‘Doctors gave my mother cancer drugs for 12 years too long – I want answers from the NHS’

When Gayle Bodinnar reached her 150th round of chemotherapy for her brain tumour, her daughters and husband celebrated, grateful for the treatment that was saving her life.

Or so they thought.

“We were always told that the treatment was the reason mum was alive – the more she had, the more we celebrated. We had Facebook posts when we marked 100 treatments,” says her daughter Kimberley.

When Ms Bodinnar’s cancer was diagnosed, she was given a 20 per cent chance of living for two years. “So we thought she wouldn’t make 24 treatments, yet there she was on 100,” Kimberley says.

“So then to find out that actually she probably would have lived a better life if she had had only six or 12 treatments was devastating.”

Ms Bodinnar is one of more than 30 patients who say their lives were all-but destroyed when during two decades they were needlessly given powerful cancer drug temozolomide at the University Hospitals Coventry and Warwickshire NHS Trust.

The drug manufacturer says it may be used for up to 12 months, and NHS protocol is to use it for no more than six months.

But doctors at Coventry Hospital gave Ms Bodinnar more than 150 cycles of temozolomide, over at least 12 years, leaving her with crippling side-effects including being housebound for life.

Forced to stop work in her mid-50s, she says the overwhelming fatigue quashed her hope of enjoying her retirement with holidays, day trips and having friends for dinner. Instead, she can’t even do the housework, she says, and the side-effects grew progressively worse. She also had to take other medications, including steroids, to cope with the chemotherapy.

“I get ridiculously tired, I repeat myself when I’m talking and my memory isn’t very good. I’ve put on weight, I’ve needed a wheelchair at times and I can’t walk up stairs.”

Kimberley, 39, says: “She went from being like a young mum to like an old lady. She has no quality of life, she literally sits in a chair in her house and doesn’t move. She spends 24 hours a day in the chair or the bed.

“She can’t come on day trips because it’s too much walking. She’s lost all her confidence to do anything, she’s lost the will to live, she says she’d rather be dead. She says it’d be easier if she was dead.

“I know other people with brain tumours who continue to live a relatively normal life. They still work, still drive, go on holidays. And although they’ve got the tumour, they’ve still got a quality of life, whereas Mum doesn’t have that.”

Together with her father, Rory, and sisters Sam and Nicola, Kimberley has become an unpaid carer.

Many of the other patients who were given temozolomide for too long also say the overprescribing left them with extreme fatigue, confusion, sickness and seizures. One says it caused a secondary cancer. Many had their careers ruined.

Lawyers Brabners are calling for an extended patient safety review and independent investigation into treatment received by patients with brain and spinal tumours under Prof Ian Brown, although patients report often not seeing Prof Brown at consultations.

The Independent has contacted Prof Brown for comment.

The Royal College of Physicians (RCP) is investigating the scandal. The trust conducted an internal patient safety review, covering 2017 to 2023, when Prof Brown retired.

The outcome has not been revealed, and the trust says it is waiting for the RCP review. Brabners say investigations should go back to 2006 and include other clinicians and pharmacists who prescribed the drug repeatedly.

After her sixth cycle of chemotherapy, Ms Bodinnar was looking forward to stopping it but was devastated when a doctor told her she would be on it for life.

At the start she was told she was being put on a clinical trial but her lawyers say there were no documents or consent forms for that.

“I feel so stupid now because I didn’t ask enough questions,” says Ms Bodinnar, 68.

Eventually, she was feeling so awful that she told doctors she wanted to stop the chemotherapy altogether, and one gave her permission to “take a break” from it.

“We didn’t want her to have this break, because we’d always been told she’d die if she came off it,” Kimberley says.

“But while I didn’t want her to die, I didn’t want her to suffer either. So I said I’d support her decision.”

To her family’s amazement, Ms Bodinnar gradually improved once she was off the drug. Her brain scans have always been stable but she still doesn’t know whether any tumour remains in her brain because they cut out the centre of a star-shaped tumour.

She is one of the patients preparing legal action against the trust. “I would like answers. I don’t think I’ll ever trust any medical professionals again. You just assume that because they’re the medical people they know what they’re talking about, and you trust them.”

Kimberley says: “The medical professionals have all been nice. We had a good relationship with them. Until early this year, we thanked them for saving Mum’s life.

“Now I want all the people involved to be accountable so that it doesn’t happen to more families, because what we’ve been through is just horrific.

“I don’t want to know why they’ve done it, because it’s a crime either way. It doesn’t matter to me why – it’s that they admit that they’ve done it and it stops.”

A spokesperson for the University Hospitals Coventry and Warwickshire NHS Trust said: “The trust is committed to providing the safest possible care. We have comprehensively reviewed and spoken to all individuals who were receiving temozolomide (TMZ) treatment at the end of 2023 to ensure appropriate support and care plans are in place.

“A high-grade brain tumour is an extremely complex condition with a poor outlook, and all modes of treatment – surgery, chemotherapy and radiotherapy – carry the risk of complications and side-effects.

“National Institute for Health and Care Excellence (Nice) guidelines recognise that clinicians can exercise professional judgement appropriate to individual circumstances when offering treatment to patients.

“We have commissioned the Royal College of Physicians to conduct an independent review of a representative cohort of patients who received greater than 12 cycles of adjuvant TMZ between 2017 and 2023.

“As this process is ongoing, it would be inappropriate to comment further at this stage.”