What would you like us to discuss, what time of day suits you best, what is important to you, what experiences have you had that you might like to share during the webinar?
To accurately fulfil our position as the campaigning voice of the brain tumour community it is vital that we reflect your experiences and amplify our collective voice, so please do email your thoughts and suggestions to campaigning@braintumourresearch.org
One thing we will be looking at in the webinar, hopefully in the company of a special guest speaker, will be the current Health and Life Science landscape. As we pass the first 100 days in office for the new Government, we have a chance to acknowledge recent announcements that could impact on our disease area.
At last week's PMQs Sir Keir Starmer said "We will get the NHS catching cancer on time, diagnosing it earlier and treating it faster."
This was echoed in a response to a question from Sarah Green MP, who asked the Secretary of State for Health and Social Care, "if he will make an assessment of the potential merits of designating brain tumours as a clinical priority."
Andrew Gwynne answering on behalf of Wes Streeting wrote;
"While the Department has not made a formal assessment, it spends £1.5 billion each year on research through its research delivery arm, the National Institute for Health and Care Research (NIHR), with cancer the largest area of spend at over £121.8 million in 2022/23 reflecting its high priority. In September 2024, the NIHR announced new research funding opportunities for brain cancer research spanning both adult and paediatric populations. This includes a national NIHR Brain Tumour Research Consortium, to ensure the most promising research opportunities are made available to adult and child patients and a new funding call to generate high quality evidence in brain tumour care, support and rehabilitation.
"We will get the National Health Service diagnosing cancer, including brain tumours, on time, diagnosing it earlier and treating it faster so more patients survive this horrible set of diseases, and we will improve patients’ experience across the system. To do this, we will address the challenges in diagnostic waiting times, providing the number of computed tomography, magnetic resonance imaging and other tests that are needed to reduce cancer waits."
This all sounds hopeful and we will return to the Brain Tumour Consortium many times in the coming months, keeping you fully updated on this important initiative.
In last week's update we wrote about a number of funding developments and how, when collated, they are a source of optimism and we are able to continue that mood this week.
There has been a landmark collaboration with world's largest pharmaceutical company and this follows hot on the heels of further industry collaboration delivering a £400 million investment to boost clinical trials.
What is so critical for us though is that this funding underpins innovation and urgency. Brain tumour patients don't have the luxury of time and so we listened with interest as the Secretary of State for Science, Innovation and Technology, Peter Kyle, launched new a Regulatory Innovation Office tasked with curbing red tape and speeding up public access to new technologies.
The intent behind this launch will be tested by our community as a number of new options for brain tumour treatment approach the world of appraisal, regulation and market access and, where efficacy is proven and costs accepted, we must get these to the patient's bedside as quickly as possible. We will always be a charity campaigning for greater research investment to improve the situation for brain tumour patients and their families but this is an area that we cannot ignore and we will always push for a sense of urgency to push progress from the scientist's bench to the patient's bedside. If this urgency isn't realised then we won't take the next steps from pre-clinical models in our labs and as new treatments become available overseas they won't be an NHS treatment option for UK patients.
We are therefore encouraged when Wes Streeting, interviewed in The Financial Times talks of working with Peter Kyle to “bulldoze through . . . institutional barriers” in the NHS to make the service “a catalyst for great, groundbreaking science made here in Britain”.
There has been a recent boost for the life sciences with a major cancer investment announced by government and we can add to this that Cancer Research UK has made a £173m commitment to world-class research in Cambridge.
However when doing so they also note that;
"The UK is unusual in that the majority of non-commercial cancer research is funded by charities (62%) compared to the government (38%). Per capita, the UK government spends far less on cancer research compared to the US – a position that’s considered to be a major barrier to the UK’s competitiveness as a world-leading research nation. "
This is a position our community understands well as in 2020/21, of the £17.6 million spent on researching brain tumours, just £2.1 million came from Government funders (12%).
As laid out in our manifesto we believe that the very least patients and their families deserve is parity of funding with other site-specific cancer research ( breast , leukaemia) with an immediate Government commitment to double research spending to £35 million per annum.
When listening to former PM David Cameron talking about the Oxford-Harrington Rare Disease Centre Launch on BBC Radio 4's Today programme this week it is clear that to see real progress we can only move as quickly as the slowest member of the team so we need everyone, the scientists, the clinicians the bureaucrats and the regulators, working quickly, effectively and collegiately, all with the aim of accelerating progress in treating the millions of people affected by cancer, by rare diseases and by brain tumours .
If not we run the risk of staying at 'the back of the race of turtles’: which is where we currently are according to Paul Hudson, CEO of industry giant Sanofi, in this weekend's Observer.
Are you interested in becoming a Trustee of The Neurological Alliance? You can find out more and read their Trustee person specification and role description here.
We will be back next Friday and we will be reporting back from the 19th meeting of the European Association of Neuro-Oncology (EANO 2024) that is being held this weekend in Glasgow, we'll have some life science comment and it will be time to get in touch with your MP and ask them to join a November meeting of the APPG on Brain Tumours.
Wishing you all a peaceful time until then - and please don't forget to let us know your thoughts about the next webinar.
Hugh, Thomas & Evan
Published on 18th October 2024