After eight years of campaigning for patients who’ve become dependent on their medicines, I was pleased to be asked to join a committee drawing up new official guidelines to tackle the problem in 2019.
The committee was supposed to produce evidence-based recommendations for doctors and prescribers covering the safe prescribing and withdrawal of medicines that can cause dependence.
These include widely prescribed drugs such as sleeping pills, painkillers and antidepressants, taken by millions of people in this country.
But earlier this year I resigned from the committee because I believe it has ignored key evidence and, as a result, many patients won’t be able to come off their drugs safely.
After eight years of campaigning for patients who’ve become dependent on their medicines, I was pleased to be asked to join a committee drawing up new official guidelines to tackle the problem in 2019
It’s an issue that matters to me personally, as I spent more than three years unable to function after withdrawing from sleeping pills and antidepressants.
When I was 19, I was admitted to hospital for a sinus operation and suffered from post-operative headaches and other side-effects, likely caused by the anaesthetic.
However, this was incorrectly diagnosed, and I was prescribed a series of antidepressants and sleeping pills. I remained on these for years with very little monitoring, until I eventually went cold turkey in 2009 on the advice of my doctor at the time.
I experienced devastating withdrawal symptoms and was unable to work or leave the house for years.
The suffering was indescribable: symptoms included severe memory and cognitive problems, sensory distortions, extreme anxiety, insomnia, tinnitus and nerve pain.
Somehow I dragged myself through each day until things improved, though the nerve pain and tinnitus continued more than ten years later. I sued my doctor as he should never have withdrawn the drugs so quickly — you must always taper off these medicines very slowly.
During this time, I discovered online forums and Facebook groups where thousands of others were suffering in a similar way, invisible to the health system and without any NHS-funded services to help.
The only life-saving support they received was from others in these online communities.
But for some people the suffering is so severe it leads to suicide.
Yet this was supposed to change after Public Health England (PHE) published a review in 2019 showing that around 25 per cent of adults had been prescribed one or more of these drugs in the previous year, with huge numbers taking them for years, often contrary to the prescribing guidelines.
The review was undertaken in response to pressure from the All-Party Parliamentary Group (APPG) for Prescribed Drug Dependence (which I helped to establish), patient groups and the Daily Mail.
The review made various recommendations, including the provision of a national 24-hour helpline as well as local withdrawal support services. But so far none of these has materialised.
The guidelines state that doctors should not write a prescription at the first appointment; highlight the importance of shared decision-making; and make clear the risks of the medicines must be discussed
It also recommended improved clinical guidance for doctors. This is a task for the National Institute for Health and Care Excellence (NICE), and specifically the committee I joined in 2019.
Six months after I resigned, NICE has just published draft guidelines for public consultation. And as I feared, they are missing essential information to help doctors and patients withdraw from these drugs safely.
I should stress that there are many good things to say about the new guidelines. For example, they recommend that patients should always be offered alternatives to these drugs.
The guidelines state that doctors should not write a prescription at the first appointment; highlight the importance of shared decision-making; and make clear the risks of the medicines must be discussed.
Most importantly, they recommend that a written management plan is given to the patient, to include their diagnosis, the proposed duration of treatment, the risks of overdose and the next review date.
Too often, patients have been given these medicines for too long without being told about the risks; it is a very positive step that prescribers will now be told to document all of this.
But this guideline is also supposed to support safe withdrawal from these drugs to avoid the crippling symptoms that thousands of patients like me have experienced. They can be entirely avoided with a slow, safe taper.
And withdrawal symptoms are not just devastating in terms of the suffering caused — they can be misinterpreted as a new condition for which additional dependency-forming medicines are prescribed, or misdiagnosed as a return of the old problem.
The new withdrawal guidelines were expected to provide clear instructions to help avoid this, but unfortunately fail to do so.
NICE guidelines are developed using a hierarchy of evidence. At the top is the gold standard of systematic reviews of randomised controlled trials, which compare two groups of patients — where one receives the treatment while the other does not.
Below randomised controlled trials are other acceptable forms of evidence. As NICE says on its website: ‘This can include qualitative and quantitative evidence, from the literature or submitted by stakeholders. It can also include observational data and testimonies from experts.’
In other words, it can include reports from patient groups and experts themselves.
It was clear from the beginning that there were very few randomised controlled trials that would be relevant. Drug companies have little incentive to study safe ways to take patients off their drugs — they profit when more people consume them.
Yet the NICE researchers wasted months trawling through the evidence, hauling up long-forgotten randomised controlled trials from the murky depths of largely industry-sponsored research. More than 1,500 pages of evidence review were written up, most of which widely missed the mark.
That’s because none of these studies covered slow, hyperbolic tapering, the most important intervention for safe withdrawal. It has been developed over many years based on the experience of thousands of people and is backed by articles published in journals.
Hyperbolic tapering means reducing the dose by a small percentage of the previous dose rather than the same fixed amount each time. It is the basis of recent guidance on withdrawal from antidepressants issued by the Royal College of Psychiatrists, and features in the current edition of the Maudsley Prescribing Guidelines (the UK’s bible for psychiatric prescribing).
And yet — perhaps because this method has not been subject to a randomised controlled trial — the draft of the new NICE guidelines fails to include any details, such as how to taper, how frequently to reduce and by how much.
These are supposed to be guidelines on safe withdrawal, and yet they fail to cover the most basic principles. It’s like publishing a recipe for roast chicken without giving either the oven temperature or the cooking time.
On its website NICE claims it takes ‘a comprehensive approach to assessing the best evidence that is available’. Yet for the draft of these guidelines it has not done so. It failed to review the many articles on hyperbolic tapering. It has not invited withdrawal experts to give testimony, nor reviewed submissions from patient groups and withdrawal charities.
It is shocking that these guidelines and the original PHE review only happened because of the campaigning of patients — and yet now, at the critical moment, their experience is being ignored.
As a result, these guidelines will not provide doctors and patients with the simple recipe they desperately need for people to withdraw from these drugs safely.
I raised these issues with the NICE committee and unfortunately the other members did not agree with my concerns. I therefore decided to resign as I could not support the guidelines.
We must ensure these new guidelines include all the best evidence — including patient-developed evidence — in order to reduce the terrible harms of prescribed drug dependence.