Brain tumours kill more children and adults under the age of 40 than any other cancer
Answers to questions and telling stories
At Westminster, in the last days before summer recess, there have been answers to brain tumour questions.
On 10th July Navendu Mishra, the MP for Stockport, asked the Secretary of State for Health and Social Care: “how much of the £40 million allocated in 2018 for brain tumour research over five years has been disbursed to fund that research as of July 2023; and when he plans to allocate the remaining funds.”
The reply came back that: “The Department invests in health research through the National Institute for Health and Care Research (NIHR). Since the 2018 announcement, NIHR has committed £10.7 million spend across 13 brain tumour research studies. All applications to NIHR that have been assessed as “fundable” in open competition have been funded, and this will continue.
“Additionally, NIHR research infrastructure supports brain tumour research studies, mainly in the NHS. This infrastructure – people and facilities – is instrumental to the delivery of research funded by the NIHR, charities and others. Resource costs are significant, though it is difficult to disaggregate purely brain tumour spending to add to the £10.7 million figure above.
"The Government is committed to funding high-quality brain cancer research, and we expect to spend more as new research progresses. The £40 million funding announcement will remain available, and if we can spend more on the best quality science, we will do so.”
On 13th July the Chair of the All-Party Parliamentary Group on Brain Tumours (APPGBT), Derek Thomas MP tabled two questions, firstly to ask the Secretary of State for Health and Social Care, “what steps his department is taking to increase the number of glioblastoma patients who are offered whole genome sequencing?”
On Tuesday Health Minister, Will Quince, replied that: “Genomic testing for glioblastoma is included in the National Genomic Test Directory. Testing can be delivered using a range of technologies, including whole genome sequencing or Next Generation Sequencing technology (large cancer gene panels) to ensure that a patient receives the most appropriate genomic testing depending on their individual circumstances. Anyone who meets the eligibility criteria outlined in the National Genomic Test Directory will be able to access this genomic testing.
In addition, glioblastomas are one of four cancer indications included in an innovative £26 million programme, led by Genomics England in partnership with the National Health Service, to evaluate cutting-edge genomic sequencing technology to improve the accuracy and speed of cancer diagnosis. Genomics England are also collaborating with a lead researcher to support research into glioblastomas through the Brain Matrix study. Patients who have consented to this study will have whole genome sequencing performed via the NHS Genomic Medicine Service.”
Derek Thomas at our University of Plymouth Research Centre
Derek also asked the Secretary of State for Health and Social Care, “if he will make an assessment of the implications for his policies of the number and proportion of patients diagnosed with glioblastoma who had received whole genome sequencing of their tumours before the end of 2022.”
Will Quince’s response was that “NHS England, supported by a Genomics Clinical Reference Group and Test Evaluation Working Groups, continually review the National Genomic Test Directory to keep pace with scientific and technological advances, while delivering value for money for the National Health Service. This review will include the genomic testing offer for patients with a suspected glioblastoma diagnosis, as per the eligibility criteria outlined in the National Genomic Test Directory.
A robust, evidence-based process and policy is in place to ensure testing continues to be available for all patients for whom it would be of clinical benefit.
“The policy is available at the following link: https://www.england.nhs.uk/wp-content/uploads/2020/12/Updating-the-National-Genomic-Test-Directory-v1-Dec-2020.pdf
"The performance of the NHS Genomic Medicine Service is monitored quarterly through an assurance framework, which ensures all seven NHS Genomic Laboratory Hubs are operating to national quality standards. This identifies and minimises any potential variation and ensures consistent delivery of the criteria outlined in the National Genomic Test Directory.”
In the House of Lords Lord Hunt of Kings Heath asked Parliamentary Under Secretary of State at the Department of Health and Social Care Lord Markham “what recent steps His Majesty's Government have taken to encourage more medical researchers to enter into brain tumour research?”
Lord Hunt with Thomas Brayford our Policy and Public Affairs Officer
Responding on behalf of the Government Lord Markham replied:
“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 the capacity for brain cancer research, attracting new researchers, developing the community, and supporting researchers to submit high-quality research funding proposals.
“The TJBCM recently announced two appointments to the inaugural Tessa Jowell Fellowship programme. These 12-month fellowships will support high quality training in neuro-oncology clinical practice and research, to ensure clinicians are equipped with the relevant research skills needed to lead neuro-oncology trials that change practice.
“Additionally, the TJBCM have designated 28 adult Tessa Jowell Centres of Excellence within the National Health Service, which has created a world-class network of brain tumour treatment and research centres to provide the best care and share best practice.”
In a further question Lord Hunt asked His Majesty's Government “what assessment they have made of the Early Access to Medicines Scheme to ensure that brain tumour patients are able to access the most promising treatments?”
To which Lord Markham replied:
“The early access to medicines scheme (EAMS) aims to give patients with life threatening or seriously debilitating conditions access to medicines that do not yet have a marketing authorisation when there is a clear unmet medical need.
“Under the scheme, the Medicines and Healthcare products Regulatory Agency (MHRA) will give a scientific opinion on the benefit/risk balance of the medicine, based on the data available when the EAMS submission was made and the EAMS criteria. The MHRA will make an evaluation of products, including drugs such as for brain tumour treatments, once an application is received.
“If we do receive an application, it is only made public where an EAMS Scientific Opinion (SO) is awarded. All EAMS SOs are published on the EAMS webpage. All drugs that have previously held an EAMS SO are also published on the EAMS webpage.”
These questions and answers are reproduced without comment but there is a lot to go on here much of it covered in recent blogs.
Suffice it to say where answers haven’t been sufficient and satisfactory, we will delve further and where responses are like previous ones and don’t move things forward for current and future brain tumour patients, we will challenge the existing way of doing things because it hasn’t served our community well.
Even though Parliament is now in summer recess we expect unanswered brain tumour questions that we are aware of to be answered by ministers during the break.
Here is a link to keep abreast of brain tumour related parliamentary questions.
The Future Cancer Inquiry, conducted by the Health Select Committee, resumed this week focusing on the GRAIL Europe trial, Cyted products, AI, and cancer screening.
Sara Hiom, Vice President, NHS Implementation & External Affairs, GRAIL Europe, told the Committee that they had just finished the second of the three-year active period of the trial, with the third year of active testing starting in September.
After this, they would wait for an entire year before assessing the final data for the final assessment. Early next year, they would be looking at the interim results, and as a result of the NHS partnership the test could be rolled out to a million other people.
She praised the NHS for allowing them to utilise the existing infrastructure and the centrally collected data, which allowed long-term follow-up of everyone on the trial. GRAIL’s ambition was for a future when cancer was detected in the early stages, making it more treatable and increasing the survival rates.
Marcel Gehrung, Co-founder and Chief Executive Officer of Cyted, said that the technology used by Cyted was a capsule-sponge technology (a capsule on a string was released into the stomach at which point it dissolved, collecting cells from the upper digestive system). Cyted was focused on detecting pre-cancer, especially oesophageal cancer in the at risk population.
Professor Stephen Duffy, Professor of Cancer Screening, Wolfson Institute of Population Health (Queen Mary University of London), said that AI had a huge potential for reading mammograms and breast screening programmes. The current breast cancer screening programme was struggling to catch up after the pandemic, and the staffing pressures were likely to worsen. AI systems had already been shown to be effective for cancer detection in mammograms, even if many people were still treating these as a ‘research issue’.
Also, this week there was a Westminster Hall Debate on the accessibility of radiotherapy sponsored by Selaine Saxby MP.
The debate heard that radiotherapy is the second most effective treatment for cancer and is needed in four out of every 10 cancer cures.
Currently, however, only 61.7% of patients receive their first treatment within two months.
There are also geographical challenges for those who may initially choose to undergo radiotherapy treatments deciding not to due to issues with travel and a lack of specialist staff in their area.
Shadow Public Health Minister Andrew Gwynne asked the Minister what action he is taking to reverse the concerning decline in treatment within two months. He also encouraged the Minister to set out the engagement his Department is having with organisations such as Cancer Research UK on ensuring that services such as oncology are adequately staffed into the future.
In what has been another busy week for Will Quince he responded on behalf of the Government stressing that the Government was taking steps to meet the 62-day target through an intervention model towards the most challenged trusts in the country. He noted that since 2016 the Government has invested £162 million in cutting-edge radiotherapy equipment, which is designed to replace or upgrade more than 100 radiotherapy treatment machines.
And on AI, the Government has announced an additional £21 million of funding that will speed up the roll out of AI across the NHS.
This week has been GBM Awareness Week and we are hugely grateful to our supporters who have told us their stories for us to share with a wider audience.
Stories like that of Wendy Griffin who was diagnosed with a GBM in 2018. She kept her diagnosis to herself to protect her three daughters, Michaela, Laura and Kirstie, until Michaela, who was away at university, noticed her mum’s face was swollen while on a video call.
Sadly, Wendy died in December 2020.
Michaela, who now studies brain tumours in her role as a postdoctoral research fellow at the Wellcome Trust Sanger Institute in Cambridge, said: “I was shocked at how much of Mum we lost so quickly. We lost a lot of her a long time before she died. Her death was long and painful to watch; it wasn’t this one big moment we expected. Brain tumours are so unlike other cancers, you just can’t predict what will happen.”
This GBM Awareness Week, Michaela is sharing her mum’s story to encourage others to sign our petition calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
Help us prevent families in the future from facing the devastation of a brain tumour diagnosis. Sign our petition now.
At the Captain’s Golf Day, I attended on Friday (I have just about dried out after spending over four hours in nearly constant rain) I was so moved that Andy, the captain of the club, was raising funds in memory of his friend and business partner, Mike, who died from glioblastomas last year.
The personal story was front and centre of the day and it is personal stories like Andy and Mike’s that inform and motivate all that we do as a research funding and campaigning charity.
One such story was of course told in Rob Delaney’s book ‘A Heart that Works” - the remarkable and beautiful story of Rob’s son Henry’s short life.
Rob Delaney ©Hollie Fernando
At the time of its publication Rob told us: “I send my love and thanks to everyone supporting Brain Tumour Research and hope that my book offers solace and understanding to anyone who needs it.”
There are other books that may be of interest – find out more about them on our list of recommended brain tumour books
Many of you will be aware of some of the authors, Henry Marsh probably being the best known.
I recommend Jay Jayamohan and my great and much missed friend Martino Sclavi’s book “The Finch in my Brain.”
It is a book about loss and the destruction of a person so please don’t click through if this isn’t the right time for you to be reading this however if you feel you’d like to read more this is an extraordinary book.
Another book I whole heartedly can recommend is the remarkable and hope filled The Breakthrough by Charles Graeber ( if you do decide to buy it do please remember to use Amazon Smile and benefit us).
Kat Lister ©Grace Gelder
Before it overcame him in 2018, writer and journalist Pat Long attacked his brain tumour with a forensic, almost professional curiosity.
We met Pat when he visited our Research Centre at Queen Mary University of London. Pat wanted to meet and talk with Professor Silvia Marino, whose life’s work has been researching the tumour type that was slowly, and then terrifyingly quickly, taking Pat away from his wife and soul mate Kat Lister.
Kat published an extraordinary book, ‘The Elements – A Widowhood’ and 1st September 2022 saw the paperback release of a book that is a story of love, pain, hope and, ultimately, transformation.
Before the book’s initial release, we spoke with Kat who said: “Speaking about the viscerality of grief shouldn’t feel like a radical act just because I am younger than most. Although my story is an unconventional narrative, its function here is to say something universal about loss, love, identity and evolution. Themes every reader, regardless of experience, can relate to.”
This book glides between academic research to the guttural howls of bereavement visiting both the exotic and the mundane and as such is like no other, I have read. This is not a book about brain tumours, it is a book about premature loss, about widowhood and about “making peace with the here and now” – themes that will resonate with so many of our community.
To find out more, to read the beautiful reviews and comments, and to purchase your copy, visit: https://iconbooks.com/ib-title/the-elements-3/
Whether you are sharing your story in a book, in the media or at a golf day it resonates and it will be relevant to your audience because we know that one in three people know someone affected by a brain tumour.
If you are willing to share your brain tumour story please do send an email to my colleagues at email@example.com with just a brief outline of what has happened to you or to your family and please include information on where in the UK you live so we can make sure it is someone who knows the media contacts in your area who will get in touch.
Finally, this week a family’s distress and frustration and our campaigning agenda coalesce in Sarah’s story which was covered by ITV in London.
Sarah Atif was diagnosed with a brain tumour, later identified as a high-grade diffuse midline glioma, in January after experiencing problems with her eyesight and becoming lethargic.
The seven-year-old, from Harrow in North West London, underwent a shunt surgery and a biopsy before having six weeks of radiotherapy.
Her family is now crowdfunding to enable her to access a clinical trial drug which is only available overseas.
In February, Sarah started radiotherapy at the University College London Hospital (UCLH).
At first her symptoms improved, but, after three weeks, the weakness in her right-hand side returned and she began suffering from headaches. She also became unresponsive and unable to understand Hindi.
It is not yet known whether this is due to progression of her tumour but her doctors have agreed the best chance of prolonging her life lies in a clinical drug not yet available in the UK.
Uroos, Sarah’s mother said: “We spoke to a hospital in the US about a trial they were running using a drug called ONC201. It’s thought it can prolong life by killing cancer cells and may be more effective in patients with tumours like Sarah’s. However, the trial would have required a £200,000 deposit, so we have been directed to similar trials taking place closer to home.
“Unfortunately, the drug isn’t provided in the UK, but it is in the Netherlands, where Sarah has been accepted, and in France, where we’re still hoping she will be. We estimate it will cost about £60,000 a month for her to have this treatment in the Netherlands and almost half that in France.
“We’ve made up our minds to do whatever’s necessary to save Sarah, even if that means going abroad for treatment.
“ If it doesn’t help, at least we will be satisfied that we did our best for her. We’re a close-knit family and the thought of losing Sarah to this cruel disease is unbearable.”
We understand that ONC201 will be part of Phase III clinical trials in the UK soon, however trial eligibility criteria could mean that UK patients may still have to travel overseas to access it.
The case for compassionate use is indeed a strong one when there looks to be efficacy and there are no other options.
It is a complicated situation, but the fact remains that UK families are having to travel abroad to access and self-fund treatments for them or their family members.
We will continue to ask why is this happening and we won’t rest until we have the answers and from them the solutions.
This is why we do what we do and thank you all for joining with us.