On Tuesday, Brain Tumour Research once again provided the secretariat for a meeting of the All-Party Parliamentary Group (APPG) on Brain Tumours, bringing together politicians from across the political spectrum, patients, and charity colleagues (see photo below).
Our first speaker was Dr Matthew Hallsworth, the Director of External Affairs & Strategic Partnerships at the National Institute for Health and Care Research (NIHR). Matt has been with the NIHR since its inception in 2006.
In 2018, £40 million was made available for allocation to research into brain tumours via the NIHR. Since 2023, £11.3 million has been deployed. Dr Hallsworth presented plans to facilitate full deployment of this money and the wider context for research funding beyond this allocation.
This was followed by a lively Q&A session, where attendees raised vital questions about accessing funding and ensuring that the soon-to-be-formed Brain Tumour Consortium delivers progress in a timely manner.
Dr Davide Danovi MD PhD is a visiting senior lecturer at King’s College London, part of the Future Leaders for Innovation Enterprise and Research (FLIER) group at the Academy of Medical Sciences and co-founder of Migration Biotherapeutics. His company develops innovative solutions for the treatment of glioblastoma with a path towards other oncological and regenerative medicine indications. Dr Danovi presented to the APPG on a post-surgical implant that acts as a ‘decoy nerve’ to redirect the cell migration that causes tumour recurrence.
The group also heard from Scott Arthur, Labour MP for Edinburgh South West, who chosen by ballot to submit a Private Members’ Bill and has decided it's focus will be providing pharmaceutical companies with incentives to develop treatments for rare cancers. Scott provided an update on the Bill which could mark an important step towards fostering collaboration between public, charity and industry sectors, and we look forward to supporting the development of this legislation.
On Tuesday, the APPG on Brain Tumours demonstrated that it continues to be an invaluable platform for fostering discussions and identifying tangible ways to improve options for patients.
MPs present at the meeting were Dame Siobhain McDonagh (our Chair), Mims Davies and Sarah Owen (both officers of the group) plus John McDonnell, Jonathan Hinder, John Slinger, Charlie Maynard, Euan Stainbank and Dr Scott Arthur, with many MPs sending over personal notes of apology for having to miss the meeting and commitment to future support of the group.
If you would like to read the briefing document circulated to MPs ahead of the meeting you can find it here.
At the end of last week, we, alongside Stephanie Kleynhans from The Brain Tumour Charity and Jake Arnold Forster from Our Brain Bank, met with Andrew Gwynne MP, Parliamentary Under-Secretary of State for Public Health and Prevention. Also at the meeting were senior representatives from the Policy Teams at DHSC, NICE and the NIHR.
From the very beginning, the Minister stressed that cancer was a disease area he took a great personal interest in. After introductions it was an opportunity for us to remind the Minister that, at the research into brain tumours Westminster Hall debate in 2016, which we provided the, Shadow Minister with information for his response, he had said: "The current level of research into brain tumours is a stain on what in general is one of the UK’s greatest strengths. It is essential that the Government makes research into brain tumours much more of a priority than it is."
We explained that in the intervening eight years there had been little progress.
Over the following half an hour, an open discussion was had with topics under the microscope, including our international position, the need for faster regulatory decisions in our area, earlier diagnosis and symptom awareness – particularly in relation to the forthcoming 10-year health plan – and the unique challenges of brain tumours, plus whole genome sequencing and the availability of data for brain tumour patients.
We came away believing we had been a part of a constructive interaction with actions to be chased up and taken forward both by us, by the Minister's team and by other agencies present.
We met another Minister this week, Parliamentary Under-Secretary of State for Sentencing, Sir Nic Dakin. Sir Nic is a constituency MP for Scunthorpe and in the picture below he is with Hugh and Fiona Thorne from Our Brain Bank. Our meeting with Sir Nic came through the tireless and tenacious work of Brain Tumour Research campaigner, fundraiser and Scunthorpe resident Nicki Hopkins. Nicki was instrumental in getting her previous MP, Holly Mumby-Croft, engaged with the APPG – Holly became an Officer of the Group. Now that Sir Nic is her new representative, Nicki has wasted no time in getting him onside too and, although as a Minister he can't be a member of the APPG, he is happy for us to consider him an ally to make our case at Westminster and to ask questions of colleagues on our behalf. Great stuff, Nicki!
Find out more about Nicki's activism and 'Winning for Did' here.
Brain Tumour Research played a full role in this year’s Scottish Cancer Conference, with our Patron Theo Burrell appearing as one of the guest speakers. The conference explored how innovation within our health systems has the potential to transform outcomes by preventing more cancers, diagnosing more at an earlier stage and providing equitable access to kinder and better treatments.
Cabinet Secretary for Health and Social Care, Neil Gray MSP, sporting a sleek moustache for Movember, told the conference that it is imperative Scottish Government continues investing in research. Mr Gray said that his key focus would be supporting commercial clinical trials and embracing the potential of artificial intelligence.
Professor Larry Kessler, Professor of Health Systems and Population Health at the University of Washington School of Public Health, spoke about moving towards a personalised approach for the early detection of cancer. He said that some cancers, including brain tumours, are still difficult to recognise through their early symptoms because they are often non-specific. Nevertheless, “We need to walk towards the challenge, not away from it,” said Professor Kessler.
The highlight of the breakout sessions – ‘From candle to lightbulb: promoting a paradigm-shifting innovation in research’ – explored some of the exciting research innovation happening in Scotland and discussed how to create an environment that encourages and incubates innovation and its challenges.
Professor Hing Leung, Director of Innovation, Engagement and Enterprise at the University of Glasgow, proposed four essential components to nurturing the innovation cycle:
- Creativity and confidence – not based on immediacy but eventual benefits. Learning from failures whilst progressing towards the eventual goal
- Capital and commercialisation – funding and infrastructure is pivotal to good quality research. New ideas, in particular, need extra support
- Career progression – ensuring that the workforce is flexible, diverse, and motivated
- Clinical evaluation – demonstrating the benefits to the consumers
The final speech of the day – the patient speech – was given by Brain Tumour Research Patron, Theo Burrell (pictured). Theo talked about learning to live with cancer and all the things that she had accomplished since her brain tumour diagnosis. These include attempting a return to work, holding a charity auction and knocking on the door of Number 10, whilst celebrating many other milestones as a mother, partner, daughter, volunteer and friend.
Her approach, she said, is best described in the lyrics of the song, What You Do With What You’ve Got by Siobhan Miller: “It's not the fights you dreamed of/But those you really fought/It's not what you’ve been given/It’s what you do with what you've got.”
This week, Evan has been leading our response to the Government consultation on the 10-year plan for the NHS in England, set to launch next spring and mentioned above. This plan will shape the Government's health policies for years to come. A key focus has been ensuring that the brain tumour community is heard, using patient feedback and insights from our researcher workshop earlier this month. Once finalised, our full report will be available on the website.
That's it for this week. We look forward to seeing many of you at the webinar on Tuesday but if not, we'll be back next Friday.
Wishing you all a peaceful week until then,
Hugh, Thomas and Evan
Published Friday 29th November 2024.