The Hows and the Whys

7 min read

This week we look at some of the ways we campaign and, although this is always front of mind in all that we do at Brain Tumour Research, why we do what we do.

In last week's update we reported back on a meeting of the APPG on Brain Tumours - our providing of the secretariat and our support of the political stakeholders who are members of the group provides a key pillar of our campaigning activity. The meeting was addressed by Connor Emerton who was present alongside his mother Dawn to talk about his brother Shay's low grade glioma diagnosis and their battle for access to a drug called Vorasidenib which has shown early promise in treatment of this form of the disease. A further meeting on this was held this week. We asked Connor ( pictured below with Shay) for his thoughts on working with the APPGBT and he told us:

"We were so grateful to be given the opportunity to share our story and discuss our challenges with the APPGBT. This felt like an absolutely critical step in our ongoing efforts to bring new treatment options to the Low Grade Glioma community in the UK.

"With great attendance across the board, we were struck by the response of MPs and their proactivity and desire to makes things better for brain tumour patients and their families. There remains lots of uncertainty, but working closely with the APPG has really amplified our voice, and given us the best chance of being successful as we call for Vorasidenib to be made accessible in the UK. We hope raising these issues now will give real hope for the future. As a community, access to different treatment options continues to be limited – it is time for that to change."

John McDonnell MP was present at this week's virtual meeting and we remember his words during March's Brain Tumour Debate when he said of the APPGBT and our inquiry report: "We have hundreds of APPGs but this is possibly one of the most effective. As a result of its diligent commitment, we have in front of us an extremely professional report that the Government now can use as the guide and agenda for their work. I thank the APPG for all that it has done."

Our meeting this week looked at the personal issues surrounding access for Shay to Vorasidenib, the wider issues for brain tumour patients accessing new treatments and the systemic issues of the structure of getting new drugs to market in the UK. There is plenty for us to write up, report on and distil into chunks that our political stakeholders can take forward in the form of questions and letters as they support us in our mission to improve the investment in UK brain tumour research.

We are proud to announce that The Antiques Roadshow expert Theo Burrell has joined our fight to find a cure as our new Patron. She was diagnosed with a glioblastoma (GBM) in June 2022 and has undergone extensive treatment. In the face of her incurable cancer, she is determined to make a difference for others.

Theo, 37, said: “Being told you have an aggressive brain tumour is absolutely terrifying, but I want to reassure people that I’m living with cancer, not dying from it. It’s important to me now to do what I can to give hope to other people in this situation. 
“Being a Patron will allow me to campaign more officially, especially within Scotland, and it’s something I am honoured to be gifted with.” 
On Wednesday, Theo attended an event at our Centre of Excellence at Queen Mary University of London where she met scientists working at the cutting-edge of research into GBM, alongside other patients and families affected by this devastating disease. "I hope the money we and others raise will help make a difference for everyone who has a brain tumour. For people like me, a cure can’t come soon enough. I know my brain tumour will kill me; when it regrows, it will likely be the beginning of the end because there are so few treatments," she added.

As part of his Autumn Statement the Chancellor promised £750m in extra funding for UK research and development this financial year – including £250m for long-term world-class Discovery Fellowships, which will fund the work of mid-career scientists. As ever we wait to receive further detail but it is a statement of intent and should be welcomed as such. A vibrant research and life science sector is a quoted source of pride for politicians but for it to flourish the core investment must be there now and in the future.

Last week, Brain Tumour Research attended Cancer52’s Autumn Gathering. Cancer52 is an alliance of organisations, united in improving the future for everyone affected by rare and less common cancers.

Cancer52 CEO Jane Lyons announced there are now 115 charity members in the rare and less common space, adding: “We are not always top priority and we need to improve that.”

Jane was joined for a policy discussion by David Fitzgerald, NHS Director of Policy and Strategy, NHS Cancer Programme Brian Duggan, Strategic Partnership Policy Director at the ABPI, and Dr Max Brodermann, NIHR Clincal Fellow.

David explained that they had been increasing funding provided to cancer alliances. In particular, his team is looking to support projects that will help early diagnosis and treatment. He said: “Charities are far better networked with the clinical staff than we are. We’re looking for you to use those networks to drive forward better outcomes in cancer.”

Brian said that a year ago ABPI had reported a 40% reduction in clinical trials, affecting the treatment and care of patients, as well as outcomes. He said he was delighted to see the recommendations of the O'Shaughnessy Review. Recommendation 17 is particularly pertinent as it recommends: “ specific targets should be introduced for the new RDN co-ordinating centre and regional centres to expand research to multiple sites, and to increase diversity of patients recruited.”

Brian also said that the NHS workforce plan and strategy will improve the volume of clinicians and their ability to respond to clinical research. “The better the clinical research, the better the care.”

Max said that we urgently need more trials. Moreover, we need medicines that are licensed and work. We need to increase medical school places. Picking up on a theme from the autumn political conferences, Max said that not enough emphasis was placed on retention. People are leaving the profession and it takes a while to train up new recruits

Jane ended proceedings saying: “Conversation is really helpful but we need to turn it into action.”

This week, we also attended the Neurological Alliance AGM. The keynote speech was given by Lord Alf Dubs ( pictured), and updates came from Georgina Carr FRSA & Samuel Mountney. Lord Dubs spoke about his two personal connections to the Alliance. His son has MS, and that he himself was recently undergoing a Deep brain stimulation (DBS) - a surgical procedure used to treat disabling symptoms of neurological disorders. Looking ahead to an election year, he said: “The neuro sector needs do a lot of better, given that neurological conditions affect 1 in 6 people.”

Finally, we attended the Radiotherapy manifesto launched by AXREM, which compliments the recommendations of the Radiotherapy APPG’s report. Radiotherapy APPG Chair Tim Farron MP said “it will take money to bring radiotherapy in the UK in line with European standards”, but that it needs to happen. He added, “We have a shared responsibility to work together and to make a difference.” 

To finish the update we underline the whys of what we do, and at the end of a terrible week for some families we note the tragic premature deaths of Freyja Hanstein (pictured above at our University of Plymouth Research Centre in 2019)Annabel Giles (within four months of diagnosis), and Elaine Nuttall whose daughter actress Amy posted "She humbled us all with how she handled this cruel diagnosis" and has committed to raising awareness of glioblastoma - "this cruel disease."

Our vision is a cure for all types of brain tumours, our how is funding our research and influencing the national investment through lobbying for change and the why is and will always be patients and their families. It is those affected by a brain tumour who inform everything that we do - thank you all for continuing to inspire us and to push us to be the best that we can be.

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