This post is linked to An Archipelago of Realities on DH.org. The link may not be clear when you start reading Archipelago but half way down it will be apparent. What is being said on Archipelago about SSRIs applies just as much to benzodiazepines here.
Geriatric medicine came into being in the 1980s and with it a new word – polypharmacy – a phenomenon particularly evident in older folk. Initially viewed as applying to someone taking 3 or more medicines every day, inflation quickly took it to 5 or more.
In 1991, Mark Beers, an unusual man with an interesting background, began highlighting the use of potentially inappropriate medicines (PIMs) among elder care residents and later the elderly more generally. By 1997, PIMs led to what came to be called the Beers Criteria and a sense that the drugs older folk were on needed regular review for possible contributions they might be making to a person’s problems.
In 2003 Michael Woodward coined the term ‘deprescribing’. Deprescribing was at this point a good idea in principle. This was taken to a new level in 2010 when Dee Mangin and Doron Garfinkel showed reducing medication burdens could be done and had benefits.
There is a growing list of good reasons to deprescribe. As outlined by Dee Mangin many drugs are prescribed on a Legacy Basis, long after an intended period of prescription. Another reason is there may be a loss of benefit. Or a medicine may be given for a risk factor misleadingly termed multi-morbidity or comorbidity. Risk factors are not medical conditions and treating them is not as necessary as treating conditions. It is not unusual to see someone in their 90s put on a statin or an osteoporosis drug for minimal elevations of cholesterol or thinning of bones. There may be a new awareness of adverse effects of drugs like montelukast that was not present when prescribing began.
Above all perhaps, there has been growing evidence for a steady increase in hospitalization rates linked to the number of medicines people take – this is not just among the elderly.
As the idea of deprescribing took hold, the PIMs acronym was heard more and more often and drawing up PIMs lists became common. See PIMs Plus Medication Reference Site. Everyone wanted theirs and all sorts of groups got involved.
Among the criteria used for deciding if a medicine is potentially inappropriate was whether it featured anticholinergic effects. These supposedly contribute to adverse cognitive (confusion and memory problems) and neurological (dizziness) effects especially in older people – Past Present and Future of Anticholinergic Drugs.
This is where skepticism is called for. When over half of the medicines on PIMs lists of anticholinergic drugs or drugs with anticholinergic effects have in fact no or only minimal effects on cholinergic systems, you can suspect something else is going on. When drug companies sponsor symposia about PIMs and mention stopping prescribing competitor drugs like oxybutynin, maybe even saying nothing about their drug – mirabegron, which while helping some people can cause terrible problems for others – you can perhaps get hints of what it is that’s going on.
The anticholinergic group of drugs are old and cheap. They are among the most useful drugs we have. Well-tolerated by the people on them, even liked, they help nerve fibres regrow, which almost no other drugs do. Many other drugs damage nerve endings. Anticholinergic drugs are antidepressant or quality of life enhancing. See Experts by Experience, Withdrawal and Cholinergic Drugs
The anticholinergics began to be vilified by pharmaceutical companies from the 1960s onwards – so intensely that most doctors now figure they only cause problems. The vilification likely got to Mark Beers. He didn’t have the background to know any different and fingered the anticholinergics as drugs the elderly should avoid. The industry have been selling the Beers’ criteria ever since. See The Marketing of Cholinergic Maleficence and Psychotropic Drug Follies.
Industry can see the growing pressure to reduce medication burdens and figure this can be captured and put to good use. Doctors, pharmacists and others with no links to industry are busily constructing PIMs lists on the basis of a ghostwritten medical literature which just happens happily to offer suitable candidates like the anticholinergic and benzodiazepine drug groups as low hanging fruit that absolutely should be eliminated immediately.
In the case of the anticholinergic drugs, the medical literature offers no evidence for their harms but repeats the supposedly well-known poisonous effects that everyone assumes someone somewhere has shown to be the case. They haven’t.
Deprescribing Takes Off
In the last decade deprescribing has taken off. It offers pharmacists a new role and they have picked it up enthusiastically. The lack of push-back from industry, indeed the unusual experience of having industry support for initiatives to reduce drugs, makes everything so much easier for all involved.
The deprescribing fashion has also infected the policy apparatus which helps. The people who run health services have been sold the idea its Good for You, Good for Us, Good for Everybody if you are on less meds. We save money.
We don’t – older cheaper drugs are removed leaving room for newer more expensive ones. In England last year, there were over 500K prescriptions for diazepam and less than 3K for vortioxetine, a new and pretty problematic SSRI. People on diazepam are switched to vortioxetine. The diazepam cost is over GBP 500K per annum. The vortioxetine cost is over 600K per annum. Vortioxetine is just one of the SSRIs replacing diazepam.
Dee Mangin created TAPERx one of the earliest efforts to Reduce Medication Burdens . At present, Taper is only approach that has been put into Clinical Trials and shown to be feasible. At the heart of Taper is a conversation between a doctor and a patient rather than an algorithm. The conversation is caught in the concept of Pause and Monitor. This is very different to what is happening now.
Benzodiazepine Deprescribing
In the US, the key event that caught medical attention in respect of medical attention to benzodiazepines was a 2020 FDA Black Box Warning on Benzodiazepines.
This linked benzodiazepines with the “Opioid Crisis” creating a benzodiazepine crisis for a group of drugs the US had up till then been all too relaxed about. There might have been some problem with older drugs like diazepam but new short acting drugs like Xanax, Ativan and Klonopin were just fine. The message many doctors bought into was that things can only go wrong if the patient abuses these drugs.
Since then deprescribing guidance from the biggest US managed care organizations such as Kaiser Permanente have pushed Benzodiazepine and Z-Drug Safety Guidelines.
Another factor is that doctors are being replaced by NMP – non-medical prescribers – nurses, physician associates, pharmacists who seem more likely to keep to Guidelines than older medical staff.
But in addition in both the US, UK and elsewhere, previous advocacy efforts by groups like The Alliance for Benzodiazepine Best Practices and The Benzodiazepine Information Coalition which had been getting nowhere are now having an impact. The “Benzos are bad Do not prescribe” message on TV shows such as Lisa Ling’s The Benzo Crisis, Medicating Normal, and Holly Hardman’s As Prescribed are all of a sudden being heeded or rather being cited as justifications for what is being done.
Other factors are more obvious in the UK and elsewhere than in America. In America there are Prescription Drug Monitoring Programs which began life in an effort to track opioid prescriptions and shady patients tricking innocent doctors into running drug mills.
Americans are wary about the infringement of liberties involved in government run surveillance programs – they get their surveillance from private companies. Britain and Europe aren’t wary of government in the same way and have programs monitoring all drugs and feeding back to doctors whether their prescribing is deviating from the average. The incentive is to keep to what everyone else is doing. If all of a sudden you are prescribing more benzos than others, there is pressure to conform.
Added to which is that European healthcare organizations can put monetary incentives in place to foster less benzodiazepine prescribing for instance – you get paid more if the number of people on your list who are getting a benzodiazepine is under X%. This can be difficult to resist if in addition to being paid more, you are being paid to do what everyone says is the right thing.
[But to repeat this system in practice operates to get people off older, better and cheaper drugs rather than truly to reduce medication burdens].
In Britain there are systems like the Quality and Outcomes Framework and the Structured Medication Review and Medicines Optimization Service which play a huge and increasing part in what any doctor does. When you are at your doctors, if you ever feel like there are more people in the room than you and your doctor, you are right – there are.
See Strangers in the Room and Thinking Fast and Slow which features an undoctored photo of Kate Middleton. A growing set of puppeteers monitor your encounter with your doctor and can tweak the system to nudge him in the direction that suits them.
Just as it is easier to dispose of people in War these days, where it now happens from a distance rather than face to face, so also now you never meet those who really run the health services you get. This plays a part in what happens.
PID
Potentially inappropriate deprescribing and its acronym PID were coined by or brought to RxISK’s attention by Marjorie DeWert who has lived experience with benzo withdrawal and volunteers with benzobuddies.org. We met at a workshop on psychotropic drug dependence where she made me and others aware just how lacking Americans are in terms of access to liquid forms of or tapering strips for benzos and other meds and how difficult this makes things.
Like others advocating on benzo issues, she is now ruefully witnessing how one-sided messaging about the ‘benzodiazepine crisis’, over-prescribing, and deprescribing is harming individuals who have been taking their benzodiazepines exactly as prescribed, sometimes for decades.
Cases
My first awareness of the wave heading our way was when working in Canada, a woman contacted me to ask if I could help. Her new doctor had told her she was going to have her diazepam stopped. She was in her 60s and had been on a low dose for decades. She spent time trying to talk sense into him but he was not for budging.
I couldn’t help this lady. The way the system worked I didn’t have standing to engage with her doctor. Without knowing her case in detail, it was also difficult to know how to engage. If she couldn’t persuade her doctor to make a referral to someone like me, how likely was he to pay any heed to an uninvited report from a stranger.
People can always ‘expert’ shop to get someone to say what they want. The views of someone who is just anti-drugs are an annoyance not a help. Most family doctors don’t have time to respond. That’s what dustbins are for. The views of someone who can see the benefits and problems and the difficulties in a situation like this are needed but there are too few of those to go around for all the people likely to need help with problems like this. For a possible solution to this lack of expert support – see below.
Marjorie told me about another Canadian lady in her 60s who came benzobuddies way recently. She had taken benzodiazepines as prescribed for 37 years. She returned home from a year overseas to find herself forced into a rapid taper, which caused so many problems she ended up in detox/rehab where she had to beg to be reinstated. She then moved to the US to try and find a prescriber who will help her.
Another case from Marjorie involved a man in his 70s, who was forced into a taper. This produced another horrible experience. His ‘behavioral health’ team refused to prescribe the manufacturer’s oral diazepam liquid so he could complete his taper. When he asked his primary care physician to prescribe a liquid, he was flagged for ‘doctor shopping’ and ‘drug seeking behavior’ and turfed back to the behavior health team who threatened to deny him care.
In the UK, Barry Haslam has been tireless in efforts to draw the ‘systems’ attention to the risks of benzodiazepines and how, far from their use diminishing prescribing has been increasing – as a forthcoming article in the Daily Mail will indicate. Anyone campaigning on this issue stresses the need to have dedicated services to help people withdraw. It is entirely inappropriate to have people who have difficulties with prescribed drugs referred to substance abuse services and treated like addicts.
Barry drew RxISK’s attention to several people, all of them somewhat older, who were being forced off longstanding low-dose benzodiazepines and the problem this was causing. The cases turned up recently, all around the same time, pointing to some program or instruction from above.
A medical friend I’ve known for a long time then got in touch telling me he was in a similar position. He had a clear medical contra-indication to having his low dose diazepam deprescribed but had been told by email this was now happening. Thankfully, perhaps owing to his medical background, the system saw sense – see more below.
Individual Differences
As outlined in An Archipelago of Realities, we differ significantly. Some of us can stop benzos without any problem. Some like Christy Huff, a doctor and driving force behind the Benzodiazepine Information Coalition, who died a few weeks ago, can stop with careful tapering and great difficulty. Others simply cannot stop.
Not being able to stop does not relate to motivation. It is physiological. Some of us have no problem stopping 3 drugs that others can’t stop but we cannot stop a fourth which other people we know can stop easily.
Those who are lucky enough to be able to stop a drug often congratulate themselves and find it hard to accept that others can’t.
This is where hyperbolic tapering, an idea first linked to getting off antidepressants, but now to everything, can become a problem. It usefully encourages people to try stopping as it gives the impression that we have worked out how to get off meds and all you have to do is apply this approach. Pharmaceutical companies now market this idea – nothing to withdrawal that a good taper can’t solve.
Hyperbolicity makes pharmacological sense in other contexts but not for drug dependence. When people then find this approach doesn’t work for them, they end up feeling a failure.
Even worse their doctors can start blaming them and threatening to delist them. They become ‘bad patients’ when all they have ever done is exactly as they were told by a bunch of doctors who don’t see that they, the doctors, are the ‘bad guys’.
When the Auditor Calls
When it comes to PID your doctor might seem like an unforgiving tyrant but most doctors aren’t. System factors are contributing to the problem but the system can be made to work for you. Almost all the documents linked above stress the need to get you to agree to a plan, and that getting off treatment may take as long to taper as you need. While there needs to be more recognition that some people simply will not be able to stop or stop without being left with ongoing undue suffering, you can make the system and its documents work for you,
We need some readers of this post to work through the documents above and any others you can find from any country – Australia, Canada, France etc – and paste the phrases about a discussion and taking whatever time is needed and anything else sensible, along with the link to the document from which they come, into a comment on this post or into an email to RxISK.
We will assemble all links and comments into a document and link it to this post which everyone will then be able to access, print off, and add a header such as from Joan/John Smith and presented to Dr White on 2024-XX-YY.
This may be all a doctor needs. When the auditors call, s/he can point to the evidence in line with the guidance that a discussion happened with you and your reasonable wishes have been taken into account. Without something like this to put in the notes, a rushed doctor is in a more difficult position.
We can also make a document from comments from you like the one from the man above who was flagged for doctor-shopping and drug-seeking behavior when he tried to get a liquid form of diazepam. Having a list of outrageous system behavior like this that can be downloaded from here would help you stand up for yourself – might even provide some amusement.
I say amusement because you should not have to beg, crawl, or whimper gratitude in situations like this. You are educating your doctor and s/he should be grateful for this input from a colleague. There will be a post on DH.org next week called something like The Creation Narrative and the God Complex – a follow up post to Archipelago that might help on this point. The new post will have a great cartoon.
There will also be a follow-up post on RxISK next week – Decoding Drug Promotion and Decoding Carlat Psychiatry – that also bears on this.
Treating and stopping is not the same as not treating. Attempting to stop can be highly dangerous. The safest course of action is not to prescribe in the first instance.
No controlled trials will ever tell us how to reduce medication burdens – other than trials perhaps that prove the importance of a conversation and relationship based approach. Current Guidelines are disastrously wrong and will kill people as will any essentially algorithmic approach. There is even a recent study of benzodiazepine deprescribing offering figures on just this – see Maust et al which you can give your doctor who might find it useful When the Auditor Calls.
tim says
Thank you for this powerful and important post. (And for the linked post on DH BLOG.).
I used to believe that there was no place for bullying, for threatening and coercing patients until misdiagnosed akathisia lead to unecessary psychiatric prescribing which destroyed the beautiful life of my enchanting daughter.
One psychiatrist who caused great, irreversible injury started each consultation with the words: “We have the power, let’s hope we don’t have to use it’. There was no attempt to achieve Joint Decision Making and Consent as referred to by the G.M.C.
Now I believe that in some (not all) – deprescribing consultations in primary care, bullying, threats and coercion have become the modus operandi of enforced, ill-understood, long term medication withdrawal.
I should have anticipated this as an inevitable outcome of “The Management Revolution” imposed on doctors during the peak intensity of the AIDS epidemic.
There is much more needed to comment in detail on such an important and potentially dangerous apparent preoccupation in Primary Care, however, I need to look up some references before I go further.
These two posts are so compelling that I have felt the need to comment in two parts. I hope to get close to the right words in the next couple of days.
Dr. David Healy says
Tim
See reply to Peter below
David
Peter Selley says
I think deprescribing is more written about than actually done.
Three years ago NICE guidelines on treatment of chronic pain were issued…
https://www.nice.org.uk/guidance/ng193/chapter/Recommendations
…suggesting that gabapentinoids – Oxycontin’s UK’s little brothers – were of no benefit.
The impact of that advice in England can be seen here:
https://openprescribing.net/analyse/#org=regional_team&numIds=0408010G0,0408010AE&denom=total_list_size&selectedTab=chart
Dr. David Healy says
Peter and Tim
You are both doctors dealing with people in distress on one side and a distressing system on the other. It would be great to get your thoughts on the possibilities for the proposals outlined at the end of this post.
My assumption is most doctors are decent and will be reasonable if given a chance. One option is the idea of a 2-3 page document listing all the policy documents from authoritative bodies stressing that deprescription must be agreed and any Taper designed to suit the person – in Dee Mangin’s phrasing Pause and Monitor (in this case, pause this dose rather than the drug entirely). There must also be a recognition that some people simply cannot stop certain drugs but I’m not sure this will show up in any policy documents – policy documents don’t want to envisage difficulties like this.
The other step was to produce a 2-3 page document with snippets on scandals like the patient above who was trying to get a liquid to help being branded as doctor shopping and displaying drug-seeking behavior. This is close to libellous. It might be too much to threaten a legal action especially for someone trapped as this patient was – but can you see a document of some sort like this being useful in alerting folk to mistakes they might be making.
In this case part of the problem links to handing benzo or SSRI prescribing over to substance misuse services – a point that could be made.
Any thoughts you have on other things that could be usefully included would be great to get
David
tim says
Deprescribing is a Medical Intervention.
It is my understanding that any medical intervention must be based on Fair, Full and Informed Consent.
For any patient (eg ‘a medical friend who had a clear medical contra-indication to having his low dose diazepam deprescribed’) was notified electronically that prescribing will cease.
Self evidently, there cannot be valid consent given here.
Initial Thoughts and Comments – From GMC. NICE and NHS England Pubications:
GMC. Decision Making and Consent.
‘This guidance is relevant to every health care decision that you make with every patient’.
“Consent is a fundamental legal and ethical principle. All patients have the right to be involved in decisions about their treatment and care. —- Serious harm can result if patients are not listened to —-‘.
NICE.
‘A gradual drug withdrawal schedule, Dose Tapering should be negotiated. The person should guide adjustments so that they remain comfortable with the withdrawal’.
‘ Dependence may develop and continuing treatment may serve only to prevent withdrawal symptoms’.
‘People who do not wish to stop taking benzodiazepines should be listened to and any concerns about stopping should be addressed. They should not be pressurised’.
Paraphrased: The guidance is not a substitute for clinical judgement.
Structured Medication Review. SMR. (‘First Do No Harm’?)
I reviewed NHS England and NICE publications on SMRs and failed to find any requirement to audit adverse outcomes of deprescribing: ( ie HARMS).
Examples of deprescribing benzodiazepine harms might include:
Avoidable Hospital Admissions.
Socio-economic-quality-of-life detriment. (Eg Rapid withdrawal induced seizure resulting in revocation of driving license).
Stress and distress experience by patient and family, especially where earlier enforced withdrawal had resulted in life-changing, or life-threatening adverse event/s.
Surely the foremost priority and responsibility of the deprescriber must be Patient Safety and maintaining Quality of Life?
( Professor Swapril Gupta, referring to the withdrawal of psychotropic dugs in general wrote:
‘If careful taper in the past led to a very distressing outcome like hospitalisation. then we leave it at that’).
Personal Thoughts:
There does not appear to be a wide enough understanding of what is perhaps the most important concept in this post:
“Some can stop without problems, some can stop with careful tapering and great difficulty. Others simply cannot stop”.
Without this knowledge and awareness, the deprescriber may be inclined to view the patient as non-compliant at best, and a drug seeking addict at worst, destroying any possibility of a therapeutic doctor-patient relationship indefinitely .
D.H. ” It is entirely inappropriate to have people with difficulties with prescribed drugs referred to substance abuse services and treated like addicts”.
It is also inappropriate to unilaterally withdraw a long term medication without discussion, agreement and consent.
The NHS Constitution States:
‘Patients (with their families and carers where appropriate) will be involved in and consulted on all decisions about their care and treatment’.
Might these words be helpfully included in Deprescribing Guidelines?
Dr. David Healy says
Tim
This is just what is needed. Will incorporated into the Draft. If you can email me links to the relevant documents that would be great – or specify which links in the post you consulted
David
Colin Moran says
Hello David.
I have located sources for some of those quotes.
——
“Decision making and consent – Updated GMC Guidance
The updated guidance states: “Consent is a fundamental legal and ethical principle. All patients have the right to be involved in decisions about their treatment and care and to make informed decisions if they can. The exchange of information between doctor and patient is essential to good decision making. Serious harm can result if patients are not listened to, or if they are not given the information they need – and time and support to understand it – so they can make informed decisions about their care.”
https://www.kingsviewchambers.com/decision-making-and-consent-updated-gmc-guidance/
_______
“A gradual drug withdrawal schedule (dose tapering) that is flexible should be negotiated. The person should guide adjustments so that they remain comfortable with the withdrawal.”
“People on long-term benzodiazepines or z-drugs should be advised to stop because:
Tolerance to these drugs progressively reduces their effectiveness for the treatment of insomnia or anxiety.
Dependence may develop, and continuing treatment may serve only to prevent withdrawal symptoms.”
https://cks.nice.org.uk/topics/benzodiazepine-z-drug-withdrawal/
——
Principles that guide the NHS
Seven key principles guide the NHS in all it does. They are underpinned by core NHS values which have been derived from extensive discussions with staff, patients and the public. These values are set out in the next section of this document.
4. The patient will be at the heart of everything the NHS does
“[…]Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment.[…]”
https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england
——
I hope that helps.
Colin Moran (benzobuddies.org)
Dr. David Healy says
Thanks C
Peter Selley says
Clearly psychotropic medication is likely to be different from, say, anti-anginals when it comes to deprescribing.
In the overmedicated well there is often quite a willingness to reduce the medication burden.
Less so in the worried well – those terrified that they will have a heart attack, and some mental health worriers.
I would modify the plan to Relationship – Pause – Monitor which I think is self explanatory.
It goes without saying: Only make one, negotiated, change at a time.
I always found it strange, although not surprising, that so many more patients were on a daily dose of 5mg of prednisolone (steroid) than 4mg, which I imagine is 20% less likely to cause diabetes, cataracts or osteoporosis.
susanne says
Spirit Health This corruption of the word ‘spirit’ shows the level of of cynicism taken hold in ‘health’ services’ Many elderly people would rather be dead than end up in a hospital or ‘care home’
Life Sciences Hub Wales home pagehttps://www.spirit-health.com/about-us
Mental health support in residential care homes
Currently, the process of providing mental health support to residents of care homes hasn’t been efficiently streamlined and often comes with a considerable amount of admin work for those providing care.
The solution
This project is implementing remote digital technology to support mental health care delivery.
It is also working to identify and understand the factors that help or hinder the implementation of the digital platform, ready for spread and scale.
This project is part of the Digital Solutions Fund Programme.
The proposal from Spirit Health is to support the implementation of a 6-month pilot project to deploy CliniTouch Vie for deterioration monitoring in Mental Health in Hengoed Care Homes based in Swansea (identified by the Mental Health In-reach team) to test the aims and objectives outlined below.
This project is seeking to understand the impact of reducing face to face visits by the Mental Health Inreach team supporting the delivery of mental health care to identified residents in the Hengoed Care Nursing Homes.
To support this implementation, Spirit Health will work with the Mental Health In-reach team as part of this pilot to co-design a mental health question set that can be supported by the Spirit Health virtual platform.
Residents will complete bespoke and clinically-led mental health questions, as well as have their vital sign measurements taken daily, with results sent in real-time to be reviewed. CliniTouch Vie automatically analyses the data and generates a risk-scored list of prioritised actions, enabling clinicians to intervene and provide urgent care where required.
Who are Spirit Health?
Spirit Health is the team behind the multi-award-winning CliniTouch Vie platform, connecting patients and clinical teams through virtual wards and remote patient monitoring.
Their aim is to make healthcare safer, smarter, and more efficient.
Their platform enables the digitisation of multiple pathways, including COPD, chronic heart failure, frailty, COVID-19 and now the addition of mental health.
Their technology is currently supporting teams across the NHS to provide alternatives to hospital care, helping to facilitate earlier discharge or avoid admission. Spirit Health has now published proven evidence of improved outcomes for patients and clinicians, increased system capacity and cost savings when using CliniTouch Vie.
mary H. says
In addition to all that has been said here – both in the post and also in the comments so far – I would strongly recommend the setting up of more Prescribed Medication Withdrawal PEER SUPPORT GROUPS ( meetings of like-minded sufferers without input from professionals). Our group has run now for around 5 years, initially in-person meetings but now by zoom. What becomes clear in these meetings is the loneliness of sufferers, the feelings of inequality, the fear for their future etc. By voicing their concerns, they find that they are not alone and find a certain kind of ‘solace’ in “group suffering” which is quite empowering.
It is, obviously, voluntary work which can become rather draining at times but is so worthwhile for all of us who meet. We only meet fortnightly, to do so more often would be too draining for me as, after all, I am not one of the afflicted – I am merely a bystander who is able to do whatever I choose with the other 13 days of the fortnight. For those who are in withdrawal it is a very different matter – they are stuck with their condition and can do little more than “cope” with each day as it comes. My son, for whom I volunteered to take on this role, lives and breathes by the success of the group. He feels such a sense of achievement through its continued success. (As you can see, I’ve no chance of pulling out of this any time soon!).
To come to my final point, these people, who are in withdrawal, feel their weaknesses most profoundly when they meet with their GPs. They know what they would like – such as tapering strips or liquid formulations , but have this intense fear of rejection which often results in them making their own decisions, away from the medical support which should be theirs to share. They share their fears in our group sessions but often fail to reach their GP surgeries with their renewed strength gathered during such meetings.
Therefore, whatever the rest of us can do to awaken the doctors to the reality of the current situation can be a great help for those who fear rejection for speaking up for their rights once faced by their doctor.
The ability to SPEAK openly, to be LISTENED to keenly and to be BELIEVED by all in a medical setting should be the first step to an all-round improvement in these situations in my opinion.
susanne says
Hello Mary Is it it right that you use Zoom as well as physical meet ups? I remember the group was necessarily local in the early years – but with the use of tech can people outside N Wales join your group now? If that’s a possibility ,considering what you and your son are already taking on, if any one would like to join how can they contact you please?
mary H. says
Hi Susanne. Our change to zoom came as a result of the Covid lockdowns and actually worked really well for us. We were unable to gather many for our in-person meetings. It would seem that North Walians are either extremely healthy or shy of sharing their problems!
Now that we are only meeting by zoom, our meetings have gone in a very different direction. As you suggest, we are open to people from much further afield and have, over time, had some from overseas who have joined us – one such person still remains as a very regular participant. We still have people from all corners of England and a few from Scotland. This makes us sound like a huge number, that is not the case. We are still only a few but with a relatively high turnover! One of our original group still remains with us and at present we have another half a dozen who regularly ( health permitting) attend our meetings.
Using zoom has meant that we can access “professional speakers” who join us from time to time. They are suggested by the members and where possible we book them to join us at a date which suits the individuals. This adds a new dimension to our numbers as we invite another group, set up in England, to join us for those meetings.
Our greatest disappointment is that we STILL have no interest from North Wales! Anyone, who is either in withdrawal at present, holding at the moment or even just thinking about starting their withdrawal journey, is welcome to join us. We concentrate mainly on antidepressants but will not turn away anyone who is struggling to withdraw from any prescribed medication. The way to get in touch with us is by emailing me, in the first place for more information : ellen.hennessey@btinternet.com
Thanks.
Dr. David Healy says
Mary
As a project for the group – sorry if this sounds like work – could people see what they can find in terms of official documents stressing that there needs to be a relationship with the patient – nothing done without the consent of the patient – recognition that taper may not be possible for some people etc
If people can find these quotes in documents and send us the actual quote and link that would help. RxISK will make a master document available for people to download – and try out.
It would also be great to get accounts of how badly wrong things can – people being made to feel they are somehow being criminal, shady or drug abusing etc when they try to get liquids or whatever or try to explain that tapering just doesn’t work for them. We can anonymize all comments but again they might make a useful document
David
wh
annie says
Did any GP listen to Dr. Chrisp; and did this wildly optimistic ‘official statement’ ever take root as a ‘useful and useable statement’
This can be down to interpretation; Dr. Chrisp assumes ‘the way it should be done’ with ‘agree a way’ and ‘safely managed’.
‘which it can work’
“But it should be stressed there is no one-size fits all approach to coming off antidepressants. The way it should be done has to be down to the individual and their healthcare professional, to agree a way which it can work and only when side-effects can be safely managed.”
Adults with depression who want to quit antidepressants should be given support on how to do it safely over time, says NICE
Adults with depression who want to stop taking antidepressants should have the dose of their medication reduced in stages to reduce the likelihood and severity of withdrawal symptoms, NICE has said.
https://www.nice.org.uk/news/nice-draft-quality-standard-depression-adults-update-2023
Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said: “There are millions of people taking antidepressants. If an individual decides they want to stop taking this medication, they should be helped by their GP or mental health team to do that in the safest and most appropriate way.
“In many cases people experience withdrawal symptoms, and the length in time it takes them to safely come off these drugs can vary, which is why our committee’s useful and useable statement for a staged-withdrawal over time from these drugs is to be welcomed.
“But it should be stressed there is no one-size fits all approach to coming off antidepressants. The way it should be done has to be down to the individual and their healthcare professional, to agree a way which it can work and only when side-effects can be safely managed.
Our guideline on depression signposts to information produced by the Royal College of Psychiatrists which can offer practical advice to help people safely come off this medication.”
susanne says
Thanks very much for the catch up Mary. For what you describe as a small organisation it is I think a great achievement to survive as non professionally controlled group but working positively with those on the same wavelength
Here is a delightful post in thebmj by a N Wales GP Makes your heart sing?
10.1136/bmj.q725
Dear Editor
Dr Launer’s article sends a very important and timely message to all Health care professional .It definitely pays to be friendly ,smile and acknowledge patients in health care settings and people whenever and wherever we interact with them.It makes patients feel like ‘a human being ‘ and worthy of recognition . This is more important in unfamiliar health care settings ( ie hospitals ) where patients are often anxious,apprehensive and even frightened .In such circumstances a kind smiling face ,a friendly greeting ,is very reassuring and comforting .
I am a retired GP who returned to work part time at the start of the Pandemic. I work one day a week at my ‘beloved’ practice where I have worked for nearly thirty wonderful years. Every Tuesday as I walk into work I have to walk past the packed waiting room ,to get to my consulting room. Most of the patients in the waiting room ( waiting to see different health care professionals ) have been my patients for many years .I pause in front of the seated patients ,smile and greet them as my friends .They all in return greet me and we have a general conversation filled with laughter . On every occasion I tell my patients /my friends that ,Tuesdays are not really ‘working’ days for me ,they are days when I enjoy the opportunity of reconnecting with my patients ( my friends ) and saying ‘Hello ‘ and inquiring about them and their families .
I believe that I am blessed to have had an amazing relationship with my patients and still continue to enjoy the privilege of serving them .
My message to my younger colleagues , especially GP’s is to consider every patient that you interact with as a ‘human being ‘ and not a number on your appointment list of the day. I urge you to bring kindness,empathy ,compassion and humanity back into your consulting rooms .Our patients deserve to be listened to and treated with kindness,empathy ,compassion and above all,humanity..
31 March 2024
Parameswara Venugopal Prasad
GP , North Wales
mary H. says
Yes, Dr. Venu Prasad was /is in Holywell, about 4 miles away from us. He is well known and revered by all in this corner of North Wales:-
‘Parameswara Venugopal Prasad, a GP returner and locum GP, has been associated with the beautiful town of Holywell in North Wales for nearly 30 wonderful years. After retiring in 2017, Prasad’s dedication to the local community was recognized when patients nominated him, leading to his appointment as a Member of the Order of the British Empire (MBE) in June 2018 for services rendered to the community123. 🌟🏴’
He is part of a well-respected set of medical practitioners at that surgery. I taught in Holywell for a good number of years until retirement so often heard mention of Dr Prasad’s name. He has certainly lived his life in the way that he describes above. A welcome change indeed!
susanne says
I remember trying to get some interest from Sue Jordan years ago but when you contacted her suggesting a collaboration based on her work she was not interested a lot of work on deprescribing is done by nurse physicians and ‘carers’so it might be useful to include them?
Nurse-led medicines’ monitoring in care homes, implementing the Adverse Drug Reaction (ADRe) Profile improvement initiative for mental health medicines: An observational and interview study
Sue Jordan (and colleagues),on behalf of the Medicines’ Management Group, Swansea University
Published: September 11, 2019
https://doi.org/10.1371/jo
Nurse-led medication monitoring for patients with dementia and adverse events
Background and study aims
It is important to improve the quality of care for people with dementia through person-centred care and reduction in inappropriate use of medications. Most side effects to long-term medicines could be improved by regularly looking for it in patients. We suggest to introduce this using the West Wales Adverse Drug Reaction (ADR) Profile for Mental Health medicines. This comprises of a checklist of questions, and observations (including weight and blood pressure), based on the known side effects of mental health medicines. The first section can be passed to the prescriber, with problems highlighted, while the health promotion section is passed to nurses or carers with suggestions for actions. Guidelines are supplied. The aim if this study is to find out if observing the medications given, improves clinical outcome. The ADR Profile is already available in the public domain, will be used in the care home as an education package
. At enrolment, participants must be taking at least one of antipsychotic, antidepressant or anti-epileptic medicines.
Five care homes will use the West Wales (ADR) profile with 10 patients each at different intervals. Care home staff will complete the ADR profile during usual care. This will involve observing or questioning patients and seeking information from medical records. Care home staff will complete short assessments at each interval. Information will be taken from the patients notes for evidence of medication monitoring, problems identified, actions taken, and outcomes. Staff will be asked to provide some feedback at the end of the project during short interviews.
What are the possible benefits and risks of participating?
There will be no immediate direct benefit to those taking part. However, there should be benefits to future service users with dementia receiving at least one of the targeted medications. We foresee no physical or emotional risks to participants.
The study has been set up by Swansea University in collaboration with West Wales Organisation for Rigorous Trials in Health and Social Care, UK.
Who is funding the study?
Funding has been provided by Wales School for Primary Care Research (WSPCR), Cardiff, UK.
Barry Haslam says
Thank you David for the mention. Prescribed benzodiazepine drug issues have been swept under the Government carpet for decades. The late Professor C. Heather Ashton described matters as ” A medical disaster”.
It still is.
annie says
A paradoxical increase in hostility and aggression may be reported by patients taking benzodiazepines. The effects range from talkativeness and excitement to aggressive and antisocial acts. Adjustment of the dose (up or down) sometimes attenuates the impulses. Increased anxiety and perceptual disorders are other paradoxical effects.
https://bnf.nice.org.uk/drugs/lorazepam/#:~:text=A%20paradoxical%20increase%20in%20hostility%20and%20aggression%20may,anxiety%20and%20perceptual%20disorders%20are%20other%20paradoxical%20effects.
When I wandered in to ask the new doctor if it was ok to stop Seroxat, she said it was perfectly ok.
Going back with intense ‘agitation’, she picked up her copy of the BNF, and prescribed .Chlordiazepoxide. Then came the Lorazepam, then came the Diazepam, then came the Propranolol.
Monitoring was non-existent.
The more I got, the more exasperated she became.
She didn’t understand what she was doing wrong. She plagiarised my medical records, trying to find reasons for my behaviour. Her reasons were truly laughable, going back to ectopic pregnancies to foot bunions and the rest.
Even when I was transferred to a new, young, super-bright psychiatrist, who consulted a hospital pharmacist with a year-long tapering from 40 mg. Seroxat, she still fought against it.
Search BNF
https://bnf.nice.org.uk/treatment-summaries/antidepressant-drugs/
Some GPs were, and still are, as ‘Mad as a Hatter’ …
susanne says
There’s masses of information on these kind of networks but how useful it is, how much tapering in the way the blog describes i don’t know Some gives the impression that the main decision making is by people taking the meds and who are much more in control of the decision to use them than they are in UK anyway
Looking for Deprescribing Networks?
The deprescribing.org team is connected with a growing number of international Deprescribing Networks. Below, we’ve listed these networks, their goals, visions and links to their websites and social media.
Australian Deprescribing Network (ADeN)
Website: https://www.australiandeprescribingnetwork.com.au/
Twitter: https://twitter.com/DeprescribeAU
The Canadian Medication Appropriateness and Deprescribing Network (CADeN)
Formed in 2015, the Canadian Medication Appropriateness and Deprescribing Network (CADeN) is a group of healthcare leaders, clinicians, decision-makers, academic researchers, and patient advocates working together to mobilize knowledge and promote deprescribing.
Website: https://www.deprescribingnetwork.ca
Twitter: https://twitter.com/DeprescribeNet
English Deprescribing Network (EDeN)
Formed in 2019, the English Deprescribing Network (EDeN) is a group of healthcare professionals, researchers and policymakers with an interest in promoting appropriate prescribing
Northern European Researchers in Deprescribing (NERD) Network
Formed in 2019, the Northern European Researchers in Deprescribing (NERD) Network is a group of academic researchers and clinicians that aims to support collaboration between deprescribing researchers and increase the visibility of deprescribing in Northern Europe.
US Deprescribing Research Network (USDeN)
Formed in 2019, the US Deprescribing Research Network (USDeN) is a group of investigators and stakeholders focused on improving research on deprescribing for older adults in the United States.
Website: https://deprescribingresearch.org/
James Moore says
An important and little discussed issue. Thank you, David, for your thoughtful pieces on this complex problem. I worry that if psychiatry believes that slow tapering always solves the issue, there’s no reason to be cautious prescribing. They can prescribe at will, believing that there is a safety net. However, the safety net might not be what it seems and many won’t find out until it’s too late. An issue I clumsily addressed here: https://www.madinamerica.com/2021/12/tapering-antidepressants-slow-best-strategy/
Dr. David Healy says
James
I think you have hit the nail on the head – pharma and psychiatry are quite capable of a volte face from there is no problem here – antidepressants don’t cause withdrawal – to there is not problem here – antidepressants don’t cause a withdrawal that can’t be managed easily with a little bit of tapering
David
Johanna says
Here’s a new bit of healthcare tech that I wish were just an April Fool’s Day item. Unfortunately, it’s real. Meet your new Hero:
https://herohealth.com/
David Healy has tried to warn doctors that if they keep following all the guidlines and believing that medications have no downsides, they’re going to be replaced. Nurses, physician assistants, pharmacists etc. can do this just as well, and for less money.
Looks like pretty soon we can forget about all those costly, unpredictable humans! This cool little machine will manage your meds, tell the pharmacy when you’re running low, and “interface” with your doctor AND all your relatives. Just sit it on the counter next to your coffee-maker, download the app and let Hero take care of you.
Just one catch: Hero will help you stay on all your drugs, but it won’t help you get off. And it will “nark you out” to your doctor if you try reducing your dose with out his or her permission. Medication Adherence is the Hero’s Mission.
Cathy Wield says
I think we need to be really careful here. I have heard so many opinions and judgements made by the medical profession (my colleagues) over patient choice. Recovery is not synonymous with no medication. Nor is no medication synonymous with recovery.
In the ideal world we would start at time zero, a doctor would see a patient, have a good long conversation, get straight to the root cause of their problems and find a holistic solution, one that preferably avoids the prescription of a drug.
But we are where we are in 2024.
There are many people who are ‘stuck’ – taking prescribed drugs that do not benefit them or actively harm them. The patients concerned may not even be aware of this.
Their doctors may decide they need to stop or withdraw or taper their drug(s) and may apply this to their patient without informed consent. This is as much a violation as prescribing the drug in the first place without properly informing the patients of the purpose, the side effect burden and potential for problems stopping the said drug.
Yet, this supposed beneficence further disenfranchises and disempowers patients. Patients should not be vilified for choosing to stay on a drug or choosing to try and come off any drug.
Then there are patients who do not want to start a drug – who are labelled as ‘uncooperative’ by their doctors. Or there are patients who want to withdraw from their medication, but their doctors are not fully aware of the difficulties associated with withdrawal.
Ignorance is widespread and as David Healy points out, there are many vested interests involved, including franchising of any kind of therapy and/or the marketing of supposedly ‘harmless’ replacement drugs which boosts the income of the pharmaceutical industry. Not to mention the medical professions own concerns about self-preservation.
Patient voices are incredibly important; we are all potential patients and we should be given as much information and support as we need to make our decisions. Doctors are those who have had some training but also have substantial gaps in our knowledge. We are put under immense time pressures and are being encouraged to see more and more patients in shorter intervals or our work is being delegated to those who are seemingly as competent as we are. The potential for error is high and however unintentional, doctors carry a huge risk of harming those we set out to help.
The internet is both friend and foe. It is easy to be misled in the wealth of information which is at our fingertips. So what are we to do?
There is a fine line between accountability and responsibility within the doctor-patient relationship and while that power imbalance exists, we must do our utmost to be open and honest with one another. Our choices matter and ultimately all patients must be respected for their decisions and allowed to change their minds if they need to.
Peter Selley says
Most comments so far have, understandably, concentrated on one aspect of deprescribing.
Reducing polypharmacy is also important.
I throw this into the mix without any comment apart from acknowledging that it does not help, and may make things worse for those who desperately want to come off a “medication” but can’t:
https://youtu.be/3Hd-se1xROA
susanne says
Many of our Rights depend on first using well established rightto access medical notes either through one of the apps(?) used by the surgery or request paper notes to check on accuracy or disputed info
How difficult it would be somewhat dependant on the relationship between parties – whether contested or not there is still a Right for an individual to have something added to the notes
Back to Information governance guidance
Transformation Directorate
This guidance has been reviewed by the Health and Care Information Governance Panel, including the Information Commissioner’s Office (ICO) and National Data Guardian (NDG).
The panel exists to simplify information governance guidance. england.igpolicyteam@nhs.net.
Amending patient and service user records
20 January 2022
Integrated care Individual rights Personal health records Social care Common law
amending patient and service user records guidance
This guidance provides advice on patients and service users requesting changes to their health and care records. It also covers how staff should amend records.
I’m a patient/service user – what do I need to know?
I work in a health and care organisation – what do I need to know?
I’m an IG Professional – what do I need to know?
Guidance for patients and service users
Health and care organisations make every effort to keep your records accurate. However, occasionally information may need to be amended about you or your care.
If you think that the health or care information in your records is factually inaccurate, you have a legal right to ask for your records to be amended. For instance, you can ask for your home address to be changed because you moved house. You may also ask for something you feel has been inaccurately recorded, such as a diagnosis, to be corrected. However, it may not be possible to agree to your request.
A request can be made either by speaking to staff or in writing. You may need to provide evidence of the correct details, for example proof of address or change of surname after marriage. The organisation will then consider the request. Where organisations agree to make a change, they should make it as soon as practically possible, but in any event within one month.
Sometimes, you may disagree with information written in your record, but the information could still be factually correct. For example, you may disagree with a diagnosis you were given in the past. Whilst you can still ask the organisation to amend the entry that you feel is inaccurate, an organisation should not change it if the health and care professional believes it is factually correct. There are exceptions to this, for example, where there is a court order.
In cases where all parties agree that the information is inaccurate, it may still be necessary to retain the information. For example, health and care professionals may have taken the information into consideration when making decisions about treatment or care. This information would therefore be needed to justify and explain health and treatment decisions or to audit the quality of care received. You can, however, request for a comment or entry to be made in the record to show that you disagree with the content and what you think it should say.
If you are unhappy with the decision of a health or care organisation to retain information you wish to have deleted there are some steps you can take. In the first instance, you can make a formal complaint through that organisation’s complaints process. If you are unhappy with the outcome of that process then you might consider making a complaint to the Information Commissioner’s Office (ICO) or consider legal action.
susanne says
Individual patients can opt out of sharing confidential patient information by completing a Type 1 opt out form, which means that the GP practice will not share confidential patient information for research and planning. This includes confidential patient information for both the General Practice Extraction Service (GPES – including the GPES data for pandemic planning and research) and the General Practice Data for Planning and Research (GPDPR) programme, which is still in development and predates the pandemic.
Patients can also register for ‘National data opt-out’ which means that their confidential patient information will not be used by other healthcare organisations for research and planning (except in certain circumstances e.g. when required by law).
The national data opt-out does not apply where explicit consent has been obtained from the patient for a given specific purpose.
Further information on the national data opt-out, including how a patient can register their choice is on the NHS website.
You should be willing to discuss any concerns about confidentiality with the patient which may address their concerns.
annie says
Wendy Burn: Medical community must ensure that those needing support to come off antidepressants can get it
https://blogs.bmj.com/bmj/2020/09/25/wendy-burn-medical-community-must-ensure-that-those-needing-support-to-come-off-anti-depressants-can-get-it/?utm_campaign=shareaholic&utm_medium=twitter&utm_source=socialnetwork
In 2018, while I was still President of the Royal College of Psychiatrists (RCPsych), I co-signed a letter to The Times which stated that “in the vast majority of patients, any unpleasant symptoms experienced on discontinuing antidepressants have resolved within two weeks of stopping treatment.”
To my astonishment the letter sparked a furore. A group of psychologists, psychiatrists and patients complained publicly. They were unhappy as they had found stopping antidepressants led to symptoms in patients that were often misinterpreted as a relapse of depression, which in turn led to taking medication for longer periods of time.
Formal complaints were made to RCPsych and to the General Medical Council. I was widely and upsettingly trolled on social media, as were several of my colleagues.
In my many years of clinical practice, stopping antidepressants had not been a problem that my patients had reported to me. Possibly because I have always slowly tapered any medication that my patients were on.
While our letter had been in line with the NICE guidance on antidepressant discontinuation which states “symptoms are usually mild and self-limiting over about one week” we had not included the further guidance from NICE that stated symptoms “can be severe, particularly if the drug is stopped abruptly.”
As the President of the College I felt it was my responsibility to find out more from patients who were experiencing these symptoms and consider how they could be supported
Over the next year, I met patient groups who reported harm from using antidepressants. They describe themselves as the “prescribed harm community.”
I visited a charity in Bristol which supports people coming off psychiatric medication, working with their doctors. I attended an event run by a group called “Drop the Disorder” who challenge the culture of medical psychiatric diagnoses.
Many people attending this event told me they had been damaged by antidepressants, particularly by their experiences of coming off them.
I talked to “Altostrata” in San Francisco who founded the Surviving Antidepressants website in 2011, this supports people who are having problems stopping psychiatric medication and has a huge collection of case histories. She describes experiencing acute withdrawal symptoms, followed by Post-Acute-Withdrawal Syndrome (PAWS) with ongoing symptoms.
It became clear that I had underestimated the number of people experiencing difficulties in stopping antidepressants and that the problem was widely under-recognised across healthcare.
I spoke to people who reported feeling abandoned with little or no support for symptoms after stopping their antidepressants. Meanwhile, I feared that heated and often polarised arguments were deterring people with mental illness from speaking about their experiences and seeking support.
The College’s position in 2018 had not been right.
We worked together with patients, GPs, psychiatrists, stakeholders, campaigners, NICE and PHE to produce a statement on antidepressants and depression which changed our position and gave clear recognition to the difficulties that can arise for some people when coming off antidepressants.
With this position statement we put patients at the centre of our work, listening to critics with an open mind and using this to inform our practice—a significant step in the right direction.
The following extract from the position statement marks this vital change to our approach: “Whilst the withdrawal symptoms which arise on and after stopping antidepressants are often mild and self-limiting, there can be substantial variation in people’s experience, with symptoms lasting much longer and being more severe for some patients. Ongoing monitoring is also needed to distinguish the features of antidepressant withdrawal from emerging symptoms which may indicate a relapse of depression.”
We also recommended that better support is provided to people who are stopping antidepressants.
Following this update, NICE changed its guidance to reflect the importance and range of withdrawal symptoms. NICE also advise people on antidepressant medication to talk to their practitioner before stopping and to get their support with managing withdrawal symptoms.
This week RCPsych is launching a Patient Information Resource on withdrawing from antidepressants. The resource offers advice to patients on carefully managing the process for stopping antidepressants.
It’s been written by a pharmacist and a psychiatrist with their own personal, as well as professional, experience of withdrawal symptoms, along with input from multiple stakeholders.
The online patient resource, available free on the RCPscych website, has been endorsed by the Royal College of General Practitioners and the Royal Pharmaceutical Society.
I’m hoping that the whole medical community will get behind this work to ensure that those needing support to come off antidepressants can get it. Most of all, I hope the resource proves helpful to people on antidepressants, and that no one experiencing mental illness is shamed or intimidated from seeking help.
Wendy Burn, Consultant Old Age Psychiatrist, immediate past president of Royal College of Psychiatrists, National Mental Health Clinical Advisor to Health Education England and Chair of Equally Well Clinical Group.
tim says
British National Formulary:
Hypnotics and Anxiolytics. Dependence and Withdrawal.
‘Withdrawal of a benzodiazepine should be gradual because abrupt withdrawal may produce confusion, toxic psychosis, convulsions or a condition resembling delirium tremens’.
`The benzodiazepine withdrawal syndrome may develop at any time up to three weeks after stopping a long acting benzodiazepine, but may occur within a day in the case of a short acting one’.
‘Some symptoms may continue for weeks or months after stopping benzodiazepines’.
‘Short term users of benzodiazepines (2 -4 weeks only) can usually taper off within two to four weeks. However, long term users should be withdrawn over a much longer period of several months or more’.
‘For long-term patients, the period needed for complete withdrawal may vary from several months to a year or more’.
‘Withdrawal symptoms for long-term users usually resolve within 6-18 months of the last dose’.
‘Some patients will recover more quickly, others may take longer’.
‘The addition of beta-blockers, antidepressants or antipsychotics should be avoided where possible’.
How therefore can an unexpected, digital notice of complete withdrawal over four weeks, in a decades-long benzodiazepine prescription recipient, be anything other than unsafe ?
Dr. David Healy says
Tim
This is wonderful. Makes the point very clearly. What people need to know is the British National Formulary is essentially written by the pharmaceutical industry.
David
Marjorie says
Another case of PID?
“I’ve been on benzos for about 24 years. At first it was Xanax 0.5mg 3x daily, then it was changed to clonazepam 0.5 mg 3x daily. Never was told it could be problematic over the long term. They just kept prescribing it and I just kept taking it. The reasons why I was put on them have come back and are worsening. I also have new symptoms such as insomnia, intrusive thoughts, memory problems, poor concentration and coordination, and tremors. I’m new to this and am scared. I will talk to my psychiatrist about it at my next appointment.“
The above individual receives healthcare through US Department of Veterans Affairs (VA). When he asked his psychiatrist about tapering, she responded by immediately reducing his total daily dose from 1.5mg clonazepam to 0.5mg clonazepam. When the individual expressed concern over this large of a reduction, she indicated she did not believe in ‘long tapers’. Not surprisingly, the individual did not fare well. He is now in the uncomfortable position of having to petition the psychiatrist to increase his dose.
The psychiatrist’s response is concerning given the US Federal Drug Administration’s boxed warning for clonazepam:
“Abrupt discontinuation or rapid dosage reduction of clonazepam tablets after continued use may precipitate acute withdrawal reactions, which can be life-threatening. To reduce the risk of withdrawal reactions, use a gradual taper to discontinue clonazepam tablets or reduce the dosage.”
As well as the recommendations presented in the Veterans Affairs (VA) clinician’s guide on benzodiazepines which include:
– “There is no one-size-fits-all approach to tapering benzodiazepines.”
– “Each patient may require a different rate of taper.”
– “A proper benzodiazepine taper can take many months or even years.”
– “The rate of taper should ultimately be determined by the patient’s symptoms.”
Moreover, an abrupt 66% reduction in dose exceeds even the formulaic taper schedules given in the VA guide:
The Shorter Taper is “Gradually reduce dose by 50% over the first 4 weeks (e.g. 10-15% weekly); maintain on that dose (50% original dose) 1- 2 months then reduce dose by 25% every 2 weeks.”
The Longer Taper is “reduce the dose by 10-25% every 2-4 weeks.”
Reference:
Re-evaluating the Use of Benzodiazepines: A VA Clinician’s Guide (2021). Accessed online at:
https://www.pbm.va.gov/PBM/AcademicDetailingService/Documents/508/10-1528_Benzos_Provider_ReEvaluatingtheUseofBenzos_P97048.pdf
annie says
British National Formulary (BNF)
Key information on the selection, prescribing, dispensing and administration of medicines.
https://bnf.nice.org.uk/
How BNF Publications are constructed
https://bnf.nice.org.uk/about/how-bnf-publications-are-constructed/
The BNF is an independent professional publication that addresses the day-to-day prescribing information needs of healthcare professionals. Use of this resource throughout the health service helps to ensure that medicines are used safely, effectively, and appropriately.
Comments from industry
Close scrutiny of BNF by the manufacturers provides an additional check and allows them an opportunity to raise issues about BNF’s presentation of the role of various drugs; this is yet another check on the balance of BNF’s advice.
All comments are looked at with care and, where necessary, additional information and expert advice are sought.
Look what Bill did to the Union Jack
https://samizdathealth.org/children-of-the-cure-sends-shock-waves/
Bill, a master in artistry
https://samizdathealth.org/
This is a really ‘big-deal’…