Health · Healthcare & Policy · 10 hrs ago
Parents say delayed diagnosis worsened their son’s final months
Billy was four and had just started school in Surrey when his behaviour and balance began to change.
His parents, Ellie and Jamie, took him to doctors several times because they felt something was wrong.
A GP said a brain tumour was unlikely, but a hospital doctor ordered a scan after hearing their concerns.
In November 2023, scans showed a tumour in the pons, an area of the brain that helps control functions such as breathing and sleep.
Billy was diagnosed with diffuse intrinsic pontine glioma, a brain tumour with no cure, and had five months left to live.
His mother says the NHS’s failure to recognise the problem made the family’s anguish worse.
The account does not say what changes, if any, will follow.
Billy, four, was diagnosed with an incurable brainstem tumour after months of symptoms and repeated medical visits.
His parents, Ellie and Jamie Thompson, say the delay made the five months he had left more difficult.
Billy began school in September 2023, and his parents noticed changes in his behaviour, mobility and speech soon afterwards.
A GP told his mother there was no way he had a brain tumour, but a CT scan at A&E later found a mass.
An MRI the next day confirmed diffuse intrinsic pontine glioma, or DIPG.
- Who
- Billy, his parents Ellie and Jamie Thompson, and the doctors who assessed him.
- What
- Billy was diagnosed with an incurable brainstem tumour after his parents say his symptoms were not recognised earlier.
- When
- Symptoms began after he started school in September 2023. He was diagnosed in November 2023.
- Where
- The family lived in Surrey. Billy was assessed by a GP and later at A&E; the hospital is not named.
- Why
- The parents say the delay worsened the final five months of Billy’s life. The reason for the delay is not stated.
Billy’s parents
GP
Assessment of Billy’s symptoms
Billy’s parents
They believed something was wrong and worried he might have a brain tumour.
GP
The GP said there was no way Billy had a brain tumour and suggested his problems might be related to mental health.
There’s absolutely no way he has a brain tumour.
I just can’t believe this is the same boy... we just want our old Billy back!
I think Billy might have a brain tumour.
Billy started school at age four.
Ellie emailed Billy’s school that she wanted her old Billy back.
Billy’s headteacher told Ellie he had fallen over in the playground; it was the second time that week.
The family took Billy to A&E, where a CT scan found a mass in his brain.
An MRI confirmed that Billy had DIPG.
- Billy’s age
- Four
- First noticed changes
- After starting school in September 2023
- CT scan
- Found a mass in the pons
- Diagnosis
- Diffuse intrinsic pontine glioma (DIPG)
- Time after diagnosis
- Five months left
Sources
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