Brain tumours kill more children and adults under the age of 40 than any other cancer
The indiscriminate loss and the O'Shaughnessy Review
We were deeply saddened to learn on Monday that Laura Nuttall had died.
Her mother Nicola wrote on Twitter “I'm heartbroken to share the news that we lost our beautiful Laura in the early hours of this morning. She was fierce & tenacious to the end & it was truly the honour of my life to be her mum. We are devastated at the thought of life without our girl, she was a force of nature”
Her father, Mark, wrote “Her flame burned so brightly, unfortunately, not nearly for long enough.”
Laura and mum Nicola supporting Wear A Hat Day earlier this year
At the time that the news was made public by the family the BBC programme Morning Live was filming in our offices.
This was for an item to be broadcast next Monday (fingers crossed) about the current EastEnders brain tumour storyline. As well as interviewing us, the BBC spoke with the actress Danielle Harold, who plays Lola Pearce in the show, and brain tumour patient Kylie Weatherby.
For many of you, EastEnders may make for very difficult viewing as Lola’s condition worsens.
Her loved ones are struggling to deal with the difficult emotions they are experiencing as they prepare themselves for the final days of her life.
We recognise that these scenes may be upsetting for those who have been through, or are going through, a similar journey.
For help and support please click here.
Danielle Harold playing Lola Pearce at the beginning of the EastEnders brain tumour storyline.
In a previous tweet Nicola wrote “I’m not an Eastenders regular, but it’s painful to watch Lola’s story mirroring our own. I wish this was just a tv storyline for us.”
Laura was diagnosed after a routine eye test and her story cruelly illustrates the indiscriminate nature of brain tumours.
No one ‘deserves’ to get cancer – of course they don’t.
However, we are becoming more aware of the mitigating factors in some cancer diagnoses that we each can influence.
The most obvious example is the relationship between cigarette smoking and lung cancer incidence.
In this age of increased medical and scientific understanding we don’t have any lifestyle associations that could impact on the likelihood of a brain tumour diagnosis.
Hence so many stories of premature, unfathomable loss. How can we successfully combat a disease if we don’t know what causes it?
Laura was 23 when she died the same age as another brave soul lost to this devastating disease, Amani Liaquat.
Amani Liaquat died in February 2022 – here is what I wrote about that remarkable woman then:
“This tragic news has had a huge impact on those of us at Brain Tumour Research who had the privilege to know Amani and her extraordinary family. Amani’s story touched everyone who heard it, and that she was prepared to share so much of herself with others speaks volumes of the person she was.
“We cannot overstate just how many people now know about this vicious disease through Amani’s bravery and her commitment to make a difference by campaigning and raising awareness. She and her family spoke out at a time when it would have been easier for them to retreat and for that, along with our sadness, we have such respect and admiration for this remarkable young woman who has left us far too soon.”
“Her legacy will be with us and drive us on to find a cure for brain tumours.”
I found myself saying something very similar on Monday when being asked about Laura on Global Radio.
Two young women taken from their families at 23, two young women pictured frequently on social media on their graduation day wearing mortar boards – so full of promise and potential – what devastation, what loss, what despair and anguish - we need no more motivation to be the best we can be for brain tumour patients.
Still these desperate stories are told to, and shared by, my colleagues at Brain Tumour Research.
Stories like that of Aaron Wharton who was just 7 when he passed away last month.
Aaron’s story was recognised in the Welsh Government's short brain tumour debate last week.
It was also recognised by Hollywood star and Wrexham AFC co-owner Ryan Reynolds who paid tribute to Aaron in a surprise video.
The actor thanked people for being at The Racecourse (Wrexham’s home ground) and taking part in a firewalk to help fund vital research into brain tumours.
He said: "There’s absolutely no reason why somebody like Aaron should not be with us here today.”
There may be ‘no reason’ but too many brain tumour patients aren’t here, with their families today, and we believe that is due to lack of research and we are angry about it because we care and because we want to be sharing optimistic stories of progress, new treatments and hope not of premature loss and lack of options.
That is why we do what we do and why you campaign alongside us.
Ryan Reynolds and Aaron Wharton
In February 2023, the Government commissioned an independent review to offer recommendations on how to resolve key challenges in conducting commercial clinical trials in the UK and transform the UK commercial clinical trial environment.
The review sets out 27 recommendations, including both priority actions to progress in 2023 and longer-term ambitions for UK commercial trials.
The review was conducted by former Health Minister Lord James O’Shaughnessy who consulted closely with industry and a wide range of stakeholders across the UK clinical trials sector and was published yesterday (Thursday) evening and can be read in full here.
The government response welcomes all recommendations from the review, in principle, and makes 5 headline commitments backed by £121 million over 3 years. These commitments are to:
- Substantially reduce the time taken for approval of commercial clinical trials, with the goal of reaching a 60-day turnaround time for all approvals
- Deliver a comprehensive and mandatory national approach to contracting
- Provide ‘real-time’ data on commercial clinical activity in the UK
- Establish a common approach to contacting patients about research
- Establish clinical trial acceleration networks (CTANs)
An implementation update, setting out progress made against these commitments and a comprehensive response to the remaining recommendations, will be published in the autumn.
Lord O’Shaughnessy’s report runs to some 70 pages and we will run a forensic eye over it in the coming days but we wanted to bring the news of its being published hot off the press.
This review was published as the Chancellor of the Exchequer Jeremy Hunt unveiled a £650 million war-chest to fire up the UK’s life sciences sector and drive forward the government’s priority to grow the economy.
The multi-faceted ‘Life Sci for Growth’ package brings together 10 different policies including £121 million to improve commercial clinical trials to bring new medicines to patients faster, up to £48 million of new money for scientific innovation to prepare for any future health emergencies, £154 million to increase the capacity of the UK’s biological data bank further aiding scientific discoveries that help human health, and up to £250 million to incentivise pension schemes to invest in our most promising science and tech firms.
The announcements improve the regulatory environment for Life Sciences companies and our approach to UK commercial clinical trials.
As part of this, the Chancellor has committed to make it easier for revolutionary healthcare products to get to NHS patients by cutting the regulatory burden of approving clinical trials, and committed £121 million, made up of new and existing funding, to speed up clinical trials and improve access to real-time data via new Clinical Trial Acceleration Networks.
Jeremy Hunt also committed to increasing lab space through pledging to reform planning rules to help scientists. Proposals including local authorities taking greater account of R&D needs in their planning decisions.
In Scotland Monica Lennon MSP has received answers to her two brain tumour related questions:
- To ask the Scottish Government what data it holds on how many GPs are able to send patients directly to diagnostic tests, such as MRI and CT scans, to detect brain tumours
- To ask the Scottish Government how much funding is currently going towards the development of new diagnostic tests and tools to detect brain tumours, and whether this will increase in the future
Monica Lennon at our Wear A Hat Day drop in at Holyrood in March
Michael Matheson MSP, Scottish Cabinet Secretary for Health and Social Care responded:
1)The Scottish Government does not hold data on how many GPs are able to send patients directly to diagnostic tests. GPs make appropriate clinical decisions based upon the individual assessment of patients, this includes referrals for diagnostic tests
2)The Scottish Government is not currently directly funding any research projects or fellowships on the development of new diagnostic tests and tools to detect brain tumours. The Scottish Government does not hold information on the research spend of other funders. However, the National Cancer Research Institute database indicates that £2,846,401 was spent on early detection, diagnosis and prognosis of brain tumours in the UK in 2020-21 by charity and public funders
So now we know.
In February 2022, the then Secretary of State for Health and Social Care launched a call for evidence to inform the development of a 10-Year Cancer Plan for England.
As reported in last week’s update, following a call that we were on with Health Minister Helen Whately, we were assured that although the plan has now been dropped in favour of a Major Conditions Strategy, that input and feedback made for the original plan would be carried forward to the planning of the new strategy and therefore the input of charities back in October last year would not be lost.
There has now been a further response from Government who have said that in response to the 10-year plan call they received 5,557 responses that were eligible for inclusion in their analysis:
- 4,822 were from individuals who live in England and wanted to share their personal experiences
- 735 were from professionals or organisations who operate in England or across the UK
The DHSC has now launched their call for evidence on the Major Conditions Strategy and it will be open for six weeks.
This call for evidence complements and will build upon the two calls for evidence on mental health and cancer.
“These provided very useful insights, which will be considered in the development of the major conditions' strategy.“
For our community the request is for no more than 500 words addressing “How can we better support those with cancer?”
An important question and we will submit our thoughts on the role of research and access to clinical trials that bring hope before the deadline.
We do have another survey here too:–
Research on improving cognition in brain tumour patients following surgery – On behalf of Ali Ahmad, Neurosurgical trainee at the Walton Centre in Liverpool, this survey is for patients and their loved ones affected by a glioma-type tumour. It is designed to help guide the development of research into transcranial magnetic stimulation (TMS) following surgery.
We were very interested to hear Sir Keir Starmer unveil Labour’s mission to create an NHS fit for the future this week.
He spoke of three ‘shifts’ - “Shifts we must place at the heart of everything we do on health.” (It is shift three that really caught our eye).
- Shift one – we must move care away from hospitals and closer to the community, the NHS must become a Neighbourhood Health Service
- Shift two – we must move from a mind-set that views health as all about sickness to one where we put prevention first – right across society.
- Shift three focused on technology. Sir Keir said “Technology provides more choice and power for patients but it also saves lives.” he continued ”But to make this happen innovators need one route into the NHS not many, incentives to innovate throughout the system, fewer barriers to adoption, fewer hurdles to clear, less bureaucracy, more clinical trials, and a government that uses its full power to back our world leading life sciences.”
This all sounds good but, as Health Minister Will Quince MP said last week at the brain tumour roundtable, brain tumours are an issue that ‘transcends party politics’, and we agree and I am sure the families enduring such devastating loss - Laura’s, Amani’s, Aarron’s and far too many more would agree – we need to make a difference and we need to campaign together.
We just need change.
If you share our vison to find a cure for all types of brain tumours and would like to join us in our endeavour there are opportunities to work with us posted here and they currently include a new Chief Executive, Trustees and joining our Fundraising, Finance or Supporter Care teams.
Some of our team supporting Wear Grey for a Day in 2022