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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

In last week’s blog, I mentioned that Parliament was returning to physical voting, this week we have heard that the Parliamentary summer recess will be cut short to allow for a longer sitting period through July. Keeping Parliament open for longer gives brain tumour research campaigners an opportunity to keep engaging with parliamentarians but the current guidance remains to “avoid holding face to face APPG meetings on the estate (Westminster), even if some members participate remotely.” Although we held a Zoom meeting with our APPG Chair Derek Thomas on Friday we did not agree the date for a virtual APPG – we are talking with him again next week so hopefully, we will have a day for next week’s blog.

The Association of Medical Research Charities (AMRC) has launched a social media campaign to highlight the jeopardy facing UK research funding charities due to the pandemic. Brain Tumour Research is proud to be part of the AMRC, a coalition of 140 UK research funding charities, and we are fully supportive of the campaign. Infographics using new figures show that medical research charity sector is projecting an average 41% decrease in their medical research spend over the next year, leaving a £310 million shortfall. It will take approximately 4.5 years for this spend to return to normal levels. This is time we simply cannot afford to lose. We have drawn attention to the current precarious position before and agree with the campaign when it shouts that #ResearchAtRisk. There is more about the campaign on the AMRC website here.

I have read news items coming out of the NHS this week with interest, specifically those about NHS England accelerating the launch of a new type of radiotherapy - Stereotactic ablative radiotherapy (SABR) – and that cancer patients will receive chemotherapy on buses under an NHS plan to boost treatment during the pandemic. SABR and ‘chemo buses’ are great initiatives and innovations and show what the NHS can deliver when under pressure. As a brain tumour campaigner, I feel it is vital that our activists impress on our elected representatives the sense of urgency our community feels, exacerbated by poor research funding levels, lack of clinical interventions, a poor prognosis unchanged for a generation and the economic and social impact that are unique to the devastation brain tumours cause. If there is going to be a good thing to come out of the pandemic it could be that in the health space, we can now do things differently, and faster than we did before – the old rules won’t apply in the new normal.

We published a blog on the impact of COVID-19 on clinical trials this week and it is definitely worth a read.

Our campaigners are a tenacious bunch, constantly chasing their MPs to support the cause and ask questions about brain tumour research funding in the House. Just through pressure of workload MPs can appear evasive but what do you do when they come immediately back to your email and reply “Fine, what do you want me to ask?” That is what happened to one of our activists this week and provides a great opportunity and one not to be missed. My advice is email or call me immediately, I will prioritise supporting you and we can get questions written and sent over very quickly.

Talking of MP’s, the more who know about us, the more supportive members we will have. I had a chance to do some database work this week and currently of the 650 constituencies in the UK we have campaigners in over 300 of them. So that means around half of our MP’s aren’t being lobbied by Brain Tumour Research campaigners to make a difference for those diagnosed with this devastating disease.

Still so much to do!

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