'When we look back in 20 years' time, this will be a turning point'

Our journalist Ella Rhodes reports on a Public Health England review of withdrawal effects, and speaks to a British Psychological Society representative from the expert reference group – Professor John Read.

Between 2017 and 2018 one in four adults in England were prescribed drugs which could lead to dependence or debilitating withdrawal effects, a Public Health England review has revealed – with prescription rates rising for some classes of drug. Antidepressants were included in the review, for the first time in a government-level report, despite many years of denial that the drugs could cause long-term, severe withdrawal effects. 

The review, written with input from the British Psychological Society, also considered benzodiazepines, z-drugs (prescribed for insomnia), opioid pain medications, and gabapentinoids – all of which are associated with dependence and withdrawal. Between 2015 and 2016 15.8 per cent of the adult population received prescriptions for antidepressants, rising to 16.6 per cent between 2017 and 2018. During the same two periods prescriptions for gabapentinoids rose from 2.9 per cent to 3.3 per cent. There were small decreases in prescriptions for the other three drug classes. 

The review also found that prescription rates for women were 1.5 times higher than men, increasing with age. This pattern was most apparent in antidepressant prescriptions: between 2017 to 2018, 21.3 per cent of women and 11.6 per cent of men were prescribed the drugs. Prescription rates of antidepressants, opioids and gabapentinoids were also found to be higher in more deprived areas of England. 

Antidepressants have been associated with withdrawal effects, which vary between patients in terms of their length and severity. These effects can include flu-like symptoms, insomnia, nausea, imbalance, sensory disturbances and hyperarousal. This has not always been officially acknowledged, but thanks to the work of the All Party Parliamentary Group for Prescribed Drug Dependence they were included in this review.

Professor of Clinical Psychology John Read (University of East London) served on the PHE review expert reference group as a representative of the British Psychological Society, in part thanks to a systematic review on antidepressant medication he conducted with James Davies (University of Roehampton). That review found that more than half of people experience withdrawal effects when stopping antidepressant medication, that almost half of those described the effects as severe, and that withdrawal effects can last for weeks or months.   

‘It really is a first for a government-level report to look into [antidepressant withdrawal] in that depth and come out with those strong recommendations acknowledging the extent of the problem,’ Read told us. ‘It is hugely important. When we look back on all this in 20 year’s time this will be a turning point.’

‘The final recommendation of the PHE report is for proper research… We absolutely need funding for not only the extent of the problem but more importantly how to help people come off. We just don’t know. We know for most people it’s better to do it very slowly, we know that people do report that the last little bit is the hardest… but we don’t have good research on the most effective form of support. We’re just at the beginning really. I think it’s a moral outrage that we’ve been prescribing millions and millions of these drugs for decades and we don’t know anything about how to help people come off.’

Read on for more of Professor Read's comments: 

"The issue of antidepressant withdrawal has been ignored, actively denied or minimised for several decades. Unfortunately the NICE guidelines have been part of that distortion right up until the current day. As a result of all the work we've done they are now reviewing the guidelines… we know they will be changing them substantially.

The NICE guidelines are a fundamental background issue. Currently the NICE guidance on antidepressants states that withdrawal only lasts one to two weeks, and that it's mild. We did a freedom of information request to ask for the research behind that. We wanted to make sure we didn't miss any studies in our systematic review, and we assumed they would have several studies to support that statement. It turned out there were none. They had no studies to support that statement. I'm fairly cynical about these sorts of things, but we were quite shocked.

For a long, long time people have been sharing their experiences online, talking about how when they go to the GP and try to talk about withdrawal they're told it's not withdrawal, it's the illness coming back. Just at the point they're needing some help to gradually withdraw, their medication is increased. You can't, in a way, blame the GPs for that. They'll look at the guidelines and if the patient says this has been going on for three or four weeks the guidelines say quite clearly that that can't be true – so they're left with the other interpretation that it's the illness coming back.

We’re not talking a few hundred people here, we're talking millions. The latest figures are one in six adults are now prescribed antidepressants every year. This is bizarre. About eight per cent of the population have been on them for two years or more. You can call it an epidemic of dependence on anti-depressants… you've got millions of people stuck on these drugs finding it very, very hard to come off and, until recently, psychiatry and NICE guidelines denying that there's a problem.

The pressure to include antidepressants in the PHE review came from the All Party Parliamentary Group on Prescribed Drug Dependence, a very effective group chaired by Oliver Letwin. It’s hugely important that antidepressants were in there and it was very controversial. Another strand to how I got involved in the review started in February 2018 when the front page of most of our newspapers were covered with news of a ‘major breakthrough’ around antidepressants. They said that now we know they definitely work; it was a systematic review and was presented as being new. But it was the same old stuff saying you've got about a two-point difference on the Hamilton scale between antidepressants and placebo. Several people commented in the media, including Joanna Moncreiff, saying it was nothing new and stressing the fact the review didn't even mention adverse effects including withdrawal.

At that point – and this was the crucial moment – Wendy Burn (President of the Royal College of Psychiatrists) and David Baldwin (Chair of their Psychopharmacology Committee), published a letter in The Times on 24 February 2018 stating categorically that in the vast majority of patients any unpleasant symptoms experienced on discontinuing antidepressants have resolved within two weeks of stopping treatment. I wrote to ask them to provide the evidence for that, or retract the statement. When they refused to do either,  30 of us wrote to the Royal College of Psychiatrists – 10 professors, 10 psychiatrists, and most significantly 10 people who had been trying to get off these drugs for a year or more. They rejected the complaint but still would not provide the evidence.

We ended up writing to Matt Hancock as Secretary of State for Health and Social Care, stating our view that the Royal College was operating outside the ethical, professional and scientific standards expected of a body representing medical professionals. They have more recently done a complete about face, which is excellent. To their credit that's quite an honourable thing to do. They put out a position statement acknowledging the seriousness of withdrawal, that it can last a lot longer than two weeks and so on. There had been huge media coverage of our literature review, the other colleges were on board, the British Medical Association were on board…

The outcome has been excellent. I think the report has come up with some excellent recommendations. The key ones are for services for people who are trying to withdraw, including a national hotline. There’s an updating of the guidelines which is already happening, and a public information campaign to inform people about the pros and cons of these drugs. Matt Hancock is very keen on social prescribing, and he's talked about the possibility of having cigarette-packet-type warnings on the outside of medication bottles. I think that would be a radical and important step. We have to now wait and see whether the minister will implement those recommendations… we are fairly confident that he will.

The final recommendation of the PHE report is for proper research. The majority of drug trials are funded by drug companies… are they likely to have a genuine interest in what happens when you come off the medication? When James Davies and I looked at the research it was sparse, and it took 40-50 years to have 17 studies on this, compared to the hundreds and hundreds of drug company sponsored studies which have looked at which drug is more effective than the other.

So we know for most people it's better to come off very slowly, we know that people do report that the last little bit is the hardest, and there's biological theories around why that should be. But we don't have good research on the most effective form of support. There's one or two studies just about to come out about the use of tapering strips, where you can really control the dose much more minutely. We're just at the beginning really. I think it's a moral outrage that we've been prescribing millions and millions of these drugs for decades, and we don't know anything about how to help people come off. I find that offensive.

The International Institute for Psychiatric Withdrawal met in Sweden during the last weekend in September. 37 of the leading experts from around the world on this issue made national and international plans to disseminate information and get support off the ground in every country we can influence. We heard about brilliant online initiatives led by experts-by-experience, guiding people through the withdrawal process, such as the Inner Compass Initiative in the USA. We endorsed the PHE review and its recommendations, but added anti-psychotics to the list.

It really is a first for a government-level report to look into these issues in depth and come out with those strong recommendations acknowledging the extent of the problem. It is hugely important. When we look back in 20 years’ time, this will be a turning point."

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