trials, research, training opportunities and why the applicant centre should receive designation.
Centres were also notified that The Brain Tumour Charity would begin collecting patient feedback (from all neuro centres across the UK irrespective of their application for designation) and were invited to encourage their patient community to fill in the Improving Brain Tumour Care Surveys.
Of the 26 invited centres, 20 centres applied to be designated.
On March 2nd, after a rigorous expert-led assessment, peer-review meeting and virtual site-visit, 9 centres were awarded Tessa Jowell Centre of Excellence designation:
- University Hospitals Birmingham
- Edinburgh Centre for Neuro-oncology
- King’s Health Partners – King’s College Hospital & Guy’s and St Thomas’s Hospitals
- Leeds Teaching Hospitals NHS Trust
- Salford Royal Foundation Trust & The Christie
- Newcastle upon Tyne Hospitals NHS Foundation Trust
- Nottingham University Hospitals
- St George’s University Hospital, Royal Marsden & Royal Surrey County Hospital
- University College Hospital London NHS Foundation Trust