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

BTAM, meetings, letters and GoFundMe-Campaigning update

BTAM, meetings, letters and GoFundMe-Campaigning update
by Hugh Adams

The weekly number of new signups to receive my campaigning updates is really rising quickly at the moment – thank you and welcome - still not signed up? Email hugh@braintumourresearch.org

Those of you who are ‘newbies’ to Brain Tumour Research won’t know what those of you who have been supporting us for years will know, and that is that every year on March 1st, the first day of Brain Tumour Awareness Month (BTAM) we hold a minute’s silence to remember those lost to brain tumours.

This is observed at our research centres, and at our head office in Milton Keynes, and this year it will be observed by our team members virtually.

Would you like to join us?

It will be a 30-minute Zoom meeting from 10:45 – 11:15 on Monday 1st March and will be a chance for us all to reflect on why we support the vision and mission of Brain Tumour Research and to honour and cherish the memory of those so special to us.

Email me if you would like to kick off BTAM 2021 by joining us.

A busy week of meetings this week, with two separate meetings with MPs, one with a constituent present and one without.

I really value meeting MPs with a constituent/campaigner there to tell their story and I know it gives great resonance and integrity to our campaigning asks – we have another one coming up shortly and I am really grateful for all of you who help us raise awareness in this way.

If you’d like me to contact your MP and see if we can set something up please give me a shout.

We will be getting in touch with MPs shortly anyway, as there will be a meeting of the APPG on brain tumours on Tuesday 2nd March from 09:00 -10:00 – more information including the agenda and a briefing document will be available soon but, in the meantime, don’t worry about contacting your MPs just yet.

Meetings are of course one way to keep in touch, and letters are another.

Westminster can seem a bit obsessed with sending letters but they are an official record of a communication and even if a response is a long time coming, they do eventually come, and this week the DVLA were in touch following a chain of letters that originated from the APPG meeting in November.

I know there are things relating to driving licences that are a uniquely problematic area for brain tumour patients and this latest connection is another step that we are taking in hoping to assist the DVLA to be the best that they can be when it comes to brain tumour patients.

This week another MP wrote to Government on our behalf “To ask the Secretary of State for Health and Social Care, what assessments have been made as to the effectiveness of the processes used by the NIHR in progressing research into brain tumours; and if he will make a statement”

We look forward to the response which won’t be an end to the questioning but a beginning of the conversation.

Our campaigners have already been told about the £40 million that was made available for brain tumour research funding in 2018 and was to be allocated through the NIHR over the following five years.

We have no need to be told again – we now know that nearly three years later less than 25% has been allocated.

The question now is what needs to happen for “the effectiveness of the processes used by the NIHR” to actually get the money where it needs to get to and deliver real impact? It is this that we are focusing our campaigning on.

In other campaigning news and in case you missed it on our Latest News page, new data from the Less Survivable Cancers Taskforce (LSCT) – which Brain Tumour Research supports – shows that symptoms awareness is dangerously low and COVID-19 has exacerbated an already critical situation - catch up here.

Also, we were approached by BBC South this week to comment on the story of a man and his family raising funds for his brain tumour treatment in Germany and of course, as always, I was happy to represent the charity in this respect.

We understand that people will seek new treatments when options provided by the NHS have run out and that these treatments need extensive funding, usually by engaging friends, family and the kindness of strangers on platforms such as Go Fund Me.

Yes, we do understand why this happens but it isn’t the long-term solution.

We need to have these options in the UK so patients don’t need to travel to access, and self-finance, their treatments.

The discovery research needs to be here, we believe the expertise already is, with adequate funding that begins the pipeline that leads to the desperately needed clinical trials.

This brings us, of course, to the  #braintumourpetition – we have added 10,000 signatures this week - we can do this, we will reach 100,000 by the end of February with your support!

What an achievement that will be and something to reflect on during BTAM.

When it comes to my reflection during our minute’s silence at the beginning of BTAM the name of Aria Nikjooy will be in my mind – RIP Aria.

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