Family's battle to get girl's brain tumour diagnosed

The parents of a three-year-old girl with a brain tumour have said seven months of effort to get it diagnosed made them feel like "paranoid parents".

Sean and Laura, from Mansfield Woodhouse in Nottinghamshire, took Poppy to their GP in September 2023 after she developed a "vacant look and a vibration through her body".

After being referred for further tests, they were initially given a diagnosis of epilepsy and told by Sherwood Forest Hospitals NHS Trust they did not qualify for an MRI scan.

After demanding a review, a scan in April showed the tumour, and Poppy underwent a 10-hour operation last month.

They said waiting for a diagnosis for their daughter was "the most stressful part" of her being unwell.

Sean said: "It was so hard to pinpoint as it was intermittent, but it got worse and worse, she had thirty seven seizures in thirty six hours.

"They ran tests to look for brain activity and thought it was epilepsy.

"Something didn't sit right with us. She was just so ill, she was being sick all the time, she was up all night.

"We pushed for an MRI scan, and they said we didn't qualify for one.

"We wanted to just check there was nothing else going on, and when she eventually did have it, we got the worst news possible".

Laura said: "The [diagnosis] completely floored us, our world fell apart, but also a weight was lifted - we had an answer."

The trust said it could not treat the tumour so Poppy was moved to the Queen's Medical Centre in Nottingham.

The operation removed 99% of the tumour and Poppy returned home three days later.

Laura said: "Poppy's been so brave - five minutes after the operation she wanted to play, she's full of energy.

"I couldn't imagine what she's been through. Nothing seems to faze her".

Laura said: "[The tumour] is no-one's fault, it just wasn't picked up as soon as we'd hoped.

"I don't want any other family to go through what we've been through. Some appointments made me feel like a paranoid parent.

"They're all doing their jobs, they're stretched and understaffed, somethings could have been dealt with better, you know your child better than anyone.

"As soon as they listen to you, things get done."

The family now have to wait for the results of a biopsy on the tumour before the next steps are decided.

Dr Simon Roe, acting medical director at Sherwood Forest Hospitals, said: “We are sorry to hear of the significant health problems that Poppy has experienced.

"As a trust, we are committed to listening to and acting on feedback from our patients and their families and we will continue to work with Poppy's family to understand their concerns and what lessons we can learn to improve the care we provide in future."

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