As a campaigning community we are very fortunate to have a committed advocate for our cause at Westminster. Derek Thomas is the MP for St. Ives, Cornwall and the Chair of the All-Party Parliamentary Group on Brain Tumours (APPGBT) - we are the group's secretariat provider. For this final campaigning update of 2023 we have asked Derek to reflect on the past year. Here is what he told us:
Joining the All-Party Parliamentary Group on Brain Tumours (APPGBT) was one of the first things I did after being elected to Parliament in 2015 and I was delighted to take up the position of Chair of the APPGBT in 2017.
In the time since then I know that the urgent need for more investment in brain tumour research has not gone away.
Far from it.
Charities have suffered a loss of income during the pandemic and are now suffering further due to the cost-of-living crisis. They should not be relied upon to provide funding to advance treatments for brain tumours; Government funders should be taking a leading role.
In my opinion the past year has been our most impactful partly because in March we proudly launched our inquiry report ‘Pathway to a Cure – ‘Breaking Down the Barriers.’
I firmly believe that the Government wants to fund brain tumour research and the researchers clearly want funding so there is supply and there is demand but the mechanism for this to function as an effective market system is broken.
The spirit of our inquiry was to seek out the root of this breakage and, with positive intent, identify solutions to the blockages that affect the ability of the scientific and clinical communities to advance options for, and the outcomes of, those affected by this devastating disease.
This inquiry found that the current funding system is unfit for purpose.
The research funding system has been built in silos and needs to be joined up from basic science through to clinical trials.
Patients with brain tumours should have equity of access to trials of new anti-cancer drugs that are currently only available to patients with other malignancies as the current system can exclude them for fear of skewing results.
Patients and families continue to be let down despite the Government’s promise of millions of pounds of investment which hasn’t materialised as was reported on in The Guardian at the time.
We know that brain tumour patients don’t have the luxury of time and the spirit of the report was to address the need to access funding by the research community and to find solutions which ensure a properly resourced pathway to a cure for brain tumours.
This can only begin with a recognition that a uniquely complex disease must be met with a unique response.
For those in the brain tumour community, this is an emergency.
The Government should recognise this emergency by treating brain tumour research as a critical priority.
Over the coming months and years, we will use the results of this inquiry to keep brain tumours on the political agenda and improve outcomes for brain tumour patients. We were pleased to welcome then Science Minister, George Freeman, to the launch event and he spoke movingly of the devastation that he knew brain tumours can wreak.
We also enjoyed ministerial engagement at the Department of Health with Minister Will Quince and although he has now moved on we are confident that the sentiment he expressed for positive change and funding being available will move across to his successor, Andrew Stephenson, who only last week responded to a question stating that brain tumour research is a “personal priority to me.”
Our profile at Westminster was heightened in March when I begged to move ‘That this House considers brain tumour research funding’ at a Backbench Business Debate in the Main Chamber.
After numerous thoughtful, moving and positive contributions from colleagues I used my summation to say:
“The nature of debate in this place can be very toxic, but not today. I thank the right hon. Members for Leeds Central (Hilary Benn) and for Hayes and Harlington (John McDonnell), my hon. Friends the Members for Scunthorpe (Holly Mumby-Croft), for Buckingham (Greg Smith), for Meon Valley (Mrs Drummond) and for Great Grimsby (Lia Nici), and the hon. Member for Luton North (Sarah Owen). I also thank the hon. Member for Mitcham and Morden (Siobhain McDonagh). We cannot go away from this place and ignore the lived experience of her sister, Margaret, and her family.
“The Minister has heard those contributions, and he has the report and each of the recommendations. I am encouraged that the discussion does not end here and that the work will continue.
“It must, because far too many lives depend on it.”
To close the Deputy Speaker said “May I say what a privilege it has been to chair this debate?
I am pleased to say that as we say goodbye to 2023 our APPG membership is robust with 22 Parliamentarians declaring a willingness to be Officers and Members. I would like to pay tribute to longstanding APPGBT member Baroness Masham who sadly died this year and also to APPGBT stalwart and inquiry panel member Hilary Benn who was a huge support to the group before having to move on when taking up shadow ministerial duties.
Last week I met with Catherine Walker, the wife of Air Marshal David Walker. She told me about the impact the debate had on her and her husband as they watched from their home.
Up until that point they had felt alone in their determined resolve to make a difference for brain tumour patients. And they had felt that they were alone striving for David’s life. But watching the debate, and in particular the commitment of APPGBT members, made them realise that there was a campaigning movement out there and that some Parliamentarians were campaigning for change.
That debate made them feel that they mattered so much more than the historic lack of research funding had led them to believe.
I found it a profoundly moving conversation and I feel it was further validation of the role campaigners and politicians can play in bringing hope.
This year I have been able to ask questions of neurosurgeons, oncologists, scientists, industry representatives and the Prime Minister and most crucially I have spoken with many of you.
It is the personal stories that underpin our activity.
We are motivated and humbled by them.
This may be a particularly difficult time for some of you reading this and I wanted you to know that you are in my thoughts.
Change can’t come soon enough in terms of new options and better outcomes for brain tumour patients and it is the aim of all of us involved in the APPGBT to make a difference.
It is a cause we all care very deeply about.
The first meeting of 2024 will take place in February and will look at the path to clinical trials and the issues surrounding tissue storage.
The work goes on and my appetite for it is as strong as when I became Chair over six years ago.
I will continue to fight your corner in Westminster.
May I take this opportunity to send my very best wishes to you all for this Christmas and for the New Year.
Derek Thomas MP
That is it for this week's update and for the updates in 2023
We both wish you all a peaceful time over the Christmas and New Year period.
Thank you for all that you have done to support Brain Tumour Research in 2023, it has been a remarkable year.
We will be back on Friday 12th January.
Hugh and Thomas