Fiona French’s story makes for shocking reading. For 40 years, the social scientist from Edinburgh was given repeat prescriptions for benzodiazepine drugs to treat her epilepsy.
These tranquillisers, which include brands such as Xanax, Restoril and diazepam (formerly known as Valium), are commonly prescribed by GPs for pain, anxiety, sleeplessness or depression.
They also have a muscle relaxant effect, which is why Fiona was given them because her type of epilepsy caused short, shock-like jerks.
Because benzodiazepines (nicknamed ‘benzos’) are highly addictive, under long-standing guidelines patients should be put on such drugs for only four weeks.
Long-term use can also lead to problems with memory and concentration, anxiety and depression as well as sleepiness and unsteadiness. But as the Mail has previously highlighted, thousands of people are being prescribed these drugs for months and even years.
Fiona, 61, was on the drugs for four decades.
‘The doctors I see these days seem very puzzled that I was ever put on them at all,’ she says. But she’s paying the price, for the medication has caused her mental and physical harm.
‘My adult life has been destroyed by these drugs,’ she says.
To add insult to injury, when Fiona managed to wean herself off this medication (like many others, she had to go it alone, as there is virtually no support for innocent drug addicts), she suffered terrible long-term withdrawal symptoms that doctors suggested were all in her mind.
Hers is hardly a unique experience. Up to a third of those who quit benzodiazepines experience bizarre symptoms, according to Malcolm Lader, emeritus professor of clinical psychopharmacology at the University of London Institute of Psychiatry.
And yet, too often these patients are told their symptoms are ‘medically unexplained’ — or even a sign of mental health problems.
Fiona was studying teacher training at university when she was diagnosed with epilepsy at 19 and put on benzodiazepines.
‘Within two months of starting I made my first suicide attempt. I suddenly felt desperate and wanted a way out,’ she says. ‘I couldn’t explain why my personality had changed so suddenly and dramatically.
‘I would spend large chunks of the day asleep in bed and developed a fear of being alone. I was told that my symptoms were that of depression, and I believed it. I kept taking the tablets, thinking they would make me better. It never entered my head that it could be the drugs that were making me ill.’
In her 20s, having had to drop out of her course, she managed to get an administrative job. ‘But I never felt any better despite taking all these pills and it was a struggle just to get through every day,’ says Fiona.
SYMPTOMS WORSE AFTER QUITTING
The symptoms were bad enough when she was on the drugs, but even worse if she tried to come off them.
In 1981, Fiona saw a neurologist who said he thought the benzodiazepine pills — she was taking nitrazepam — were making her depression worse and she should be put on other drugs to treat her epilepsy.
But Fiona had to stop taking her new medication after a few weeks as she had become so ‘restless, agitated, highly anxious and unable to sleep’.
‘It was only years later that I made the discovery that benzos were addictive and what I had experienced was, in fact, drug withdrawal,’ she says.
Back on the nitrazepam and, despite her chronic exhaustion and anxiety, Fiona managed to study. ‘I was determined to turn my life around,’ she says. ‘After I graduated in 1992, I got a job at Aberdeen University and then worked in the NHS doing research around medical training and workforce planning for 20 years.’
The work was demanding and all the time Fiona struggled with feelings of depression — despite the medication she was prescribed.
When she reached her 50s, she noticed problems with her memory, so when she developed irritable bowel syndrome, she retired.
In 2012, a new doctor advised her to come off nitrazepam as it was ‘no longer recommended for epilepsy’. With no advice or support from her GP on how to do this, over four months Fiona gradually reduced her dose before finally stopping altogether.
While this minimised the immediate withdrawal symptoms, it was not the end of the story. ‘I noticed I was slowing down and becoming less able to function over the next few months and was worried that I was becoming more depressed again,’ says Fiona, who is divorced.
‘I had to stay in bed with the curtains drawn all day as I became sensitive to daylight and couldn’t stand the noise of the radio or TV.
‘I struggled to even read a book. Every nerve in my body was screaming out. Even wearing underwear was painful — the pressure was like a burning sensation. I felt as if someone was torturing me day and night.
‘For the next three months I felt so ill I couldn’t even make a phone call. I was totally isolated.’
In January 2014, she summoned the strength to take a taxi to see her GP, only to be told ‘it was impossible’ that her symptoms could be due to withdrawal from benzodiazepines, but were ‘all down to depression’.
Her GP did agree to refer her to a psychiatrist. ‘The psychiatrist told me it couldn’t possibly be withdrawal effects from the drugs and told me “to think of my symptoms as being like ME”,’ says Fiona. But a leading expert in this field is in no doubt her symptoms were caused by the medication.
lack of support for patients
For too long, there has been a culture of denial among doctors — alongside a litany of broken promises by political leaders.
The shameful fact is that there are hundreds of thousands of people in this country who, like Fiona, have become innocently hooked on drugs such as benzodiazepines and opioid painkillers prescribed by their doctors, only to find themselves abandoned to their fate, with virtually no support or advice from the health service on how to come off these drugs.
It is the scandal no one talks about, which is why the Mail is backing a campaign, led by the British Medical Association (BMA), the Royal College of Psychiatrists and 17 other leading medical organisations and patient groups, for a national 24-hour helpline for those who have become dependent on prescription pills.
Benzodiazepines are one of the most shocking examples of what’s going wrong.
Latest figures show there were 12 million benzodiazepine prescriptions handed out in the UK in 2015 — with an estimated million-plus Britons taking them long-term, according to evidence published by the BMA in April.
Up to 30 per cent of people who are on a benzodiazepine such as diazepam have trouble coming off it, according to Professor Lader. In rare cases, withdrawal can even prove fatal. One such death was reported this month in the journal Annales Pharmaceutiques Francaises, though the exact physical cause was not explained.
Around a third of those with withdrawal problems develop hypersensitivity, according to Professor Lader.
‘The brain starts to wake up, and it over-wakes,’ he says. ‘Sounds appear loud and lights appear brighter. They also have a symptom whereby they feel very unsteady and they will walk round the room holding on to the walls.’
Even guidelines from treatment watchdog the National Institute for Health and Care Excellence (NICE) warn that benzodiazepine withdrawal can cause ‘confusion, toxic psychosis, convulsions or a condition resembling delirium tremens’ — the latter referring to the symptom seen in alcoholics.
PATIENTS TOLD IT’S ALL IN THEIR MIND
These are among the plethora of bizarre disabling problems suffered by Fiona French and countless others. And yet, as she discovered, these withdrawal effects are too often labelled by doctors as ‘medically unexplained’ — they are dismissed as ‘all in the mind’.
As Marion Brown, a psychotherapist working with the BMA on its campaign, explains: ‘There is a pattern in patients’ notes where doctors don’t believe that their withdrawal symptoms, such as pain, fits and psychiatric disorders such as panic and obsessiveness, are associated with the drugs.
‘GPs come to regard these victims as “heart-sink patients” [who exasperate or defeat their doctors by their behaviour] whose problems are psychological.
‘All too often doctors fail to take note of the fact they have been on benzodiazepines for years.
‘The medics dismiss the problems as “medically unexplained symptoms” [MUS] or give patients psychiatric drugs such as anti-depressants, which only worsen the problem by putting their brain chemistry even more off-balance and stall their chances of recovery. It’s quite horrifying.’
This denial goes right to the top of the NHS. In February, the Joint Commissioning Panel for Mental Health put out guidance on MUS, saying symptoms are ‘presentations caused, or exacerbated, by mental health problems such as anxiety, depression or personality disorders’.
MPS’ ENDLESS BROKEN PROMISES
‘Doctors use the “unexplained” label as a cop-out,’ says Barry Haslam, who has long campaigned for benzodiazepine victims following his own experience of ten years on them.
Haslam, a retired accountant from Oldham, Lancashire, says the symptoms are unexplained ‘because the medical professionals have never wanted to take responsibility; if they did, they might be sued on a massive scale.
‘This is not a medical problem. It is a political problem that needs a political solution.’
For decades, politicians have promised much yet failed to deliver. Back in 1994, Mr Haslam received a personal letter from David Blunkett, then Labour’s Shadow Secretary of State for Health, describing benzodiazepine over-prescription as ‘a national scandal’. Blunkett pledged that a Labour government would act to ensure justice for victims of the drugs. But after Labour won the 1997 General Election, it did no such thing.
Labour was not the first political party with empty promises. In 1993, the Conservatives announced that GPs should be given local targets for reducing benzodiazepine prescriptions. Nothing came of this.
In 2008, Haslam’s campaigning colleague Michael Behan, a researcher for the All-Party Parliamentary Group on Tranquilliser Addiction, pointed out that as a backbench Labour MP, Dawn Primarolo had asked more than 50 questions pressing for compensation for victims.
But according to Mr Behan, after Primarolo was made Minister for Public Health, her department did not move ‘one iota’. More hollow words came from David Cameron who, as prime minister in 2011, declared: ‘Tranquilliser addiction is an extreme problem in our country . . . We must deal with the problem at source.’
Mr Haslam persuaded his local health authority to fund a withdrawal support service for the 5,000 people in Oldham stuck on long-term prescriptions.
Now, along with a spin-off service in Bury, it remains England’s only NHS-funded facility.
In 2012, Anne Milton, then Conservative junior minister for health, visited. She had promised a year earlier: ‘We need to make sure that we’ve got the right services in place to give people the help they need to get off these drugs.’
But again, Mr Haslam says, no practical changes occurred. In 2013, Anna Soubry, Milton’s successor at the Department of Health, made a remarkably similar declaration in a radio interview, saying that the issue of prescribed drug dependence ‘has not been sexy. The time has now come for us to put it up the agenda’.
Yet today the problems are as bad as ever. ‘Public health ministers come up to Oldham, see the service at work and promise things — then they return to the Westminster bubble and do the opposite,’ says Mr Haslam
Paul Flynn, a Labour MP and vice-chair of the All-Party Parliamentary Group for Drug Policy Reform, adds: ‘The history of politicians’ broken promises for action on these drugs is so bad it threatens to give cynical opportunism a bad name.’
But he is optimistic that change will finally happen. ‘Now we have a broad base of people supporting the helpline, including medical experts, former ministers and members of the House of Lords. I think the pressure will prove persuasive.’
In the meantime, patients such as Fiona French have to turn to the internet in order to find support. ‘I joined a group called Benzo Buddies and that has been my lifeline for the past three years,’ she says.
Four years after quitting her pills, Fiona is still troubled by crippling symptoms.‘I’ve lived a half-life, but I had hoped things would improve in my retirement,’ she says.
‘Instead I’ve been left to cope alone with terrible withdrawal symptoms and permanent neurological damage. These days I can hardly walk and I spend most days in bed. I look back on my life and there are big chunks I can’t remember. It’s too late for me — and maybe doctors didn’t know about these effects back in the Eighties — but they do now. So why are these drugs still being prescribed?
‘I’m not a vengeful person; all I want is an acknowledgement that my symptoms have been caused by these drugs.’
She takes comfort from the BMA’s campaign for a helpline and specialist services for prescription drug dependency. ‘This is the first time the medical profession has acknowledged there is a problem with prescribed drugs and that people need help coming off them,’ she says.
‘You don’t expect prescription drugs to do you harm, but I feel I was chemically poisoned by them.’