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 was intended to provide evidence-based recommendations that doctors and prescribers could follow regarding safe prescribing, withdrawal and treatment of drugs that may cause dependence.
This includes widely-prescribed drugs like sleeping pills, antidepressants, and painkillers. Millions of Americans use these medications.
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.
19 years old, I went to the hospital for sinus surgery. After my operation I experienced headaches and side effects.
This was wrongly diagnosed and I was given a number of sleeping pills and antidepressants. These medications were continued for many years without any monitoring. I finally stopped taking them in 2009, on advice from my doctor.
It was difficult to leave my house or work due to severe withdrawal symptoms.
This was a terrible experience.
I kept going through every day until the symptoms improved. But, the nerve pain and tinnitus still plagued me 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 I sued my doctor as he should never have withdrawn the drugs so quickly — you must always taper off these medicines very slowly.
It was during this period that I came across online forums, Facebook groups, and other support groups for people who were also suffering from similar conditions. These are invisible to the NHS, and there is no NHS-funded service to assist them.
They received no lifesaving assistance from anyone outside these communities.
Some people may even commit suicide because of their suffering.
This was to change in 2019, when Public Health England published an analysis showing that approximately 25% of adult patients had received one or more prescriptions for these drugs within the past year. Many others were taking the drug long-term, sometimes in violation of the prescribing guidelines.
The All-Party Parliamentary Group of Prescribed Drug Dependence (which was founded by me), patient groups, as well as the Daily Mail pressed for a review.
The report made several recommendations including the establishment of a 24-hour national helpline and local support for withdrawal. However, none of those recommendations have been realized.
Guidelines state that doctors must not give a prescription to patients at their first appointment. They should emphasize the importance and share decision-making.
They also suggested better clinical guidance for doctors. This task is for NICE, and in particular the NICE committee that I am a member of in 2019.
NICE published the draft guidelines to be consulted six months ago, after my resignation. As I was afraid, the guidelines are lacking essential information that will allow doctors to safely withdraw patients from these medications.
There are many things I like about these new guidelines. They recommend, for example that patients be provided with alternatives to the drugs.
According to the guidelines, doctors must not give a prescription in the first consultation; stress the importance and benefits of joint decision-making; make it clear what the risks are; and have a discussion about the possible side effects.
The most important thing is that they suggest that patients receive a written treatment plan. It should contain the following: the patient’s diagnosis, proposed length of treatment and next review date.
Many times, the patients are given too many medicines without ever being informed about their risks. This is why it’s a positive thing that doctors will be instructed to keep all documentation.
However, this guideline also supports safe withdrawal from drugs in order to avoid crippling side effects like the ones I have seen. You can avoid them completely by taking a gradual, but safe withdrawal.
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 withdrawal guidelines had been expected to give clear directions to prevent this from happening, but they failed to do so.
NICE guidelines were developed using a hierarchy. 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.
Another acceptable form of evidence is the below randomised controlled trial. 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.’
This means that it could include reports from experts and patient groups.
From the very beginning, it was obvious that not many randomised controlled studies would prove to be of any value. Drug companies have little incentive to study safe ways to take patients off their drugs — they profit when more people consume them.
NICE researchers spent many months digging through the evidence to find long-forgotten randomised controlled trial data. This was despite the fact that the majority of the industry-sponsored research had been covered up. There were more than 1,500 pages worth of evidence reviews, many of which are wildly off the mark.
That’s because none of these studies covered slow, hyperbolic tapering, the most important intervention for safe withdrawal. The taper was developed over many decades based upon the experience of thousands, and it is supported by published articles in journals.
Hyperbolic tapering refers to reducing dose by a smaller percentage than before, rather that using the exact same amount every 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.
They are meant to provide guidelines for safe withdrawal but they do not cover all the basics. 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’. It hasn’t done this for its draft guidelines. The many articles about hyperbolic tapering were not reviewed by the committee. The committee hasn’t invited experts in withdrawal to testify, and it hasn’t reviewed any submissions by patient groups or 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.
This means that these guidelines are not intended to provide physicians and patients the easy recipe for safe withdrawal from prescription drugs.
These issues were raised with NICE and the committee members disagreed. As I was unable to support the guidelines, I decided to resign.
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.