BbcA patient against brain cancer, who says that he has been prescribed chemotherapy tablets for 16 years, even if the NHS directives say they should generally only be taken for six months, said that he thought that his youth had been stolen from him.
Jonathan Jones was diagnosed with an anaplastic astrocytoma in 2007 at the age of 17 and took Témozolomide tablets until November 2023, when he was 33 years old.
Since he has raised his file with lawyers, more than 30 other brain cancer patients in Coventry and Warwickshire (UHCW) academic hospitals have raised similar concerns.
The NHS Trust said it was determined to provide the surest care and had ordered an independent investigation.
Professor Brown, the oncologist who supervised the care of Mr. Jones, is the subject of an investigation by the General Medical Council (GMC). The BBC has tried to contact the retired teacher several times.
Mr. Jones, now 36, said: “I lost my freedom, I couldn’t do anything at the time. I was 16, 17, kidnapped from me.”
Lichfield landscape gardener, Staffordshire, said that he had had dental problems, joint pain and anxiety problems since his diagnosis.
‘If you do not continue, you will die’
Speaking of the impact on his life, he said: “I was gone [work] Every month for seven days and I could not be used, so financially it was a problem.
“The pain I suffered at home … I would stay in bed, I would have panic attacks. Illness, fatigue. I didn’t really go out much.
“It also caused a lot of stress to my family.”
Mr. Jones was informed that he would need to stay on his tablets to stay alive, and when he questioned the treatment, he said that the answer was: “Do you want to die? If you do not continue to take chemo, you will die.”
The guidelines indicate that temozolomide must generally be taken after radiotherapy for six cycles. It is generally more than six months.
There are a wide range of side effects associated with temozolomide, including muscle weakness, memory problems 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 under the direction of Professor Brown in Uhcw.
She said she had suffered from teeth and disintegration of gum, mobility problems and chronic fatigue.
Ms. Smith said: “You never expect anyone who turns around and tell you” you have too much “.
“I become much more lethargic now. I can’t move as much as before … It’s hard now to go down by myself. I fall a lot.”
The law firm Brabners said it had obtained data, using requests for freedom of information that show that UHCW spent more than 3.6 million pounds sterling for Témozolomide between 2009 and 2024 – more than 10 times that of comparable NHS hospitals.
In a press release, UHCW said: “The trust is committed to providing the safest care.
“We examined and exhaustively spoken to all those who received treatment in Témozolomide (TMZ) at the end of 2023 to ensure that appropriate support and care plans are in place.”
He added: “A high -grade brain tumor is an extremely complex condition and all treatment methods – surgery, chemotherapy and radiotherapy – include the risk of complications and side effects.
“The directives of the National Institute of Health and Care recognize that clinicians can exercise professional judgment appropriate for individual circumstances during the treatment of patients.
“We have in charge of the Royal College of Physicians to carry out an independent examination of a representative cohort of patients who received more than 12 TMZ adjuvant cycles between 2017 and 2023.
“As this process is underway, it would be inappropriate to comment more at this stage.”
A GMC declaration said: “Dr. Ian Brown is currently registered with a license to practice but by provisional conditions on his registration while waiting for the conclusion of a GMC investigation.
“The intermediate restrictions were imposed for the first time on the practice of Dr. Brown on August 23, 2024.”
