This week's video clip was taken at Westminster on possibly the noisiest corner in London. Consequently, I am shouting a bit and the sound occasionally distorts but if you'd like to watch it you can always turn the sound down and look at the subtitles. Thank you for continuing to receive these updates. Your support is both hugely valued and hugely impactful. Please never underestimate the cut through your letters, emails and calls to action have on your elected representatives and when they are lobbied they then take your concerns further up the chain to our ministers and they then cascade down to their teams about what is a priority for their department.
That is how we engineer change.
On Tuesday, in Portcullis House, the inaugural meeting of the All-Party Parliamentary Group on Brain Tumours (APPGBT) for this Parliament was held and the group can now be registered. With our past Chair Derek Thomas no longer an MP, we are thrilled to announce that Dame Siobhain McDonagh is the new Chair of the group. She will be supported by MPs Sarah Owen and Mims Davies, as well as Lord Polak, who were elected Officers of the group. The membership of the group consists of more than 20 Parliamentarians, all committed to making a difference for brain tumour patients.
The meeting was largely procedural and Brain Tumour Research is proud to be able to resume our role as provider of the secretariat. However, plans were laid for future meetings with a list of influential stakeholders the group would like to hear from discussed, as they search to improve options and outcomes for brain tumour patients.
Dame Siobhain, whose sister Margaret died from a glioblastoma (GBM) last year, told us: “As an MP, and as a sister who has campaigned for a pathway to better, kinder treatments for UK brain tumour patients – and of course for there to be more of them, I am very happy to take up this position as Chair of the APPGBT. With this position comes a real sense of wanting to drive things forward, to make change and to do things differently. Where we are currently isn’t good enough and as Chair, alongside our Officers and Members, our group is determined to deliver real impact. Our mission is too important not to.”
(Pictured left to right: Zubir Ahmed MP, Tom Rutland MP, Helena Dollimore MP, Monica Harding MP, Siobhain McDonagh MP, Deirdre Costigan MP and John McDonnell MP).
On Wednesday, at Holyrood, the seat of Scottish Government, the Brain Tumour Research policy team met with Jenni Minto, the Minister for Public Health and Women's Health. Alongside representatives from the Scottish Government’s Cancer Policy team and the Chief Scientist’s Office, the meeting attendees were completed by Professor Steve Pollard, Group Leader at the Centre for Regenerative Medicine and Edinburgh Cancer Research Centre, University of Edinburgh.
The packed agenda ranged from why brain tumours must be treated as a priority by the Scottish Government, to how the Scottish Government should explore an academic partnership model to ensure long-term, sustainable funding for brain tumour research.
After the meeting Professor Pollard said: “Charities cannot underpin academic research on their own and I think that today’s meeting was a step forward as we seek further collaboration with the Government to expedite the development of new therapeutics.”
The meeting was another step in our continuing conversations with health and science stakeholders at Holyrood and I am heartened by the tone of our discussions. We need more clinical trials and we need to build on the world leading research, like Professor Pollard’s, already being conducted in Scotland. It is both a challenge and an opportunity for us to provide the suitable plans and projects for the Scottish Government to support us.
At the end of the meeting Ms Minto agreed to open the inaugural meeting of the Cross Party Group (CPG) on Brain Tumours, which will be held on Tuesday 8th October. Brain Tumour Research is proud to be providing the secretariat for this CPG.
(Pictured left to right: Hugh Adams, Minister Jenni Minto, Professor Pollard, Thomas Brayford)
New MP Claire Hazelgrove (Filton and Bradley Stoke) was lobbied by a Brain Tumour Research campaigner and was prompted to ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) widen treatment options on the NHS for people with brain tumours and (b) prevent patients from having to go abroad to access treatment.
Minister Karin Smyth's response was that: "People with brain tumours have access to various treatment options on the National Health Service, including surgery, radiotherapy and systematic anti-cancer therapies, depending on the nature and stage of the tumour.
"The Government is committed to improving waiting times for cancer treatment, so that people with brain tumours can get access to the care they need more quickly. We will start by delivering an extra 40,000 operations, scans, and appointments each week, as the first step to ensuring early diagnosis and faster treatment.
"Lord Darzi is currently undertaking an independent investigation into the state of the NHS, the findings of which will feed into the Government’s 10-year plan to build a health service that is fit for the future."
In July 2024, the Secretary of State for Health and Social Care commissioned Lord Darzi to conduct an immediate and independent investigation of the NHS.
His report does make brief mention of brain tumours and this mention is reproduced in full below:
"Treatments are becoming more sophisticated, but less timely. In 2024, more than 35,000 genomic tests are being completed each month. But the turnaround times are poor, with only around 60 per cent of test being performed to the agreed timeframes. This can delay the start of treatment which often depends on the result. Genomic testing is routinely commissioned across 7000 rare diseases and 200 cancer indications. And the NHS is the first in the world to offer whole genome sequencing as part of routine care. However, there is more to do to ensure access for everyone who could benefit. Research shared with the investigation by the Tessa Jowell Brain Cancer Mission (TJBCM) found that 72 per cent of UK neuro-oncology centres were able to deliver whole genome sequencing to at least some of their patients but that no centre was able to offer it to all eligible patients. Moreover, the authors estimated that in 2023, on average, less than five per cent of eligible adult brain tumour patients were having whole genome sequencing through NHS commissioned pathways."
The TJBCM report about genomic sequencing was published this week and we reported on this Latest News here.
As we updated last week our Director of Research, Policy and Innovation, Dr Karen Noble joined a round table event hosted by Genomics England where collectively we explored collaborative opportunities and discussed how whole genome sequencing data could be used to maximise impact for patients including diagnosis, treatment and clinical trial access as well as helping to inform research. Access to genomic testing is most definitely on our campaigning radar.
Recently Alistair Strathern (Hitchin) asked the Secretary of State for Health and Social Care, whether he plans to improve access to clinical trials for those affected by brain tumours.
On Tuesday Health Minister Andrew Gwynne responded on behalf of the Government and wrote:
"The Department is committed to implementing the recommendations of Lord O'Shaughnessy’s review into commercial clinical trials, making sure that the United Kingdom leads the world in clinical trials, and ensuring that innovative, lifesaving treatments are accessible to National Health Service patients, including those with brain tumours.
"The Department funded National Institute of Health and Care Research (NIHR) funds research and research infrastructure, which supports patients and the public to participate in high-quality research.
"In addition, the NIHR provides an online service called Be Part of Research, which promotes participation in health and social care research by allowing users to search for relevant studies and register their interest. This makes it easier for people to find and take part in health and care research that is relevant to them. When designing research studies, researchers consider inclusion and exclusion criteria carefully to ensure they are not unnecessarily excluding specific groups who would benefit from the outcome of their study. The Health Research Authority is developing guidance to improve practices in this area."
We expect the NIHR to be present at the first meeting of the APPGBT in late Autumn and it will be good to hear from the 'horse’s mouth' on this, on the money left unspent from the £40 million made available in 2018 and how they are planning to do things differently to ensure full deployment of that money. We have definitely been advised that the £40 million isn't a ceiling and that the NIHR stands ready to commit more money into our area. As in Scotland the situation exists in Westminster; it is both a challenge and an opportunity for us to provide the suitable plans and projects for the Government to support us, to support brain tumour researchers and most critically to support anyone diagnosed with a brain tumour.
Finally congratulations to the new select committee chairs.
Most relevant to us are:
Health and Social Care where Layla Moran was elected and Chi Onwurah who is now Chair Science, Innovation and Technology.
APPGBT Officers and members are well represented too with:
Energy Security and Net Zero - Bill Esterson - a new member of our group
Education - Helen Hayes
Women and Equalities - Sarah Owen
Environment, Food and Rural Affairs - Alistair Carmichael
We are in a good position when we have such a strong Chair for our APPG supported by high quality Officers and members - it is a cause these political stakeholders are passionate about and really qualified to take forward.
They can help us engineer change.
We will be back next Friday.
Wishing you all a peaceful time until then.
Hugh & Thomas