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

Surveys, meetings and media - Campaigning news update

by Hugh Adams

As you will all know, accessing the £40 million promised over the following 5 years by the NIHR in 2018, has been something that is central to our 2020 campaigning agenda. At the July meeting we were informed that, at best, £6 million had been allocated in the past two years. I thought you’d be interested to see that the NIHR’s Programme Grants for Applied Research is currently participating in a highlight notice for brain tumour research applications:

There are always lots of surveys in the news but what better way than to ask people if you want to understand the situation on the ground? I’m very happy to inform you of two paediatric surveys of interest to our community. I am aware that this might not be relevant to some of you, but if it is of relevance to you please do complete both – it won’t take long and you’d really be helping the brain tumour community have their voice.

 It’s been a busy week of media and meetings. Meetings first;

  • The opening get together for Keep Up With Cancer (KUWC) in partnership with Cancer52. The purpose is to help build a return to optimal treatment and care for people with rare and less common cancers by bringing together patient groups, industry and cancer policymakers to agree what can be learned from the response to the COVID-19 pandemic and then work together to embed positive system changes. 
  • I joined a meeting of the Access to Cancer Medicines Coalition (ACMC) who are focussed on the access to medicines policy space with a focus on the NICE methods review, Brexit and the Innovative Medicines Fund.
  • Yesterday was the Monthly Cancer Charity Forum facilitated by NHS England which looked at the challenge of Covid recovery, winter resilience and the potential second surge, as well as getting referral rates back to pre-pandemic levels. As part of this last point a new NHS campaign, launched today and which we are fully supportive of, urges anyone concerned about cancer to get checked and to keep routine appointments. This was reported on our Latest News page today, Friday, and we are also encouraging you to share any experiences of your brain tumour care pathway through the pandemic – click here to find out more.

Three meetings with different agendas but, for us, the same aim; increased visibility for Brain Tumour Research and ensuring the voice of our community is heard.

I also took part in the Annual Review of our QMUL centre. Our centres and the review  process are the subjects of our e-news this week and if you aren’t receiving these then you can – all you have to do is click here and sign up.

A busy week of media work too, with appearances on BBC local radio and television although a pre-recorded piece for BBC Manchester didn’t actually go to air – when I listened in (quite early in the morning it was too!) they had replaced our story with a piece about a dancing postman!

These media opportunities to promote our cause come from the stories of our brain tumour community and are so important in raising awareness. If you have a story that you are happy to share please do get in touch.

I also shot a short video clip for the famous One Pound Warriors who are supportive of Brain Tumour Research. If you wish you can see it here.

So, it has been a busy week and I am aware of a fringe meeting at the Conservative Party Conference that took place this week, and a newly launched report from the ABPI, both focussing on clinical trials, which is, of course, an area of great interest to our community. Forgive me I haven’t had a chance to really look at the output here – I’ll report back next week if I may.

Just a reminder don’t forget to sign and share our #braintumourpetition.

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