After an eight-year campaign for patients who depend on their drugs, I was asked in 2019 to join a committee preparing new official guidelines to tackle the problem.
The committee was supposed to present evidence-based recommendations for doctors and prescribers that cover safely prescribing and withdrawing drugs that can lead to dependence.
These include widely prescribed drugs such as sleeping pills, pain relievers and antidepressants taken by millions of people in this country.
But earlier this year I resigned from the committee because I believe it ignored important evidence and, as a result, many patients would not be able to safely wean off their medications.
After an eight-year campaign for patients who have become dependent on their drugs, I was asked to join a committee in 2019 to prepare new official guidelines to tackle the problem.
This is an issue that matters to me personally, as I was unable to function for more than three years after I went off sleeping pills and antidepressants.
When I was 19, I was admitted to the hospital for a sinus operation and suffered from post-operative headaches and other side effects, possibly caused by the anaesthetic.
However, it was misdiagnosed, and I was prescribed a series of antidepressants and sleeping pills. I was on these for years with very little monitoring, until I finally went cold turkey on my doctor’s advice in 2009.
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 every day until things got better, although the nerve pain and tinnitus continued for more than ten years. I sued my doc because he should never have taken the drugs back so soon – you should always stop these drugs very slowly.
During this time, I searched online forums and Facebook groups where thousands of others were suffering similarly, invisible to the health system and those without any NHS-funded services to help.
The only life-saving support she received was from others in these online communities.
But for some people the pain is so severe that it leads to suicide.
Yet that should have changed after Public Health England (PHE) published a review in 2019 showing that around 25 percent of adults had been prescribed one or more of these drugs in the past year, with a large number In the U.S. they were taken for years, often to the contrary prescribed guidelines.
This review was conducted in response to pressure from the All-Party Parliamentary Group (APPG) on Prescribed Drug Dependence (which I helped 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 evacuation support services. But till now none of these have come into effect.
The guidelines state that doctors should not write a prescription at the time of the first appointment; throw light on the importance of shared decision making; and clarify that the risks of the drugs should be discussed
It also recommended better clinical guidance for doctors. This is a task for the National Institute for Health and Care Excellence (NICE) and specifically for the committee I joined in 2019.
Six months after I resigned, NICE has published draft guidelines for public consultation. And as I feared, they are missing essential information to help doctors and patients safely withdraw from these drugs.
Let me 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 time of the first appointment; throw light on the importance of shared decision making; and clarify that the risks of the drugs should be discussed.
Most importantly, they recommend that the patient be given a written management plan, which includes their diagnosis, the proposed duration of treatment, the risk of overdose, and the next review date.
Very often, these drugs are given for very long periods of time without informing patients about the risks; It is a very positive step that now the prescriber will be asked to document all this.
But this guideline is also supposed to support safe withdrawal from these drugs to avoid the severe symptoms that thousands of patients like me have experienced. They can be avoided entirely with a slow, safe taper.
And withdrawal symptoms aren’t just devastating because of suffering — they can be misdiagnosed as a new condition for which additional dependency-forming drugs are prescribed, or misdiagnosed as a return to a chronic problem.
The new evacuation guidelines were expected to have clear instructions to help avoid this, but unfortunately failed to do so.
The NICE guidelines have been developed using a hierarchy of evidence. At the top is the gold standard of systematic reviews of randomized controlled trials, which compare two groups of patients – where one receives treatment while the other does not.
Below are other accepted forms of randomized controlled trial evidence. As NICE states on its website: ‘This may include qualitative and quantitative evidence from the literature or submitted by stakeholders. It may also include observational data and expert testimony.
In other words, it may include reports from patient groups and the experts themselves.
It was clear from the start that there were very few randomized controlled trials that would be relevant. Drug companies have little incentive to study safer ways to wean patients off their drugs – they benefit when more people take them.
Yet NICE researchers wasted months sifting through the evidence, hauling long-forgotten randomized controlled trials out of the hazy depths of massive industry-sponsored research. More than 1,500 pages of evidence review were written, most of which widely missed the mark.
This is because none of these studies covered slow, hyperbolic tapering, which is the most important intervention for safe evacuation. It has been developed over many years based on the experience of thousands of people and is supported by articles published in journals.
Hyperbolic tapering means reducing the dose by a small percentage of the previous dose, rather than by the same fixed amount each time. It forms the basis for recent guidance on withdrawal from antidepressants issued by the Royal College of Psychiatrists, and in the current edition of Maudsley Prescribing Guidelines (UK’s Bible for Psychiatric Prescribing).
And yet – perhaps because this method is not subject to a randomized controlled trial – the draft new NICE guidelines fail to include any details, such as how to taper, how often to reduce and how much to do. .
These are supposed to be guidelines on safe withdrawals, and yet they fail to cover the most basic principles. It’s like publishing a recipe for roast chicken without giving the oven temperature or cooking time.
On its website NICE claims it takes ‘a comprehensive approach to assessing the best evidence available’. Yet it has not done so for the purpose of drafting these guidelines. It failed to review several articles on hyperbolic tapering. It has not invited withdrawal experts to testify, nor has it reviewed submissions from patient groups and evacuation charities.
It is shocking that these guidelines and the original PHE review only led to patients’ publicity – and yet, at the critical moment, their experience is being ignored.
As a result, these guidelines will not provide doctors and patients with the simple prescription they desperately need to safely withdraw people from these drugs.
I took up these issues with the NICE committee and unfortunately the other members did not agree with my concerns. So I decided to resign as I could not support the guidelines.
We must ensure that these new guidelines contain all the best evidence – including patient-developed evidence – to reduce the horrific harms of prescribing drug dependence.
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