The time Health Minister Will Quince is spending on matters relating to brain tumours shows no sign of decreasing.
You may remember in June he said, “In truth, I think I have spent more time on this particular issue in my time as a Minister than I have on any other condition under the umbrella of the Major Conditions Strategy.”
Recently Caroline Ansell MP asked whether the Department of Health and Social Care (DHSC) “plans to make an assessment of the effectiveness of immunotherapy as a treatment for brain cancer.”
Will Quince’s written reply was that: “The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing evidence-based guidance for the National Health Service on whether medicines represent a clinically and cost-effective use of resources. All new medicines, including immunotherapies, are appraised by NICE within their licensed indications, and the NHS in England is legally required to fund medicines recommended by NICE.
“NICE is currently developing guidance on the immunotherapy dabrafenib with trametinib for treating BRAF V600E mutation-positive glioma in children and young people aged 1 to 17. If this is recommended for use on the NHS, it will be eligible for funding through the Cancer Drugs Fund from the point that NICE issues positive draft guidance.”
This isn’t an assessment of the effectiveness of immunotherapy, and we know that there are no proven immunotherapies available to UK brain tumour patients currently, it is an update on one avenue of potential treatment.
Caroline Ansell also asked for: “an assessment of the effectiveness of his Department's processes for allocating funding to the highest quality clinical trials for brain tumour research.”
Will Quince replied that the Department “invests in health research through the National Institute for Health and Care Research (NIHR). NIHR invests in research, clinical expertise, specialist facilities, workforce and support services across a range of clinical areas. NIHR expenditure on cancer research was £101.2 million in 2021/22.
“The Government is committed to funding high-quality brain cancer research. The May 2018 Government announcement of £40 million for brain tumour research as part of the Tessa Jowell Brain Cancer Mission remains available and if we can spend more on the best quality science we will do.
“We welcome more high-quality applications for brain tumour research funding. Applications are subject to peer review and judged in open competition. The NIHR continues to follow its normal high-quality processes in making funding recommendations to the Department. It is worth noting that all applications that were fundable in open competition have been funded.”
It is also worth noting that since 2018 just £11 million has been deployed.
If the NIHR “continues to follow its normal high-quality processes” and the money remains unallocated will the NIHR have done a ‘good job’ in protecting their standards or in retrospect, with the stark facts around brain tumours remaining unchanged will we say we should have done things differently, we should have been innovative, we should have considered patients and their families more and ‘normal high-quality processes’ less?
Ms Ansell asked the minister two further questions that received the same answer.
They concerned steps to encourage clinical researchers to specialise in brain tumour research and steps his department is taking to support researchers to access Government funding for brain tumour research.
As part of his response Mr Quince wrote that: “Brain tumour research remains a challenging scientific area, with a relatively small research community.
“We are working closely with the Tessa Jowell Brain Cancer Mission (TJBCM) in hosting customised workshops for researchers, and training for clinicians. These actions will grow capacity for brain cancer research, attracting new researchers, developing the community, and supporting researchers to submit high quality research funding proposals.”
This talks directly to the recommendation in the APPGBT Inquiry report to “develop a continued programme of workshops and a funding toolkit for researchers, supporting navigation of the funding system and increasing success rates.”
We look forward to hearing more details on this from our friends at the TJBCM with whom we have regular catchups.
For Ms Ansell (pictured) the brain tumour agenda is a personal one because as she noted in her maiden speech to the Commons: "I am a teacher and passionate about education, but it was my boy’s shock diagnosis of a life-threatening brain tumour, then aged five, that changed the course of my life and has ultimately brought me to the House of Commons."
We are delighted that she is happy to be identified as a member of the APPG on Brain Tumours.
If you would like to read further on recent questions, please follow the links to Derek Thomas Question and Dominic Raab Question.
On behalf of a constituent Daisy Cooper MP asked a very specific question about (a) Servier and (b) the MHRA about making Vorasidenib available to clinically suitable brain tumour patients in the UK under the Early Access to Medicines Scheme.
Will Quince said that the DHSC: “had no specific discussions with Servier about making Vorasidenib available to clinically suitable brain tumour patients in the United Kingdom under the Early Access to Medicines Scheme (EAMS). The Medicines and Healthcare Products Regulatory Agency (MHRA) has also not had any specific discussions with the Secretary of State regarding Vorasidenib.
“The MHRA has not issued a scientific opinion for Vorasidenib under EAMS but should an application for this be received, the MHRA will consider this accordingly.”
The story about Vorasidenib was also reported in The Observer last Sunday and we were delighted to provide background context for the journalist and were quoted in the piece: ‘These patients do not have time’: families in UK demand access to new drug that slows brain tumours.
The story focuses on Shay Emerton and mum Dawn and you can find out more about Shay here.
Shay was also very involved with this year's Rose of Hope campaign alongside our great friend TV gardener Danny Clarke.
Please keep an eye on our website for the next opportunity to add a pop of colour to your garden with our Rose of Hope.
Following the news in June that the NCRI is to wind down, Kim Leadbeater MP asked DHSC what steps the Government plans to take to ensure an adequate (a) level and (b) coordination of cancer research, in the context of the closure of the National Cancer Research Institute.
The response was that: “the Government is monitoring the situation through the National Institute for Health and Care Research and the Medical Research Council to ensure that the National Cancer Research Institute’s (NCRI) valuable assets, such as data, and activities, such as research groups, are not lost to the community.
“The Government will also take necessary steps to support the cancer research ecosystem, in discussion with NCRI partners, if additional support is needed. Funders will continue to work with the research community to deliver cancer research that meets the needs of patients and the public.
“We recognise the leadership role that Cancer Research UK has in this area and will work in partnership with them and the patient community to improve care and outcomes for all.”
We will monitor the situation closely to make sure we are able to reflect as accurately as possible the current spend on brain tumour research and to report on any trends.
One thing we can say is that the national investment in brain tumour research has increased to £15 million a year compared to less than £1 million when our co-founder and trustee Sue Farrington Smith lost her sister’s little girl Alison Phelan to a brain tumour in June 2001.
This increase has been due in no small part to the campaigning activities of Brain Tumour Research and to the tenacity and determination of many of you reading this update.
On Monday, Thomas attended an event organized by Cavendish Consulting entitled “In Conversation with Wes Streeting.”
When reflecting on the Life Sciences, Mr Streeting said that some of his best days as Shadow Secretary of State for Health had been spent with professionals from the sector.
He is excited by the potential of the sector, in terms of new treatments and new technology - particularly by personalised precision medicine which he said “would treat faster and prevent and predict disease.”
Mr Streeting said, “We’ve got to make sure that the UK is at the forefront of those developments” and that the UK is a great place to be for those operating in this sector. He added that we needed to strengthen our position as a leading country for life sciences.
He said that the Labour Party recognised this, and Keir Starmer’s decision to appoint Peter Kyle MP, as new Shadow Minister for Science, Innovation and Technology was a clear demonstration of this.
On Tuesday the Neurological Alliance Policy Group met with a policy adviser from the Department of Health and Social Care to discuss the Major Conditions Strategy.
The adviser referred heavily to the Strategic Framework and Case for Change which was published on 14th August.
This framework creates the framing for the final report, which will include substantially more detail, especially for specific conditions. They will be identifying connections between conditions to help address risk factors and to integrate health and social care services.
The Department will also consider innovative approaches to operating the healthcare system. This includes partnerships with patients, education, commerce and the voluntary and community sectors. The Strategy will be underpinned by a number of principles. These include the need to consider the needs of individuals throughout the life course, as well as the need to ensure that health inequalities and disparities are considered as factors across the major conditions.
On Wednesday, Macmillan presented a recent report to Cancer52 colleagues looking at the future healthcare experience for people with cancer.
By discussing the potential for cancer care by 2035 today, Macmillan believes we will ultimately achieve more sustainable and longer-term change.
Macmillan has identified 12 factors that are influencing the evolution of cancer care. The work also considers the impact of demographic trends by 2035. The UK’s aging and growing population will increase cancer incidence, which in turn is a driver for increasing prevalence alongside more people living longer with their cancer.
You can read about it here.
At Thursday’s Monthly Cancer Charity Webinar, NHS officials were encouraged by cancer diagnosis rates for June.
The NHS carried out more cancer diagnostic tests than in any other month – a total of 2.4 million.
They said that diagnosis rates are 2.1% higher than pre-pandemic levels.
They said that radiotherapy and chemotherapy have been affected less by industrial action, but they expected more disruption to surgery. 
Also on Thursday, Councillor Geoff Elner (pictured) presented a Council Motion urging Shropshire Council to raise awareness of brain tumours and to support vital research and development.
Councillor Elner emphasised that brain tumours remain the chief cause of all cancer deaths in children and young people, and paid tribute to “happy, popular, seemingly healthy young teenager” Ella McCreadie, a 13-year-old resident in his ward who died in December 2022.
You can read about his motion here.
Planets Cancer Charity are lobbying the Association of British Insurers and Financial Conduct Authority to improve travel insurance options for those who have been given a cancer diagnosis.
Currently quotes are often prohibitively expensive, leading many to not travel abroad or travel without insurance.
They have put together a survey which you can access here – it only takes less than five minutes to complete, and there is a real opportunity to improve this issue for patients.
The deadline is the end of September as they hope to present results at the Association of British Insurers event in October.
Finally, this week on Radio Five Live Brain Tumour Research was very prominent in pieces discussing brain tumours hosted by Tony Livesey and Clare McDonnell (pictured).
Featuring contributions from our new CEO Dan Knowles, Director of Research Policy and Innovation Dr Karen Noble and Hugh plus Theo Burrell the conversation ranged from cutting edge research to our asks of Government and fundraising, particularly our Walk of Hope.
Hugh will be at the one in Luton next Saturday and if you are in the area, we hope to see you there.
If not, we’ll see you next Friday for the weekly update.
Wishing you all a peaceful time until then.