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

The report ‘tail’, structural analysis and APPG invites

The report ‘tail’, structural analysis and APPG invites
by Hugh Adams

The #BrainTumourPetition report launch continues to have a significant ‘tail’, meaning it is still gaining traction with MPs who are supporting our cause on Twitter and offering to ask questions on our behalf. Often, we know exactly why they are doing this and can identify one of our campaigners who has influenced a political intervention by sharing their story with their elected representative.

You know who you are, well done and thank you.

Caroline Lucas the Green Party MP for Brighton Pavilion, is one of the MPs who has supported us on Twitter, on Monday she posted;

I'm supporting the #BrainTumourPetition & @braintumourrsch report calling for a Levelling Up #BrainTumourResearch Fund of £105 million & an increase in national investment to £35 million a year during this Parliament. Together we can stop the devastation of this awful disease

This tweet was liked by nearly 200 people with 44 retweeting.

On Tuesday our patron Caprice Bourret posted her support for the report on Instagram and got nearly 8,500 likes.

So, what should we make of that?

What I think is important is that it isn’t just a numbers game. It is also about who you are talking to and who they are then communicating with. A structural analysis might conclude that likes for Caprice’s posts are less likely to generate political activity than the tweet from Caroline. Ultimately, of course, they are both hugely important because they reach people we haven’t reached before and with, as we all know, brain tumours being an indiscriminate disease, it is vital we reach all sectors of society from political activists to fans of a former supermodel, because they are all as likely to have a brain tumour connection as each other. As always, the more people we reach the more people will support us in many different ways and as you’ll have heard me say before, we can’t be supported by people unless they know we exist.

Parliamentary questions have been asked recently by Carla Flockhard, Alex Sobel, Gregory Campbell, Jonathan Ashworth and  Baroness Jay of Paddington and if you would like to find out more about what has been asked and what response has been forthcoming follow this link for further information - find written questions and answers.

We are in the process of providing information for a number of other MPs for future questions and I will of course keep you looped into what is going on via these emails.

One slightly different question asked by a Parliamentary friend of ours recently concerned the cost of COVID-19 tests for patients travelling abroad for treatment.

Last week, Holly Mumby-Croft MP for Scunthorpe addressed the Secretary of State for Health, Matt Hancock, in the House of Commons.

She said: “Along with the Chair of the All-Party Parliamentary Group on Brain Tumours, my Hon. Friend the Member for St Ives (Derek Thomas), I have previously raised the issue of residents who travel abroad for medical treatment having to pay hundreds of pounds for COVID tests to travel out and to return. This is affecting my constituent, David Hopkins, and others across the country. Will the Health Secretary work with the Secretary of State for Transport urgently to find a way to allow patients such as David to use free NHS tests for medical travel purposes?”

Matt Hancock replied: “My Hon. Friend raises an important point, and I am happy to look into it. I am also pleased that the cost of the tests that are needed for travel is coming down and an important piece of work is under way to see how we can get that down further. Nevertheless, my Hon. Friend makes a strong case for her constituent.”

Holly has previously written on her Facebook page: “My view is that no one who is travelling abroad for medical treatment should have to face the additional costs of paying for a COVID test to travel and return. I will continue to push the government on this issue affecting local residents. Thank you to Team Hopkins for raising this with me and continuing to work with me on this.”

Having previously attended our All-Party Parliamentary Group on Brain Tumours (APPGBT) meetings, Holly also joined us at our virtual Westminster event held in March. At that event, David Hopkins’ wife Nicki spoke about the difficulty and cost of accessing treatment abroad for her husband who has been diagnosed with a grade 4 glioblastoma multiforme (GBM). Treatment that isn’t available on the NHS.

We look forward to engaging further with Holly to push our agenda striving to improve options and outcomes for brain tumour patients through UK-based discovery science. We thank everyone at #TeamHopkins for their campaigning support and send our very best wishes following David’s recent surgery.

The APPGBT will have their Spring meeting on Tuesday 18th May from 09:00 -10:00 and, particularly as it is the AGM, it is important that we have a good number of MPs in attendance.

Please could you all send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend. Remember to Cc me – hugh@braintumourresearch.org  

Subject; - APPG on brain tumours 18 May 09:00

Dear <Your MP’s name>

The APPG on brain tumours will be taking place via Zoom on Tuesday 18th May from 09:00 – 10:00 and will be chaired by Derek Thomas MP. An invite, agenda and briefing document from the charity Brain Tumour Research who provide the APPG’s secretariat will be forthcoming in due course and Hugh from the charity is Cc’d. As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients I am asking if you could please make space in your diary and join that meeting.

It would be hugely appreciated.

…..

<Your Name>

<Your postal address and postcode>

If you don’t already have it - you can find your MP’s name and address here.   

*STOP PRESS* – we are delighted to announce that we are now a member of the Neurological Alliance, particularly as a member of their Research Interest Group. Our aim is to influence opportunities for the neuroscience and brain tumour research communities to work more closely together in tackling the challenges that face people with brain tumours and other neurological conditions.

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