Brain tumours kill more children and adults under the age of 40 than any other cancer
Taking every opportunity
This week has been about working to raise political awareness of our cause in as many ways and places as we can and of course supporting those who are doing that awareness raising on our behalf.
We start at the House of Lords where, on Monday, Lord Hunt (pictured outside the House of Lords with Monday’s order paper) posed a question on ‘Improving the scale of research into the causes and treatment of brain tumours’.
This was the second time that Lord Hunt has brought brain tumours to the agenda at the Lords – you can find out about the mini debate he instigated at the beginning of 2021 here.
On Monday it was Lord Evans of Rainow responding on behalf of the Government. He made clear that money unallocated from the 2018 Government allocation of £40 million remained available for deployment and indeed more could be found for suitable funding opportunities.
In his follow-up, or supplementary question, Lord Hunt requested that the National Institute for Health and Care Research give proper feedback to researchers who have had their project funding rejected, so that they are encouraged to resubmit their applications with more hope of success.
Lord Polak whose mother is currently in a hospice having treatment for a meningioma, and who, as a patient brings lived experience to his role on the All-Party Parliamentary Group on Brain Tumours (APPGBT) and as part of the APPGBT’s recent inquiry panel, sought assurances from the minister that bureaucracy would not be allowed to hinder the flow of this vital funding stream.
Lord Allan sought to shine a light on the need for paediatric research and in particular research into DIPG.
A telling contribution came from Baroness Blackwood who said that the answers being given by Lord Evans in 2023 were similar to ones that she would have given in 2019 in her then role of Health Minister. She wanted to know that the minister would really challenge civil servants on funding processes in an effort to “get solutions”.
This was a short but informative mini debate and signposted a brain tumour roundtable that will be held on Tuesday 16th May. It will be convened by the Tessa Jowell Brain Cancer Mission and Brain Tumour Research look forward to taking our seat at that table.
The written record of what happened in the Lords on Monday can be read here or if you prefer to watch the proceedings click here and watch from 14:48:00
In the House of Commons, the following question was asked by Dan Carden MP on 14th April:
‘To ask the Secretary of State for Health and Social Care, whether the Government plans to respond to the report by the All-Party Parliamentary Group on Brain Tumours entitled Pathway to a Cure – breaking down the barriers, published in February 2023.’
The response from Will Quince, Health Minister on April 20th was that:
“The Department of Health and Social Care welcomes the All-Party Parliamentary Group investigation and will consider the detailed recommendations, which will be worked through with the Department for Science, Innovation and Technology, as well as UK Research and Innovation and the Medical Research Council, and the National Institute for Health and Care Research (NIHR).
The NIHR welcomes funding applications for research into any aspect of human health, including brain tumours. As with other Government funders of health research, the NIHR does not allocate funding for specific disease areas. The level of research spend in a particular area, is driven by factors including scientific potential and the number and scale of successful funding applications.”
If you want to keep up to date with brain tumour oral and written questions asked at Westminster this is the page with that information.
The Chair of our APPG Derek Thomas has been active this week too with letters from him to ministers and external agencies and replies commending the APPGBT report received as well – more news on these communications in future updates.
Last week we wrote about the Wear A Hat Day debate in the Scottish Parliament, their first debate on brain tumours since 2017.
With so much happening last week we were tight for space in the update but this week we wanted to highlight the contribution to that Holyrood debate made by Foysol Choudhury MSP who called on the UK Government to “get serious about investment into brain tumour research.” In addition, in his capacity as Shadow Minister for Culture and Europe and International Development, he spoke about the importance of Horizon Europe for brain tumour research and the wider research community. He referred to the UK Government’s recently published independent review of the country’s Research and Development landscape, by Paul Nurse, in which he concluded that the Horizon Europe association was “essential”. Foysol urged “the UK Government to formalise access to Horizon Europe, the world's largest collaborative research programme,” and ended by saying, “together we’re going to find a cure for brain tumours.”
This week Brain Tumour Research held a drop in event at the Welsh Parliament to raise awareness of the disease and the need for more research amongst Members of the Senedd (MS).
The event, which took place in a side room close to the main debating chamber as MS’s took their break for lunch, was sponsored by Mike Hedges, MS for Swansea East. He said: “It’s important we do all we can to raise awareness and funds and find a cure.”
MSs were joined by Dafydd Hobbs, whose wife Charlotte died in March 2022. Charlotte had been diagnosed with a grade 3 anaplastic astrocytoma in 2010 after suffering a seizure and underwent surgery and radiotherapy but was warned that the tumour would return.
In October 2020, a scan revealed regrowth and Charlotte had another craniotomy and further radiotherapy. Whilst undergoing chemotherapy in November 2021, Charlotte raised more than £10,000 by taking part in our 100 Star Jumps a Day challenge.
Dafydd, who set up a Fundraising Group called One for the Road to continue his wife’s legacy, said: “I would not wish other families to go through what we did. We know that so much work needs to be done to change outcomes for brain tumour patients.”
Also attending Tuesday’s event at the Senedd was Dr Ben Newland, a neuroscientist from the University of Cardiff. He said: “Brain tumours devastate families. Whilst treatments for other cancers have progressed, very little improvement has been made for brain tumours. I think all of us, regardless of our political persuasion, need to tackle this problem by laying the foundation for researchers and companies to develop innovative new therapies to radically improve outcomes for patients.”
This was a successful, well attended event at which many MS’s shared their own personal brain tumour stories and we are encouraged to start planning for further engagement, this time within the chamber.
Dafydd is pictured with Sarah Murphy MS who is a member of the Senedd’s Health and Social Care Committee.
Brain Tumour Research has always been proud of our loyal and committed supporters in Northern Ireland but the current political situation there makes campaigning unusual as the government at Stormont isn’t sitting.
Within the political world though we have a great ally in Cara Hunter, a Member of the Legislative Assembly (MLA), She told us this week that “this is a cause that has personal resonance for me and although our opportunities are limited at the moment I look forward to a time when we can come together and drive forward an agenda for better funding of research into brain tumours taking place here in Northern Ireland and building on the excellent research I know already to be taking place here.
“It is an under researched area across the UK but together we can make a difference and that can’t come soon enough for people like me who have had their own brain tumour diagnosis”
Cara also met with our Member Charity Brainwaves NI last week.
You can read about the personal resonance our cause has with Cara following her own brain tumour diagnosis here
This week has seen the whole Brain Tumour Research team get together for a Team Development Day. Among all sorts of other business this was an opportunity for us to share with everyone in the charity our campaigning news and our future ambitions.
We delivered a presentation to our colleagues with the key theme being, that as well as all of us being fundraisers, all of us are campaigners too.
The whole team was delighted to welcome Professor Chris Jones from our dedicated research centre at the ICR who spoke to us about the research into DIPG being undertaken there.
It was thrilling, motivational stuff.
The motivation in our team to do the very best we can for Brain Tumour Research is so high and, as I have explained many times before, this cause is so personal for so many of us.
Many of the team were sponsored for a fire walk which took place on Wednesday evening ( pictures and videos to follow) and my colleague from our communications team, Alexa, made us all incredibly proud (and indeed a bit humbled) by completing the London Marathon last Sunday raising money for Brain Tumour Research.
She has written a blog about the whole experience and is pictured during bleak midwinter training.
Well done, Alexa!
So, whether it’s at Westminster, Holyrood, Cardiff, Belfast, firewalking in Milton Keynes, or pounding the streets of London, our team – like you, our army of supporters, activists, and campaigners, take every opportunity to raise awareness of Brain Tumour Research because people can’t support a cause unless that know it exists but once they do and become part of the call for change then momentum grows and change becomes inevitable.
That is what we want, that is what is needed, that is what we are going to achieve together.