Catherine Fraher, director of services at The Brain Tumour Charity, explains how partnerships are creating the ecosystem to ensure that everyone affected by a brain tumour lives a longer and better life

The Brain Tumour Charity collaborates with its community to effect huge change. There are remarkable people within that community.

One of them was Glenn Winteringham, a much-valued NHS leader. As chief digital officer at the Royal Free group of hospitals in London, Glenn was an advocate for innovation in healthcare enabled by the best tools and technology.

But after being diagnosed with a brain tumour, Glenn was given only months to live. He sadly died just before the Health Excellence Through Technology (HETT) Show in September.

The partnership between GovNet’s HETT 2024 team and The Brain Tumour Charity was formed in his memory. Working with GovNet meant that the charity’s aims – to raise awareness and build partnerships in the healthcare space – were prominent at the event.

From GP to lab technician, we can work together to address our mission: to enable all those affected by brain tumours to live longer and better lives.

It’s a huge challenge. High grade brain tumours are one of the least survivable cancers, killing more of the under 40s than any other cancer.

In the UK, around 34 people a day are diagnosed with a brain tumour. But it’s not one disease, so there isn’t one cure or treatment. There are more than 100 types of brain tumour, classified by the World Health Organisation according to where they are situated and how they grow.

Those factors also dictate symptoms which may include excruciating headaches and problems with vision, mobility, memory and communication. It can alter your very personality, unmaking you as a person.

Tackling that takes a whole ecosystem. It’s through partnerships that we’re building, that ecosystem, so that we can diagnose brain tumours faster, ensure people have the best treatment, the care they need post-treatment, and – ultimately – find cures.

Recognising symptoms

Joe Rawcliffe from Billinge near St Helen’s, Merseyside, is another member of the brain tumour community. He died in January 2020, aged just 26.

His father, Richard set up the Northern Joe Fund which has raised an incredible £116,000 for The Brain Tumour Charity to date – as well as increased awareness.

Richard explained during his keynote speech at HETT: “Joe’s symptoms started in late 2019 with a stiff neck, then some bowel and bladder function changes – none of which the GP felt were linked or of major concern.

“By early November he was struggling to swallow which was put down to acid reflux. Then he started slurring his words. I took Joe to A&E in desperation. He was admitted and within 48 hours, he’d had a scan and was diagnosed with a brainstem glioma.

“On New Year’s Eve, he had a six-hour operation to remove some of the tumour but didn’t regain consciousness and died on  3 January 2020.

“Arguably, Joe’s prognosis would not have been great even if he had been diagnosed earlier but there may have been more options available to him and, crucially, we would have had more time to come to terms with what was happening.”

As Joe’s story illustrates, brain tumours are complex. Symptoms can be attributed to other conditions. Tumours can’t always be removed because of the risk of damage to functions controlled by that part of the brain. Then there’s the blood brain barrier – a self-defence mechanism that can prevent medication from reaching the tumour.

These complexities are why standard treatments haven’t changed in 20 years.

They are why we need to be equally relentless.

Partnerships and collaboration

We cannot do that without strong partnerships to transform the research landscape, increase research capacity, deliver clinical trials at scale, give us kinder, more targeted treatments and drive translational research to push innovation rapidly from concept to clinic.

That’s why since 2017, The Brain Tumour Charity has ploughed £50 million into programmes we believe will profoundly improve outcomes for people with brain tumours.

This includes funding laboratory-based ‘discovery’ work, which helps find vulnerabilities in brain tumours that can then be targeted by new or existing drugs and building systems where researchers can test potential new treatments at scale.

Our Quest for Cures grants are awarded to game-changing researchers like Professor Marcel Kool who is testing drugs to treat medulloblastoma – one of the most common aggressive childhood brain tumours. Our Translational Award takes promising new drugs or technologies and partners them with industry standard drug development, to speed up the time it takes for them to make it from lab to clinic. And our Future Leaders programme attracts and retains the brightest minds globally, by supporting their ground-breaking research into things like the tumour microenvironment and making tumours susceptible to immunotherapy.

Our aim is to build a body of knowledge and then get it over the line, to give people a fighting chance at survival.

Campaigns & action

It’s why we’re campaigning too. In March 2024, more than 52,000 people signed our open letter calling for a National Brain Tumour Strategy and now the community is writing to their local MP in droves.

We’re members of the Less Survivable Cancers Taskforce, Cancer 52 and the Tessa Jowell Brain Cancer Mission, lobbying for better outcomes so that we all benefit.

And our relationships with national consortia like the NIHR are pivotal to attracting new researchers into the field and to developing novel therapies.

We’re also exploring how AI could find patterns in large data sets that could link clinicians, researchers, technology and pharma-partners in new areas of research.

All that work could be made easier with timely diagnoses, leading to better outcomes, fewer side effects, more choice in treatment and perhaps the chance to join clinical trials.

To that end, we’ve trained more than 4,000 optometrists to identify the early signs of a suspected brain tumour when they’re conducting eye tests.

We work with primary care teams so that when patients present with a combination of brain tumour symptoms like those Joe experienced, GPs consider the possibility of a brain tumour and have the confidence to make an urgent referral.

We’re supporting emerging technologies like blood, verbal fluency and tear duct tests which could aid diagnosis and lead to quicker referrals for MRI scans.

We prompt the general population to seek help for their symptoms earlier too. Three years into our Better Safe Than Tumour campaign, nearly twice as many people can now name at least one brain tumour symptom compared to when the campaign began!

There’s further cause for optimism as we strive to improve quality of life for patients. We were involved in a recent breakthrough for children affected by a specific tumour type. Instead of gruelling chemo and radiotherapy in hospital, they are now eligible for an oral treatment on the NHS which they can take at home.

Support & information

Meanwhile, we offer comprehensive support and information services to those who need us right now. This includes a phone helpline, counselling, online support groups, printed resources, and specialist services for children, families and young adults.

Here too, everything’s powered by partnerships. Relate supports our counselling service, Spread A Smile develops our events, and Citizens Advice shores up advice on benefits and money, while law firms Winckworth Sherwood and DLA Piper advise us on topics like driving licences and employment rights.

We are certain that further progress will come as this ecosystem grows.