HOOKED ON PILLS
For 18 months the Mail has been campaigning for the victims left dependent on prescription pills. As a major report finds millions are being affected, change has never been more essential
STEVIE LEWIS went to her GP for help with insomnia after struggling with the pressure of starting up a business consultancy. The 41-yearold hoped she would be given something to help her sleep. ‘But to my surprise the doctor announced that I was on the edge of clinical depression – what my mother’s generation would have called a nervous breakdown,’ she recalls.
Instead of sleeping tablets, she was given a prescription for paroxetine, an antidepressant known as a selective serotonin reuptake inhibitor (SSRI). These are thought to work by increasing the level of mood-enhancing chemical serotonin in the brain.
‘I was shocked, not least when he told me I had a chemical imbal- ance in my brain,’ says Stevie, from Bristol but now living in Wales. ‘I thought very carefully about whether I should take this drug but in the end I did, because I believed him – he was my doctor.’
However, her shock at being prescribed an antidepressant was nothing compared to the horror that awaited when she tried to wean herself off paroxetine.
Stevie had unknowingly embarked on a 20-year battle to extricate herself from the grip of a drug she never needed, during which she would struggle with appalling sideeffects doctors refused to acknowledge were caused by withdrawal, dismissing them as a return of her original symptoms.
Antidepressants, she was told, were not addictive and she could stop taking them. But when she tried she found herself running a gauntlet of horrific side-effects, including extreme anxiety and an irrational terror of everyday acts, objects and places. At times, she felt she might be going mad.
BUT as revealed in the Mail today, a major new study suggests that, far from losing her mind, Stevie – like millions of patients – was indeed experiencing drug withdrawal.
The study, one of the biggest reviews of research studies investigating the incidence, severity and duration of reactions to antidepressant withdrawal, concludes that the phenomenon is not only very real, but ‘much more widespread, severe and long-lasting’ than doctors have been led to believe for years by official guidance.
It backs growing concerns about antidepressants that have led to calls for the Scottish Government to take action to recognise the problem and support those who have been harmed.
The research was carried out for the UK All Party Parliamentary Group for Prescribed Drug Dependence and is published in the journal Addictive Behaviours.
Researchers looked at 23 studies over the past two decades and concluded 56 per cent of all patients on antidepressants suffer withdrawal symptoms, which 46 per cent described as severe. They also found it is ‘not uncommon for patients to experience symptoms for several weeks, months or longer’. Some patients experience debilitating symptoms for years.
These findings back a petition to the Scottish parliament by campaign group Recovery and Renewal, which supports patients addicted to painkillers and antidepressants prescribed by doctors.
It calls for recognition of the problem, better support for patients and a national telephone support helpline. In Scotland the number of antidepressant prescription items dispensed annually soared from 3.5million to 6.1million between 2006 and 2016.
The findings also, say the authors, make nonsense of official guidance, which advises prescribing doctors that while withdrawal symptoms ‘can be severe’, they are ‘usually mild and self-limiting over about one week’.
This is issued by the National Institute for Health and Care Excellence (NICE). It does not have formal status in Scotland but doctors can refer to it, which they are likely to do in the absence of any similar guidance north of the Border. Healthcare Improvement Scotland says clinicians may do this to provide the ‘best care’.
But current NICE guidance, updated in April, ‘is not only out of date but doesn’t respect the evidence base’, says Dr James Davies, coauthor of the paper and a reader in medical anthropology and mental health at the University of Roehampton.
The personal cost to patients is incalculable. The faulty guidance is causing ‘many doctors to misdiagnose withdrawal symptoms, resulting in much unnecessary and harmful long-term prescribing’, Dr Davies suggests. When people stop taking antidepressants and experience withdrawal, ‘they go to the doctor who looks at the NICE guidelines and concludes it can’t be withdrawal. Patients are regularly having withdrawal reactions either denied, ignored or, most concerningly, misdiagnosed as a relapse in their condition, at which point the drugs are reinstated.’
Evidence to the Holyrood petitions committee backs this up. A submission from the Council for Evidence-based Psychiatry says: ‘There is a lot of variability in terms of the response by doctors – including psychiatrists – to the issue of prescribed drug dependence and withdrawal, due to a lack of awareness and relevant training.’
While it is important to note many people say these medications have helped them, there is no scientific proof they do so by reversing a ‘chemical imbalance’. There is good evidence that, for most, they are no more beneficial than placebos. ‘But unlike placebos, they cause side-effects and withdrawal problems,’ says Dr Davies.
The new review of evidence has been submitted to Public Health England, which is conducting
a review into prescription pill dependency, including antidepressants, set up in January, after a campaign backed by the Daily Mail. Scottish Government officials are observing this review.
The new evidence has been submitted to NICE, which is reviewing its guidance on antidepressants. This is based chiefly on a paper presented at a one-day psychiatric symposium on ‘antidepressant discontinuation syndrome’ held in Phoenix, Arizona, in 1996, funded by drugs company Eli Lilly.
Beyond this single paper, ‘we have looked very thoroughly for the evidence to support the advice, and there isn’t any’, says John Read, Professor of Clinical Psychology at the University of East London and a co-author of the new paper. ‘There’s no way they can put out the same advice again once they’ve read this,’ Professor Read told Good Health.
Psychiatrist Dr Joanna Moncrieff, a member of the Critical Psychiatry Network and a leading critic of the misuse of psychiatric drugs, welcomed the new research, saying: ‘This paper shows official documents and the psychiatric profession have not taken this issue seriously, not put enough effort into researching it and not wanted to face up to the problems these drugs can cause people.
‘We are giving people these drugs for years on end and we haven’t bothered to work out what happens to them, how that affects the body and what happens when people stop them. That seems just outrageous, a terrible situation. We need to get away from viewing depression, distress and anxiety as medical problems.’
Many, she believes, would not start taking antidepressants if they knew the battle they might have to get off them. ‘There are lots of people who contact me who have really struggled trying to get off this medication and feel so angry this was not highlighted.
‘This data is there and both doctors and patients need to be much more cautious about starting antidepressants. It is quite clear getting off them is not easy for a substantial number of people.’
Among them Stevie Lewis. She decided to come off paroxetine for the first time after she’d been taking it for five months but within a few days began to suffer ‘tremendous nausea and dizziness’. She had no idea it had anything to do with the drug and neither did her doctor, who diagnosed labyrinthitis, an inner-ear disorder affecting balance. In fact, dizziness is a welldocumented side-effect associated with stopping antidepressants.
In March 1998, nine months after coming off the drug, Stevie reluctantly went back on it after three miscarriages and the death of her mother.
‘Looking back, all I really needed was some grief counselling,’ says Stevie, now 63. ‘It’s absurd that, given what I’d gone through, that someone could suggest I was feeling low because I had a chemical imbalance in my brain.’
In the spring of 1999, after a year back on paroxetine, Stevie again decided to quit – but this time, ‘I just couldn’t do it’.
It was only in 2002, when she contacted a support group online, that she realised she had become dependent on the drug and was experiencing withdrawal.
But even with that knowledge, it would take her 15 more years to get free of paroxetine.
Time after time, and with the support of a new doctor who recognised the problem as withdrawal, she tried to reduce her doses. ‘I’m strong, capable and strong-willed,’ she says. ‘I didn’t want to be taking this stuff any more and thought I could get off it. But I couldn’t.’
HER marriage broke up under the strain – and when she met a new partner in 2006 she decided to stick with the smallest dose she could take without triggering withdrawal symptoms. ‘I didn’t want to put the poor man through all of that,’ she says.
It was March 2013 before she plucked up the courage to stop even her low dose of 3mg – and ‘went through the most terrible withdrawal’. ‘My movement disorder was so extreme I could barely walk across the room. I had severe anxiety, terror really,’ she recalls.
In 2014 she married Roger, now 75, a retired pensions services manager, and they fought the drug together. She calls him ‘a saint’. Stevie endured three more traumatic years before the nightmare began to fade and another year before she felt completely normal again.
She was finally free of withdrawal effects 18 months ago, having spent years battling a drug she believes she should never have been given. She tried to retrain as a therapist – but had to give up when her movement disorder started.
She says she feels ‘badly let down’ by the medical profession but is focusing her energy on campaigning for awareness and pressing for a change in the NICE guidelines.
A NICE spokesman said its updated guidance had not yet been finalised and publication was ‘not imminent’.
A spokesman for Healthcare Improvement Scotland said: ‘In the absence of a clinical guideline for Scotland, NICE guidelines have no formal status, but may be of interest to clinicians in Scotland in informing the best care for their patients.’