Thank you for all your work asking your MPs to join the next meeting of the All-Party Parliamentary Group on Brain Tumours (APPGBT).
The template invitation is included again a little later in the update, but we are very encouraged by the responses received already and we are looking forward to a busy meeting.
On a personal note, I received several emails last week that were kind and complimentary about our campaigning work.
I am proud of what we are on the road to achieving and to know that it is appreciated by you, particularly by those of you for whom this disease has caused such devastation, is both humbling and gratifying.
Our provision of the secretariat for the APPGBT is a key part of our campaigning work and one item which we will certainly place on the agenda for the next meeting is an update on progress against the report recommendations following the inquiry ‘Pathway to a Cure – breaking down the barriers.’
Here is a summary on the recommendations we will be reporting against with a brief comment to give you an idea of what we have been doing to push the report recommendations forward.
Recommendation 1) The Government should recognise brain tumour research as a critical priority, developing a strategic plan for adequately resourcing and funding discovery, translational and clinical research by 2024, ring-fencing £110 million of current and new funding to kick-start this initiative.
We are meeting regularly with representatives of the National Institute for Health and Care Research (NIHR), the Medical Research Council (MRC) and the Tessa Jowell Brain Cancer Mission (TJBCM) to move this forward. We are buoyed by the groundswell of support for the #BrainTumourPetition which has now reached 65,000 which directly addresses this recommendation. At these meetings we are challenging the existing ways of doing things that has led to poor levels of funding deployment and looking at where the investment needs to be so future money can be allocated faster.
Recommendation 2) Cell line isolation and biobanking is happening but only at a minority of sites across the research community. Government must ensure a robust tissue collection and storage infrastructure is in place across the country.
Our action here is to engage with our funded research community and beyond to understand exactly what is required, what is possible and where could, and should, funding come from. We have a network of connections from junior researchers to the most experienced professors and senior clinicians, who we consult and will help us take this recommendation forward.
Hugh with Lord Polak CBE – APPGBT Officer and brain tumour patient
Recommendation 3) Government must do more to build research capacity encouraging and retaining talent through fellowships and research incentives.
Again, this is work we are scoping with the TJBCM as well as looking at what we have learned from our funding alongside the MRC in Wales and what best practice in the area might look like and how can it be duplicated elsewhere.
Recommendation 4) There are a limited number of clinical trials available for brain tumour patients and the national trials database is not reliable. Government should ensure equity of access to clinical trials and that the clinical trial database is robust and up to date.
There are several possibilities in this area we are looking at with opportunities to review, pursue and hopefully support. Again, the community, both clinical and patient, will guide us. The right to trials is an essential one and one that is denied to many brain tumour patients. It is hard enough getting trials up and running but then for them to have a poor take up rate due to ignorance of their existence or their eligibility criteria is disastrous and for that situation to be allowed to continue is senseless.
George Freeman Minister of State for Science, Research and Innovation with the APPGBT report at the Westminster report launch in March
Recommendation 5) Pharmaceutical companies are choosing not to pursue the development of brain cancer drugs in the UK. Government should simplify the regulatory process and introduce tax reliefs and incentives for investors, to encourage investment for the longer time periods necessary to develop and deliver new brain tumour drugs.
We have a meeting today (Friday) with a pharmaceutical company keen to make the case to us that with funding they could be at clinical trial stage within 18 months, but they are frustrated at the criteria imposed on funding allocation by the NIHR. We will listen closely to what they have to say, and with that react as appropriate, making their case and pushing for change if that is the right thing to do.
The next meeting of the APPG in February will feature news of a trial that has just started and to hear about that route to trial will be a useful opportunity for our Parliamentary stakeholders. We have invited the organisation involved to join us in Westminster at a date to be announced in February, so they can share what they know and what their trial is looking to do to improve options for brain tumour patients.
Recommendation 6) Funding bodies should ring-fence specific funding for research into childhood brain tumours where survival rates for the most aggressive tumours have remained unchanged for decades leading to frustrated families seeking costly and unproven treatment abroad.
As many of you know only too well, the current paediatric brain tumour landscape is bleak for patients and their families. In September, Childhood Cancer Awareness Month, we published our Childhood Brain Tumour Manifesto, Time for a Cure, which will guide our campaigning action in the coming months.
We call on Government funding bodies to ring-fence £25 million specifically for funding research into childhood brain tumours with a stated intention for this money to be completely deployed by 2027.
Our Director of Research, Policy and Innovation, Dr Karen Noble, explains: "Since the early 2000s brain tumours have become, and remain, the biggest cancer killer of children overtaking leukaemia, which has had significant levels of research funding, resulting in clinical trials and a subsequent improvement in survival statistics. Survival rates for the most aggressive childhood brain tumours have remained unchanged for decades, leading to frustrated families forced to seek costly and unproven treatments abroad.
"Hope lies in research, but research costs money. We need the Government to step up and invest because this is the only way we will find new treatments and, ultimately, a cure.
As mentioned at the beginning of the update here is the template invite to email your MPs.
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 14th November 17:00 – 19:00 Committee Room 15
Dear <Your MP’s name>
The APPG on Brain Tumours will be taking place in Committee Room 15 on Tuesday 14th November from 17:00 – 19:00 and will be chaired by Derek Thomas MP. An agenda and a 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>
In case you missed it here is a piece from Siobhain McDonagh MP, a member of the APPGBT, in The Observer;‘How can this devastating illness get no attention?’.
It is written in the wake of her influential sister Margaret McDonagh, Baroness McDonagh’s death from a glioblastoma in June.
She would have been remembered by many at this week’s Labour Party Conference in Liverpool, an event that, following being at the Conservative Party Conference in Manchester last week (read our blog on that event here), our Policy and Public Affairs Manager Thomas Brayford headed 35 miles west to attend.
Among snatched conversations and packed meetings, Thomas was able to join colleagues from the Neurological Alliance at an event entitled, “The Neuro Reception How can Labour back the 1 in 6 with a neurological condition?”
The Neuro Reception included speeches from Sam Mountney, Policy and External Affairs Manager of the Neurological Alliance, and Pippa Sergeant CEO of the Brain Charity.
Sam highlighted some of the shared experience of the neurological community.
Currently, those with a neurological condition experience delays to treatment, are unable to access the mental wellbeing support they need and find it difficult to obtain the right information and support.
Pippa spoke about the Brain Charity’s most recent report, called “It’s all in your head.”
At present, there are 800,000 hospital admissions per year due to neurological conditions, with individuals often arriving at A&E at the point of crisis.
Early diagnosis, she said “is key to reducing this number and supporting people experiencing neurological conditions on what can be an uncertain and frightening journey.”
At the event Thomas spoke to Lord Alf Dubs (pictured below), long-time supporter of the Neurological Alliance.
He told Thomas, “There’s still a lack of knowledge and information about neurological conditions. We need more awareness and better training. That will lead to better outcomes, including for the brain tumour community.”
Then, following on from last week’s event in Manchester, he represented Brain Tumour Research at the second instalment of the Health Charity Showcase 2023.
Organised by Hanover Communications, this event highlighted the invaluable contribution that health charities make across the patient pathway.
At the Health Charity Showcase, there were brief speeches from Health Shadow Ministers, Karin Smyth MP and Preet Gill MP (both pictured below with Thomas).
Preet said that Labour would focus on reform to the health system and “making sure they can deliver locally and target services to patients’ needs.”
Karin said it was important to continue conversations with research charities as a way of informing the Labour Shadow Health Team but also so that they can “talk with authority when they have important policy discussions.”
Preet acknowledged the importance of campaigning and our lobbying for political support to address the issues affecting the brain tumour community. She said: “I just wanted to say how valuable the work that you do is.”
After two hectic weeks Thomas reflected: “At conference, I spoke to councillors, MPs and Lords about more awareness, better training, about the mental health toll of a brain tumour diagnosis, unblocking the funding bottleneck and the important recommendation of the All-Party Parliamentary Group’s report. There’s a political will, but from will to action is a journey we must go on together.”
The journey takes another step with each meeting of the APPGBT.
Thank you for what you are doing to make sure as many politicians as possible are walking the pathway to a cure alongside us.
Hugh and Thomas