“For thousands of patients and their devastated families, every day is brain tumour awareness day”

3 min read
 by Maria Lester

In August 2014, in the small hours of the morning, I sat in the darkened bedroom of my 26-year-old brother as his life was snuffed out by an unspeakably cruel brain tumour. Stephen had been training to be a pilot in the RAF when he was first diagnosed; he had been strong, fit and talented – someone for whom even the sky wasn’t the limit. Afterwards, I Iay on my parents’ couch and sobbed, while they had to call out a doctor to confirm his death. When I was finally all cried out, I made a silent promise that this would not be the last page in Stephen’s story.

It wasn’t.

In 2015, to mark the first anniversary of his death, I wrote a magazine article and launched a petition with the help of the charity Brain Tumour Research, calling on the Government to ‘fund more research into brain tumours, the biggest cancer killer of under-40s’. This is an area that has been historically underfunded for decades, with just 1% of the national spend on cancer research allocated to the disease. And yet statistics show that a staggering one in three of us knows someone affected by a brain tumour.

As I sat alone typing, I could never have imagined then the extraordinary path of events the petition would lead me down over the next eight years. I asked some friends to share it, hoped we might hit the 10,000 names we needed to get a Government response, and for a while that was about as far as it went.

Then, out of the blue, someone from the Petitions Committee got in touch to say that they had decided to make it the subject of their first-ever inquiry. In the months that followed, patients, charities and medical experts alike all gave evidence, and momentum began to build within the cancer community. The Committee’s report eventually concluded that “successive governments have failed brain tumour patients and their families for decades. The Government must now put this right”.

Support came from some very surreal places. Celebrities such as Peter Crouch, Sarah Beeny and Carol Vorderman helped raise awareness on social media. Piers Morgan shared my feature on Twitter, calling it a “moving, powerful article”. The number of signatures began to soar as the six-month deadline ticked down. If we reached 100,000 names in time, we hoped it would trigger a debate in Parliament.

In the end, we hit the target with just five days to spare, and the petition closed with 120,129 signatures. A debate was scheduled for April 2016 at Westminster Hall, and my family and I were in attendance along with more than 70 MPs, listening intently as it was unanimously agreed more needed to be done.

Things continued to snowball. The Department of Health and Social Care (DHSC) established a Task and Finish Working Group on brain tumour research, chaired by Professor Chris Whitty. In early 2018, my father Peter Realf and I were invited to attend the Brain Tumour Round Table Summit at Whitehall, alongside the then Health Secretary Jeremy Hunt and Tessa Jowell, who herself had been diagnosed with a tumour. Around the same time, the Government pledged £40 million for brain tumour research over the next five years, boosted by a further £25 million from Cancer Research UK. The campaign seemed to have been an overwhelming success, a shining example of democracy in action.

Peter Realf, Maria Lester and Liz Realf

But then Covid struck.

Suddenly, the DHSC had a new crisis to deal with. Brain tumour campaigners were unable to come together. Many cancer trials ground to a halt. Ministers came and went. So did Prime Ministers.

Other issues had emerged, too: the limited number of clinical trials available to brain tumour patients (even taking Covid out of the equation); the urgent need for less red tape and more joined-up thinking, and the challenges of attracting and retaining medical talent when other areas of research – for example, breast cancer – were better funded.

The momentum that 120,000 people had worked so hard to build began to slow. In February, it was reported that only £15 million of the Government’s promised £40 million had materialised. Given that 88% of patients diagnosed with brain cancer will die within five years, this felt like a heartbreaking failure: both for the thousands of patients and their families who had their hopes pinned on new research, and for democracy itself.

But this week, two major new twists occurred in this long-running tale. First, the All-Party Parliamentary Group on Brain Tumours (APPGBT), which had been holding its own inquiry, published a landmark report report calling for brain tumour research to be made a “critical priority” and noting that “this inquiry has found that the current funding system is unfit for purpose”.

“We must recognise a uniquely complex disease with a unique response,” wrote APPGBT chair Derek Thomas MP. “For those in the brain tumour community, this is an emergency.”

Peter and Maria at the Inquiry Report launch

Shortly afterwards, it was announced that another brain tumour debate will be held today (Thursday 9th March), this time in the main chamber, where I hope it will finally get the recognition and increased investment it so desperately deserves. Campaigners are now calling on the Government to develop a strategic plan for adequately resourcing and funding discovery, ring-fencing £110 million of current and new funding to kick-start this initiative.

Whether the Government will make that commitment – and, more importantly, actually uphold its pledge this time – is something that should concern us all. For brain tumours do not discriminate: they can target people of any age, gender and background. Some days I catch myself staring at my son, my husband, my parents, my friends, even myself in the mirror, and wondering: could you be next? 

Credit: Daily Express

The debate is timely: March happens to be Brain Tumour Awareness Month. But for the thousands of patients living with this terrible disease, or the devastated families who will never get to see their loved ones again, every day is brain tumour awareness day.

I have met lots of inspiring and courageous patients over the past eight years, many of them no longer with us. The inimitable Wanted singer Tom Parker, who I had the privilege of campaigning alongside before he died last year aged 33. Amani Liaquat, who had graduated with a first-class law degree before her glittering future was cut short at 23. Anna Swabey, who blogged so bravely about her battle, and passed away aged 25 the day before what should have been her wedding. When I watch the debate this week, it will be their faces I picture, along with the wonderful brother I would give anything to see again.

And whose story I will keep on telling until we find a cure.

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