Comedian, actor and writer, Rob Delaney’s “beautiful, bright, gloriously alive” son Henry was one when he was diagnosed with a brain tumour. He was just two when he died.
Rob’s book about Henry, ‘A Heart That Works’ was released on Thursday and has already featured in The Sunday Times, on Radio 4’s Today programme and on The One Show. It is an intimate, unflinching and fiercely funny exploration of loss – from the harrowing illness to the vivid, bodily impact of grief and the blind, furious rage that follows, through to the forceful, unstoppable love that remains.
Ahead of the book’s launch we were in touch with Rob who sent his love and thanks to Brain Tumour Research supporters.
He said: “It is almost certain that some readers of this will, like me, have lost a child to a brain tumour. This book is written out of love for them, but it will also paint a picture for friends and strangers who’d like to know what the death of a child does to a family.
Brain Tumour Research has been doing phenomenal work in search of treatment and a cure for many years. I’ve visited the Blizard Institute [the location of our Centre of Excellence at Queen Mary University of London] to learn more about their work and was astonished and grateful to see how many people are very hard at work trying to find ways to treat and perhaps one day cure brain tumours. Wouldn’t that be something?
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.”
I was able to read the book before its launch and the description of the unfolding of this devastation, that forever leaves Rob’s rainbow with a black band in it, is as unforgettable as it is moving – the visceral description of his grief screams out from the page. However, this book is also so full of love, it is as if it feels warm to the touch and illuminates your face when you read it.
Scriptwriter Russell T. Davies, whose husband Andrew died of a brain tumour in 2018 says of the book: “It is a gift, it's an immense piece of work. It's brilliant. It's needed, like a deep, physical draught of something strong and cold.”
Whilst television presenter, producer, novelist and comedian Richard Osman said: “What a read. Its beauty and pain and humour and anger will help many people. This is a beautiful monument.”
A Heart That Works can be ordered online through various retailers by clicking here.
The Brain Tumour Research fifth annual researcher workshop took place this week with nearly 50 researchers attending from our three Research Centres of Excellence, as well as the BRAIN UK tissue banking facility.
It was the first in-person workshop for a number of years due to the pandemic and the two-day meeting hosted talks from each of our Centres, flash talks from early-career researchers and poster presentations.
We heard how to translate lab-based science into clinical trials and learnt more about the two initiatives that we have recently funded with partners the Tessa Jowell Brain Cancer Mission, and brainstrust.
A critical aim of the workshop was to see the Brain Tumour Research-funded scientists furthering their relationship with each other, identifying potential areas of joint interest and collaboration, and also with us as a charity, extending from being focused on research to working with us to fundraise and campaign.
Dr Karen Noble, our Director of Research, Policy and Innovation, said: “This researcher workshop has been a fantastic opportunity for our Brain Tumour Research-funded scientists to get together, discuss their work and hopefully spark new ideas and collaborations. It was an inspiring event which celebrated the achievements of both the charity and the researchers as we continue to work together to accelerate progress towards our mission and goals.”
We delivered a dedicated campaigning session where we updated researchers on our lobbying work and asked them to think about how they might input into the forthcoming APPGBT inquiry report giving them the opportunity to consider the vital and complex questions that surround research funding, the role of early diagnosis and the Government role in supporting both the development of clinical trials and the basic research that underpins trial delivery.
Brain Tumour Research supports basic research (also known as discovery science) and early-stage translational research. This is a crucial step in drug development since it lies at the very start of the whole process. If this research doesn’t happen, there will be no new discoveries progressing to drug discovery, drastically restricting the pipeline of future new treatments.
Basic research is costly and risky. How we manage these challenges is key to our successful approach. By establishing Centres of Excellence, the researchers who joined us this week work in partnership with a wide range of organisations to maximise the funding that can be put towards brain tumour research. The success of our Centres reflects a collective effort from three main routes:
- Brain Tumour Research - To establish and provide core funding for each Research Centre of Excellence
- Host Universities - To provide infrastructure, facilities, a vibrant research environment and salary support for senior researchers.
- Other funders - Government, other medical research charities and industry award funding to our Centres.
The funding provided by Brain Tumour Research acts as a significant lever in attracting grants from many other sources but more than ever before a collective effort is required, engaging charities, universities, government, industry and patients. Working together in this way is central to our approach in finding new treatments for brain tumours.
This has never been more important to our community, and this has been demonstrated by the huge number of responses to our patient survey (which has now closed)). The questions looked closely at the patient experience of clinical trials, knowledge of such trials and the researching, accessing and funding of treatments not available on the NHS. The pathway away from patients and their families having to put their faith in hugely expensive private treatments comes from discovery science and the room of researchers at our workshop contained the hopes of all of us for a future where our vision to find a cure for all brain tumours is realised.
This is all happening at a time when NHS patients are losing access to innovative treatments as UK industry clinical trials face collapse
The report ‘Rescuing Patient Access to Industry Clinical Trials in the UK’ shows that the number of industry clinical trials initiated in the UK per year fell by 41% between 2017 and 2021, with cancer trials falling by the same margin.
The report also shows that between 2017 – 2021:
- The number of Phase 3 industry trials initiated in the UK – those with medicines closest to market – fell by 48% between 2017 and 2021
- The UK has fallen down the global rankings for late-stage clinical research, dropping from 2nd to 6th in Phase 2 trials and 4th to 10th in Phase 3 trials between 2017 and 2021
- Patient access to industry clinical trials on the National Institute for Health and Care Research Clinical Research Network (NIHR CRN) fell from 50,112 to 28,193 between 2017/18 and 2021/22 – a 44% drop.
These findings point to a clear and serious threat to the long-term future of industry clinical research in the UK – and the benefits it brings to patients, the NHS, and the UK economy.
Patients’ shrinking access to treatments through clinical research is particularly concerning for the health outcomes of patients with limited treatment options in routine care, such as the estimated 3.5 million people living with rare diseases in the UK
As part of our campaigning endeavours to educate, inform and drive change to improve the situation for brain tumour patients in the future this week we have written to key political stakeholders like the Secretary of State for Health and The Secretary of State for Business, Energy and Industrial Strategy. We have noted too that the new Chancellor was the Secretary of State for Health when £40 million was made available for brain tumour research in 2018. At the time Jeremy Hunt said, “Our ambition is to deliver a big uplift in the funding of brain cancer research" and for him brain tumours are a personal cause too as his mother was affected and she sadly died in January this year.
The situation within Government remains unstable as we draw this week’s update to close but one certainty is that whoever are the key political stakeholders needed to engage with our cause going forward, Brain Tumour Research campaigners will keep them informed of what we do and why. You will be able to really assist us in this in the coming weeks by asking your MP to join a meeting of the All-Party Parliamentary Group on Brain Tumours (APPGBT) which will be taking place at Westminster on Wednesday 23rd November. More details, timings and an agenda to come plus I’ll provide a full template email to send out inviting your constituency MP to join us in due course.
Thank you for all you have done, are doing and will do in the future.
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