East Sussex brain tumour patient calls on Government to fund more research into disease

Chantelle Perrault, of Hastings, was diagnosed with a grade 3 glioma type brain tumour after waking to seizures last month.

The 25-year-old went to hospital twice, following full-body seizures which left her unconscious, but was turned away without any scans both times.

Frustrated, she sought a consultation with a private neurologist and has now undergone private treatment, paid for in part using crowdfunding donations. She is currently waiting to start radiotherapy and chemotherapy.

Chantelle has also been forced to put Team Player Recruitment, the recruitment company she had set up just a month before being struck ill, on hold.

She said: “For six years I’d worked in recruitment in London but I left about a month before everything happened to start my own recruitment company with my dad.

“We were doing well, we’d done our first few placements of people and brought on quite a few clients. It was just starting to kick-off when we were forced to put it on hold because of my treatment.”

Chantelle’s first symptom was a twitch in her left leg, which she ignored for two weeks after attributing it to her first session with a personal trainer.

She said: “I went out to celebrate putting a deposit on an office building and woke up around 3am to find the twitch I had been experiencing had turned into a full leg jerk. I shouted out for my dad, then had a fit and fell unconscious for several minutes.”

Chantelle was rushed to hospital but sent home and told to wait for the fit clinic to get in touch.

She said: “I thought maybe it was related to having alcohol the night before but then two days later it happened again. I woke up with a leg jerk at 6am and had another full seizure.

“I went back to the hospital, but, again, was sent home without having any scans. This is when I decided to reach out for medical help privately using money from savings.

“Following a video consultation, I was put on the anti-seizure drug Keppra and referred for an MRI scan the following day, which is how I found out about the mass on my brain.”

By the time the fit clinic contacted Chantelle two weeks later, she already had a private surgery booked to have her tumour removed and a GoFundMe page set up to help pay for it.

She said: “It appears we got it just in time too because it was right next to my brain’s motor stem, which controls movement.

“I’m pretty sure that, left much longer, it would have spread to inoperable parts of my brain at which point my treatment options would have been limited.”

Chantelle is now campaigning alongside the charity Brain Tumour Research to help its petition to increase research funding reach 100,000 signatures, in the hope of prompting a parliamentary debate.

The charity is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.

It wants the Government to recognise brain tumour research as a critical priority and says the increase in research investment would put brain tumours in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.

Chantelle said: “This experience has taught me a lot and I was shocked to learn that brain tumours are the biggest cancer killer of children and young people under the age of 40, yet they have received just 1% of the national spend on cancer research since records began in 2002.

“As something that’s affecting more and more people, it’s clear this disease needs a lot more research and that’s why I’ve signed the Brain Tumour Research petition to increase research funding. I’d encourage everyone else to do the same.”

Charlie Allsebrook, community development manager for Brain Tumour Research, said: “We were saddened to hear about Chantelle’s recent diagnosis and wish her the best of luck with her ongoing treatment.

“We’re really grateful to her for supporting our petition and for helping us to raise awareness. For too long governments have put brain tumours on the ‘too difficult to think about’ pile. Five years after the Government announced £40 million for brain cancer research, just £15 million has been spent. Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose.

“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours.”

To sign and share the petition before it closes at the end of October 2023, go to www.braintumourresearch.org/petition.

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.

Chantelle will be leaving her crowdfunding page open as a way of supporting herself financially whilst undergoing radiotherapy and chemotherapy treatment. To donate, go to www.gofundme.com/f/life-saving-brain-tumour-operation.