Patient 'shattered' by unnecessary chemotherapy

A brain cancer patient has been left "confused" and "shattered" after learning he took chemotherapy drugs needlessly for more than a year.

Richard Walker – and another 13 patients – are being represented by a law firm over concerns over administration of temozolomide at University Hospitals Coventry and Warwickshire NHS Trust (UHCW), with one patient receiving the drug for 14 years.

NHS guidelines recommend the chemotherapy tablets should not be used for more than six months, but Mr Walker was prescribed them for 22 months.

UHCW said in light of the concerns raised, it had commissioned an independent review.

Mr Walker, a father-of-two from Kidderminster, said: "I feel like I've put my illness and my life into the hands of somebody you naturally trust and then, to find out I didn't necessarily need 22 months of chemo, is very shattering and confusing."

Prolonged use of temozolomide can cause loss of fertility, pneumonia and, in rare cases, secondary cancer and liver damage.

Law firm Brabners is representing 14 patients who received the drug under the direction of Prof Ian Brown.

Fiona Tinsley, from the firm, said a number of their clients had been told they needed to stay on the drug to prolong their life.

Patients also say they were over-diagnosed, later finding out their tumours were not as serious as first thought.

A UHCW spokesperson said: "The trust is committed to providing the best and safest care possible to our patients."

They added: "The initial review will include patients who have received greater than 12 cycles of adjuvant [temozolomide] between 2017 and 2023 and will assess the treatment provided as well as our governance arrangements.

"We can also confirm we have comprehensively reviewed and spoken to all individuals who were receiving this treatment at the end of 2023 to ensure appropriate support and care plans are in place.

"As the review process is ongoing, it would be inappropriate for us to comment further."

Ms Tinsley said some clients had developed conditions that could be a direct result of the temozolomide.

"We have got a patient who has secondary cancer, we've got a patient who has liver damage," she said.

"We've got patients who've got mobility problems, long-term gastrointestinal problems.

"And when they queried - in particular the gastrointestinal problems - with clinicians at the trust, they were dismissed as if it was nothing to do with the chemotherapy and not referred for investigation.

"They've had to seek out those investigations on their own."

The mass on Mr Walker's brain was discovered after he collapsed while working in Redditch.

In 2021, he was diagnosed with a stage four glioblastoma and told he had 12 to 18 months to live.

He approached the BBC after reading about the temozolomide patient who had received treatment for 14 years.

He believed taking the temozolomide indefinitely was his only option to stay alive and was initially upset when a new consultant told him it would be stopped.

"I thought, 'That's scary because that's keeping me alive'," said Mr Walker.

His wife Lucy added: "We had horrible phone calls where we were saying this is not fair - we want it.

"We couldn't get our heads around it."

The General Medical Council is investigating Prof Brown.

Interim conditions were placed on his licence during a tribunal last year - including a ban on prescribing, administering or having primary responsibility for any chemotherapy drugs - until a conclusion has been reached'.

As well as seeking comment from UHCW, the BBC has made attempts to contact Prof Brown but has so far been unsuccessful.

Prof Brown had now retired and was no longer a UHCW employee, the trust said.

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