Funding for research into brain tumours
My brother Stephen Realf was just 26 when he died from a brain tumour. As the first anniversary of his death approached, I decided to write an article about his short life for YOU magazine – where I work – to try to raise awareness of this cruel illness.
While researching my piece, I came into contact with a charity called Brain Tumour Research, which really opened my eyes to some shocking statistics. They told me that brain tumours were the biggest cancer killer of children and the under 40s, that they were on the rise (up by around 25% since the 1970s) and yet they receive just 1.5% of the national spend on research into cancer. (To put this into perspective, brain tumours received just £35 million out of £4.5 billion spent on cancer research between 2002 and 2012, compared with £351 million for breast cancer and £290 million for leukaemia.)
Starting a petition
I was deeply saddened by these figures, so I decided to end my article by launching a petition calling for increased funding for research. It was easy to set up – I just had to find five friends to support it – and after it launched I was able to easily track the number of signatures online. A couple of months after the petition launched, I heard from the Petitions Committee, who had decided to make it the subject of their first ever inquiry. Along with charities, medical experts and patients, I was invited to Westminster to give evidence – and I felt this was a wonderful opportunity for all of us to make our voices heard. Later, when the Committee's excellent report came out, it stated that "successive governments have failed brain tumour patients and their families for decades." That felt like a real milestone in the campaign.
About a fortnight before the petition closed, I was still about 40,000 signatures short of the 100,000 needed for parliament to consider a debate. It seemed like a tall order, but with the help of family, friends, colleagues, Brain Tumour Research and others – especially the brain tumour patients and their families who shared their own moving stories in the media – we managed to hit the target with three days to go, and the petition eventually closed with 120,000 names.
In April this year, I was invited back to Westminster to watch the debate. It wasn't quite the argumentative discussion I was expecting, as there was such overwhelming support for more research, but I did feel very privileged to have the chance to see democracy in action!
Government action on brain tumour research
This summer, the Government issued its formal response to the inquiry report, acknowledging that "a greater level of brain tumour research is urgently needed so that patients can experience better outcomes". It has now promised to create a working group of clinicians, charities and officials to look at ways to address the issue, and I very much hope it will be the start of real, meaningful action.
This isn't the end of my quest. There are still young lives being lost to this cruel disease: in fact one of the inspirational young patients I met through the campaign died just yesterday while I was writing this piece. A petition alone is not going to change the world. But perhaps – just perhaps – it might catch the attention of the politicians who can.
Find out more
The funding for research into brain tumours inquiry was the first undertaken by the Petitions Committee. The inquiry was launched in October 2015 and the Committee heard evidence from those personally affected by the issues raised in the petition as well as medical experts and charities. The Committee published its findings in its report in March 2016. The Committee also organised a debate on the issue in April 2016.
The Petitions Committee looks back at what your petitions have achieved in its first year as part of UK Parliament Week 2016. UK Parliament Week is a programme of events and activities that connects people with the UK Parliament.
Image: The Realf family and Sue Farrington Smith
© Brain Tumour Research