As MPs drift away from Westminster this week’s update reflects on a varied week for the campaigning team at Brain Tumour Research.
The All-Party Parliamentary Group on Brain Tumours held a sixth oral evidence session on Tuesday as part of its inquiry, ‘Pathway to a Cure – breaking down the barriers.’
The witnesses were from charitable funders of brain tumour research with representatives from Cancer Research UK, Children with Cancer and Brain Research UK.
Brain Tumour Research and The Brain Tumour Charity were both in attendance as inquiry panel members.
The importance of a long-term strategy, what could, or should, be expected of Government, working across the neurosciences and the role of smaller charities were under the microscope in a wide-ranging discussion managed by the expert chairmanship of Derek Thomas MP.
As with the content of all previous written and oral evidence Tuesday’s discussions will feed into the inquiry report that will be delivered early in 2023.
Glioblastoma (GBM) Awareness Week began on Monday and focuses on this most devastating of brain tumour diagnoses, exploring the critical research we are funding, explaining how you can help, and hearing from patients and families affected. In this blog our Director of Research, Policy and Innovation Dr Karen Noble asks: “What is GBM and how will we find a cure?”
On Wednesday evening and again this (Friday) morning we held online presentations about our plans to fund a new Centre of Excellence.
The presentations set out what makes a Brain Tumour Research Centre of Excellence and our vision on how we will achieve our goal of creating a sustainable network of seven Brain Tumour Research Centres of Excellence across the UK.
If you haven’t been able to join these previous two events and you can join us on Thursday 4th August from 1.30pm – 2.30pm please drop me an email to hugh@braintumourresearch.org and I’ll send back a Zoom invite.
We are really pleased to have strengthened our public affairs and policy team this week with the addition of Mancunian Thomas Brayford, who joins us with previous experience of working in policy and at Westminster. Thomas said:
"I am really excited to be taking on this new challenge at Brain Tumour Research.
“Before applying for the role, I read about the charity and the sterling work it does to accelerate UK investment in brain tumour research. I was particularly shocked by some of the statistics I found - that only 12% of brain tumour patients survive beyond five years of their diagnosis.
“The need for appropriate research funding is clear, the result of not doing so would be as stark as it is obvious. Funding is a crucial step on the pathway to improvements in the outlook for patients and their families. We have such a strong, compelling vision - to find a cure for all types of brain tumours. Together we can take our call forward and achieve the progress that has been so desperately needed.
“I can’t wait to meet many of you at Westminster events.”
Brain Tumour Research is delighted to announce it is funding Member Charity brainstrust’s Patient Research Involvement Movement (PRIME) which is focused on ensuring clinical research projects are aligned with the needs of patients.
Patient and public involvement and engagement (PPI&E) is key to attracting funding for research and PRIME has already helped to attract over £17m of investment by matching scientists and clinical researchers with brain tumour patients.
The vision of brainstrust is for everyone with a brain tumour to feel less afraid, less alone and more in control and, through PRIME, it is bringing people with direct experience of life with a brain tumour into contact with the clinical research community where they can have direct input and help shape studies and secure funding for research and clinical trials.
The Secretary of State for health was questioned by MPs yesterday (Thursday) and brain tumours were raised by Alicia Kearns (Rutland and Melton) (Con) who said:
“I want to raise the case of 10-year-old Lucas from my constituency, who has a rare form of cancer called DIPG—diffuse intrinsic pontine glioma. The only drug that would prolong his life has to come from Germany. The family have raised the funds to pay for the drug, but they are now being charged £530 per shipment in import duty. Will my right Hon. Friend please help me to lobby the Treasury for an exemption, because it should not be making money off the back of this poor boy’s lasting difficulties?”
The Secretary of State, Steve Barclay, replied:
“As my Hon. Friend recognises in her question, that is a decision for Her Majesty’s Treasury, but I am very happy to highlight with the Chancellor the case that she brings to the attention of the House.”
We were very pleased to join a meeting of the Wales Cancer Alliance and the Minister for Health and Social Services in the Welsh Government, Eluned Morgan, at the end of last week. It was an object lesson in great access, collaborative thinking and mutual respect. The minister took time to praise the outstanding brain tumour research that is currently taking place at University Hospital of Wales and Cardiff University.
Today (Friday) we are co-signatories on a letter from the One Cancer Voice (OCV) alliance that has been sent to the two final contenders in the contest to become the next leader of the Conservative Party and our Prime Minister.
The objective of the letter is to put cancer on their radar.
Specifically, the letter urges both remaining candidates to recommit to the publication of the10 -Year Cancer Plan, and to work with OCV to ensure it is:
- Fit for the future, fit for patients: This plan must set bold and stretching targets to achieve what really matters to people affected by cancer in the next decade – for example, by ensuring 78% of people are diagnosed at stage one or stage two and a 95% Faster Diagnosis Standard is met.
- Visionary and achievable: A transformative plan will harness the power of the UK’s world beating research and innovation to improve outcomes, patient experience and tackle health inequalities head on. It would publicly announce objectives, set timelines and match them with smart investment, helping to boost the economy.
- A roadmap to solve cancer staff shortages: The plan must set out targeted funding to grow the cancer workforce to meet current and future demand to tackle backlogs, make more time for patients and drive innovation. It needs robust workforce modelling for the lifetime of the plan, matched by investment for at least the lifetime of the current Spending Review.
At Brain Tumour Research we believe that a new term that brings a new Prime Minister, and new ministers also brings new optimism and new opportunities.
We don’t know yet who will fill these ministerial roles, but we do know that it won’t be a complete reset for our cause. We will still have loyal friends at Westminster; we are not starting from scratch. Instead, we’ll build on the foundation of what we have achieved so far.