'Years of unnecessary chemotherapy stole my youth'
A brain cancer patient who says he was prescribed chemotherapy tablets for 16 years, even though NHS guidelines say they should only be taken for six months, has said he feels his youth was stolen from him.
Jonathan Jones was diagnosed with anaplastic astrocytoma in 2007 when he was 17 and took temozolomide tablets until November 2023, when he was 33.
Since he has raised his case with lawyers, more than 30 other brain cancer patients at University Hospitals Coventry and Warwickshire (UHCW) have raised similar concerns.
The NHS trust said it was committed to providing the safest possible care and had commissioned an independent inquiry.
Prof Ian Brown, the oncologist who oversaw Mr Jones's care, is being investigated by the General Medical Council (GMC). The BBC has attempted to contact the retired professor several times.
Mr Jones, now aged 36, said: "I lost my freedom, I couldn't do anything at the time. I had 16, 17 years taken away from me."
Mr Jones was told he would need to stay on his tablets to stay alive, and when he questioned the treatment, he said the reply was: "Do you want to die? If you don't carry on taking the chemo, you'll die."
Guidelines say temozolomide should be taken post radiotherapy for a maximum of six cycles, external. This is usually over six months.
There are a wide range of side effects associated with temozolomide including muscle weakness, memory issues and, in rare cases, secondary cancers and liver damage.
Another patient, Samantha Smith from Bromsgrove, Worcestershire, says she took temozolomide for six-and-a-half years while under the direction of Prof Brown at UHCW.
She said she had suffered from teeth and gum decay, mobility issues and chronic fatigue.
Ms Smith said: "You never expect anybody to turn around and say to you 'by the way, you've had too much'."
Source: BBC News, 2 October 2025