This is possibly the most important campaigning update that I have sent out in all my years at Brain Tumour Research.
It contains a call to action for every one of you who campaigns alongside us to improve options and outcomes for brain tumour patients through improved research funding.
After this week’s launch of the APPG on Brain Tumours (APPGBT) inquiry report, we can now confirm that there will be a general debate on Brain Tumour Research Funding within the main chamber of the House of Commons on Thursday 9th March with MPs requested to be in the chamber by 14:00.
What a chance we have to make our voice heard. But that voice will only be heard, and then amplified, if we can get as many MPs to speak in the chamber as possible.
That is why today - as a matter of urgency - we are asking you to contact your MP.
Here is a template of what to email to your MPs today (or over the weekend?).
Remember to Cc me (hugh@braintumourresearch.org).
Subject; - Chamber debate on Brain Tumour Research Funding March 9th 14:00
Dear <Your MP’s name>
I am writing to you as a campaigner for the charity Brain Tumour Research to request your attendance and contribution at the Brain Tumour Research Funding Chamber Debate on Thursday 9th March at 14:00.
My own brain tumour story is as follows (please then explain everything you think your MP needs to know about your brain tumour journey and your passion for change. Please be as intimate as possible to really detail what you have learnt and the despair, confusion and anguish this disease can cause).
I am standing alongside the charity Brain Tumour Research who provide the secretariat for the APPG on Brain Tumours, chaired by Derek Thomas MP who has called for this debate, and request that you read the report ’Pathway to a Cure – Breaking down the Barriers’ that was launched at Westminster on Tuesday 28th February.
Could I draw your particular attention to the report’s Executive Summary and the Key Recommendations which are;
• The Government should recognise brain tumour research as a critical priority, developing a strategic plan for adequately resourcing and funding discovery, translational and clinical research by 2024, ring-fencing £110 million of current and new funding to kick-start this initiative
• Government must ensure a robust tissue collection and storage infrastructure is in place across the country
• Government must do more to build research capacity
• Government should ensure equity of access to clinical trials and that the clinical trial database is robust and up to date
• Pharmaceutical companies are choosing not to pursue the development of brain cancer drugs in the UK. The Government should simplify the regulatory process and introduce tax reliefs and incentives for investors
• Funding bodies should ring-fence specific funding for research into childhood brain tumours
Brain Tumour Research (Hugh from the charity is in Cc) can provide a briefing document and more detail if you email him directly.
Please make time to read my story, to look at the recommendations and attend the debate on the 9th March to call for change and amplify the voice of brain tumour patients and their families.
Brain Tumours kill more children and adults under the age of 40 than any other cancer, and one in three people know someone affected by a brain tumour.
We can only hope to change this by investing in discovery science and by adopting the recommendations of the ‘Pathway to a Cure’ report.
I implore you to take part and make a difference on the 9th.
Yours in hope
<Your Name>
<Your postal address and postcode>
If you don’t already have it - you can find your MP’s name and email address here:
https://members.parliament.uk/members/Commons
You will be able to watch the debate live on Parliament TV
As mentioned above it has been a landmark week in the world of brain tumour research campaigning as the All-Party Parliamentary Group on Brain Tumours (APPGBT) published its Inquiry Report calling for urgent action to help those affected by brain tumours.
Pathway to a Cure – Breaking Down the Barriers was launched at a Westminster reception on Tuesday held jointly with the Tessa Jowell Brain Cancer Mission. MPs, patients, their families and scientists have welcomed the report which calls for wide-ranging changes to be made in how research into the disease is funded.
Addressing 100 attendees at the event, George Freeman, Minister of State in the Department for Science, Innovation and Technology, highlighted his commitment to the cause. We were encouraged by his show of support of the report on Twitter.
Brain Tumour Research, in its role as secretariat to the APPGBT, has been instrumental in leading the evidence sessions which informed the findings of the report. These findings include that the current funding system has been built in silos and is unfit for purpose and that patients and families continue to be let down despite the promise of millions of pounds of investment which has not materialised.
As Derek Thomas MP said: “The sad fact is that brain tumour patients do not have the luxury of time.” In his role as chair of the APPGBT, Derek both instigated and led the inquiry. We send our sincere thanks to Derek for his passionate and tireless support of our cause.
Key recommendations of the report include the Government should recognise brain tumour research as a “critical priority” and ring-fence £110 million of current and new funding; the research funding system needs to be joined up from basic science through to clinical trials; and funding bodies should ring-fence specific funding for research into childhood brain tumours where survival rates for the most aggressive tumours have remained unchanged for decades.
The full report is published on our website, and you can read more about the findings and recommendations on our blog.
The outcomes of the report will guide our priorities over the coming months and you can help us continue to influence the Government and larger cancer charities. Please join us as a campaigner and help us continue to push forward on our mission to increase the national investment into brain tumour research.
Thank you for what you have done by contributing to the patient view that is contained in the report and thank you for what you are going to do by lobbying your MP to join the debate on the 9th March.
These are significant milestones on the pathway to a cure, as we walk together your support with this action to be taken this weekend could not be more vital.
Signing off with high hopes, a sense of expectation and, of course, excitement.
Hugh