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

Campaigning platforms, everyone wants their say and brain tumour research leads NCRI Showcase - Campaigning news update

by Hugh Adams

Over the past five weeks I have mentioned the APPG on brain tumours in every update, saying how important it is and how we need you to invite your MP – many of you have, and I am really looking forward to engaging with new Parliamentarians attending for the first time on the 10th, thank you all.

This week I thought I would look at other methods of political engagement though.

It is a list, or glossary if you prefer, but I hope it is of interest. These platforms can be used by Brain Tumour Research, acting on behalf of the brain tumour community, so please do work with us to make the most of these democratic opportunities.

The main campaigning platforms at our disposal are;

  • E-Petition - A petition is a formal written request sent into Parliament by members of the public calling for some form of action by the Government. E-petitions can be submitted directly online by the public. Our history with these is well documented and if you are new to Brain Tumour Research and our campaigning please click here to find out more about the Realf e-petition, the 120,000 signatures, the resultant reports from the Petitions Committee and the Department of Health & Social Care and the 2018 funding announcement
  • Adjournment Debates - Adjournment debates are held on the motion 'that the House (or sitting) do now adjourn'. The term refers to the short, half-hour debate that takes place at the end of each day's sitting in the House of Commons.
  • Early Day Motions - Early Day Motions (EDMs) are used by MPs in the Commons to draw the attention of the House to a particular issue, event or campaign. Other MPs may show their support for an EDM by adding their own signature to it.
  • Oral question to PM - or to Ministers - An Oral Question is a parliamentary question that is put to a government minister in person by an MP or member of the House of Lords in the Chamber of each House. Oral question times to ministers normally take place at the beginning of each sitting day in both Houses on Mondays to Thursdays.
  • Written Questions - Written questions are parliamentary questions that are put to government ministers in writing by MPs or Members of the Lords and that receive a written answer. These questions and answers are published online in the Written Questions and Answers database. You can see a recent Q & A on brain tumour research funding tabled by Hilary Benn MP here
  • Working with the House of Lords - The House of Lords is the second chamber of UK Parliament. It plays a crucial role in examining bills, questioning government action and investigating public policy. We feel that Peers are a rich seam that we aren’t exploring enough. One of our most active campaigners has engaged with a number of Peers over the past few weeks and they have been engaged and willing to help.
  • Devolved Governments - Devolution is the decentralisation of governmental power. Examples of devolution are the powers granted to the Scottish Parliament, the National Assembly for Wales and the Northern Ireland Assembly. Health is a devolved issue and as we have seen during the pandemic the devolved Governments are pursuing their own strategies in response – although admittedly the differences are occasionally slight.

Now, of course, we could also stand outside Westminster and shout and wave placards too, and we have done that before but, and I think this really is a sign of how far we have come in the decade we have been campaigning as Brain Tumour Research, we no longer shout outside – we talk inside.

As ever your thoughts and feedback on how to make the most of these opportunities to push forward with the brain tumour research agenda would be gratefully received.

If there were a peak period for campaigning, report writing and survey taking it would appear to be now – it seems everyone is getting their two-penneth in at the moment and this could be ahead of the  2020 Comprehensive Spending Review (CSR), or to get noticed by the Cancer Recovery Taskforce, or to make some noise during this time of uncertainty and unfortunately jeopardy.

We do work hard to maintain our visibility and make sure our voice is heard and we are fully behind, and feed into as and when able and appropriate, reports such as these released this week.

Macmillan’s ‘ The Forgotten ‘C’? The impact of Covid-19 on cancer care’ and the AMRC’s report warning that the pandemic threatens the future of research as early-career scientists look to leave

Important stuff!

Two things that, to end the week, that are causes for optimism;

This week we convened a closed meeting with the Chair of the APPG to talk with representatives from the world of pharmaceuticals, science and medical law to explore a pathway to UK based clinical trials for brain tumour patients. It’s early days and these were exploratory discussions but collaborative work with interested stakeholders from all positions has to be with the way forward.

Finally, the piece of research leading the promotion for this year’s National Cancer Research Institute (NCRI) Showcase, a virtual replacement for the usual conference, is brain tumour related with a co-author being funded by Brain Tumour Research.  It looks at how artificial intelligence can help to improve prognosis and treatment for glioblastoma.

We asked report co-author Consultant Clinical Oncologist, specialising in neuro-oncology at Imperial College Healthcare NHS Trust, Dr Matt Williams to comment on this research and he told us:

“We are really pleased that the NCRI has chosen to highlight our work. The underlying idea is relatively simple, but this is the first time that anyone has used deep learning to look at muscle bulk in brain tumour patients.

“This approach lets us use images that are acquired as part of routine care, and uses a computer to process them. Once trained, it takes less than 10 seconds to process a scan.

“From a clinical perspective, we know that patients with this type of tumour generally have poor survival rates however some people obviously survive longer than others and the really important question is why? Our work uses a computer to assess patient-related factors (rather than tumour-based ones) to help us better understand prognosis in this group of patients.

“The next steps are to extend and refine this work. We want to test it in a wider group of patients, and also make it easier to use and more automated. We can then look at incorporating measures of muscle mass into clinical work, and ultimately understanding how that information can improve patient outcomes. It builds on research support and infrastructure provided by Brain Tumour Research, and is part of our wider program applying AI techniques to brain tumours.”

We are a proud member of the NCRI and the full press release with more details about this research is  on the NCRI website can be accessed here.

Research, campaigning, fundraising they go hand in hand - they aren’t independent at Brain Tumour Research, they are interdependent and, however you are supporting us, you are feeding into the bigger picture.

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