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

A week in campaigning by Hugh Adams

by Hugh Adams

We do have a prospective date in the middle of July for our virtual APPG on brain tumours but I can’t send it our yet as there are a number of processes, I need to go through to make sure all is shipshape and all of the key attendees are available.

Derek Thomas, the Chair of the APPG on brain tumours, submitted two written questions to ministers that have been answered this week. He asked the Chancellor of the Exchequer “What steps his Department has taken to support medical research charities during the covid-19 outbreak.” You can read more about that exchange here.

He also asked the Secretary of State for Health and Social Care (DHSC), “What steps his Department is taking to ensure the level of resources allocated for research into cancers is protected during the covid-19 outbreak.” The response to Derek from Helen Whately MP (Minister of State for Care at the DHSC) was adequate stating that  the Department’s National Institute for Health Research (NIHR) has developed a ‘Framework for Restart’ which provides a structure to guide the restarting of a full range of NIHR research, including cancer research,  and directed us to this link.

I know it can appear that ministers are just playing these questions back with the straight bat of core messaging but these are just the opening exchanges. These responses generate more comment, scrutiny and questioning and that is exactly what we will undertake on behalf of the brain tumour community.

In the meantime, and because we are adding so many folks to our campaigning database at the moment, can I remind you that if you have a brain tumour story to tell then we would like to help you share it. As I say all the time people can’t support us, or donate to us, or campaign with us if they don’t know we exist and that is where your stories of hope and despair, fortitude and frustration, can really make a difference. If you are happy to share, you can share with confidence and in a sense of collaboration – we are in this together. Email hugh@braintumourresearch.org

One thing that is good to go now is the Cancer 52 patient survey – we have been a part of Cancer 52 for many years. Did you know that 55% of UK cancer deaths are from rare and less common cancers? Despite this, these cancers remain severely under represented and under-funded across all areas, including policy, services and research. Cancer 52 is an alliance of nearly 100 organisations working to address this inequality and improve outcomes for patients with these highly challenging diseases. They are conducting a survey of people with rare and less common cancers and their experiences during the coronavirus crisis. Should you wish to take part you can access the survey here – deadline for completion is Monday 29th June.

Another of our partners is the Association of Medical Research charities (AMRC) and they are launching a Life Sciences-Charity Partnership Fund proposal next week. They are asking Government to commit to providing funding of at least £310 million in the financial year 2020/21 to bridge the sector’s projected research spend gap. The proposal sets out a co-investment scheme that provides a level of match funding from Government for future charity research over the next three years. More on this next week.

Something else which will be in your newspapers early next week will be Cancer Research UK (CRUK) and what their public affairs response to Covid-19 is – we are at that campaigning table both as Brain Tumour Research and also as members of the coalition of all cancer APPGs, so rest assured we are always making the case for brain tumour patients and the need for increased research funding. Keep an eye on our Latest News pages every day for the most current public affairs updates.

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