In last week's update we wrote about 2018, when the Government announced that £40 million was available for allocation to brain tumour research applications, the route to deployment being through the National Institute for Health and Care Research (NIHR).
On Tuesday the following initiatives funded by NIHR were announced:
A transformative new funding call for the evaluation of novel therapies and optimisation of brain tumour treatments:
To be delivered through a national consortium with the potential to drive a step-change in brain cancer research. It capitalises on recent developments in precision medicine and will build capacity by bringing new researchers into the field and supporting early career researchers to focus on brain cancer. It aims to further develop the network for the delivery of brain tumour trials, which will ensure the most promising research opportunities are made available to adult and child patients as widely as possible.
A new funding call to generate high quality evidence in brain tumour care, support and rehabilitation:
A call focusing on care, support, and quality of life for patients with brain tumours, to build research evidence on interventions such as rehabilitation for patients with brain tumours. It will be funded through NIHR’s Health Technology Assessment (HTA) Programme and the Health and Social Care Delivery Research (HSDR) Programme.
Fellowships
New Tessa Jowell allied health professional (AHP) research fellowships to build the evidence on the importance of rehabilitation for patients with a brain tumour
The new funding opportunity will fund, train and support two early-career AHPs or other healthcare professionals to deliver research into improving the quality of life of patients and generate an evidence base to support patients with brain cancer rehabilitation. It aims to build a new generation of highly-skilled, research-active healthcare professionals. It will be funded by NIHR and led by TJBCM, through the Tessa Jowell Fellowship Programme.
Let us be clear here that what the Government announced on Tuesday is not an allocation of new money but a renewed commitment to spend the full £40 million that was made available back in 2018.
For this to happen, and progress to be made therefore, things must now be done differently and we have to look to supporting long-term early stage research development and then clearing a pathway for that to transform into fundable applications at the clinical trial stage in future years.
We applaud the sentiment of the announcement and don't doubt the sincerity behind it – particularly from Minister Stephenson – however the impact of what was announced we will monitor closely because more than anyone we want the aims to be delivered.
We believe there is real value for an immediate focus on areas such as drug repurposing and improved drug delivery to the tumour site using state of the art delivery devices and new surgical techniques. This is where we need innovation, a willingness to be fleet of foot and investment – if funding bodies can’t deliver on this then we risk being in the same place in another six years time.
This new suite of initiatives to take forward the £40 million pledged by the Government in 2018 was announced at a roundtable co-chaired by Health Minister Andrew Stephenson and CEO of the NIHR Professor Lucy Chappell.
Our CEO Dan Knowles attended the roundtable. He said: “We cautiously welcome today’s announcement and hope it represents a step-change in the Government’s approach to brain tumour research funding. In particular, we welcome plans to establish a national consortium to further research brain tumours, and applaud the collaborative nature of this initiative. We look forward to engaging and stand ready to support on behalf of the brain tumour community. We note and are pleased with the similarities to our Manifesto launched earlier this year, It’s time to do things differently."
The spirit of doing things differently informed two other meetings that we attended this week.
On Tuesday evening, in the splendour of Committee Room 14 at the House of Commons, the All-Party Parliamentary Group on Brain Tumours (APPGBT) met for its AGM.
As Brain Tumour Research are proud providers of the secretariat my colleagues Dan and Thomas joined me. With new rules of governance regarding APPGs and their AGMs now in place, the meeting required a quorum of eight Parliamentarians for business to progress. Such is the political interest in brain tumours and the desire for an improvement in patient options reaching quorum wasn't an issue on Tuesday. Those in attendance to progress through the procedural work were:
Derek Thomas
Holly Mumby-Croft
Lord Polak
Siobhain McDonagh
Daisy Cooper
Mike Amesbury
Lord Carlile
Caroline Ansell
Iain Stewart
Helen Hayes
John McDonnell
and many other supportive Parliamentarians sent their apologies.
We were particularly pleased that at the AGM Derek Thomas MP was reconfirmed as the Chair, as were Officers The Lord Polak CBE, Holly Mumby-Croft MP and Sarah Owen MP.
Following the official business an open discussion was had on the roundtable and on how best to approach the General Election and to bring the new intake of MPs into the brain tumour APPG fold.
The APPG has a new role to play in supporting stakeholders involved in the roundtable to ensure that all voices are heard and we look forward to that endeavour. However our political stakeholders are becoming impatient and don't want more time to pass without progress. Even after this week's announcements the danger of inertia remains real and we must guard against it.
There certainly was no sense of inertia at the table during another thought-provoking meeting this week when, on Monday and alongside our Director of Research, Policy and Innovation, Dr Karen Noble (with Dan joining us online), I had the great opportunity of an open and exploratory discussion with former 1st UK Minister for Life Science George Freeman MP and former Health Minister Will Quince MP.
The topic, of course, was how to take the cause of improved options and outcomes for UK brain tumour patients forward in the spirit of 'doing things differently' and the Brain Tumour Research manifesto. We came away from Westminster buzzing with new ideas and plans for innovative approaches.
To have such recent ministers from Science and Health, politicians who have worked at the highest level and really understand what can and can't be done and where to push doors and apply leverage, onside, and for them to offer Brain Tumour Research ongoing support is a huge boost to us in the new era of 'doing things differently.'
Huge thanks to both Parliamentarians and to Guy Opperman MP and Minister who took the photo above and who has his own real life experience of a brain tumour diagnosis.
Picture not actual Prof Scolyer scan
A year after undergoing a world-first treatment for glioblastoma (GBM), Australian doctor Professor Richard Scolyer remains cancer-free.
Prof Scolyer was diagnosed with a subtype of GBM which is so aggressive that most patients survive less than a year. But this week, the 57-year-old announced his latest MRI had once again showed no recurrence of the tumour.
Alongside his colleague, renowned medical oncologist Professor Georgia Long, Prof Scolyer was named Australian of the Year for his research on melanoma, which is now informing his own experimental therapy.
As co-directors of the Melanoma Institute Australia, over the past decade the pair’s research on immunotherapy, which uses the body’s immune system to attack cancer cells, has dramatically improved outcomes for advanced melanoma patients globally. Half are now essentially cured, up from less than 10%.
Prof Long and her team discovered that immunotherapy works better when a combination of drugs are used, and when they are administered before any surgery to remove a tumour. Last year, Prof Scolyer became the first brain cancer patient to ever have combination, pre-surgery immunotherapy. He is also the first to be administered a vaccine personalised to his tumour's characteristics, which boosts the cancer-detecting powers of the drugs.
Although the pair have previously said the odds of a cure are “miniscule”, they hope the treatment will prolong Prof Scolyer’s life and translate into clinical trials for GBM patients in future. They currently have a scientific paper under review, but it has been stressed that they are still a long way off developing an approved and regulated course of treatment.
Professor Garth Cruickshank, Chair of our Scientific and Medical Advisory Board, said: “Dr Scolyer’s story is exciting because it draws attention to how game-changing it would be for so many condemned patients if this novel approach to treatment of his glioblastoma did result in a cure.
“People vary in their response to treatments. Indeed, very few people with GBM – perhaps 2-5% – may live up to five years, but most succumb earlier particularly if they are older, and their tumours are larger. In many cases we can say that age, extent of tumour (stage) and surgery, and other individual factors will all modify how the tumour behaves. Thus, a person with a small glioblastoma who has had good surgery and chemo and radiotherapy and is young (under 60) will have a good chance of surviving 18 months. One would need to see such a person surviving well at two years or more to start to consider whether this heralds a breakthrough.
“This new treatment is novel and interesting and applied in the kind of innovative way that we need to see researchers trying, so we all hope that this is offers the key to a better future for brain tumour sufferers.”
Nicola Nuttall, the most prominent brain tumour research campaigner in the UK, has written a book about her daughter Laura and her brain tumour story. Nicola has joined us at Westminster and has spoken at our researcher workshop. She is a passionate and eloquent speaker and these skills transfer to The Stars Will Still Be There: A memoir of what my daughter taught me about love, life and loss, which was published last week.
It documents her daughter Laura’s brain tumour journey, her bucket list adventures and her inspirational campaigning that touched people around the world.
Laura died on 22nd May 2023, aged just 23.
In between huge demand from the media to speak to her I managed to have a quick chat with Nicola on the day of the book launch and she told me:
“I’d written 75% of the book before Laura died but when I began writing the book I dreamt of it being a different story with a happier ending.
“Laura didn’t read what I was writing – why would she want to look back at things that had happened, she was too focused on the new things she wanted to do.
"I suppose the book is written for ordinary families like ours because this disease can affect anyone and I want people to be aware that your life can change in an instant.
"I could say that this has all been so unfair but I don’t because Laura didn’t ever say that – she only ever felt sorry for others affected by a brain tumour – never herself.
"She showed me how important it is to live for the moment and make make the most of a bad situation.
"That is why my work to raise awareness will continue, we must pursue better, kinder treatments. The current underfunding for research affects everyone.
"The book is for those affected by brain tumours and for those who haven’t been affected too.
"It is about life lessons and what we can all learn from Laura.”
Nicola's book is available to purchase now on Amazon.
That is it for this week.
Wishing you all a peaceful time until next Friday.
Hugh and Thomas