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“If it wasn’t for our desperation, we wouldn’t have got a scan.”

Rhudi Baume-Kennedy, 20, explains how his experience of spending nine months trying to get a diagnosis for his symptoms has driven his support for The Charity's work.

Rhudi Baume-Kennedy, 20, was diagnosed with a brain tumour in 2014 after nine months of symptoms and many visits to healthcare professionals.

Rhudi, now a student at St Andrews University, started getting headaches when he was twelve years old.

After nine months and being misdiagnosed five times, the headaches had become unbearable, especially in the morning.

He was also vomiting, had nose bleeds, neck pain and was unable to sleep, yet despite multiple trips to GPs, he still hadn’t been diagnosed.

I had headaches induced by my brain tumour for about nine months but they only became severe for about four months.

During the four months or so before my diagnosis, I visited several health professionals but all of them told me my symptoms were just caused by migraines. Eventually my headaches became so bad that I was not able to sleep at night, throwing up in the morning and having bad nose bleeds.

I visited an out-of-hours surgery in this state but was still turned away and diagnosed with migraines. At no point did anyone ever refer to there being more sinister possibilities than migraines.”

In desperation, his Dad took him to A&E, where he had a CT scan.

My dad took me to A&E in Glasgow and we basically had to beg to get a scan. When they reluctantly gave me one, the doctor came back half an hour later and informed me that they had found a tennis-ball sized tumour on my cerebellum.

Rhudi was diagnosed with a ganglioglioma (grade 1) brain tumour in the posterior fossa area of his brain.

Rhudi then underwent a 14-hour operation to remove the tumour and, left with partial hearing, double vision and balance problems, which he believes were not helped by his late diagnosis, began a long road to recovery.

Over 1,000 people are diagnosed with a brain or central nervous system tumour in Scotland every year.

Early diagnosis remains a unique challenge for brain tumours, with estimates suggesting that up to 64% of patients are diagnosed via an Emergency Department.

Public Health Scotland estimates also suggest there may have been nearly a 25% drop in diagnoses from January to August 2020, compared to the same period in 2019, as a result of the COVID-19 pandemic.

In addition, the pandemic has seen many patients face disruption to their care, including to clinics and appointments and treatments such as surgery or chemotherapy.

While the NHS took extensive steps to keep cancer services running, The Charity heard that in most areas in Scotland, operations for those living with a low-grade brain tumour were delayed – however the scale of these impacts is not yet known.

Recently, Rhudi backed The Brain Tumour Charity’s Scottish Manifesto to drive change for everyone affected, urging local MSP candidates to pledge support for those affected by a brain tumour in Scotland.

Rhudi says, “I added my voice to The Brain Tumour Charity’s call because the diagnosis process was not good enough and I almost paid with a seizure, or worse, my life.

Thankfully, I am now perfectly healthy and studying Economics and Philosophy in my second year at St Andrews University.

It scares me to think that my life could have been cut short just because health professionals are unwilling to consider the possibility of a brain tumour.

If you’ve been affected by late diagnosis of a brain tumour, you can help us drive change by filling out our Improving Brain Tumour Care Surveys and/or sharing your story with us.

Media contacts at The Brain Tumour Charity

Press office contact details:

Phone: Mon-Fri, 9am-5pm: 01252 237864
Out of hours media contact: 07990 828385
Email: pressoffice@thebraintumourcharity.org