For years, Elena was given a chemotherapy drug she did not want. Now she’s infertile and too unwell to work – and she or he’s simply one in all 40 sufferers handled by the identical physician who’re suing the hospital for wrecking their lives

Elena Adams was excitedly saving for her wedding and enjoying long hikes at weekends when, aged 25, she was diagnosed with a brain tumour and her world collapsed.

A decade on, she’s too ill to hold down a job, on antidepressants and using crutches to walk. Most devastatingly, she’s infertile, the two children she and her husband Gareth longed for a pipedream now. ‘I’m not the same person I was ten years ago,’ she says.

But it wasn’t the tumour that tore her life apart. It was the treatment she was given.

Within days of being diagnosed at University Hospital Coventry in May 2016, Elena’s neuro-oncologist, Professor Ian Brown, put her on a chemotherapy drug called temozolomide (TMZ). That drug both robbed her of her fertility before she had a chance to preserve it and, combined with the steroids Elena was given to reduce swelling around her tumour, floored her.

‘I would alternate between lying in bed and being sick. I couldn’t leave the house,’ she says.

So it was clearly a blow when Brown and his assistant, Clinical Nurse Specialist Ian Edwards, told her she’d need to stay on TMZ for ever – despite the fact (as Elena later found out) that NHS guidelines stipulate the drug should be taken for six months only.

Its myriad side-effects include fever, fatigue, nausea, stomach pain and hair loss.

Yet Elena dutifully accepted her fate, telling herself the chronic side-effects were a small price to pay for her life.

And so she took TMZ for six years – until, in 2022, Brown and Edwards changed tack and told her the cancer had been effectively treated and she could stop chemotherapy. Even then, she was so in thrall to her doctors she was simply grateful they had finally cured her.

It was only last year that the devastating truth dawned: Elena’s body had been pumped with potent chemotherapy for five and a half years longer than recommended – and the men she credited with saving her life could well be responsible for ruining it.

Astonishingly, she’s far from alone. Forty patients are taking legal action against University Hospitals Coventry and Warwickshire NHS Trust (UHCW), claiming they were prescribed TMZ to treat brain tumours under Professor Brown for far longer than necessary – if it was even necessary at all.

Last month, it emerged one of Brown’s patients, who spent 11 years on TMZ, didn’t even have cancer in the first place.

Becky Jones, 34, was diagnosed with a terminal tumour by Brown in 2012, when actually she had an inflammation of the brain.

‘I was told if I didn’t keep taking the chemotherapy I would die,’ said Becky, a CCTV operator from Coventry, who said her 156 cycles of chemotherapy left her suffering nausea, fatigue, depression and ulcers. Brown, who had worked for UHCW since 1998, simply dismissed her concerns when she asked why her tumour wasn’t visible in her scans, she said. The scandal is so bizarre, it stretches credulity. It was only when Brown retired in 2023, and other doctors took over his cases, that the extent to which he had prescribed TMZ emerged.

A freedom of information request by Brabners, the law firm now representing the patients, found UHCW spent more than £3.6 million on temozolomide (TMZ) between 2009 and 2024 – more than ten times the spending of comparable NHS hospitals.

The General Medical Council is now investigating Brown, who is still licensed to practice medicine, albeit with restrictions. UHCW is ultimately responsible for his patients’ care, and has admitted liability in two cases.

Last month, an interim report by the Royal College of Physicians, carrying out an independent review, identified wider, serious concerns about UHCW’s patient safety, informed consent, clinical decision making and the effectiveness of the systems designed to protect patients.

So how on earth did this happen in the first place?

Did Brown and Edwards – who had been most patients’ more regular point of contact at the hospital and retired last year – genuinely believe they were saving their patients’ lives?

Were they somehow profiting from doling out a drug that costs £1,000 per cycle?

Like everyone whose life has been impacted by the actions of these two men, Elena is demanding answers. ‘Because of them, I can’t have children,’ says Elena. ‘Why am I infertile? Why would you do it?’

In addition, being on TMZ for prolonged periods also risks bone marrow suppression, liver damage and secondary blood cancers.

It was in May 2016, after developing a buzzing in her ear and pressure behind her right eye, that Elena was referred for an MRI scan at University Hospitals Coventry & Warwickshire NHS Trust. Told by a surgeon she had a 6cm tumour in her brain, Elena felt ‘absolute shock’.

She had two surgeries to remove the tumour that June and July. Fiona Tinsley, a partner at Brabners acting for Elena and many other patients, says Brown’s notes show the surgery had been ‘most successful’ with ‘extremely good debulking of the tumour’.

Yet when Elena met Brown for the first time after the second operation, he told her she’d need a six-week course of radiotherapy followed by chemotherapy with TMZ to kill off any remaining cancer cells.

She was immediately won over by the then 50-something’s easy bedside manner.

‘He would break stuff down and explain it so we would understand it,’ she says.

Edwards, meanwhile, with whom Elena had the majority of her appointments, warned her that the chemotherapy could affect her fertility, but that she could have her eggs frozen to preserve it.

She was referred to the hospital’s fertility department, but before she even had a chance to see a fertility specialist or start radiotherapy, Brown put her on an initial five-day course of TMZ.

‘This is something Professor Brown did with many of his patients, but it’s not something that should be done in practice,’ says Fiona Tinsley. ‘They didn’t pause before her treat- ment started, to deal with fertility preservation.’

Of course, Elena wishes she had pushed for an appointment about her fertility before taking the drug. But Brown, a Cambridge University graduate, had, at that time, an impeccable reputation. ‘I was grateful I had these amazing people looking after me,’ she says.

By the time she saw a fertility specialist that August she was told ‘it was too late’ to freeze her eggs. An administrator for a metals company, Elena admits children weren’t her priority in the face of apparently life-threatening disease.

While ‘obviously upset’, she just wanted to beat the cancer. Elena’s medical records show the fertility specialist did suggest she have hormone injections while on chemotherapy which could at least have helped preserve her eggs.

‘He asked Professor Brown to facilitate that. But Brown didn’t,’ says Tinsley.

Elena resumed TMZ that September, for what she was told would be a six-month course. ‘I was sick. I’d get diarrhoea. I’d have no energy. I was ill all the time,’ says Elena, who was signed off work. ‘I didn’t really get out of bed. I hardly ate but couldn’t stop putting on weight. It was a really awful time.’

Then came an utterly shocking and in retrospect incomprehensible pronouncement. Just before she was due a six-month scan that would reveal her cancer had gone, Elena was told by clinical nurse specialist Edwards that she would need to be on TMZ for the rest of her life. ‘They said if I stopped chemotherapy, the cancer could grow back.’

While ‘shocked’, she didn’t think to question why. ‘I would take whatever I could to stay alive.’

If Elena sounds naïve, she’s not the only one.

‘Pretty much every patient would get to the end of the six-month cycle, and Ian Edwards would say, “you’ve been doing so well on this, to give you the best chance of survival, we’re going to carry this on,”’ says Tinsley, who has been told by independent medical experts that there’s insufficient evidence to justify continuing to take TMZ for prolonged periods.

She adds: ‘The risks are you are going to have cumulative toxicity; you are going to be immunosuppressed; you are going to be more at risk of infection. You are at a risk, albeit low, of developing secondary cancers. And the benefits of continuing treatment are zero. But these patients weren’t told that. They were told, “it’s keeping you alive. Carry on.”’

Since her surgery, Elena also took dexamethasone, a steroid to help the swelling around her tumour subside for eight weeks.

The drug can ‘cause real issues with joint pain and stiffness,’ says Tinsley, and by the time Elena finally came off it, the physical and psychological damage was done.

Having shot up from a size 18 to a size 26, she was unable to lose the weight. Her confidence plummeted. ‘My whole face changed. I didn’t like going out. I didn’t like seeing my friends.’

She was seeing Edwards regularly, who checked her blood count every month before prescribing her more TMZ, and their ‘general chit chat’ fostered trust. ‘I was getting married, so I’d talk to him about that.’

Yet he surely saw how ill TMZ was making her?

‘I’d get a lot of chest infections, and he would say: “Don’t take it this week, take it next week,” or something like that,’ says Elena.

Left feeling she ‘couldn’t face the world at some points’, she quit her job after a year. ‘When you’re that ill, you can’t concentrate on anything.’

Her relationship with Gareth, 37, a mechanic she married in 2018, was inevitably impacted, too. ‘Obviously there have been times it’s been really difficult for him. I’m sore. I get tired.’

But it never occurred to either of them, or her family to question why – when the scans were showing she didn’t have cancer – she was still being prescribed chemotherapy. Elena assumes her GP also knew she was taking chemotherapy for years on end ‘but nothing was ever said’.

She had completed 66 cycles of TMZ when, in May 2022, Professor Brown and Ian Edwards requested a meeting. Instinctively she feared her cancer was back. ‘I’d just had a scan, and I thought, “Oh God, something’s happened.”’

Instead, Brown told her that her latest scan had come back clear. ‘I burst out crying, I was so happy. I was thanking them, praising them.’

Elena was never treated by Brown again and saw Edwards once more before she was transferred to another consultant – who told her that he would not have treated her in the same way.

The cumulative effects of her prolonged medication continued. As a result of the steroids, in 2022 she was diagnosed with the bone condition osteonecrosis, which ‘basically means that my knee is dying,’ says Elena, who is on the waiting list for a knee transplant.

Last year, a blood test confirmed Elena had gone into menopause as a result of the chemotherapy. At 34, the weight of her infertility finally hit home.

‘It’s grief. Every single one of my friends is either pregnant or has got children. I know that that’s never going to happen.’

When a friend sent over a news report about Brown’s alleged over-prescribing of TMZ, her reaction was disbelief.

‘I believed that he had everyone’s best interest at heart.’ It was only as more alleged victims emerged, and lawyer Fiona Tinsley requested her medical records which laid bare the failings of her treatment, that her grief was compounded by anger.

Of course, she can only speculate, but Elena believes her doctors may have somehow profited from prescribing the drugs. ‘People get controlled by money, don’t they?’

Tinsley says it was suggested to some of her clients that they were on a clinical trial for TMZ.

‘But if there have been any clinical trials going on there would be significant documentation in those patient records, and that is just not there,’ she says.

Neither man has ever publicly commented on the allegations. Professor Brown failed to attend an interview requested by investigators at the Royal College of Physicians or engage with its review process.

‘There’s culpability on many levels within that Trust by allowing Ian Edwards and Ian Brown to continue this practice for so long,’ adds Tinsley.

The Mail attempted to contact Brown and Edwards through the hospital trust but did not receive a response.

A spokesperson for the Trust says it can’t comment on individual patients but that it has ‘put in place actions, informed by initial feedback, to ensure more robust oversight of the prescription and use of TMZ and ensure patient safety’.

‘All patients receiving TMZ at the time of Ian Brown’s retirement have been reviewed by senior clinicians, with appropriate care plans put in place. We are also undertaking an independent review of our speak up processes, led by an independent party, to ensure staff feel fully supported and confident in raising any concerns.

‘The Trust will assess the full RCP review when it is published and will take further appropriate action based on its findings. Patient safety, experience and wellbeing remain our top priorities.’

For Elena, however, it’s too little, too late. And her shattering verdict? ‘This should never have been allowed to happen.’