Brain tumours kill more children and adults under the age of 40 than any other cancer
Pledges and Presentations
Last week’s update looked at Health Minister Will Quince's workload and the chunk of it taken up with the question of brain tumour research funding.
We mentioned his meeting with our campaigners Khuram and Yasmin (pictured right at the APPGBT report launch in February) and their MP Sarah Owen.
Khuram and Yasmin have since shared more details of this meeting, and it was clearly a positive encounter.
“The purpose of the meeting was to discuss the lack of funding for brain tumours.
“Many of you will recall that following the tragic death of MP Tessa Jowell from brain cancer, the government pledged £40 million pounds over a 5-year period commencing in 2018.Here, we are nearly 5 years on, and so far only £10 million pounds has been released for targeted research. Sarah Owen MP and I wanted to address the reason for the delay in releasing the funding and why so many proposals are being rejected.
“The exact funding criteria and decision making process are somewhat shrouded in secrecy, so it is difficult to pinpoint the exact reason for the delay in money being released for new research and trials. I took the view that the decision-making panel, even if made up of medics, may not possess the requisite skills and qualifications to properly assess brain cancer funding applications.
“Brain tumours are a particularly complex disease, hence the low survival rates and lack of treatment options. It therefore follows that when such applications are being considered by the National Institute for Health and Care Research (NIHR), they should have on the panel appropriately qualified neuro oncologists and brain surgeons.
“I am pleased to say that following our rather animated back and forth, the Minister for Health has made a number of significant pledges:
1) The Minister will order a review of previously rejected research funding bids in consultation with experts in the field of brain tumours;
2)The Department of Health and Social Care (DHSC) and National Institute for Health and Care Research (NIHR) will explore the option of having a brain tumour expert like a neuro oncologist on the panel that considers applications offering a unique lens of expertise; and
3) A review will be made of the Tessa Jowell Brain Cancer Mission working group/workshops to assist with research bids and funding to see how well these workshops are assisting with facilitating successful funding applications.
“These three pledges are a real step forward and, if implemented correctly, should lead to the more rapid release of the remaining £30 million pounds for brain tumour research and trials.”
“I want to thank our local MP for Luton North, Sarah Owen MP for her determined campaigning in Parliament on this issue. I also want to thank the Minister for Health, Will Quince , who genuinely wants more funding bids to succeed.
“Together, I believe we can create a befitting legacy for Amani by identifying the barriers to funding and implementing changes to irradiate them. Only then can we begin to see advancements in treatments in the UK.”
We welcome these three ministerial pledges.
To revisit previously rejected research funding bids makes absolute sense.
Researchers devote significant time to applying for grants, which can offer limited return on investment, and this is a deterrent to grant applications due to the low success rates. Provision of more detailed feedback for unsuccessful applicants and the review of unsuccessful applications so proposals can be developed before reapplying could lead to the revisiting of ideas that although they didn’t get past the post initially were good ideas that with slight restructuring, focus or polish could become a game changer.
The key thing about this pledge is the move toward the NIHR becoming more proactive in its stated desire to fund more brain tumour research.
The question of brain tumour specialists being on funding application panels was first floated by Professor Kathreena Kurian in this blog, authored by her, for us in 2020 and at a meeting we set up, which she attended, on 9th September 2020 and where we were joined by then Health Minister Lord O’Shaughnessy.
Lord O’Shaughnessy has just completed a review of UK clinical trials. We do know that to get to clinical trials we need to have gone through a discovery science stage (it is the first step on the translational pipeline from the scientist's bench to the patient’s bedside). Lord O’Shaughnessy is a committed brain tumour advocate who has the ear of the Government, we are pleased that as he reviews the state of UK trials, he is aware of the need to support the complete translational pipeline.
Professor Kathreena Kurian
With regard workshops, the APPG report, Pathway to a Cure suggested the development of “a continued programme of workshops and a funding toolkit for researchers, supporting navigation of the funding system and increasing success rates.”
This is outstanding campaigning work by Khuram and Yasmin, wonderfully supported by APPG on Brain Tumours (APPGBT) Officer, and their MP, Sarah Owen.
We are very pleased that Khuram and Yasmin will be joining us at the next meeting of the APPGBT where they will be joined by their daughter Amani’s neuro-oncologist and her Clinical Nurse Specialist.
We will tell the story of Amani, the options that were available to her as a UK glioblastoma patient and what those closest to her during her illness would like to have improved to make a difference for future brain tumour patients.
Into this we will weave some of the recommendations of the Pathway to a Cure report.
It will be an engaging and emotive event but hopefully ultimately one that will present a road to optimism.
We would like your MP to join us on the 11th July.
Please could you all send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend? Remember to Cc me ( email@example.com).
Subject; - APPG on Brain Tumours 11th July 17:00 – 18:00 Committee Room 6
Dear <Your MP’s name>
The APPG on Brain Tumours will be taking place in Committee Room 6 on Tuesday 11th July from 17:00 – 18:00 and will be chaired by Derek Thomas MP.
An agenda and a briefing document from the charity Brain Tumour Research who provide the APPG’s secretariat will be forthcoming in due course and Hugh from the charity is Cc’d.
As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients I am asking if you could please make space in your diary and join that meeting.
It would be hugely appreciated.
<Your postal address and postcode>
The deployment of the money made available for allocation to brain tumour researchers remains a real hot potato with our community so it was with great interest that we learnt this week that more than £35 million of the £50 million pledged to motor neurone disease (MND) research has been allocated to cutting-edge researchers, just two years into a five year funding commitment.
This investment is being made by the Department for Science, Innovation and Technology and the Department for Health and Social Care.
Here we have an example of money being allocated and deployed as well as of cross-departmental cooperation.
If it can work for MND let us make it work for brain tumours.
The Scottish Government has published its long-awaited 10-year strategy, setting out its priorities and goals for improving cancer care over the coming decade. It includes a three-year Cancer Action Plan.
The Scottish Government aims to halve the percentage of cancer cases which are detected at a late stage.
Currently 42% of cases are diagnosed at stages three or four. The goal is to reduce this to 24% by 2033.
As well as reducing late-stage diagnosis, there is a commitment to embedding research, innovation, and data capture in all services.
The strategy states that “identifying promising research and developing a pipeline that enables innovations to be brought into NHS Scotland, to help diagnose cancer earlier and faster, will ensure improvements can be rolled out and embedded at pace”.
This will be supported by the Chief Scientist’s Office and the Scottish Health and Industry Partnership Group (SHIP), including the Scottish Cancer Consortium and the Accelerated National Innovation Adoption (ANIA) Pathway, and will require coordination across multiple partners, including industry and academia.
There is also the ambition to improve access to research and clinical trials for minority ethnic people and those that are currently underrepresented in clinical trials.
The Scottish Government aims to create a flourishing research and innovation environment where health professionals have allocated research time, adequate laboratory support and are working in partnership across academia, industry and the third sector.
Efforts will focus on cancer types with the largest burden and worst outcomes.
These include less-survivable cancers such as liver, pancreas and brain cancer.
The Government promises strong public health interventions to ensure that “more cancers are prevented, and those who require diagnosis and treatment will have prompt access to quality services, all with the strategic focus of improved survival and excellent care, no matter where someone lives”.
The strategy also aims to tackle inequalities associated with cancer. In Scotland, there is currently 20% poorer uptake of cancer screening in the most deprived areas compared with the least deprived. Furthermore, cancer-related deaths are 74% higher in the most deprived population than in the least deprived.
Brain Tumour Research Policy and Public Affairs Officer, Thomas Brayford, said: “We are encouraged by the latest Scottish cancer strategy. There are parallels between this strategy and the recommendations of the recent All-Party Parliamentary Group on Brain Tumours report delivered by MPs at Westminster and led by Brain Tumour Research. We welcome, in particular, the greater emphasis on less-survivable cancers including brain tumours, and fully support the idea of a flourishing research and innovation environment in Scotland. Sustainable and continuous research is vital if we are to find a cure for brain tumours. We now need to see long-term investment to ensure the success of the strategy.”
The Health and Social Care Committee, this week, launched its Future Cancer Inquiry.
The Inquiry will explore innovative approaches and developments capable of transforming cancer care. MPs heard from: Anna Jewell, Chair, Less Survivable Cancers Taskforce, Michelle Mitchell OBE, Chief Executive Officer, Cancer Research UK, Jane Lyons, Chief Executive Officer, Cancer52 and Gemma Peters, Chief Executive Officer, Macmillan Cancer Support.
Our charity colleagues provided various recommendations to improve the UK’s future cancer scene, from more sophisticated diagnosis tools to direct community outreach.
The Galleri blood test, in particular, was highlighted as a breakthrough for the sector.
Michelle Mitchell stressed the importance of the UK remaining a leader in science and technology.
Anna Jewell talked about the benefits of early diagnosis, pointing to ongoing innovations on this front, for example the Galleri test.
Gemma Peters spoke at length about tackling inequalities. She added that cancer research has always resided at the heart of medical innovation.
Jane Lyons said that Cancer52 represented more than 100 different cancer charities, including Brain Tumour Research, and that she was encouraged that “rare and less common cancer charities were “in the room from the off.”
Paul Blomfield MP, who underwent surgery to remove a benign brain tumour in 2011, asked what can be learned from international best practices.
Gemma Peters highlighted New Zealand’s success in focusing on the impact of inequality as a source of lacklustre levels of cancer screenings.
Michelle Mitchell pointed to the United States’ “war on cancer” and its ability to coordinate research action among various agencies and departments to maximise efficiency.
Brain Tumour Research submitted written evidence to the Inquiry.
Today we’re also showing our support for Macmillan Cancer Support.
They have launched their ‘What Are We Waiting For?’ campaign highlighting inequalities in cancer delays.
Record level waits for cancer tests and treatment across the UK are leaving tens of thousands of people in poor health and experiencing worse outcomes. Please take the time to sign their petition to get things changed!
The latest edition of Believe – the news magazine for brain tumour activists – is coming soon
The Summer 2023 issue contains a bumper crop of research updates, including what the announcement of our new Centre of Excellence at The Institute of Cancer Research means to families affected by paediatric-type diffuse high-grade gliomas – a collection of brain tumours in children and young adults with an extremely poor clinical outcome.
There are six whole pages of campaigning news detailing an extraordinary period of brain tumour political activity that we led at Westminster.
Could you help spread the word about our cause? Complete our online form and tick the box to receive 100 copies of Believe to distribute in your community.
Next week’s update will be about the International Brain Tumour Alliance (IBTA) World Summit of Brain Tumour Patient Advocates in Vienna and then the following week we will be in Manchester for the British Neuro-Oncology Society (BNOS) Annual Meeting.
Both events will be a chance to meet and be with long term supporters and brain tumour research advocates.
In Manchester we will once again be co-sponsors of the BNOS Young Investigator Award.
I will be giving presentations at both events talking about our campaigning work, and I am truly proud to be doing so.
There have only been five of the IBTA summits and I am privileged to have attended all five.
I have one more very special presentation to give next week.
More about that next Friday.
We look forward to these events, bringing together as they do the brain tumour community.
Together we amplify our collective voice.
Speaking as one we are and will continue to make a difference – to see what we have done, and to have real optimism in what we can do, all you have to do is (read) Believe!