Leeds man diagnosed with brain tumour after having seizure while driving welcomes report demanding action for patients

Rory Burke, 51, was diagnosed with an oligodendroglioma brain tumour in February 2012 after having a seizure while driving to work. He has offered his backing to a cross-party report demanding the Government provide more money to help those affected by brain tumours.

Rory said: “Because the tumour was close to my motor strip, I had an awake craniotomy. My operation in March 2012 had to be stopped midway because I had a seizure. During the rescheduled operation, I experienced around 15 seizures as I lay awake on the table.

"Despite that, the surgery went well and they removed about 80 per cent of the tumour, but afterwards, I couldn’t move my left arm and I was really scared. The nurses tried to reassure me and said that I would need physiotherapy. I was also offered chemotherapy and radiotherapy, but they said it wasn’t essential, so I chose to hold off, as I had already so much to deal with.”

A routine CT scan carried out in January 2016 revealed the remaining tumour was beginning to grow again, prompting Rory to undergo chemotherapy and radiotherapy treatment. He had been working in recruitment but left his role due to his epilepsy and to focus on his recovery.

Rory has since thrown his support behind fundraising for Brain Tumour Research, raising more than £7,000 through cycling and swimming challenges. The cross-party report he has backed, titled ‘Pathway to a Cure – breaking down the barriers’, calls out the current funding system as “unfit for purpose”.

Among the focus areas of the report is a so-called ‘valley of death’. The inquiry claims potential new treatments discovered in the laboratory fail to reach patients because of “unnecessary complexity” in the way research is funded.

Rory said: “Raising money for research into brain tumours is so important because, without research there’s no progress. Just after Tessa Jowell [former politician] died in 2018, the Government pledged to invest £40m into brain tumour research, but so far just £15m of this has been allocated. Yet, just 12 per cent of those diagnosed with a brain tumour survive beyond five years compared with an average of 50 per cent across all cancers. This is totally unacceptable for the thousands of families which face the news each year that a loved one has been diagnosed with this devastating disease.”

The report has been jointly hosted by Brain Tumour Research and the Tessa Jowell Brain Cancer Mission by the All-Party Parliamentary Group on Brain Tumours (APPGBT). Derek Thomas, chair of the APPGBT, said: “A total of £40m in investment has been promised since 2018. This gave cause for optimism and heralded a very welcome shift in focus especially considering the historic underfunding of research into brain tumours which has received just one per cent of the national spend on cancer research since records began.

"However, our investigations have revealed a concerning lack of deployment of these funds with just £15m reaching the hands of researchers in the five years since it was promised. We are hearing that the current system is too complicated, it doesn’t connect laboratory work with what is happening in clinics, that there is no up to date and robust database for people to understand if they could be eligible for clinical trials and that far too little of the money previously promised has reached the hands of the researchers who can make a difference.

“The sad fact is that brain tumour patients do not have the luxury of time. The Government must act now in order to recognise brain tumour research as a critical priority, appoint a champion, and ringfence sufficient funds to make a difference.”