Where to begin with this week’s campaigning update?
A new Centre of Excellence, a question asked of the Prime Minister with a ministerial meeting promised, or an epic campaigning day in Scotland – and it was only last week that we had a brain tumour debate in the House of Commons … and the week before that the Science Minister launched the APPG on Brain Tumours report at Westminster.
Let’s begin with our new dedicated research Centre of Excellence.
As announced exclusively in the Express, with great comment from Hilary Benn MP, the fourth Brain Tumour Research Centre of Excellence will be at The Institute of Cancer Research, Sutton, Surrey, where the team led by Professor Chris Jones has ambitious plans to identify new treatments for high-grade glioma brain tumours – which include those previously known as brainstem glioma and diffuse intrinsic pontine glioma (DIPG) – occurring in children and young adults.
Dr Karen Noble, our Director of Research, Policy and Innovation, said: “The aim is that this work will lead to trials within the next five years so we can give real hope to families in the future. The current situation means that people, already facing the most distressing circumstances, often have no option but to search for and fund trials abroad with all the expense, upheaval and uncertainty that brings.
“It is crucial that attention is focused on this most deadly of childhood cancers. We are grateful to our loyal supporters whose commitment and hard work has made this milestone possible. But we need the Government to step up and not rely so much on investment from charities.”
Under Prof Jones’s leadership, an experienced team will lead the way in scientific research into paediatric-type diffuse high-grade glioma (PDHGG) brain tumours. PDHGG are a collection of high-grade glioma tumours which include DIPG and paediatric glioblastoma (GBM). The median survival for the vast majority of these tumours is just nine to 18 months.
Dr Noble added: “The Centre will act as an international hub for the development of new treatments for children and young adults with these terrible brain tumours. Improving outcomes for children with these types of tumour is crucial if we are to make progress and bring much-needed hope to so many.”
Prof Jones said: “We are delighted that Brain Tumour Research is backing our research into finding better treatments for children with brain cancer. These tumours are incredibly resistant to current treatments and children are in desperate need of new options.
“Our lab is working day in, day out to unravel the underlying biology of these dreadful tumours, and hopefully uncover new ways to attack them. This invaluable support from Brain Tumour Research will help to fuel new discoveries and pave the way to smarter, kinder treatments for children.”
All causes need a champion, and we could not have a greater political champion than Derek Thomas MP. He caught the Speaker’s eye during the hurly burly of Prime Minister’s question time on Wednesday and asked:
“Five years ago, £40 million of public funds were set aside for brain tumour research, but recent Government figures suggest that as little as a quarter of that money has been deployed to researchers. The mechanism to distribute research funding effectively is broken. As a result, the brain tumour community has not seen the breakthroughs in treatment and survival rates that many of us believe they should have. Does my right hon. Friend the Prime Minister agree that a unique and complex disease needs a unique response, and, in Brain Tumour Awareness Month, will he make brain cancer a critical research priority across all cancers?”
Rishi Sunak responded:
“I thank my hon. Friend for his thoughtful and powerful question. He is absolutely right about the importance of expediting medical research so that we can deliver better care for the people affected. I will make sure that he gets a meeting with the relevant Minister so we can ensure that that funding gets out to the people who need it and we can bring relief to them as quickly as we can.”
You can watch the whole exchange here.
We look forward to that ministerial meeting.
Yesterday (Thursday) we were in Scotland as members of our policy and community fundraising teams headed to Holyrood where large numbers of Members of the Scottish Parliament (MSPs), including the leaders of the Scottish Conservative, Labour and Lib Dem parties donned their hats to show their support for Brain Tumour Awareness Month and Wear A Hat Day.
Sponsored by Beatrice Wishart, MSP for Orkney and Shetland, the aim was to discuss ideas on how best MSPs could further the cause of brain tumour research and they were joined by supporters Nadia Majid, who set up a Fundraising Group called Remembering Rayhan in memory of her four-year-old son, and Suzanne Davies, who was diagnosed with a glioblastoma (GBM) in 2014.
A surprising number of attendees had personal reasons for supporting the event, including Beatrice herself whose daughter had a brain tumour diagnosis. She said: “It should be twelve months of the year that we remember brain tumours.”
We will build on the relationships started at this event to further engage and involve policy makers in Scotland and to make sure that ground-breaking research already underway in Scotland is properly supported by the Scottish Government.
There are photos of hats galore worn at the event on our Twitter page #WearAHatDay
Back at Westminster there was a budget and from it we took the main takeaway for our community to be concerning reform regulations around medicines and medical technology: where there will be a change of system in 2024 to allow near-automatic sign-offs on medicines that are already approved in other countries. The Government will set up a new approval process and with an extra £10m speed up the approval of cutting-edge medical technologies.
This looks like a spirit of speed and of innovation, a spirit we saw on the route to the Covid vaccine, a spirit that needs to be applied to the pathway to a cure for brain tumours.
At Westminster there has been a flurry of brain tumour questions aimed at the Department of Health and Social Care which are reproduced below:
Q. Lisa Nandy MP
To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the potential merits of developing a strategic plan for the (a) funding and (b) other resourcing of (i) discovery, (ii) translational and (iii) clinical research into brain tumours.
A. Helen Whately MP
The Department-funded National Institute for Health and Care Research (NIHR) invests in research, clinical expertise, specialist facilities, workforce and support services across a range of clinical areas, including brain tumour research.
NIHR has recently announced the outcome of the Biomedical Research Centre (BRC) competition in which six BRCs have been funded to support brain tumour research. The NIHR BRCs works in partnership with other research centres such as the CRUK Brain Tumour Centre of Excellence to collect samples for research purposes as well as local and national sample storage facilities to support research into brain tumours.
Q. Lisa Nandy MP
To ask the Secretary of State for Health and Social Care, whether his Department is taking steps to increase access to early phase cancer clinical trials for brain tumour patients.
A. Helen Whately MP
The Department invests in health research through the National Institute for Health and Care Research (NIHR). NIHR has recently invested over £969 million to strengthen the infrastructure supporting Phase 1 trial capacity over the next five years. This includes funding for the NIHR Biomedical Research Centres, NIHR Clinical Research Facilities and Experimental Cancer Medicine Centres.
Additionally, NIHR ‘Be Part of Research’ is an online service, now also available on the NHS App, to help people find and take part in health care research including cancer studies.
Q. Lisa Nandy MP
To ask the Secretary of State for Health and Social Care, if he will take steps to ensure that NHS funding for research into childhood brain tumour is ring-fenced.
A. Helen Whately MP
It is not usual practice to ring-fence funds for particular topics or conditions. The Department funds research through the National Institute for Health and Care Research (NIHR) and the NIHR welcomes funding applications for research into any aspect of human health, including childhood brain tumours. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.
Q. Lisa Nandy MP
To ask the Secretary of State for Health and Social Care, whether his Department is taking steps to ensure that brain tissue (a) collection and (b) storage infrastructure is adequate to support research into brain tumours.
A. Helen Whatley MP
The Department-funded National Institute for Health and Care Research (NIHR) invests in research, clinical expertise, specialist facilities, workforce and support services across a range of clinical areas, including brain tumour research.
NIHR has recently announced the outcome of the Biomedical Research Centre (BRC) competition in which six BRCs have been funded to support brain tumour research. The NIHR BRCs work in partnership with other research centres to collect samples for research purposes as well as local and national sample storage facilities to support research into brain tumours.
No specific assessment has been made as to the adequacy of the sample collection and storage infrastructure.
Q. Gregory Campbell MP
Will the 10-year cancer plan feature the distinctive approach that is required in relations to the early diagnosis of brain tumours?
A. Helen Whately MP
Cancer will be a substantial part of the major condition’s strategy. We will be looking at the major causes of ill health in the country, of which cancer is, of course, one. Part of that will involve ensuring that we are good at diagnosing cancer, because the earlier it is diagnosed, the more treatable it is, and hence the better the outcomes for people with cancer will be.
Q. Laurence Robertson MP
To ask the Secretary of State for Health and Social Care, what steps he is taking to provide cancer vaccines to patients through the NHS; and if he will make a statement.
A. Helen Whately MP
The Life Sciences Vision's Healthcare Mission on Cancer will support the development of new immunological interventions for cancer. In partnership with Genomics England, NHS England is developing plans for a Cancer Vaccine Launch Pad, which will help determine which cancer patients might be eligible for cancer vaccine trials. The Launch Pad will aim to support trials into vaccines across multiple types of cancer, with trials starting as early as autumn 2023.
The Government is also working closely with the life sciences sector to bring innovative cancer therapies to National Health Service patients. In January, a partnership was announced with BioNTech which will accelerate clinical trials of personalised mRNA therapies, like cancer vaccines.
Plenty of food for thought and for further questions, discussion and action.
We are encouraged though that again this week brain tumours are high on the agenda in Brain Tumour Awareness Month
So there we have the end of another big week.
It certainly feels like we are getting under the skin of the decision makers at Westminster and Holyrood (we are at the Welsh Government next month) and that brain tumour patients are no longer in a minority where no one knows what they are having to go through.
However, we do know that sometimes you find the responses you receive to your campaigning emails can leave you wondering if it is all worth the effort and if your MP is really listening. I know some replies look like they haven’t really read the original email and are trotting out the same story, and sometimes replies aren’t even received.
Please don’t be downhearted.
In forthcoming updates, we will outline our next campaigning steps and how you can respond to MPs who couldn’t attend the debate but expressed a willingness to support our cause.
We must be tenacious and persistent even when it is so tough and there are so many demands on our time.
Just look at the opening paragraph of this update again:
“A new centre, a question asked of the Prime Minister with a ministerial meeting promised, or an epic campaigning day in Scotland – and it was only last week that we had a brain tumour debate in the House of Commons … and the week before that the Science Minister launched the APPG on Brain Tumours report at Westminster.”
Dare to dream.
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