The words behind these two stunning images are the stories of Melanie and Eddie.
Below are just over one thousand words on our campaigning activities to improve the lives of all of those diagnosed with and affected by brain tumours.
It must be a bit of a mixed blessing when your constituency MP is also the Prime Minister.
The tenacity of one of our campaigners living in Richmond (Yorks), though, means they received a letter from Rishi Sunak explaining that he wasn’t going to be able to attend the meeting of the APPG on Brain Tumours (APPGBT) on 14th November but that he is supportive of our cause.
The snippet above is from that letter.
We think the PM has made a mistake because as we reported in June the NCRI is to wind down.
We think that the PM must have meant the NIHR but there are so many acronyms in the campaigning world!
Speaking of the APPGBT one of its loyal members Ben Lake Plaid Cymru MP for Ceredigion wrote to the Secretary of State for Health and Social Care asking how much funding his Department has allocated to research into treatment of diffuse intrinsic pontine glioma in children in each of the past 10 years.
In response Health Minister Will Quince wrote:
“As with other Government funders of health research, the National Institute for Health and Care Research (NIHR) does not allocate funding for specific disease areas. The level of research spend in a particular area is driven by different factors, including scientific potential and the number and scale of successful funding applications. The NIHR welcomes funding applications for research into any aspect of human health, including diffuse intrinsic pontine glioma (DIPG).
“Since 2013, the NIHR has supported delivery in the health and care system for eight DIPG research studies, funded by research funding partners in the charity and public sectors. NIHR provides infrastructure support to studies taking place in the National Health Service. For example, staff, research nurses, local networks and NHS trusts will work across many studies, to varying degrees. As a result, NIHR cannot provide precise information on expenditure.
“In May 2018 the government announced £40 million for brain tumour research as part of the Tessa Jowell Brain Cancer Mission. The Government is committed to funding high-quality brain cancer research. The £40 million funding remains available.”
Another member of the APPGBT and a contributor to March’s brain tumour debate John O’Donnell asked the Secretary of State for Health and Social Care, this week: “with reference to the APPG on Brain Tumours' report entitled Pathway to A Cure, whether his Department plans to implement a joint strategy for brain tumour research with the Department for Science, Innovation and Technology; and if he will make a statement.”
On Wednesday Will Quince replied:
“The Department welcomes the All-Party Parliamentary Group report, recommendations of which continue to be worked through with the Department of Science, Innovation and Technology, UK Research and Innovation and the Medical Research Council (MRC), and with the National Institute for Health and Care Research (NIHR).
“The report recommended action by the research funding agencies on coordinating activities and making funding available. We are taking steps to ensure that funders work closely together to coordinate work along the translational pathway, from the discovery and early translational science typically supported by the MRC, feeding through to the applied health and care research funded by the NIHR.
“It is not usual practice to ring-fence funds for particular topics or conditions. 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.”
So, the Prime Minister and a Health Minister will ‘carefully consider’ the report recommendations ‘which will continue to be worked through.’
This is good to hear because the words of John McDonnell at the brain tumour research debate resonated very strongly with us when he said; “When we explain to people in our constituencies that this is the biggest killer among the under-40s, they begin to wake up and ask why it is happening. Well, I do not want to be here in a year’s time for another debate like this, and another report from the APPG, and to hear that it is still happening because the current report has not been implemented in full.”
For Thomas this week began with our monthly Northern Ireland Cancer Site Charity Group Meeting where the key drivers for building a coalition in Northern Ireland over the next year were discussed.
With our charity partners, we want to continue to develop a network, which will work together to provide a stronger, amplified voice for the sector and ensure the full implementation of the cancer strategy.
On Tuesday, we attended Pfizer’s parliamentary event which focused on overcoming inequalities in cancer care.
At the event, they displayed a heatmap that showed the percentage of patients who received cancer treatment within 62 days of a referral from either a GP, consultant, or screening programme in each Integrated Care System area between July 2022 and June 2023.
The target from NHS England specifies that 85% should be treated within this timeframe.
Stefano Podesta, Oncology Lead at Pfizer UK, said: “At the moment there are no regions, no ICSs, that are able to commit to this target” and that we needed “to come together to think about these inequalities.”
Mr Podesta also cited recent work by Cancer Research UK (CRUK) which states that deprivation causes an extra 33,000 UK cancer cases each year.
CRUK believes that these could be avoided if health inequalities were tackled. 
Thomas at the Pfizer event
On Wednesday, we attended a parliamentary reception for Precision Health Technologies Accelerator (PHTA).
This is the University of Birmingham’s flagship facility dedicated to translational health research, which will soon be based at Birmingham Health Innovation Campus (BHIC).
The campus is the Midlands’ only science park dedicated to life sciences research and is delivered in partnership between the University and Bruntwood SciTech.
Gino Martini, CEO of Precision Health Technologies Accelerator, said that the United Kingdom has a number of specialised research universities, as well as state-of-the-art clinical infrastructure but environments where people can collaborate and innovate remain limited.
Professor Mike Lewis - Director of the Small Business Research Initiative (SBRI) – said that the life sciences are full of small to medium sized enterprises (SMEs), that add value and a purpose.
Professor Mike Lewis
He also stated that the life science industry is currently “heavily weighted to the southeast” and that this needed to change. The vision should be “to move research to where the need is not necessarily where the people are.”
Councillor Sharon Thompson, Deputy Leader of Birmingham Council, said that this life science development was a positive step forward for the West Midlands and that she hopes it will result in young Midlanders saying they want to choose a profession within the life science industry.
In conversation with us Ms Thompson also spoke about her father’s brain tumour experience. She looks forwards to helping the charity raise awareness of the devastating disease in the coming months.
Brain Tumour Research welcomes more research outside the 'golden triangle' – the life sciences cluster of London, Oxford, Cambridge and England's greater southeast.
Looking beyond the ‘golden triangle” will broaden trial access to reach a larger number and potentially a more diverse pool of patients.
Having gone through the past weeks of party conferences we have distilled the key outputs, stated plans and ambitions which are directly relevant to our disease area, and they are:
Lib Dems
Pass a Cancer Survival Research Act, requiring the government to coordinate and ensure funding for research into the cancers with the lowest survival rates, including brain, lung, liver and pancreatic cancer.
Conservative
An extra £8m for AI scholarships in the UK and a £60m regional innovation fund where the impact would be felt “immediately”.
Labour
A strong life sciences vein placing “patients benefitting from the brightest minds” and scientific advances around issues such as genomics to return the NHS to its world leading status.
There is still much to do to influence the manifestos which will underpin the strategy for the different political parties for the General Election likely to be held in 2024.
We will influence where we can.
We began this update with two images, continued with 1,000 words and can end with two new items of hope and support.
Firstly, our sister charity has launched a new resource to help you when cancer spreads to the brain and secondly the Focused Ultrasound Foundation has designated the University of Oxford a Centre of Excellence in focused ultrasound.
We will be hearing more about Focused Ultrasound at the first APPGBT of 2024.
At that meeting there will also be further updates on the APPGBT report and its recommendations.
This is where impact lies, this is where change will happen.
Images live long in the mind, but words will change things.
They work together and that is an appropriate note to end this update on because together we will find a cure.
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