More than 20 patients who say their quality of life was wrecked when they were needlessly given a highly toxic cancer drug are suing the NHS trust involved.
Some people were prescribed temozolomide – which should normally be used for only six months – for more than a decade during treatment by the University Hospitals Coventry and Warwickshire NHS Trust.
They say the overprescribing left them with side-effects including secondary cancers and crippling fatigue.
Earlier this year the Care Quality Commission was looking into at least 14 cases, but lawyers say more are emerging all the time.
An investigation by lawyers Brabners found that, over the past two decades, numerous patients with brain and spinal tumours under the care of Professor Ian Brown were routinely exposed to prolonged and in some cases “unnecessary” use of the chemotherapy drug, which has severe side-effects including extreme fatigue, confusion, sickness and seizures.
The time periods temozolomide was given for allegedly ran contrary to medical and scientific guidelines. Standard NHS procedure is to use the drug over six months, and the drug manufacturer advises it be used for up to 12 months.
One man said he was prescribed it for nearly two years longer than necessary, suffering extreme fatigue and low mood as a result.
A woman in her twenties said she was misdiagnosed with cancer, receiving the drug needlessly for about eight years.
Some patients are now having treatment for secondary cancers allegedly linked to overuse of temozolomide, the lawyers claim.
Others claimed its prolonged use left them unable to pursue career ambitions and normal day-to-day activities because the chemotherapy was debilitating, with a long recovery time. Some reported loss of fertility or abnormal blood test results.
The legal team says data shows that the trust’s spending on the drug of £3.6m from 2009 to 2024 is 10 times that of other NHS oncology departments.
The lawyers are now calling for an extended patient safety review and independent investigation, focusing in particular on treatment received by patients under Prof Brown dating back to 2006.
The trust has been conducting an internal patient safety review, covering 2017 to 2023, when Prof Brown retired.
A patient who identified only as Michael received an extra 22 cycles of temozolomide at the trust, despite his scans being stable.
Prof Brown was not present during consultations, and Michael said he was always seen by a clinical nurse specialist.
After suffering extreme fatigue and low mood, he learnt through news reports of mistreatment –not from the trust – that he should not have remained on treatment for so long, according to his lawyers.
Another patient, identified only as Becky, says she received at least 100 cycles of the drug unnecessarily after being misdiagnosed with a brain tumour.
Fiona Tinsley, head of medical negligence at Brabners, said: “The extent of this scandal, and the physical and mental impact it has had on Prof Brown’s patients cannot be underestimated.”
She added: “We believe there are many more patients out there who haven’t yet come forward and some who may have sadly passed away.
“While we welcome the ongoing investigations being undertaken by the General Medical Council and Royal College of Physicians, we believe a full independent inquiry is necessary – including an extension of the trust’s own review back to 2006 – not only to ensure justice for victims, but that processes are put in place to better identify and prevent such failings happening again.”
A spokesperson for the trust told The Independent: “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 glioblastoma is an aggressive brain tumour with fewer than two per cent of patients surviving longer than 10 years. This is an extremely complex condition 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 judgment 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."
It's understood that CQC inspectors have been in touch with the trust to understand the details, and seek assurances that patients are not at risk. The regulator will be reviewing more information to judge whether it needs to be involved.
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