In 2018, when the Government announced that £40 million was available for allocation to brain tumour research applications, the route to deployment was through the National Institute for Health and Care Research (NIHR). We know that a disappointingly low amount of this £40 million has so far reached researchers.
We have meetings next week with the NIHR so we thought it would be a good time to explain a little about who they are and what they do.
Established in 2006, the NIHR is funded by the Department of Health and Social Care (DHSC). Its mission is to improve the health and wealth of the nation through research.
The NIHR is focused on translational research (translating discoveries from the laboratory to the clinic) through to clinical research and on to applied health and social care research. They were designed to complement the Medical Research Council (MRC), a long-established funder of biomedical research (early stage research).
In 2022/23, the NIHR spent £1.3 billion on research - working in partnership with the NHS, universities, local government, other research funders, patients and the public.
In discussions with the NIHR it is very apparent that they are keen to promote new funding programmes, fellowship opportunities and a generally collaborative approach to its work with charities.
There have also been some recent brain cancer related announcements involving NIHR which you may have already seen.
New treatment approved for children with brain cancer
Groundbreaking brain cancer radiotherapy trial launched
Drug derived from olive oil shows early promise for brain cancer patients
At next week's Brain Cancer Roundtable , an event spearheaded by the NIHR and the Tessa Jowell Brain Cancer Mission and hosted by the Department of Health and Social Care, Health Minister Andrew Stephenson will be announcing a range of brain cancer research initiatives.
This is all very positive from the NIHR and to be applauded however, as Brain Tumour Research takes our place at the table the full deployment of the £40 million and the removal of any barriers to that being achieved will be high on our agenda and questions about it will be asked.
As part of future updates much will be written about the General Election, and whilst there is uncertainty about the date of the United Kingdom going to the polls there is absolute certainty about the asks in our Brain Tumour Research manifesto. We would like you all to engage with your Prospective Parliamentary Candidates ( PPCs) and will be producing ideas and assets for you to do so. One thing that is ready to go now though are printed copies of the manifesto. A 'hard copy' of our manifesto is really helpful to keep our recommendations to hand and for sharing with aspiring Westminster MPs when they come knocking at your door canvassing for support.
It also provides the perfect accessory for a 'photo op' with your PPC. Email me hugh@braintumourresearch.org with your address and I'll make sure a copy of the manifesto is sent out to you post-haste.
On Tuesday we joined neurosurgeons, neuropathologists, medical oncologists, nurses, Genome Laboratory Hub scientists, funders and patient advocates at Hinxton Hall Conference Centre in Cambridge for the Brain Cancer Whole Genome Sequencing (WGS) and Clinical Trials Summit hosted by the CRUK Cambridge Centre Brain Cancer Virtual Institute. WGS for brain tumour patients is commissioned by the NHS in England. Expanding access to WGS will allow more patients to benefit from next generation of clinical trials and precision treatments. Sadly, it is estimated that only 5% of eligible patients are having their brain tumours sequenced via the NHSE. As a community, we are committed to increasing this percentage enabling all brain tumours patients to access this provision. The Summit focused on understanding the processes required and potential solutions to consenting, delivering and achieving WGS. We are looking forward to the forthcoming consensus statement on how to deliver WGS in brain cancer.
Another meeting this week was with Alex Norris MP, who has been a Shadow Health Minister - he is currently Shadow Minister (Home Office, Policing) - and looked at ways in which the key commitments from our manifesto, and the APPGBT Inquiry report recommendations could dovetail with the Labour Life Sciences Strategy. This was a meeting full of promise. as we seek to take brain cancer from being a Cinderella cancer to an exemplar of how better research funding , innovative thinking and flexibility plus long term planning can really deliver for the UK brain tumour community.
This week, Thomas met with Peter Aldous MP – a member of the APPG on Brain Tumours, a long term supporter for greater awareness for brain tumours and greater funding into research for a cure. They discussed the Conservatives’ approach to the life sciences detailed in the report on “Life Sciences Industrial Strategy”, issued in August 2017, and in its own strategy document “Life Sciences Vision” in July 2021. The Conservatives sets goals to:
- Support the growth of life science clusters around the UK
- Attract skilled workers in the sector to the UK
- Improve the UK as a venue for clinical trials
- Speed up regulatory approvals for the MHRA
These are themes discussed in the APPGBT landmark inquiry report Pathway to a Cure, in particular accelerating regulatory approvals, and looking beyond the golden triangle of the South East of England for the development of local research ecosystems.
Mr Aldous also talked about the fundraising of one his constituents Barbara Shaw, whose husband Colin died in August 2010, aged 71, just a year after being diagnosed with a glioblastoma (GBM). He will be attending her Brain Tumour Research charity ball on 7th June.
Earlier in the week Thomas, alongside Karen, our Director of Research, Policy and Innovation, met with officials in the R&D Division of Welsh Government to discuss our ambitions in Wales and to speak about opportunities for collaboration with our Welsh research community. The meeting follows a debate, last year, hosted by Senedd Member Peter Fox and titled: "Why Wales needs a strategic plan to prioritise brain tumour research." This year, we have already seen positive developments in Wales, with announcement of Wiles’ first brain tumour hub.
May is Brain Tumour Awareness Month in the US. On May 7th the National Brain Tumor Society (NBTS) encouraged their campaigners to #Head2Hill in Washington to ask Congress for critical funding for brain cancer research and clinical trials to give people and families impacted by brain tumours, more hope! Find out more about the NTBS 'My Tumour ID' Campaign.
Also from the US this week comes news from the American Brain Tumour Association that reveals primary brain and central nervous system tumours as the second most common cancer type in adolescents and young adults. Meanwhile at the University of Florida ,in a first-ever human clinical trial of four adult patients, an mRNA cancer vaccine quickly reprogrammed the immune system to attack glioblastoma.
(Picture credit: The Jockey Club and John Hoy).hu
You may remember that I have been at the races recently and Brain Tumour Research is now proud to announce that our ‘Carnival of Colour’ hat auction is now live. An exclusive collection of 15 bespoke hats made by British-based milliners is being auctioned to raise money for Brain Tumour Research.
We are proud to be partnering with The British Hat Guild and The Jockey Club for a third year to exhibit the carnival-inspired haute couture headpieces which have been designed by industry leaders including Stephen Jones OBE, Lisa Tan and Jane Taylor, whose creations have been worn by royalty and A-listers alike.
A Carnival of Colour was exhibited at the Epsom Downs Racecourse Spring Meeting and we were delighted to welcome supermodel, actress and entrepreneur Caprice Bourret to the event, where she donned “Jamboree” by Vivien Sheriff. Caprice is a Patron and long-time supporter of the charity, following her shock meningioma diagnosis, and subsequent successful surgical intervention, in 2017. She was joined by Kelsey Parker, widow of boyband The Wanted’s Tom Parker who died of a glioblastoma who wore “Pretty Polly” by Lisa Tan Millinery.
The collection will also be shown at The Betfair Derby Festival at Epsom (31st May – 1st June) where Brain Tumour Research is a charity partner.
The auction is now live until 12pm on Monday 10th June.
That is it for this week.
Wishing you all a peaceful time until next Friday when we will be back with a bumper campaigning update.
Hugh and Thomas