A man who endured 13 years of chemotherapy after being told he had an aggressive, life-limiting tumour has spoken of his devastation after learning the treatment may never have been necessary.
Andrew Whitehead was just 29 when he underwent surgery to remove a tumour from his neck at a hospital in Coventry in 2010.
He was subsequently told that he had a high-grade aggressive tumour and that chemotherapy and radiotherapy were his only options.
Now 45, Mr Whitehead says he was effectively told to prepare to die – and spent more than a decade organising his life around repeated cycles of chemotherapy.
The treatment only stopped after a new oncologist took over his care in 2024 and his case was reviewed.
Independent medical evidence obtained by his lawyers has since indicated that his tumour was a much lower grade and that he should not have received chemotherapy at all, according to law firm Brabners.
His case is among more than 40 being investigated by lawyers over claims of prolonged or allegedly unnecessary chemotherapy treatment at University Hospitals Coventry and Warwickshire NHS Trust of patients all under the care of Dr Ian Brown.
It comes as an interim review by the Royal College of Physicians (RCP) has found serious failings in the care of patients who were prescribed prolonged courses of the chemotherapy drug temozolomide at the Coventry trust.
Andrew Whitehead was just 29 when he underwent surgery to remove a tumour from his neck at a hospital in Coventry in 2010
His case is among more than 40 being investigated by lawyers over claims of prolonged or allegedly unnecessary chemotherapy treatment under the care of Dr Ian Brown (above)
The RCP examined 20 cases and found 15 were ‘unsatisfactory overall’, with none judged to represent good practice. Its preliminary findings said patients had been prescribed extended courses with ‘little or no evidence of benefit’ and described the failings as a ‘betrayal of patient trust’.
The full review is expected to be published later this autumn.
Reflecting on the revelation, Mr Whitehead told the Daily Mail: ‘I believed I didn’t have long and was going to die. I hoped the treatment would extend my life, but I didn’t honestly know how long that would be.
‘It was just a case of taking one day at a time and seeing what happens. The treatment became my life, really. Taking the chemotherapy as I was told was my one and only focus, because that was the thing I hoped would keep me alive.’
Mr Whitehead was given 30 sessions of radiotherapy and chemotherapy at the beginning of his treatment.
For most of the next 13 years he took chemotherapy tablets for five days, followed by three weeks off, before starting another cycle.
‘You don’t just recover straight away. You have to slowly come out of it and, by the time you start to feel OK, it’s time for the next cycle again.’
Eventually, the routine became so entrenched that he could scarcely remember life before it.
‘After a few years it just became normal. It sounds stupid, but it just became my life. I didn’t know anything else. My old life had disappeared and this was the new life that I had to lead to stay alive.
‘There was a constant monotony of taking the tablets, going for a scan, hoping the scan was fine – which it usually was – and then you breathe a little bit and think, “OK, I’ve got another six months now; I need to do the best I can to get to the next scan”.
‘That was how I lived my life, from scan to scan.’
Then came the news that turned his world upside down.
He was told that the tumour was actually low-grade and that his original diagnosis had been wrong.
‘I was shocked and I was relieved, because being told you have a low-level cancer is not as stressful.
‘I was told I was coming off my tablets, and that was causing me a lot of stress because I had been told the tablets were keeping me alive.’
A Freedom of Information request showed that between 2007 and 2023 Coventry had spent £3.6million on temozolomide – around ten times more than any other neuro-oncology centre they examined
Reflecting on the revelation, Mr Whitehead told the Daily Mail: ‘I believed I didn’t have long and was going to die. I hoped the treatment would extend my life, but I didn’t honestly know how long that would be’
It was not until he drove home that the enormity of what he had been told began to sink in.
‘Since finding out what I’ve found out, every time I look back I feel anger and sadness. All those years were taken away from me.’
Mr Whitehead says he had been forced to abandon almost every part of his former life.
He left a job he had worked at for around four-and-a-half years, gave up weight training, saw friends less often and stopped going out.
‘I had to stop everything just to concentrate on taking the tablets and trying to keep myself alive.’
He says he continues to suffer from stomach problems, fatigue and difficulty concentrating.
He has also been diagnosed with depression and illness anxiety disorder during assessments carried out for his legal case.
‘I still live at home, unfortunately, because I haven’t been able to move on with my life and be able to work or look to a future.
‘Everything has been put on pause. I’m still not working; I’m still struggling through life and I’ve got other things to deal with.’
His case is part of a much wider investigation by lawyer Fiona Tinsley and colleagues at Brabners.
Ms Tinsley said the first patient who approached the firm had taken temozolomide for 17 years after being told the drug was keeping him alive.
When a new consultant reviewed his case in April 2024, he was told there was no scientific or medical evidence supporting chemotherapy for anything approaching that length of time.
His family complained to the trust.
According to Ms Tinsley, the trust subsequently acknowledged that the treatment should not have happened and was not in line with national or international guidance, apologising to the patient and his family.
Crucially, she said, the trust referred to a wider ‘cohort of patients’ who would also be contacted.
That prompted lawyers to investigate.
Since January 2025, Ms Tinsley said her firm has identified around 40 patients with concerns about prolonged temozolomide treatment – and believes there could be many more.
National guidance generally recommends six cycles of temozolomide following radiotherapy for the relevant brain tumours, with prolonged treatment requiring clear clinical justification.
The RCP review found repeated instances in which the drug was continued for years despite limited evidence of benefit.
A Freedom of Information request showed that between 2007 and 2023 Coventry had spent £3.6million on temozolomide – around ten times more than any other neuro-oncology centre they examined.
Ms Tinsley says the investigation has also uncovered concerns about the original diagnoses in a number of cases.
In some patients, she said, independent experts reviewing tissue samples have concluded that the tumours were lower grade than originally diagnosed and that the patients may never have needed chemotherapy.
In Mr Whitehead’s case, his lawyers say independent expert evidence indicates the correct diagnosis should have been made in 2010.
His tumour samples had been sent from Coventry to Birmingham for pathology analysis.
The lawyers are now pursuing claims involving both University Hospitals Coventry and Warwickshire and University Hospitals Birmingham in cases where they allege diagnostic errors occurred.
The wider RCP review has raised questions about how such treatment could continue for so long without being challenged.
Its interim findings criticised the consultant at the centre of the review, who it referred to as ‘Dr Y’ but who the Daily Mail understands to be Professor Brown.
The report said he did not participate in the review and did not attend an interview with investigators.
It also raised concerns about the role of a former clinical nurse specialist, saying patient care was primarily managed by him while the consultant had limited direct involvement.
Pharmacy teams were also criticised for failing to question the use of an oral chemotherapy drug continuously for ten to 15 years.
The review said there had been ‘multiple opportunities for scrutiny and challenge’ and described a failure to recognise the prolonged prescribing as highly unusual.
It also recommended consideration of independent reviews of living patients who had been treated by the consultant.
The trust has said that all patients receiving temozolomide at the time of the consultant’s retirement had been reviewed by senior clinicians and appropriate care plans put in place.
It has also said it is conducting an independent review of its ‘speak up’ processes and will assess the full RCP report before taking further action.
The legal cases are now being pursued against the NHS trust, with the lawyers seeking answers, accountability and compensation for patients who they say suffered physical, psychological and financial consequences.
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