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Brain tumours kill more children and adults under the age of 40 than any other cancer

A busy start to our awareness month with more to come! Campaigning update

by Hugh Adams

So here we are in #BrainTumourAwarenessMonth and as you know my oft-repeated mantra is that people cannot support a cause if they don’t know it exists, and that is what campaigning is all about.

We began on Monday at 11:00 with a moving minute’s silence, a moment to reflect and to show our respect for all those lost to brain tumours. Thank you to those of you who joined the team for our virtual minute. You can see what happened at our centres on this Facebook page

I’ve written a lot in these updates about the culture at Brain Tumour Research, about how personal it is to all of us, our volunteers, our office staff, our Chief Exec. This week a new member of the team joined us in the vital role of Director of Fundraising – is the cause personal to Jason? Yes, it truly is as his father Andrew died in June 2019 at the age of 73, and 30 years earlier, Patrick, Jason’s only sibling, was just 17 when he passed away. Both were lost to glioblastoma. Read more about Jason here

It was APPG time again on Tuesday and among Parliamentarians joining Chair Derek Thomas were Hilary Benn, Stephen Timms, Greg Smith, all of whom are previous attendees, and newcomer Holly Mumby-Croft, all introduced by you, our campaigners who are constituents of theirs, as well as Lord Carlile and Baroness Masham

The APPG’s business this time was that at the meeting the Tessa Jowell Brain Cancer Mission announced the recognition of nine NHS hospital brain tumour centres as the first Tessa Jowell Centres of Excellence for patient care.

We are very pleased to welcome this important initiative which perfectly complements the work that we are doing to fund and campaign for increased investment in the basic scientific research which is so vital if we are to improve outcomes for patients and, ultimately, find a cure for brain tumours.

The Association of Medical Research Charities (AMRC) is a membership organisation of the leading medical and health research charities in the UK. Brain Tumour Research are proud to be a member of the AMRC and they speak for all of us when they voice concerns about #researchatrisk. Here is the AMRC's response to the Government's Budget 2021.

This week Hilary Benn wrote to ask the Secretary of State for Work and Pensions, asking “what assessment she has made of the merits of repeated DWP assessments where an individual applicant has had (a) a brain tumour or (b) a severe head injury when there is no evidence that the person’s condition will improve.” Thank you, RB for your role in this.

A response is due to Mr Benn’s question next week so I should be able to update next Friday.

The government has recently responded to a written question that Dr Lisa Cameron MP (SNP) submitted on our behalf.

Dr Cameron “asked the Secretary of State for Health and Social Care, what assessment he has made of the effectiveness of NIHR processes in progressing research into brain tumours; and if he will make a statement.” Thanks to SK for helping with this one.

Health Minister Edward Argar responded;

The National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including brain tumours. As with other Government funders of health research, the NIHR does not allocate funding for specific disease areas. The level of research spend in a particular area, is driven by factors including scientific potential and the number and scale of successful funding applications.

In May 2018 the Government announced £40 million over five years for brain tumour research as part of the Tessa Jowell Brain Cancer Mission through the NIHR. The NIHR released a public announcement to the research community in April 2018, making clear our desire to receive brain tumour research funding applications. We are relying on researchers to submit high-quality research proposals in this very difficult area.

We hear this message time and time again. However, the issue here is that there is not enough funding for discovery science (the type that we fund) which will lead to evidence-based proposals which are designated high-quality. What’s more, this statement doesn’t really answer the question: “what assessment he has made of the effectiveness of NIHR processes in progressing research into brain tumours.”  With less than 25% of the money made available in 2018 allocated to brain tumour research three years later, we are concerned that this process isn’t effective. If you are “relying on researchers” then what needs to be done to assist them, what needs to change, what flexibility needs to be shown, if we are to progress in this “very difficult area”? The passivity this reply shows isn’t going to move the dial anytime soon and we don’t have the luxury of waiting. We are as you know leading the agenda on this, working with the Tessa Jowell Brain Cancer Mission to move the dial.

We will also be moving the increase in the national spend agenda along with the report we are producing in the wake of the 100,000 signatures we received for our #braintumourpetition. Watch this space!

Forthcoming events in March include a meeting with a prominent MP and one of our lead scientists this afternoon and then on March 16th from 19:30- 20:30 there is our virtual Westminster event where we will be joined by Derek Thomas MP plus one of our long-term celebrity ambassadors.

A meeting should end with actions and I think I’ll end this update with a couple of actions for all of you:

1) Let me know if you’d like to join our virtual Westminster event

2) Send an email to your MP asking them if they’d like to join us at this event too – I know some of you prefer me to send out a template for this email and for those of you who have already requested this sorry for the delay, but it will be with you very soon.

So, this #BraintumourAwareness Month let’s all raise awareness with people who might not know about our campaign – that is what campaigners do.

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