How is it taking so long to help people hooked on their prescription medicines? Thousands are addicted to drugs given to them by their doctors. But promises of support still haven’t been met
As former patients such as Lucy Fernandes and Luke Montagu know all too well, there is a safe way to come off the prescription drugs they have become dependent on through no fault of their own.
Going ‘cold turkey’ — simply stopping overnight — can be disastrous, causing withdrawal symptoms so bad that many are defeated and driven back to the very drugs they are trying to escape, by doctors who mistakenly ascribe the side-effects of withdrawal to a return of their original symptoms, sometimes even increasing their dose.
‘The solution is slow tapering — a carefully controlled, monitored reduction in frequency and dosage of a drug,’ Luke, co-founder of the All-Party Parliamentary Group (APPG) for Prescribed Drug Dependence, told Good Health. But the advice and support needed for this is not available for the vast majority of patients trapped on drugs they no longer need or, too often, should not have been prescribed. Instead, they are abandoned by a healthcare system that is quick to prescribe medication but ill-equipped to end reliance on it.
As former patients such as Lucy Fernandes (pictured above) and Luke Montagu know all too well, there is a safe way to come off the prescription drugs they have become dependent on through no fault of their own
And now campaigners fear the opportunity to address this problem, with the publication next month of new guidance on withdrawal, is about be squandered.
The numbers of people affected by prescription pill dependency are huge. An official review by Public Health England (PHE) showed that between 2017 and 2018, 11.5 million adults — a quarter of the adult population — were prescribed drugs that had the potential for addiction or withdrawal problems.
These include antidepressants, opioids (for chronic pain), gabapentinoids (used to treat epilepsy, neuropathic pain and, in the case of pregabalin, anxiety), benzodiazepines (for anxiety) and Z-drugs (sleeping tablets).
While many people say these drugs have helped them, others have experienced unbearable side-effects including sexual dysfunction, agitation and crippling anxiety, yet they are left on the drugs for months, or longer.
For years the Mail has reported stories of patients whose lives have been ruined, they say, by the very medication meant to help them but which has, instead, left them unable to lead normal lives. Some have even become suicidal.
And often these drugs had been wrongly given to them. The impact of this was revealed last October when the Mail reported new research exposing that £570 million was being wasted every year in England alone on prescriptions for dependency-forming pills — for patients who, according to NICE guidance, didn’t need them.
This would be enough to pay the salaries of 10,000 GPs or 20,000 nurses. (The fear is the pandemic has left many more dependent on opioid painkillers: a study by Aberdeen University published last year showed NHS patients waiting for hip or knee replacements were taking 40 per cent more addictive opioid painkillers as a result of surgery delays.)
And the human cost is huge — patients trying to come off the drugs reported ‘harmful effects and withdrawal symptoms on stopping benzodiazepines, Z-drugs, opioids and antidepressants which affected their wellbeing, personal, social and occupational functioning’, the PHE review revealed. ‘These effects and symptoms could last many months.’
The problem is exacerbated because ‘patients experienced barriers to accessing and engaging in treatment services. They felt there was a lack of information on the risks of medication and that doctors did not acknowledge or recognise withdrawal symptoms’.
For years the Mail has reported stories of patients whose lives have been ruined, they say, by the very medication meant to help them but which has, instead, left them unable to lead normal lives. Some have even become suicidal [File photo]
One of PHE’s key recommendations was new guidance for doctors on how to safely prescribe and wean patients off these drugs, to be issued by the National Institute for Health and Care Excellence (NICE). The guidance is due to be published within weeks.
But campaigners, including leading mental health bodies, fear this unique opportunity to change a system that fails to support the thousands of victims of prescription-drug dependency is about to be squandered. And that as a result, many people who put their faith in the doctors who gave them these drugs will be left battling a problem effectively of the medical authorities’ own making.
The PHE review that recommended the new guidance came after years of campaigning and evidence gathering by patient groups and the APPG for Prescribed Drug Dependence, backed by the Daily Mail — the review, set up in 2017, was delivered in 2019 and included recommendations for action, including new guidance on drug withdrawal.
Accordingly, in 2019 NICE set up a committee to gather evidence and submit recommendations for the new guidance, acknowledging that in many cases prescription drugs associated with dependence or withdrawal symptoms ‘may continue to be prescribed when they are no longer useful, solely because stopping can cause unpleasant withdrawal symptoms . . . if the dose is reduced or the medicine is stopped abruptly’.
The committee said it would look at evidence supporting ‘safe prescribing of medicines associated with dependence, optimum prescribing strategies to limit the risk of dependence . . . and methods for safe withdrawal of prescribed medicines associated with dependence or withdrawal symptoms’.
As a co-founder of the APPG, with personal experience of the dangers of prescription-drug dependency, Luke Montagu had gladly accepted an invitation to sit on the NICE committee.
But as he revealed in the Mail, he resigned last June because he believed his fellow committee members were turning a blind eye to the benefits of ‘hyperbolic tapering’ — a successful technique of weaning patients off drugs by reducing each dose by a small percentage of the previous one, rather than by the same fixed amount every time, which is the approach typically offered to patients at present (if they are given any advice at all).
The common practice is to reduce the dose of medications by half for 2-4 weeks, then perhaps by another half before stopping.
But campaigners and experts argue that this method of tapering is too crude and commonly leads to severe withdrawal symptoms that can be debilitating for some.
Hyperbolic tapering varies with the individual — for example, some patients can only reduce by 10 per cent or less of their most recent dose every two to four weeks.
In an impassioned column for the Mail in November 2021, Luke wrote that NICE was failing to live up to its own commitment to take ‘a comprehensive approach to assessing the best evidence that is available’, failing to ‘review the many articles on hyperbolic tapering’ and not inviting withdrawal experts to give testimony, nor reviewed submissions from patient groups and withdrawal charities.’
Londoner Lucy Fernandes, who tried by herself and failed to come off drugs she had been prescribed for anxiety, succeeded only when she finally stumbled upon the REST (Recovery Experience Sleeping Tablets and Tranquillisers) service at mental health charity Mind in Camden — one of the few services in the UK dedicated to guiding patients through tapering
As a result, Luke wrote, the long-awaited guidelines ‘will not provide doctors and patients with the simple recipe they desperately need for people to withdraw from these drugs safely’.
Luke knows about the subject from bitter personal experience. As a 19-year-old, he was incorrectly diagnosed and prescribed antidepressants and sleeping pills after suffering headaches and other side-effects that were probably caused by the anaesthetic for a sinus operation he underwent.
After 20 years on the medication, in 2009, on doctors’ advice, he went cold turkey and experienced ‘devastating withdrawal symptoms’ including severe memory and cognitive problems, extreme anxiety, insomnia, tinnitus and nerve pain which left him unable to work or leave the house for years.
It was only after meeting others online in similar situations that he discovered it was ‘vital to come off these drugs very slowly’ — a technique known as tapering.
‘But tapering isn’t easy. It requires advice and support, and it can take many months,’ Luke told Good Health.
Similarly, Londoner Lucy Fernandes, who tried by herself and failed to come off drugs she had been prescribed for anxiety, succeeded only when she finally stumbled upon the REST (Recovery Experience Sleeping Tablets and Tranquillisers) service at mental health charity Mind in Camden — one of the few services in the UK dedicated to guiding patients through tapering.
‘Before that I’d tried going cold turkey but they said, ‘Actually you need to do this really, really slowly.’ They didn’t do it in a didactic way. It was a community. I could speak to lots of others who’d had a similar experience and gained understanding and support from that.’
Following publication of the draft guidelines in December, the APPG for Prescribed Drug Dependence wrote to Dr Paul Chrisp, director of the NICE centre for guidelines, to protest.
‘This guideline is supposed to support both safe prescribing and withdrawal management,’ read the letter, signed by APPG chair MP Danny Kruger and Lord Crisp, its co-chair and former CEO of the NHS.
‘Yet the withdrawal management sections do not currently provide the basic slow tapering information needed to enable patients to withdraw safely.’
Enclosed was a statement of support from ten organisations, including The British Psychological Society, the Council for Evidence-Based Psychiatry and the UK Council for Psychotherapy.
NICE also received a separate letter signed by 21 leading psychiatrists, researchers, withdrawal support charity workers and patient representatives ‘who, through clinical work in the NHS, work in the third [i.e. voluntary] sector, or on online peer support forums, have many years of experience providing information on safe prescribing and helping patients to reduce and stop medication classes covered in this guideline’.
They, too, expressed concern that the lack of detail on dose reduction in the draft ‘will mean clinicians are . . . likely to fall back on the common practice of reducing the dose of these medications by half for two to four weeks, then perhaps by another half before stopping the medications.’ This can lead to severe withdrawal symptoms ‘that for some can be long-lasting and debilitating — which is why revision of the NICE guidelines is being undertaken’.
As Luke Montagu told Good Health last week, ‘the current draft of this guidance leaves out critical information on the speed of the taper. It just says ‘slow’.
‘But when people read the word ‘slow’, they may think that means tapering off a medication over a couple of weeks. In fact, depending on various factors, ‘slow’ can actually mean many months or a year or even more.’
He added: ‘Doctors working under pressure in busy GP surgeries don’t have time to read all the literature on every subject. They need a NICE guideline with clear guidance for a range of clinical scenarios on the duration of the taper, the amounts by which they should be trying to reduce dosages, and the intervals between dose reductions. But there is none of that in the draft guidance.’
If the final guidelines are published unamended, says Luke, it will be the latest example of a failure to comply fully with a series of recommendations made by PHE three years ago.
One problem the guidelines cannot address is the widespread lack of specialist services for patients who find themselves dependent on prescription medicines, whose needs and circumstances are very different from those addicted to recreational drugs such as heroin and cocaine, for whom withdrawal services do exist.
Lucy Fernandes, who became trapped on three drugs prescribed for severe anxiety, was lucky to benefit from one of the few services in the UK offering support with tapering.
After fighting a desperate, lonely battle to free herself from the grip of anti-psychotics and mood stabilisers, she finally found help. She says when she first tried to come off the medication, her doctor had said ‘you can just stop taking them, you don’t need to taper’. ‘So I did, and just had really serious withdrawal symptoms such as a complete lack of sleep.
‘And then the doctor said, ‘Oh, this proves that you need to take it for the rest of your life, that you have an underlying illness.’ ‘I had a hunch that he was wrong.’
It took her 12 months — ‘to my mind that was very slow, but actually it was far too fast and every time I reduced the dose I had extreme withdrawal symptoms. I was doing it completely unsupported.’
It was when she tried to come off the benzodiazepine she had been prescribed that she found help in the form of the REST, which for 30 years has been helping people wean themselves off addictive prescription drugs.
She was lucky to live in the area. REST is the only such service in London and one of only six in the whole country. Yet setting up more such specialised services was another key recommendation in the PHE report.
Almost two and a half years since its publication, the development of specialised services ‘and treatment pathways available to patients who experience problems with dependence or withdrawal’ has been subsumed into NHS England’s plans for Integrated Care Systems (ICS), the latest organisational ‘revolution’ in the way that healthcare is planned and delivered.
The new system, which brings together NHS, local authority and other bodies to take on responsibility for the resources and health of an area, is due to come into operation next month, with 42 ICSs covering every area in England.
The NHS is developing a ‘commissioning framework’ that will, among many other things, govern how ICSs commission services such as those to support people coming off dependence-forming prescription drugs.
‘That framework is in a draft form at the moment,’ Luke told Good Health.
‘But the key question, the only question that matters, is how it is going to be mandated. Because if it’s just a framework, well, we had a framework that was produced almost ten years ago, by Public Health England itself, and it just sat on the shelf.
‘If these ICSs are not actually mandated to provide these services, then I suspect it will just sit on the shelf again.’
Another example of how the PHE recommendations have failed to live up to their promise is the apparent lack of any progress on introducing a 24-hour helpline and associated website to help patients struggling with prescription-drug dependency.
‘As far as we know, that baton has been passed by the NHS to the Department of Health, but they have not told us who is picking up that baton in the department, what its status is or, indeed, whether there is any funding to do anything about it,’ Luke told Good Health.
The APPG ‘has done all the specification work, we’ve looked at how it would work, and we’ve done a role definition for the sorts of people who should operate it.
‘The helpline is the easiest thing for them to do, and there are so many obvious arguments for just getting on and setting it up. But so far as we know, at the moment the helpline is just in limbo.’
It is, he added, ‘scandalous that after all this time no progress has been made on this’.
A spokesman for the Department of Health and Social Care told Good Health that the recommendation made by PHE for a national helpline ‘is currently under consideration and is subject to ongoing funding decisions’.
In the meantime, campaigners fear their concerns will have no effect on the final draft of the tapering guidance. When Good Health approached Dr Chrisp, director of the centre for guidelines at NICE, he told us the committee had ‘conducted a robust evaluation of the evidence, listening to the voice of patients throughout.
‘Changes have been made following feedback and we will publish the final guideline.’
However, it seems certain those changes will not incorporate specific guidance on tapering.
‘There is no one-size-fits-all approach to safely withdrawing from medicines associated with dependence,’ Dr Chrisp said. ‘This is why we promote a more person-centred approach, giving advice about important principles of reducing medicines but ensuring each patient is monitored closely so that schedules are adapted to their needs, circumstances and response to dose reduction throughout the tapering process.’
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