DD and AA Groups Similarities and Differences
Illustration: Is There Life After Meds?, © 2014 created by Billiam James
DD in this case stands for Drug Damaged. AA for Alcoholics Anonymous. Some of the material in this post is likely to disturb some readers. Reading it in conjunction with Here We Stand We Can Do No Other and Dos Centavos – Veinte Euros may help make sense of material that may not sit well with some readers.
The next point to make is this post is totally the responsibility of DH – it does not represent a RxISK position or the views of any of those running the DD groups mentioned here.
Several years ago, in the UK, a number of groups that I know of set up to handle psychotropic drug dependence and damage – one in North Wales and one in Worcester, England. At least one of the groups took their inspiration from the WARM Network, set up by Laurie Oakley in Ohio.
These notes are borne out of witnessing some remarkable individuals I know grapple with the problems of getting groups off the ground and keeping them going.
With 15% of the population of most Western countries taking psychotropic drugs chronically, it’s a fair bet there are millions of us hooked to antidepressants, mood-stabilizers, pain-killers like pregabalin, in addition to benzodiazepines. There are other drugs as well, like PPIs for gut acid, Singulair and related drugs for asthma, and antibiotics like doxycycline, we can get hooked to.
Many of us don’t know we are hooked these drugs and so none of the groups starting up were at risk of being flooded with folk looking for help. Still, it has been a surprise to see how few have got in touch with the groups I know of.
There are a growing number of options for tapering psychotropic drugs so, just as with alcohol, it is increasingly possible to get off meds without the need of a support group like AA. This may explain the lack of take-up. People do an alcohol detox program before going to AA, and many likely figure once clean, they don’t need to go to AA.
AA is a support group but it is not so much about getting us off a drug like alcohol as helping keep us off afterwards.
Complexities
Some of those in the UK approaching a DD group and directed to the WARM site for an illustration of what is involved recoiled from the mention there of AA and a Twelve Steps approach with its references to God.
Many of RxISK’s most noted contributors have been in AA groups and benefitted from them – even agnostics. There is no incompatability between RxISK and AA. RxISK is not on the side of professionals who are against the self-help that AA offers. AA is no more part of the medical establishment than RxISK is. And it is neither true to say that those in AA have had moral failings and the DD have not. This post, however, will draw some close to artificial distinctions between AA and DD in order to bring out some points.
Whether as absolute as this post will make out, the psychotropic drugs offer a different set of complexities to alcohol. Medical services welcome people dependent on alcohol and can do a pretty good job getting us off it. While staying off is not clean-cut, getting off alcohol is relatively clean-cut.
This is not the case for psychotropic drugs where medical services are often pretty hostile to the idea of us getting off, partly because they have no idea how to do it. They will very rapidly interpret any difficulties in staying off as evidence we need to be back on treatment just as much as a diabetic needs to get back on insulin.
While there has a rapid and welcome development of tapering options for psychotropic drugs, tapering is not the answer for all of us. Many of us are left with protracted withdrawal problems that do not seem to happen with alcohol. Alcohol causes cravings but not protracted physical problems that can make life beyond miserable or at least very difficult.
Some of us attempting to stop psychotropic drugs, simply cannot. There are no guaranteed ways to get us through withdrawal as there are for alcohol. In the absence of a remedy that relieves the suffering, the dysphoria and agitation linked to psychotropic drug withdrawal can be so great that it becomes all but impossible to carry on tapering or remaining drug free.
Those of us who stop psychotropic drugs expecting to feel better often have ongoing problems that, while perhaps better than the problems on treatment that led to withdrawal, are not insignificant – See The Color of Life.
This means that many people in a DD support group will still be on treatment and not in a position to stop soon or even commit to stopping.
Many in a DD support group may be taking more alcohol than they should but AA are unlikely to be of any help to them.
Anne-Marie’s case brings this out. Referred to AA because of problem drinking, when she told them that she was sure her drinking was caused by her SSRI, she was told that this was typical alcoholic thinking proving better than anything else she was an alcoholic. See Driven to Drink.
She was right and they, and every AA branch around the world, were wrong.
It now looks like the influence of the psychotropic drugs we are on may extend to causing not just alcoholism but other substance misuse problems – Did my Doctor Drive Me to Become a Substance Abuser.
Having made all these points, some people who are psychotropic drug dependent benefit from AA and its approach.
Sponsors
There is a notable feature to AA that DD groups must envy. They manage to retain members, over time, so groups can expect to continue indefinitely even if the members change.
One aspect to what AA do that may help explain this is that everyone has a sponsor, a point person they can turn to outside meetings, when they are feeling brittle or vulnerable.
DD groups are in a different position. They may not have people who are ‘sober’ between spells of being on drugs, or people who are effectively off but committed to staying in the group. They may need more people who have been through the mill and are willing to stay and help others.
Part of the problem with a sponsor in DD is that while there are overlaps, everyone’s experience is individual. The drug that is impossible for me may have been absolutely no problem for you. It is not clear what a sponsor might bring to the picture.
Having made this point, I need to also say that some DD groups do provide extraordinary support from some of those involved who themselves are not drug damaged but have learned an extraordinary amount from engaging with those who are.
To some extent AA sponsors operate on the basis of the Golden Rule – Do unto others as you want to have done to yourself. They can even figure this might require the tough love required of moral problems.
In DD, the Platinum Rule that apples to disabilities – Do unto others as they would want to have done to themselves – is a better one than the Golden Rule. See Are Women Better at Everything.
Sometimes in DD groups, people who have successfully navigated the health system seem to think if others just do what they did everything will be okay but, while we can learn from others, typically DD problems are not just a matter of following the example of another. Everyone’s course is different. Those supporting us need to be able to take this into account – which is difficult when there is so little reliable knowledge and pet theories abound.
Twelve Steps
Another aspect of what AA do is their famous commitment to The Twelve Steps. While both AA and DD are committed to Recovery – the AA Twelve Steps do not seem appropriate for DD groups.
Here are the AA Steps with possible DD Steps interleaved.
We admitted we were powerless over alcohol — that our lives had become unmanageable.
We admit we have tremendous difficulties with our medicines, which often make our lives unmanageable. But in great part our difficulties stem not just from the medicines but a system that denies these medicines can cause problems.
We are close to powerless in the face of a system that tolerates a ghostwriting of a medical literature we should be able to depend. This literature actively, sometimes fraudulently, hides the problems we suffer from – denying that they exist – and will attempt to destroy us if we do a Luther on it and say Here We Stand We Can Do No Other.
All too often the result is that even family and friends take the side of the ‘doctor’ or other healthcare professional. Even healthcare professionals who have nothing to do with medicines, like psychotherapists who claim to find drugs deeply problematic, will take the system’s side.
Came to believe that a Power greater than ourselves could restore us to sanity.
Not so. Any power greater than ourselves seems to have deserted us, facing us with religious, political and medical authorities, who castigate us for the approach we are taking – the approach we have to take. It can be difficult to remain sane in these circumstances.
While we may be struggling with the power of chemicals, and this may have been where WARM and DD groups began, an important element shared in a DD group is the element of having been hoodwinked and how to ensure We Don’t Get Fooled Again.
Very often the main mistake people in a DD group have made has been to trust in their doctor.
Made a decision to turn our will and our lives over to the care of God as we understood Him.
While it may be a good idea not to struggle too much with our situation, there is very little evidence that waiting for a God is likely to provide Care or a Cure. Its time to be Protestant about it and figure that God helps those who help themselves.
Made a searching and fearless moral inventory of ourselves.
This is part of the problem not the solution. All too often those of us who are drug dependent blame ourselves for everything and fail to appreciate that if not entirely blameless, we are much less to blame than authority figures in the System like to think. This includes religious, political and medical leaders, who condone the ghostwriting of the clinical trial literature and lack of access to the data from clinical trials, which more than any chemical, has landed us in the morass we are now in.
Admitted to God, to ourselves, and to another human being the exact nature of our wrongs.
We need others to tell us we are not in the wrong. This needs repeated telling. And we ideally need others to hold the medical and religious authorities to account for the wrong they have done to so many.
Its time for religious, political and medical leaders to admit to the exact nature of the wrongs they have done to us.
Were entirely ready to have God remove all these defects of character.
If we have got to the point of participating in a DD group, we show strength of character and God would be better employed building on our strengths rather than removing them.
Humbly asked Him to remove our shortcomings.
It would be better if ‘He’ removed the shortcomings of the physicians and others in health services as well as our religious leaders.
An old Southern US joke applies. A black man thrown out of a Church in the South pleads with God to change the hearts of those inside so that he can enter and pray. A voice comes from Heaven tells him, my son, I’ve been trying to get in there for three centuries.
Made a list of all persons we had harmed, and became willing to make amends to them all.
We almost certainly have caused harms to others – and we hope that they can appreciate the role of medicines in what happened and help us get back to being someone who can be responsible for ourselves.
If they retreat behind a hedge of harms done to them, none of us are likely to be able to move forward.
Made direct amends to such people wherever possible, except when to do so would injure them or others.
We can try to explain the issues to friends and family, but they are unlikely to listen in many cases, and quite likely to make things worse by insisting we do what others – the professionals – tell us. They are unlikely to tolerate what they may see as out attempt to palm responsibility off onto a drug.
Continued to take personal inventory and when we were wrong promptly admitted it.
While there may be things we were wrong about and should take responsibility for, it is complicated because pretty often we are likely to take responsibility for far too much including things our doctors or others should be responsible for.
Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His will for us and the power to carry that out.
Our pressing need is to find out what these drugs are doing to us. We also need to take stock of a world which bombards us and others with messages that there is a fix for our problems, ask our Doctor if X is right for us. This is a world that religious, political and medical leaders connive with.
We need to steel ourselves in the face of these siren calls to avail of a quick fix and support others to put ear plugs in also. These siren calls will continue after we get clean of the medicines we have been on and the system will remain keen to get us on medicines for our bones or cholesterol levels, for instance, even to the point of denying us other medical services, or increasing our insurance premiums, unless we do as we are told.
Having had a spiritual awakening as the result of these Steps, we tried to carry this message to alcoholics, and to practice these principles in all our affairs.
We now realize that no-one wants to listen to or look at us, as we are, anymore than they would want to look at women who have had acid thrown in their face. Like those women, we need to find ways to harness the power of the powerless.
See Nearly Invisible Drug Traffic Accidents and Discarded by GSK
If this sounds like the message of the Christian Gospel don’t be put off.
Drug Damage Groups
At present the drugs of greatest concern are
- Antidepressants – all antidepressant groups but serotonin reuptake inhibiting drugs in particular which include some antibiotics, pain-killers, antihistamines and others. There are far too many posts on RxISK about damage from antidepressants to list even a fraction of them. The ones most pertinent here are the ones that turn up on the RxISK blog page under the Withdrawal Tab along with Girl on a Hot Tin Roof.
- Antipsychotics – all of them but Quetiapine (Seroquel) and Olanzapine (Zyprexa) are among the worst. See Sally’s Story, Still Treading Water, The Invisible Doctor, Abilify From the Inside Out and The Once and Future Abilify and many others on RxISK.
- Mood Stabilizers – many of us think we are on a mood-stabilizer when in fact we are on an antipsychotic or an anticonvulsant
- Anticonvulsants – these can cause all the problems that antidepressants and antipsychotics can cause from suicide to dependence and many other life-threatening physical problems. Lamictal, lamotrigine is a real problem. See all posts under the Anticonvulsant tab along with Going on Depakote and Coming off Depakote.
- Benzodiazepines – the problems the benzodiazepines cause are to some extent accepted by the System. What is less accepted is that the System causes these. There is instead a lingering suspicion that if we are having problems it is down to some weakness in us – others, after all, seem to be able to stop without problems.
- Gabapentinoids – just when the benzodiazepine problem was caught and we thought it was now safe to go back in the water, the gabapentinoids, Pregabalin Lyrica, Gabapentin Neurontin and others turned up. Many of us thought surely doctors have learnt a lesson with the benzodiazepines but no they then began to dish out these closely related drugs in a shockingly liberal fashion – The Day the Lyrics Lied, and Kicking Lyrica.
Moving Forward
The chemicals we have been put on, stripped of the information that should make them safer is a big problem. Our deepest problem is not just the chemicals or the missing information but the fact that we are the unlucky ones. The system rolled the dice, we were injured, and the system now looks away.
We can find some within the system, who can help us, but these are pretty rare and a full-blooded commitment to helping us would be likely to cause them problems.
We are the unfortunate ones. No-one likes misfortune, not even those of us who are unfortunate. The company of other unfortunates can be a painful reminder. The company of those who have been broken, however, can be the only company that helps. People who have been there and are not professionals. This is true for both AA and DD.
We are in a horrible situation. Remaining isolated and passive cannot help us and may make things worse. But activism is not the answer either, at least not for all of us. For some of us support and tenderness are the primary need. And if we get out the far side of our problems, getting on with life rather than trying to change the world can look a very attractive option.
Getting on with life can be tricky when taking medicines very often symbolizes to others that we are competent again. They breathe a sigh of relief – they are not going to have an outburst that will disturb their more fortunate lives.
We, on the other hand, must continue to search for an understanding of what causes our drug induced damage and ways to remedy this, while also attempting to find a way to transcend our misfortune without turning to system sanctioned options.
The Vaccine Violated
There is now an enormous group of people with a lot in common with the DD and these are the Vaccine Violated. In many countries, there are tens of thousands severely damaged folk who also face a System that denies their existence.
Some have banded together to do their own research and find remedies that that the System is not willing to embrace.
This is marvellously represented by Brianne Dressen and the many others working to create REACT19 and to support the thousands they know who need just the kind of support that comes from a personal touch, from an element of tenderness that goes beyond understanding, along with top-grade research that people are forced to do for themselves.
Other than those who have become immediately suicidal, the DD have mostly found themselves in slowly heating water unable to escape. The VV in contrast have been dropped straight into boiling water. What the VV have done holds lessons for everyone who has been injured by treatments.
Beyond vaccines and psychotropic drugs, see RxISK’s 500 Drugs that Cause Suicide and posts on Montelukast Beyond the Black Box and Withdrawal Syndrome and Toxicity.
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This is an excellent post. We shall now include this on our Facebook Group – a public group, called “Feeling Blue?” – in the hope that it will be read by many BEFORE they get their first prescription for a dreaded drug dressed as “happy pill”.
We have a good number of members on Feeling Blue but none have joined our DD group from there – maybe by reading this post, they will better understand our relevance in some of their lives. On the other hand, maybe they won’t; admitting that there is anyone, anywhere who can possibly understand, help and support seems to be very difficult for many trapped in the drug wilderness. Many have been shunned by friends and family and have been left feeling that this is a journey best made alone. It obviously is an individual’s journey but you can travel together, leaning on each other, without dictating the path to take, for there are many twists on the way – some may be common to a good few whilst others will be completely individualistic.
If anyone, on reading this post, feels that they, or someone they know, would like to join such a group, then it is important for you to know that we all now meet by zoom. PLEASE let them know that we do NOT perpetually talk about God – that is not in our nature. We do not oppose those opinions but do not make any mention of such at our meetings. Those of us who would like to think that we lead a “Christian life” would rather that you judge us by our deeds, which should reflect the very best of any beliefs that we hold.
We regularly check out our relevance within our group community. There is such a wide variety of needs and reactions that it is almost an impossibility to cater for all needs. Some need to share their suffering in the hope that someone else feels more or less the same or have some ideas to relieve the suffering. Others want to share the dreadful suffering that they have endured, hoping for an explanation. Some wish to gain a better understanding of exactly how best to deal with their reductions. With such a wide variety of needs, why do we have a problem keeping our member numbers? The answer is fairly simple – some stay away because listening to the suffering of others makes them feel worse. Others seem to stay away once they feel slightly better – hoping that they can convince themselves that they weren’t as ill as they had suspected, I guess. Those still with us, still on that long, lonely journey would love to have the company of the ones who have managed to get themselves on to firmer ground.
If anyone now feels that they would like to set up their own group, then WARM network website is the place to go. We are part of WARM but run our group according to our own ideas and the needs and wishes of those whom we support. Any mention of ‘God and the 12 steps’ to which some seem to object is, in my view, simply there as a guideline. We are so grateful for Laurie’s encouragement in this matter and take all her words as directing us towards HOPE, on which we all depend.
Anyone wishing to learn more about our groups may like to reach me by email :- ellen.hennessey@btinternet.com. (Don’t worry about the different name – it is my first name which BT seem to prefer me to use!) If you get in touch with me, I can inform Worcester Withdrawal, if that is your wish, and I’m sure that they would be in touch with you too.
Thanks for this, Mary! We need each other, just as human beings, and that need is all the more important when you’re caught up in such a lonely and bewildering struggle. It can feel like being locked in solitary confinement sometimes—and people can go mad in Solitary. Just being able to talk to someone who has been there and knows you are not imagining things can be HUGE.
That’s why AA tends to “work,” I think. Not everyone is religious – there are even a few dozen Atheist-Agnostic AA groups in the States, and lots more groups where how you see the “God business” is up to you. Alcoholics differ in plenty of other ways: there are binge drinkers and daily drinkers, raucous party people and quiet ones drinking alone in front of the TV.
Some pop in to a meeting a few times a month, some build their whole social lives around AA, and some disappear entirely after a year or so. Most of us meet a few “kindred spirits” in AA, but also find something to share with folks whose lives have been totally different.
Hi J
I drove up to the Catskill Mountains for a week-end advertised as a super-meeting place to make new friends. The huge old hotel held about thirty of us and we met at a dinner reception.
Mostly loud, caked-make-up women and a few sad old men. It wasn’t cheap.
A very cute, little girl decided I would be her friend. She was about seven and told me all about her dad. I eventually met ‘the dad’ and what a nice man he was. His little daughter asked for my phone no. and could she call me to chat. They lived in Brooklyn, not far from New Jersey so I gave it to her. She would call me, she was a delight, and we would chat. Then one time, she invited me to stay with her and her dad. This little girl had no mummy and was obviously keen for a new mummy, I was in my late twenties; it was decided I would visit.
We played games all evening, it was lots of fun. The next night the dad took me out for dinner, dear daughter had gone elsewhere. He chose a bottle of wine, and poured me glasses. He told me he used to be a prison warden and it was hell on earth and he decided to retire as he had become an alcoholic with the stress of the job and being a sole-parent.
He said that tonight was his AA meeting and would I like to join him. There were about ten of us in a room. Tonight it was the time of Marilyn. She stood up and said, My name is Marilyn and I am an alcoholic.
Sitting there listening to Marilyn; this was acutely painful. Her life had been drenched in alcohol. She had bottles of whiskey under her bed, under her pillow, in the kitchen cupboards and there was hardly a moment when she was not drunk. Drunk on no-hope, drunk on destruction, drunk on loss.
It takes a lot to throw me, but I was completely thrown. My first introduction to AA, with an alcoholic, with a little girl trying not to be screwed up.
My dad really likes you, she says. Yes, and I really liked him and his dizzy daughter, and I thought about it, but really these aspects of US life were not really what I had in mind when I moved to America for my career.
This post reminds me of Marilyn, the dad and his daughter, the SSRIs and the Benzos, and the horrific nature of being dependant on ridiculously out-of-touch doctors who savage their patients whilst the AA lot, at least have a listening ear – even if it is despicably demoralizing that you have to stand up and say, My Name is So and So and I am a …
This is exactly what I have been missing in the DD group. A guideline. Something we can read every time we start the meeting. Something that spells out why we have come- something to hold on to. Something to frame in peoples shares. I really think it would be great if we read the drug list and the steps in the beginning of the meeting, and close the meeting with the moving forward part. We need to be reminded of these truths that are stated here. No one else reminds us. like is being said I need to be reminded again and again. that I am human- that Its time for religious, political and medical leaders to admit to the exact nature of the wrongs they have done to us. Even though they wont, it’s good to just say it together. Saying this together I think we will be restored to sanity in that moment. I think reading these guidelines and steps out for everyone in the group to hear every meeting – that it will be our spiritual moment.
Lisa, I hear you and will come to what you have to say and suggest in a while. Before that, I would like to explain a little more about our group.
Firstly, to address what we are NOT! We are NOT affiliated to RxISK – we, who have set up this group, follow rxisk regularly, but that isn’t true of all who have joined us at our meetings. We are NOT part of a DH fan club or cult! We have our reasons to highly respect David and his work – but that is quite separate from the work of our group. We are NOT an “underground movement”, NOT a group “in hiding” – everything that we do is fully known and understood within the sections of our communities where we are known. We are NOT bad. We are NOT mad. We are just unfortunate. We hold no information on those who join us other than their contact email address. We do not share who attend our meetings and hold everything shared in the utmost confidence. We will NOT hide from the world. All of this is true for our team who set up the group and would have been true for all who would have met with us in person had Covid and its consequences not come along. Being on zoom makes it more difficult due to having quite a turnover of those attending the meetings.
Let’s share what we ARE about. We are open to questioning and are very aware of others’ needs. We are accommodating of the views of others. We are loyal to DH, to our members and to our local community. We strive to be positive, to share hope and acceptance of what has happened and provide support to move on. We provide a safe place to share innermost feelings. We hope that of us anyone could say “what you see is what you get”!
Now, let’s see how Lisa’s ideas fit within our group. As I have already said, Lisa, we hear you and are accommodating of your views.
To that end, I invite you to be the one to hold our next meeting. Not this week’s meeting but the one in two weeks’ time. That will give us time to inform all of our members and the Worcester group of a “different” meeting. If there is anything that you wish the members to have done in preparation for your meeting, please let me know as soon as possible so that the request can be part of my contact with everybody.
Your ideas don’t sit well with me but that doesn’t stop me from seeing for myself how others respond to them. To me, we who attend all know those guidelines and it goes against the grain for me to repeat them at every meeting. ( Maybe that is because I am part of the Presbyterian Church who broke away from the Church of England and Wales due to their dislike of the robes and chants that seemed to be more important within their services than the wellbeing of their communities!). Those “guidelines”, in my opinion, are what we need the community at large to hear and understand. By sharing them amongst ourselves we do nothing to take the message beyond our own walls. We set up our group with a view to warn others of
what can happen if we are too trusting.
Lisa, there is a website that may be of interest to you, called In The Rooms. It may well be a place where you can freely share your innermost frustrations about what has happened to you with quite a large audience. It seems to be a mansion – a place of many rooms – and a very safe place to share your feelings. The link for it is :- intherooms.com. I look forward to your further comments and, hopefully, your acceptance of our invitation.
Dear Mary, I don’t understand why u seemed to get so upset with my post? (Maybe you not upset, maybe I just read too much into it, I usually do that) Maybe its because I have spoken about this before, that it would be good to read something that states some rules or a platform, – things like that, a reminder of what we have in common and I think you already said you don’t want it. And probably explained to me why, and I think I even understood what you meant so please forgive me, my memory is not the best.
But why would reading about the drugs and some of the points made above make us into a cult?
I just felt when I read those words on there- and the steps, that it felt like it restored me to sanity- (AA language). And when a lot of people say something together that rings true for them can it not be spiritual? For me this is what makes AA spiritual. I remember one time I was really worried about my financial situation- and I went to an AA meeting just to hear the promises read out loud to me in the fellowship. I went from the meeting encouraged and strengthened. Now I don’t know who the author of the promises is- I was never really super interested in AA history- but if it was Bill or Bob who wrote them, I certainly did not go to worship Bill and Bob. AA for me was being vulnerable together in something-trying to stand against something that is bigger than us. In AA its alcohol. The power psych drugs have over me can’t even compare to alcohol; it feels 10.000 times worse. and I have only known about rxisk for one year and 3 months, I don’t understand how all of this works and how it is woven together or kept apart, who the author of all the texts are at all times. I just know that I have a need to keep reading, because I don’t have this knowledge embodied in me at all times, I still need daily reminders from people who tell the story different. The story my life unfortunately is part of. I need to listen to them. Maybe other people also have this need (to be brainwashed in a good way- AA language) maybe they don’t. I don’t think it would take long to read this maybe 12 minutes in total. I can chair the meeting at some point if you want and we could ask what the others feel about it- but not in two weeks, as I will be in the same city as Laura Delano then and I will do my best to try and go hear her. See you tonight
Hi Lisa,
I hope that the explanation that I have sent you privately after our meeting this evening will help you to understand my points – that my reply to you, personally, was way down in the comment and that the “what we are” and “what we are not” were there to clarify what our group stands for.
We shall see how things go 4 weeks from now, when you will take the meeting and then we can report back here, to explain to anyone with an interest, how it all worked out.
We provide the space for meetings – we do not own them. However, we have our own views too and those also count.
“This is not the case for psychotropic drugs where medical services are often pretty hostile to the idea of us getting off, partly because they have no idea how to do it.”
“On 20 August 2021, Ms. Findlay was admitted as an inpatient at the Priory Hospital, Roehampton,
following a referral from her General Practitioner for “various complaints”. Ms. Findlay had been
taking the anti-depressant venlafaxine but this had resulted in unintended urinary retention and
prior to her admission, her intake was being reduced by her treating psychiatrists. On 20 August
2021, following her admission, she was started on a different anti-depressant, vortioxetine and
attended to by staff and medical professionals.”
“On 27 August 2021, Ms. Findlay discharged herself from the Priory Hospital, Roehampton. This
was despite the requests of her treating psychiatrist for her to remain so that her response to her
change of medication could be monitored.
At the time of discharge, no significant risks were identified and Ms. Findlay was deemed to have
capacity and was deemed fit for discharge. A discharge plan was put in place.
The discharge plan for Ms. Findlay included that she was to contact the hospital to make an
outpatient appointment. She was also discharged with a week’s supply of medication. A discharge
summary was sent to her GP”
https://www.judiciary.uk/wp-content/uploads/2023/03/Annabel-Findlay-Prevention-of-future-deaths-report-2023-0080_Published.pdf
Anyone care to inform the coroner and https://www.judiciary.uk/ the real concern here..
Putting aside the issue of whether people are aware their records will be trawled though after death and be glad or not of that it could (if the incompetent groups handling the proposal get their act together eventually) give a tiny opportunity for bereaved family members to challenge the recorded reason for deaths. It is another reason why individuals should put their own comments on their medical records as ‘independent’ scrutiny is proposed. How independent is something we would have to wait and see. Family members have a right to access records after a death, but am not sure what the weasel wording would be as some GPs are challenging the proposal
Pulse Today
New death certification system ‘postponed due to legal delays’, GPs told
Eliza Parr
17 March 2023
Exclusive A new system requiring GPs to agree death certificates with a medical examiner may have been postponed due to legal delays, Pulse has learned.
The system was meant to commence from April this year, with the intention of medical examiners (MEs) providing independent scrutiny of all deaths in the community which are not taken to the coroner.
However, some GPs have flagged that the legislation necessary to mandate this system is currently missing, with one LMC leader calling the implementation process a ‘car crash’.
And Pulse has heard from multiple GP leaders across the country that the commencement of the system has been postponed with no new start date confirmed.
The Department of Health and Social Care (DHSC) did not deny this claim, and said that an announcement would be made in the next few weeks.
Last week Pulse revealed the BMA is planning to ask DHSC to remove workload from GP practices that could be done elsewhere in order to relieve pressures. And a potential list of ‘bureaucratic items which could be done by others’ sent to DHSC included the medical examiner system.
The statutory system was formally introduced by the Health and Care Act last year and NHS England wrote to GP practices in England in July asking them to implement processes to facilitate the work of medical examiners by 31 March 2023.
It means GPs would have to give access to a deceased patient’s records in order for the medical examiner to reach agreement on the accuracy of the medical certificate of cause of death (MCCD), where before this extra scrutiny was not required.
Implementation has so far been determined locally and some GP practices have been using the system for many months already as a pilot scheme.
Last month, the temporary permission granted by the Confidentiality Advisory Committee (CAG) to medical examiners for them to access deceased people’s records was extended until March 2024.
The extension suggests that ‘the national team doesn’t have confidence [the ME system] is going to be sorted any time soon’, according to Leicestershire, Leicester and Rutland LMC chair Dr Grant Ingrams.
Dr Ingrams said in his area they have worked through a process with the local ME, and together they agreed to ‘slimline’ the national process because it was ‘far too bureaucratic’.
However, he said: ‘Now we don’t know what to do next because we don’t know what the legislation is going to say. Until we’ve seen the legislation, we can’t do anything more.
‘We’re waiting, waiting, waiting, without any idea what’s happening. It’s a bit like watching a car crash in slow motion, because you know it’s going to go wrong.’
Dr Michael Mullineux, a GP in Maidenhead who is concerned by the rollout, said that while he agrees with the new system in principle, the law has not been adequately changed to mandate it.
He said: ‘It concerns me that as usual a partial statute has been launched without any legal framework, inferring it’s our duty to follow this.
‘It would appear absolutely zero consideration has been given to the impact on general practice.’
The Health and Care Act 2022 amended the Coroners and Justice Act 2009 to allow NHS bodies to appoint medical examiners, instead of local authorities, in order to improve the quality and accuracy of MCCDs.
However, GP leaders highlighted that the necessary changes have not been made to the Births and Deaths Registration Act 1953.
According to Dr Ingrams, this means the legislation requires that there is a process in place, but does not actually require that doctors use the system, so MCCDs do not legally need ME scrutiny.
Cambridgeshire LMC, in its recent March newsletter, also highlighted this gap in legislation, saying the 1953 Act ‘does not provide for any other doctor to intersperse themselves into the attending doctor’s decision making about MCCD’.
It added: ‘Therefore, until there is both a legal and practical framework in place, Cambs LMC advice is there is no requirement that GPs change current working practices around MCCD.’
On 23 February, the Confidentiality Advisory Group extended its permission, under section 251 of the NHS Act 2006, for MEs to ‘access the records of deceased individuals held outside Host Trust by different healthcare providers’.
The permission has been extended twice since initial approval in 2021, and will now last until 31 March 2024.
The DHSC did not confirm whether the system has been postponed and did not comment on what legislation is needed to mandate the system, but said it will set out next steps in due course.
Dr Ingrams said the lack of clarity from the Government was ‘appalling because there are so many people putting so much work into this, working to a timescale, not knowing whether it’s going to go to waste or not’.
‘No one can finalise their plans without knowing the final wording of the legislation and the final guidance. Services don’t know whether or not in two weeks’ time they need to implement this or not – what do they do?’
Last year, then-primary care minister Maria Caulfield said the medical examiner system would enhance detection of ‘poor practice’ among GPs.
And a House of Commons document from 2021 said: ‘The introduction of a system of medical examiners follows a long period of policy development, including pilot schemes, which originated, at least in part, as a response to Harold Shipman’s murder of his patients.
‘In 2003, the Shipman Inquiry, chaired by Dame Janet Smith, proposed that there should be an effective cross-check of the account of events given by the doctor who treated the deceased and who claimed to be able to identify the cause of death, regardless of whether the death was followed by burial or cremation.’
How the statutory medical examiner system will work
Under the new system, all deaths not taken for investigation by a coroner will have independent scrutiny by a medical examiner, who is based in either an acute trust in England or local health board in Wales. Medical examiners are senior medical doctors who are trained in the legal and clinical elements of death certification processes.
The purpose of the new system is to:
provide greater safeguards for the public by ensuring independent scrutiny;
provide a better service for the bereaved and the opportunity for conversation with a doctor who is not involved in the care of the deceased;
improve the quality of mortality data.
Once it becomes a statutory system, GPs who complete MCCDs will have to share this with the medical examiner in order to agree the proposed cause of death. This means GP practices must have arrangements to share the records of deceased patients with their local ME office.
A comment from Barry Haslam who for decades has been one of the most active campaigners for getting the benzodiazepine problems taken seriously:
I think that benzo matters in Britain have been covered by the recent Daily Telegraph article a few days ago.
Our government are still kicking the can down the road, looking as if they care and yet they do nothing constructive to help matters. They will not find the funding for even a 24 hour helpline, let alone fund dedicated withdrawal services for prescribed, long dependent benzo patients. Doctors have neither the time, nor expertize to withdraw patients safely and even now are making patients go cold turkey. Doctors are panicking in their lack of know how to withdraw patients.
Over 1,000 Parliamentary Questions have been ‘put down’ on the issue of benzodiazepines going back many years. Silence is golden from our elected MPs and Ministers.
The main source of help for patients in Britain comes from the Support Groups on FB and put’s our corrupt government to shame.
Professor C.Heather Ashton described the benzo situation as ” A medical disaster, akin to thalidomide” and also told me ” That the real experts are the patients themselves.”
The current prescribing annual figure for benzodiazepines in England is 8 million plus.
In my opinion this national scandal is a political issue and it need’s a political solution but the British government does not have the political will or the courage, to tackle the powerful vested interests involved.
The British government have ducked this issue for decades and continue to do so.
Here is the Daily Telegraph article Barry Haslam referred to:
Thirty years on, I still have symptoms from taking benzodiazepines. Despite the warnings against long-term use, many of us are reliant on medication with serious risks of side effects
By David Cox 17 March 2023
In the 1970s and 1980s, vast numbers of people in the UK began taking benzodiazepines, a group of drugs more commonly known as tranquillisers, for stress, anxiety and insomnia. Drugs like Valium (diazepam), Xanax (alprazolam) and Ativan (lorazepam) rapidly became household names.
As father to a young family, working two jobs to make ends meet while studying for his accountancy exams, Barry Haslam was prescribed steadily increasing doses of Ativan by his GP after suffering a mental health breakdown.
After 10 years, Haslam quit the drug after experiencing increasing cognitive side effects, and being told by his wife that his personality had changed. Today, nearly 40 years on, he has no recollections at all of that decade.
But amnesia is far from his only problem. “Being prescribed benzodiazepines for 10 years left me with brain damage,” he says. “All these years on, I still experience daily chronic headaches, brain fog, intense fatigue and neuropathic pain. Brain scans have shown that I suffer with fluid on the brain and brain atrophy. The impact on my daily life is immense.”
Haslam is just one of many people all over the world who reached out to The Telegraph describing their experiences of cognitive problems after taking benzodiazepines for years or even decades.
Lori Pemberton, a college professor in the US, said she developed increasing issues with memory loss and concentration issues after being prescribed the drugs for more than 30 years. A Facebook group called Beating Benzos is full of others with similar stories.
For while benzodiazepines are not meant to be taken for more than 28 days at a time – no clinical trial has ever studied them for longer than this – they are extremely addictive because they can lead to long lasting changes in the brain’s reward system, causing people to become increasingly dependent on them.
In recent years, a spate of new studies has highlighted the problem with taking benzodiazepines for an extended period of time. Last year researchers at addiction clinics in the Netherlands found that 20 per cent of long-term benzodiazepine patients had significant cognitive problems ranging from their ability to quickly process information, to their attention span.
There is no doubt that you see cognitive impairment in patients who have been on benzodiazepines for long periods of time,” says Hamish McAllister-Williams, professor of affective disorders at the University of Newcastle. “As you get older, as your cognition deteriorates, that’s the case for all of us, but what you’re doing I think, is shifting that entire slope down with benzodiazepines.”
Studies have suggested that benzodiazepine use is increasingly risky with age. Elderly people are more likely to fall, be involved in car accidents and experience problems with concentration or midday drowsiness, if they are taking the drugs. An association with dementia has been suggested, although the evidence for this remains inconclusive.
We still do not fully understand why. While it is known that benzodiazepines bind to gaba receptors, a critical part of the central nervous system which plays a role in calming the nerve cell hyperactivity associated with anxiety, stress and fear, no one has investigated the long-term biological consequences of interfering with this system.
“They’re the least studied addictive drug,” says Keith Humphreys, a Stanford University psychiatry professor. “Benzos are a depressant, in some sense similar to alcohol. We know that over time, alcohol causes brain adaptations that result in reduced cognitive effects, so benzos may lead to certain brain regions shrinking compared to what you would expect with normal ageing. We’re really not sure.”
But concern about the long-term impact of taking benzodiazepines is nothing new. Back in 1982, the British psychiatrist Malcolm Lader – who described them as “the opium of the masses” – presented data on brain scans from a number of patients who had taken diazepam for several years, suggesting that their brains had been damaged and atrophied by the drug.
In the mid 1990s, Haslam was awarded a disability living allowance by a tribunal which ruled that his injuries had been caused by medical negligence. He became a campaigner for greater awareness of the dangers of benzodiazepines, even receiving a pledge from future Labour cabinet minister David Blunkett to lobby for parliamentary action on the subject, and helping to establish the first dedicated NHS service to help patients wean themselves off the drugs in 2004.
But three decades on, benzodiazepine use remains extremely high – according to NHS data 8,355,533 doses were prescribed between December 2021 and November 2022 – and Haslam remains frustrated at the lack of political action in raising awareness of the long-term problems which can be faced by users of these drugs. “Blunkett broke his promise to help victims of benzodiazepines,” he says. “There has since been no will from any British political party to tackle this national scandal of the true dangers of these drugs.”
Some scientists also suspect that so-called Z drugs – the collective name given to the sleeping pills zopiclone, eszopiclone, zaleplon and zolpidem – can also lead to cognitive problems when used for many months or years, although the evidence for this is less clear.
Chris Fox, a professor of clinical psychiatry at the University of Exeter, is leading a clinical trial which is set to begin in 18 months time, involving 1,000 insomnia patients across 100 GP surgeries in the UK, to try and understand why some people develop problems from using Z drugs, why others are more resilient to their effects on the body, and why. “There’s no perfect solution because while you shouldn’t take these drugs for more than 28 days, people need to sleep sometimes because lack of sleep itself impairs cognition,” says Fox. “And some people may need to take them for a while.”
But because of the addictive nature of these medications, which makes patients very vulnerable to becoming dependent on them, Haslam and others feel that there needs to be more dedicated NHS withdrawal services, helping people wean themselves off the medications. This is a slow and complex process, involving tapering – slowly taking lower and lower doses – which can take more than a year and can induce severe withdrawal symptoms such as panic attacks, sleep disturbances, tremors, nausea and headaches. In the case of benzodiazepines, scientists have even suggested that breaking an addiction can take more than a year, yet it receives remarkably little attention.
“It’s still not taken that seriously,” admits Humphreys. “That’s perhaps because relative to alcohol or cocaine or methamphetamine, these drugs don’t cause great problems for other people. It may be associated with falling asleep in the middle of the day or experiencing memory lapse, but not the explosive things like violence and that’s perhaps why we don’t notice it that much.”
Having battled the long-term implications of benzodiazepine-induced brain damage for so long, Haslam says it is a problem which urgently needs more attention. “I would like this… medical disaster tackled once and for all,” he says.
My understanding is that the Facebook groups and Zoom groups differ in that the Facebook groups tend to be much bigger ( I believe Cymbalta Hurts Worse has in the region of 35k members) and some of the groups give out structured tapering advice. Some are more ‘hands on’ in terms of advising people how to taper, when to hold/reinstate etc and also advise on a myriad of other withdrawal things, like symptoms, self- care, coping skills, to how to measure out liquid formulations.
The Zoom groups (I’m thinking here of Worcester and North Wales which are the two I am familiar with) are much smaller, more intimate spaces. If thousands of people wanted to join a Zoom meet obviously that wouldn’t work so we’d need zoom groups to be starting up everywhere to cater for everyone. The Zoom/ face2face groups offer a space for people to literally ‘be seen’ and be able to talk to someone- having a face to face conversation for some people can be very helpful. We’re in a world where it’s increasingly difficult to sit down in front of someone and feel that you are being listened too so perhaps the face2face/zoom support spaces are unique in this sense. My personal feeling is that in some ways the zoom group- (in my case Worcester Withdrawal Group which I’ve had some involvement in), is less about tapering people off and more about acknowledging the person and bearing witness to what is happening. There’s a sense of validation and understanding which reaches across all peer spaces and it’s this acknowledgement which is so vital- because this need for people isn’t being met elsewhere. In this sense a part of the support or ‘relief’ for people (if that’s the right word) is in knowing you are seen and believed. The Worcester & North wales Zoom group’s have both invited guest speakers to come and talk to their groups and this is significant because for some people it may be the first time they’ve heard someone explain what is happening to them and this increases the validation/ recognition.
Many people as we know rely on the Facebook groups for practical help- perhaps this is one of the limitations of the Zoom groups because certainly within the Worcester group at least, there is a disclaimer in the handbook that says we don’t give out specific medical advice or tell anyone how to taper. Bristol Tranquiliser Project in the UK offer a brilliant helpline-and many of those within the Zoom groups have accessed this helpline for tapering advice. Sometimes BTP will also refer people across to the Worcester Zoom group especially if people are keen to link up with others going through something similar. Perhaps one consideration in how groups run is what the different groups can offer (and their limitations) and what the needs are of the individual looking for support.
Something to perhaps mention here briefly is that in some peer spaces people who are unwell themselves may be trying to support other people. This can be challenging because as one person described it recently you have “poorly people supporting other poorly people”. It can also be hard going for some people to be exposed to horror stories week after week and to hear such deep levels of suffering particularly if they are going through it themselves so there is less distance from what’s happening. There is also a risk- and I imagine possibly this may extend to facebook spaces also- that people may give out poor advice or suggest something to others which they themselves have found useful but which could be detrimental to someone else so you ideally need a facilitator or someone who can be a kind of gentle presence to help guide conversations. These are perhaps some of the things that need to be considered when running groups to make sure they are as helpful and supportive as possible.
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Antipsychotic Withdrawal Survey – Spring 2023
Inbox
Maastricht University wiltonhall@gmail.com via gmail.mcsv.net
Tue, Mar 21, 11:00 PM (11 hours ago)
to me
Greetings from the Maastricht World Survey on Antipsychotic Medication Withdrawal ~~
I wanted to thank everyone who has contributed to the survey and supported this work. Here’s a quick update of where things are at:
Data analysis and writing are underway with myself, Rachel Flanigan, and Ruth Cooper PhD collaborating on a factor analysis (to identify the underlying themes of the survey responses), and probability (regression) analysis (to evaluate the impact of the identified factors on withdrawal) of the survey results for respondents with a psychosis diagnosis. Big appreciation to Rachel for her study conceptualization and survey statistical science expertise as a trained economics statistician; Rachel also has extensive experience as a hearing voices movement facilitator and brings a critical understanding. Ruth is also a huge asset to this project, she has a powerful background in psychiatric research around psychosis and medications (check out a recent study here). I feel very fortunate to be working with both of them.
If you haven’t seen the data results presentations done so far, here are links to pdfs you can check out and also the video presentation I did.
ISPS update https://drive.google.com/file/d/1c2_r2SBGuNV21a0CBt4D1uOvWY4hLX0c/view?usp=share_link
Mad In America update https://drive.google.com/file/d/1THEXgrrwIGIiuzuvqjSzKXfrIFLHhqQv/view?usp=share_link
Sept 2019 update https://willhall.net/MaastrichtUniversity/MaastrichtSurveyProgressReportSept2019.pdf
Sept 2019 video presentation
https://youtu.be/pdR9LxpleQ8
There is also a background paper I wrote on my approach to medication withdrawal research that was published in the Journal of Humanistic Psychology you can check out if you haven’t already.
And I recently published a paper on how to address the widespread difficulties faced by researchers from patient activist backgrounds with less power when we enter into the psychiatric research industry: you can read it in Research Ethics journal, here.
Thanks again for your interest and support – more updates coming soon!
– Will
PhD Candidate, Maastricht University
School of Mental Health and Neuroscience
signed up for updates on the Maastricht World Survey on Antipsychotic Withdrawal
Our mailing address is:
Maastricht University
School for Mental Health And Neuroscience
PO Box 616
MD Maastricht, 6200
Netherlands
Does Lithium has any persistent syndrome associated with its use ? No safe options for bipolar people ?
I don’t think their is a right or wrong way for a group to run, its not going to be run perfectly for everyone, we just have to try make sure we include everyone and take everyone’s idea’s on what they would like to see in the group and see if that help’s. We run our group based on a hearing voices group I went to and that’s the only group we know about.