Sophie Barclay says she spent several years complaining of severe headaches but claims she was “fobbed off” multiple times
A young woman was left unable to walk or speak after being diagnosed with a brain tumour at the age of 15. She said it followed years of doctors dismissing her migraines as the result of “eating too much chocolate and dairy”.
Sophie Barclay, now 21, spent several years complaining of severe headaches but says she was “fobbed off” on numerous occasions and made to feel “like an over-dramatic teenager.” She claims she was repeatedly told her migraines were likely caused by anxiety or her diet.
After “dozens” of trips to her GP, Sophie was eventually referred to a neurologist, who sent her for an MRI scan that revealed a pilocytic astrocytoma. Sophie, from Ratby, Leicestershire , said: “I’d been diagnosed with anxiety before, so they just put it down to that.
“They also told me to keep a food diary as they thought I was eating too much chocolate and dairy. I didn’t know what was wrong, but I knew something was wrong as I’d had headaches for two years, and no one was listening.
“I was made to feel like an over-dramatic teenager and was completely fobbed off. It felt like they only sent me for an MRI to shut me up and stop me coming back. When I was diagnosed it was a relief, because I knew they could do something about it. Although it was obviously terrifying as well.”
Sophie underwent surgery to successfully remove the tumour in 2021, but soon faced further health challenges when she developed a posterior fossa syndrome (PFS). She added: “PFS meant I lost the ability to walk, talk, swallow or even lift my head up.
“I felt trapped in my own body, and I couldn’t even tell anyone if I was in pain. I had to have physiotherapy, which started off daily, and then became weekly, to regain my strength and get me walking and talking again.
“I also had speech and language therapy to help me get my voice back, and I had occupational therapy to help me regain my fine motor skills. I couldn’t talk for around two weeks and it took me around six weeks to learn how to walk again.
“With PFS it can sometimes take a lot longer so in a way I was quite lucky.” Sophie can now speak and walk without assistance following a lengthy recovery journey and has recently completed her second year studying psychology at De Montfort University in Leicester.
She’s now telling her story in the hope that other young people concerned about their health will persist in seeking a second opinion when looking for medical assistance. She added: “For younger people, it’s so important to be listened to because they don’t feel like they are taken seriously.
“I feel like I’ve learned not to trust someone’s first opinion. I’ve learned that I know more about what’s wrong with me than someone else. So, I’d say to others, if you know something is wrong, go to your GP but keep pushing.”
I want to raise awareness of cancer symptoms in young people
Sophie is also supporting a campaign to raise awareness of cancer symptoms in young people, funded by The Children Young People’s Cancer Association (CCLG) and spearheaded by experts at the University of Nottingham. It seeks to help the public recognise the signs and symptoms of cancer in children and teenagers by creating clear referral guidelines to assist GPs and clinicians in identifying when further investigation is required.
Dr Shaarna Shanmugavadivel, a paediatric emergency medicine doctor and CCLG Child Cancer Smart Research Fellow in the School of Medicine at the University of Nottingham, said: “Low-grade gliomas in children are slow growing and so symptoms can accumulate more slowly than with other brain tumours.
“The symptoms that they present with depends on where in the brain the tumour is growing, as with any other brain tumour, and the symptoms can be non-specific which can take some time to reach a diagnosis. As the tumour grows, there is more risk of brain injury including loss of vision and so it’s really important to diagnose as early as possible.”
Ashley Ball-Gamble, CEO of CCLG, added: “By equipping primary healthcare professionals with clearer guidance and practical diagnostic tools, we are providing them with the resources to help reduce delays to diagnosis. This will ensure children and young people receive the right care at the right time, which is vital for improving outcomes.”