Medical Kidnap: Get Out of Jail Free Report

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May 3, 2016 | 29 Comments


  1. “But here is the snag. While we had more patient reports than anyone else and we had a significant number of doctor reports, we had no reports from doctors and patients. People were not taking their reports to doctors. We asked you to tell us what reception you had from your doctor – but no-one did.”

    We need more of this — no doubt about that. But I think RxISK has already gotten a number of reports “informally” from patients who did take a RxISK Report to their doctor. And they’ve been almost universally negative. Either dismissive, or openly hostile. Rory Tennes’ story on the blog is a case in point:

    My own experience involved losing consciousness twice in two days. I woke up on the floor with no idea if it was day or night, or what had happened. Information I got on RxISK pointed to a heart rhythm disorder, associated with two of the three pills I was taking. Combining two pills of that sort clearly raised the risk. I took the report to both doctors. Not only would neither one believe it was the drug — both also told me the problem was simply “dizziness”, probably due to the illness.

    Most discouraging was the fact that the scientific respectability of the RxISK information (both the FDA warnings, and the algorithm used in the RxISK report) seemed to make no difference. I was treated just as if I had brought in “Internet junk” from some dodgy site hawking expensive vitamin supplements.

    This is part of our challenge: While a relatively small number have taken RxISK Reports to the doctor, millions of people have done other kinds of research on their treatments, often quite skilfully, and attempted to share the results with a doctor. Their experiences are relevant as well–especially in exploring why some may be cynical about the prospects for sharing a RxISK Report.

    I believe this RxISK project can work! But I think we may need to revise our plan for exactly how it will work. For starters, we may have to revise those “one-eight-one” figures as to how doctors react. We also have to look at the economics of the process: How free are patients to switch doctors under different systems? Do doctors have an incentive to keep/attract patients, or not? Does it depend on the type of patient? Who is the doctor’s boss? Etc.

    Looking forward to hearing other ideas!

  2. I can well believe that many are scared of their doctor’s reactions when they turn up with a RxISK report for them since it’s a totally new way for us as ‘patients’ to behave. Thinking of the scenario from a doctor’s point of view for a moment, I bet it scares them more than a little to be confronted too. Being scared can cause the calmest among us to become hostile. What then could we suggest as a means of deflecting the ‘fear’? I would suggest that the Rxisk report is taken into the surgery as a private letter for the doctor, to be read without the patient needing an immediate reply. If that fails, I would suggest that the patient takes a second copy to their next appointment, takes a carer/family member/ friend along with them (having made sure beforehand that this person believes the Rxisk report is the truth) and asks the doctor for their comments on the previously-left copy.
    I am taking for granted that anyone taking a report with them will already have approached their doctor with their own feelings concerning adverse reactions etc. over many previous appointments. I would suggest that following this, the patient has every right to expect a reasoned response – if that is not forthcoming I would suggest a call to the Advocacy Service.(I found them to be very professional and fair with a ‘no-nonsense’ attitude).
    May I suggest that where the non-believer is the patient’s psychiatrist as opposed to GP, then feeding the patient’s Care Co-ordinator with the symptoms (and your feelings of their source) plus the Rxisk copy is far more likely to work rather than confronting the psychiatrist directly. They seem to be far more accepting of ‘new’ ideas – after all they are the ones who deal directly with the patient and their adverse problems. They are not governed by what the ‘books’ tell them to believe and are quite open-minded.
    The ‘ Rxisk report’ way forward is so simple to use as far as I can see, it is a shame if it is to be of little use due, in the main, to fear or lack of trust.

  3. Are you asking only for information from patients currently on a medication prescribed by their current doctor? Or do you also want to hear from those reporting to a new doctor what happened previously on a drug with a former doctor?

  4. That is a great question, Laurie.

    My immediate reaction on reading about the Rxisk Report was it might be quite useful to set one doctor upon another..

    I mentioned before about being called in to the surgery, specifically to talk about Seroxat by a locum whose antennae went up went he saw that I had put on my introduction sheet to my new surgery “adverse reaction to Seroxat”, front page right at the top.

    I told him the complete story and I told him about Rxisk and he was fascinated. He had read David Healy’s books and as a much older doctor was prepared to listen to me with a completely objective eye.

    When I told him that a local psychiatrist had written a letter to the surgery after giving me Paroxetine with advice on what to do when I came off it and did not tell me and furthermore this same psychiatrist had not referred to this letter when I was an emergency admittance to his mental hospital and furthermore his boss, the Clinical Director had written to me telling me it was not routine procedure to check on medication in a hospital, he said “I don’t think that’s quite correct” and if I were you I would write to NHS ~Scotland to ask them if this is a correct procedure.

    I composed many letters to NHS Scotland, but, at the end of the day, I didn’t as the strength of the surgery was so magnetic and so forceful with their inaccurate deliberations of Stockholm ~Syndrome and lies about medication, I thought I would end up being totally up ended.

    I thought this because the threatening nature got so severe when I ended up with the private practice calling me from abroad.

    I felt hopelessly out of my depth.

    The complaints procedures are not straightforward on NHS Highland and although I have compiled a huge folder of incriminating letters, emails, threats, lies, it seemed to me I need a Named Person to complain to and there wasn’t one.

    The Clinical Director had cc’d Complaints Department, NHS Highland who he had personally spoken to about me and who had agreed with his final response.

    My case is fairly unique, I am not sure many have had the misfortune of all this heavy weight denial.

    How to mentally disfigure a patient who is already disfigured with Paroxetine?

    My point is get in there with your Rxisk Report.

    Things have changed since 2002 and beyond and I don’t think GPs or Psychiatrists today would make such acrimonious accusations and blatant bullying without expecting recourse.

    My Rxisk Report about Paroxetine was sent to Rxisk a while ago; I wondered how I access it now that there is no longer a log in?

    I would do things differently if this all happened today and I think we can all put on our thinking caps as to the different approaches now that Rxisk Reports are free.

    Rxisk needs to be universally accepted as the International Database by #Doctors as their first point of call and reference point.

    I think we can certainly use our Rxisk Reports in a myriad of ways..and there are definitely people out there who will take us seriously..

    Unfortunately, for me I came across a medical thug who sent me so many emails telling me it was “not in my best interests” to complain about his Scottish backfired on me..

    I think you can be assured “it is in your best interests” and just go for it..

  5. Forgive me if I now mention something that is already present on Rxisk – I don’t know that it’s there; there again I’m not even pretending that I’m up to speed with all that IS there!
    Might it be a good idea to include a section showing ‘ improvements in condition’ where patients HAVE been listened to? Patients, who are a little nervous about approaching with a Rxisk adverse reactions report, could then also take a report showing the improvements that others have reported once they’d been listened to and their concerns addressed by their doctor. It could well sway a few of the 8/10 docs who are open-minded!
    Being involved at that level at present (different, listening doc. = relaxed & improving patient) I plan to make a short leaflet of the patient’s ‘reduction journey’ and present a copy to the GPs and the CMHT once we are nearer to the journey’s end. I don’t know how it will be accepted but feel it’s my duty to do something to open closed eyes and ears to what is possible with an open mind! (They’ve had me insisting for years that Seroxat damage was the cause of many of their patient’s problems and that pushing more and more drugs into him were adding to the damage rather than improving the situation.) We are under a new, experimental GP service now, the Seroxat prescriber has retired, therefore I expect a slight interest there. I know for a fact that the Care co-ordinator at CMHT will be genuinely fascinated – I can only hope that the same may ring true of those higher up the ladder!

  6. Dear Dr Godlee

    Re: “Restoring Study 329: A randomised, controlled trial of the efficacy and harms of paroxetine and imipramine in the treatment of adolescent major depression”

    Bradford on May 4, 2016 at 1:33 am said:

    Recently, I had a Dr.’s appointment…. I brought a 3-page print-out of an article I found online, about “Study 329”. (Sorry I can’t recall exactly *which* article – maybe one from MIA? But anyway, it was VERY critical, and well-written.) I asked my Dr. if he’d heard of “Study 329”. He hadn’t. I gave him the article, and told him to educate himself. A few days later, I received a “Termination of Medical Care” email from the hospital. Basically, I was “fired” as a patient for speaking out on Study 329! I was on imipramine for a few years in my late teens, early 20’s….
    Thank-you, Dr. Jureidini. please understand that what you do sometimes has REAL effects on REAL people out here in limbo…..(I’m pretty sure you were NOT involved in the article I mentioned here….)…. What’s the latest with the Garth Daniels’ forced drugging & Electrocution Torture(“ect”) case?

    • Annie, I hope “Bradford” went straight back to the hospital with a copy of the email received as well as the “Study 329” copy and asked for an appointment to discuss both! Maybe the path from website to doctor needs to be trodden with care; as tempting as it may be to jump in with both feet, edging forward carefully beats getting stuck in the mud ( or whatever else is present) every time. In my mind, ‘edge forward’ is what Bradford must most certainly do rather than allow this type of bullying to go on without a confrontation.

    • Thanks to Annie for passing along Bradford’s comment from the Mad in America site. Being “fired” by your doctor is an increasingly common problem for U.S. patients. You don’t even have to be a troublemaker — a friend was fired by her OB-GYN simply for bringing in a helpful list of recommended tests for women like herself who face increased cancer risks due to prenatal DES exposure. Others are fired for payment problems, “noncompliance” with treatment recommendations, or simply for failure to get better.

      In a drive to cut costs, both private insurers and Medicare are increasingly looking to schemes that reward either “performance” or “outcomes.” (An ever-greater share of Medicare is being handed over for “management” to private insurers like Humana and United Healthcare.) As a result, doctors may face financial penalties for their patients’ failure to take meds, follow diets, or achieve target cholesterol or blood sugar goals.

      A recent article in the online doctors’ journal Medscape was titled “Why Should Your Noncompliance Harm My Income?” It’s a lulu:

      It noted that “even in nonpunitive P4P [pay-for-performance] programs, having a disproportionate number of noncompliant patients can make it hard to reach thresholds and obtain bonuses. For example, some California practices reportedly disenrolled patients whose poor health outcomes were dragging down their P4P scores.” The more medical practices are bought out by large healthcare groups (and they in turn are bought by hedge funds) the more of this we may see.

      • My word Johanna, I had no idea things were THAT bad in the US. There is a tendency in all of us (well, in me anyway!) to forget that, as bad as things can be here, it’s possibly much worse elsewhere. I wish we could fill all our British newspapers with facts such as you give us here, in order to wake us all up to the reality of what ‘healthcare’ may well be like here too before long if we let the present trend of privatising through the back door to continue. I must admit that the scenario you present is the way that our present government seems hell-bent to follow, not only in health but in education and other services that are, at present, ‘public services’. This, in the main of course, is because such systems will line the pockets of their ‘mates’ – and to hell with the rest of us and our needs as we don’t count for much since we cannot afford to pay for all our needs to be met. However, maybe the tide is slowly turning here – the government seems to be at odds with many different and unexpected groups lately. They are not finding it quite as easy as expected to get us to believe that they (the rich) know what’s best for the rest of us. Suddenly, we are beginning to stand up for ourselves – the more groups that react in this way, the stronger and more likely it is that others will follow too. I certainly hope so.

  7. Its not just patients who get ‘fired’ from the Register, it seems ‘doctors’ can also get ‘fired’…

    A doctor speaks up about Oxycodone with his laudable views…on this subject

    Calling the P.E.I. health system “30 years behind Europe and parts of Canada,” a prominent Charlottetown doctor shut down his practice Friday.

    Uh, huh..nice to see prominent doctors purchase surgeries in Scotland, depart for P.E.I. and then return to Scotland to pick up on Scottish patients…

    “They did offer to let me stay on a ‘normal’ family physician but:

    1. I’d have lost 90% of my staff.
    2. I’d have to give up 80% of my patients.
    3. I’d have to ‘dumb down’ the care we provide.
    4. I’d have lost my license to be a doctor in the UK (as the General Medical Council consider the PEI system of family practice to not be adequate). Or I’d have had to spent 8 weeks a year in the UK working to keep my modern skills and license.

    I just can’t face that option. I can’t sit here and give patients bad care for the next 20 years in a system that is going bankrupt when I know we could have done so much good here – better care for less money – if Health PEI had let us. It’s just too depressing.

    Pop. Pop, pop a Seroxat…

    • Thanks for the links Annie. I’ve just been reading the comments from some of his patients as well as his own comments and they remind me of our new family doctors’ service. Ours doesn’t seem to give you so much time with a doctor or with his ‘helpers’ but works in a similar way inasmuch as you only see a doctor when it’s absolutely necessary – in the main, your care rests with the nurses etc. I was very critical of the system ( a copy of an Inuit practice apparently) beforehand but have had to eat my words going by what I’ve seen so far. One of the old set of doctors, when explaining how the system was to work said ” They (Inuits) have a grave shortage of doctors. The system worked for them because some doctor cover is better than no doctor at all. That doesn’t mean it’ll work in North Wales”. This ‘shortage of doctors’ seems to apply to PEI too.
      So far, the surgery is fairly empty whenever I’ve dropped off or picked up repeat prescriptions, my son’s had more thorough and speedy care already than under the old system and his request (to a nurse) for a copy of test results to be faxed to his psychiatrist in time for his appointment with him, was granted and carried out efficiently.

  8. Oh boy – that’s a challenge. I’d be interested in the reply to Laurie’s query – should those of us who did change doctor’s practices precisely because we weren’t listened to, present the new one with the same information (plus a Rxisk report?) I guess I know the answer – yes! But, the problems outlined in the post and the comments are serious. Changing practices because you are sick of being patronised/not listened to/misunderstood/misrepresented – and then risking a re-run of all that again is a HUGE fear. Specially if you have ongoing problems and need medical input…personally I’ve trodden exceedingly lightly, although I did write (politely) to my new GP outlining my view of what was wrong. That was a big mistake I think. He has treated me warily ever since….and maintaining a polite relationship causes me to bust a gut. Fending off statins nearly killed me – and the most slack he was willing to cut was that I was one of a number of ‘strong willed patients’ who also wouldn’t take the things. Not ‘informed’, ‘capable of making my mind up’.. I should say that this man is pleasant, has a good manner and I’m sure is kind-hearted. Nonetheless….is fear of reprisals really Stockholm Syndrome, because I’ve yet to identify with the people who damaged me. Far from it.

    Here in the UK we have a massive problem in even getting to see our GPs. GPs are buckling, along with the NHS and maybe too tired/stressed/ to take the time required to really discuss our situations thoroughly and with mutual respect? Average appointment time is 10 minutes – more like 7, allowing for getting into the room and out again. It is possible to book a double one – or was – at the moment it mayn’t be, due to, as the recorded message at my surgery says, ‘unprecedented patient demand’.

    We can be ‘fired’ too – although the reasons have to be fairly convincing: threatening the staff, being generally aggressive. However, one change within an area is probably the most it’s safe to do – otherwise you’ll be seen as a ‘heartsick’ patient before you even see a doc – Freudian slip – ‘heartSINK’ patient, medic slang for awkward, non compliant, over demanding…

    Well, that’s all highly negative. I wish I could take up the gauntlet – I wish I was brave enough. But maybe having got all the reasons why not out of the way – I should? maybe we could, between us draw up a strategy for walking in with a Rxisk report? The idea of sending it first, to be read in advance is good – if the doc has time. But the instant reaction ‘Oh God, Dr Google strikes again’ is a biggie. Is there anything Rxisk can suggest as a way of ensuring the report is immediately recognised as solidly respectable/important. Has Rxisk ever ‘advertised’ its existence to medics in any way? Or – thinking on my feet here – how about approaching the practice manager? Or getting onto a patient participation group?

  9. Its all very ‘hush hush’ dealing with doctors..

    What they personally think rarely comes out in brief conversations and I was extremely lucky that Seroxat caused one doctor to think..Laurie’s question

    At the moment I seem to be surrounded with an avalanche of primarily women in their fifties on anti depressants. A woman I mentioned before has turned into a complete non stop drinker and her behaviour is not shall we say becoming in front of her little boy…she loses all judgement of what she should say in front of him and is quite aggressive….scary

    Another woman on her druthers has been given Venlafaxine and beta blockers for confidence loss. She has dropped the beta blockers privately but daren’t stop the ad.

    Our Caravan site restaurant manager is on anti depressants to manage stress and seems to be on the ball.

    Prior to Get out of Scotland man purchasing our surgery, the Indian doctor ran the doctoring and his wife the practice manager. She was completely unapproachable, in her Indian sari, and would have been the last person to talk to about anything.

    The new surgery had the same arrangement, the Indian doctor and his Indian wife was the practice manager. This doctor ran two village surgeries daily.

    When he retired we had locums for nearly three years which is where I met the one above.

    Unsuccessful in recruiting a GP for these idyllic villages, the practice is now run remotely.

    Half an hour away is a larger village cum town with a new hospital.

    The medical practice there now runs our two village practices with one out of six doctors travelling half an hour to visit.

    It is also appointment only when it used to be walk in and sit and chat.

    I guess its pot luck which of six doctors you will get…..I don’t know as I have yet to go

    I don’t do meds on principal and I don’t do doctors but from what I gather everyone mostly seems happy with the degree of professionalism from Scottish doctors, not to say, that handing out a d and other stuff is still on their agenda..

    I have to navigate these people on a ds and so what I do is talk to them quite a lot as they are currently on my radar. I am going to make an extra effort with the sweety on Venlafaxine as she does currently not have a future at all and I shall take her out and she can talk and may be I can help steer her life in a more positive direction without addressing drugs as she has made it clear that she feels she needs the drugs, at the moment, as do the other two.

    We have all been there with these drugs and some of us have had ridiculous and terrifying experiences with the doctors and with the drugs.

    My foray venturing into this world was Stockholm Syndrome, with a big S, and I put that down to being manipulated in what can only be described as the lowest of the low..

    This wouldn’t happen today but I can use the experience in a local, friendly way and generally do my bit to may be to help someone else as at the time of my travails there was no one around to help me and that was a lesson I wouldn’t want anyone else to go through

    Living on my own I totally rely on the people I come across and I am a great listener and one of the things that I think is that people think they need doctors, but, actually, most of them don’t need doctors at all

    I don’t know how Rxisk is going to be the First Too, reference, but, I am sure David has lots of ideas on that score..

    Meanwhile, a prominent doctor has bought an idyllic cottage in the village we escaped to after we had been slaughtered. Needless, to say being an opportunist he made a bid for my new surgery…… He was rejected.

    In small places no one misses a trick..and my Secret Life of a Seroxat Swallower is something no one would guess by the way I promote myself..

    Every single surgery has posters and more posters on the risks of Cancer, Diabetes, Smoking, Vaccinations, etc., etc., which if you forgot your book you read.

    A Rxisk poster would look good for the patient to Go Too and mention to the doctor and the doctor might get off his prosaic backside and Go Too, too

    Also, why shouldn’t the patient read about Health Scare News on the Walls

    I suppose official hoops would have to be gone through and it would take a large financial investment, but, investment in Rxisk is what is on the agenda, so, if Alltrials and MIA raise thousands of pounds with cute Asks and Gets, I don’t see why Rxisk should not also go down that route to pay for it..Fundraising for Rxisk is something else we could do..

    The Sky’s the to what we can each/reach and do..if we are sufficiently motivated..and that’s a yes from me and a yes from

    Remember the girl who ran for Rxisk….with the T shirt

    The FD who helped me walked from Lands End to John O’Groats by himself and it took him 10 weeks…he was ‘finding himself’, loved it, but, he didn’t wear a T shirt and that was an opportunity lost…

    Instead of wearing Trespass why don’t we all wear least it’s a conversation starter..there are close to a K friends on the facebook page…that’s a lot of T shirts..(919)

  10. Carla, would you agree that, whichever way we look at this problem, there is probably fear on both sides? Our fear, as patients, is obvious to us simply because we are on that side of the fence and were brought up to ‘respect the doctor as he /she knows best’. If we could get to the bottom of a doctor’s feeling about the situation, might we not find a ‘fear’ there too? – a fear of the internet and its answer for all ills which has increased patients’ appointment needs is probably more real than we can perceive. A fear of making mistakes and causing damage to patients and to their own reputation must also weigh heavily. There are, probably, many other fears too which, added together, along with higher patient numbers cause exhaustion and ‘burnout’ in our doctors. Added to this will be the demands from above which requires them to dish out allsorts ( not the liquorice variety!) in a failed attempt to promote our wellbeing. Put like this , who would want to be a doctor?
    Thankfully, many still do join the profession; many do a wonderful job of putting our minds at rest when we have concerns about our health. The problem, as far as I can see, comes mainly when the messages that they get from the pharmaceutical companies and government contradict what we are telling them – THEY say medicate at all costs, WE say medications cause problems; THEY say large companies know best – these meds. are safe, WE say we know best – we are the ones taking them and they are damaging us.
    WE (or the ones we care for) DO KNOW THAT THE PHARMACEUTICAL DRUGS HAVE, AND STILL DO CAUSE UNTOLD PROBLEMS. The mystery, to me, is this – why on earth can doctors not believe that patients are the best judges in this matter? Why can they not figure out that ALL we want is to get better? Why can’t they admit, every now and again, that the medications suggested to them for patient use may cause damage to some of those very patients that they are trying to support? A little more willingness to listen, observe and be humble could well work in their favour. Surely, by the very nature of their qualifications, they know full well that they are dealing with toxic substances – why, therefore, the shocked looks when faced with the reality that ‘restricted poisoning’ can go either way (kill or cure) depending on the individual’s tolerance or dosage?
    I agree with you Carla that maybe it’s time for RxISK to speak out with a louder voice and come into the public domain in every possible way. After all, we all ‘Google’ our way through life (doctors included I bet) – so why can’t ‘Rxisking’ our way through ill-health become just as natural to us as patients and practitioners?

  11. Hi Mary,
    Thank you for thinking of me and including me in your dialogue ~ much appreciated : )
    You are very persuasive and have the ability to be oh so influential.
    You certainly have great leadership skills and I have no doubts that everyone would levitate towards your way of thinking.
    I agree that there is always going to be an element of fear between doctor and patient.
    However, when you remove that ‘thin veil’ that exists between doctor and patient, you will start to notice that doctors are vulnerable just like you and I.

    In every profession, you get good and bad.
    Just like you get good in bad in every race.

    I have many concerns.
    We understand that these medicines have an impact on the way we behave and how we see the world around us.
    What would happen if you found out your GP was on some form of antidepressant and it was impacting the way he/she treated his/her patient?
    You and I would be absolutely devastated, in complete shock or in total disbelief.
    This also has to be part of an open debate
    If we are wise, everyone will want to discuss the risks involved in ingesting medicines that alter the way we behave.
    If there is no acknowledgement of these issues, we are all being fooled by drug companies that are destroying so many lives.
    I know that there are some caring, genuine, sincere doctors out there and I am sure that many have sleepless nights worrying about the implications of the effects that some of these ‘so called safe’ medicines have on their patients.
    If by chance, one day, you and I, may get the opportunity to sit down with doctors and have an honest discussion about what is really going on.
    If a patient suddenly passes away and the patient was fine the day before the doctor visited them, there is always going to be an element of ‘suspicion’ racing through their mind.
    You and I know, Mary, that there is something sinister going on out there with these ‘so called safe’ medicines.
    Every time, I hear about the next celebrity who has passed away, my cogs are frantically churning because I am always thinking:
    ‘What if they ended up with a random flawed batch of benzo’s , pain killers or other medicine that killed them?
    I am so certain that this kind of unethical behaviour is carrying on within Drug companies and if Governments are pushing doctors to shove these medicines down people’s throats, then they too will also have to face their day of judgement.
    Many doctors, do the right thing.
    They check the patients’ medical history and know when they are overstepping
    their boundaries especially, if another drug is added to the equation.
    I speak on behalf of the vulnerable patient who does not know any better.
    I was once one of these patients.
    Adding one drug to another drug can be deleterious and mean the difference between life and death.
    I have no doubts that some medicines benefit people’s lives but WHY does there have to be this element of risk involved if BIG PHARMA is not playing their cards right.
    If there is no LAWS that oversees what they do:
    ‘How on earth can the people have any TRUST, FAITH or BELIEF in what they do?
    I too would be very afraid, if I was a doctor and tried to do the right thing by my patients all the time and then found out that my patient is either: maimed or suddenly passed away.
    It would stay on my conscience for the rest of my life. I wouldn’t practice western medicine anymore, not because of my ability to do what is right but because Big Pharma has blindfolded me with not divulging all the TRUTH about a particular medicine.
    Just thinking about it know sends a shiver up my spine because this is what all doctors are faced with.
    I do not feel sorry for those clinicians who save face and uphold their reputation at the patients expense.
    What kind of a clinician are you if you don’t advocate for your patient who has been harmed by a medicine which is ‘deemed safe?’
    Would a clinician leave his loved one in a lurch if a ‘so called safe medicine’ harmed or killed their loved one?’ ~ I don’t think so!
    Doctors and patients have to lobby Governments to put LAWS in place so that BIG PHARMA don’t have an element of unscrupulous behaviour when creating the next ‘so called safe’ medicine that goes down someone’s throat.
    Mary, I have seen some great doctors but BIG PHARMA screws up all the good work they do.
    Have you ever seen a grown up man cry? ~ I have and it brings me to tears knowing the cross that they have to bear.
    Some clinicians are well aware that this kind of ‘shemozzle’ is going on and they too are controlled by a body that does not know the difference between ‘moral or immoral’.
    Perhaps they do and they would prefer to stick their heads in the sand and deny that there is a BIG PROBLEM. It is better to be ignorant than face the issue at hand or else Big Pharma revenue would be at stake!
    I believe that doctors are starting to come around and see that their patients have a point.
    ‘What impacts us, impacts them, also!’
    We are all part of this problem.
    Give me that megaphone and I will grab Big Pharma by the jugular and make them accountable for all the unnecessary pain/suffering and deaths they have caused.
    So Mary, one day, if you or I ever never get that opportunity to do it, another brave soul will be strong enough to do it because you and I have left our mark behind.
    A trail of exposing their ‘dirty secrets’ which they thought no one would ever discover.

    • Wow Carla – we could do with you acting as spokesperson and arrange to meet with our local MPs to hammer this business out!
      I, like you, do believe that the tide is slowly turning – the general public is slowly finding out that all of us, actually, are allowed to speak our minds and that we do not have to accept everything that a government tells us as the truth. However, especially with mental health issues, it is so easy for ‘underlying causes’ to be blamed that many times the argument ends there.
      I really feel that it’s a shame that we, the patients, and our doctors couldn’t sit on the same side of the fence. If that were so, we would have a far better chance of persuading the government that Big Pharma’s hold on them and on our doctors is totally immoral.
      (have just noticed your other, shorter message – you ask what is it that we are afraid of). I don’t think we are afraid but, rather, frustrated with our own inability to convince others of such obvious truths. The day will come – don’t know where, don’t know when – but we must believe it will. Hope is all that will carry us through.

  12. Dear Mary,
    Thank you for challenging me.
    This has been one hell of a journey.
    Yes, I and many other brave souls, took a big risk by ingesting a ‘poison’ that is ‘deemed safe!’
    The next risk should not deter us from doing what is right.
    What are you and I afraid of???????

  13. It’s great to have people brainstorming here about how to move forward! One hopeful sign — a fair number of doctors do seem to be rebelling. More & more UK GPs are speaking up against the tyranny of “guidelines” that push statins and other allegedly preventive drugs. This speech by Dr. Aseem Malhotra — and a similar debate in which Dr. Dermot Ryan took up the same cause — have been greeted with raucous cheers:

    I think doctors in the UK have *exponentially* more freedom of speech, and inclination to use it, than doctors here in the Land of the Free (Markets). Our doctors have no unions and close to no due-process if they speak up against corporate interests — and more and more they are direct employees of corporate interests. (I don’t know what a “practice manager” is in the UK, but over here it’s a financial bean counter devoted to maximizing the Practice’s income — and the very figure a dissident doctor would fear most.) Plus which, at the specialist level anyway, many are small capitalists themselves, who profit directly from invasive procedures and own shares in labs and radiology centers.

    But even in the US there are signs of rebellion, on a smaller scale. It may be that like most of us, doctors are braver in groups than one by one … and are at their most defensive and vulnerable when approached “on the job.” It’s a shame that what with the growing class segregation of big US cities, most of us never chat with an actual doctor at the local coffee shop or the kids’ soccer practice. Their kids and our kids don’t mix. Maybe it’s a bit better in small towns.

    The best chances I’ve had to talk frankly with doctors have been at a recent “Right Care” conference against overtreatment, and pro-single-payer events. Maybe we should look for opportunities like that, even if the sponsoring groups and their platforms are not all we’d hope for. And in England, of course, there’s always the picket line …

    • Johanna – a practice manager is in overall charge of running the surgery – the bean counting is done by the practice accountant…all basically down to the fact that GP practices are partnerships, independent businesses whose expertise is ‘bought’ by the government via the Department of Health (only of course it’s now much more complex ). This set up was a compromise by Nye Bevan who established the NHS – allowing GPs to remain independent professional practitioners, rather than salaried government employees – (the NHS was not welcomed by all doctors). However, sigh, back in 2003 a ‘payment-by-results’ scheme was introduced. GPs could add to their income through a bonus scheme: if they could dig out the required number of diabetics – they got points and points meant money. Which is why sometimes I lack patience with GPs bemoaning their lot – if they hadn’t been so busy increasing their pay by screening people and finding chronic conditions that patients didn’t know they’d got, they might have more time for ill people. Strangely, the only group of people who have never been screened properly for physical problems are the mentally ill….

  14. I’ve done a fair amount of reporting in the past year, with and without the Rxisk report. No matter how diplomatic my intentions, I always found myself turning a bit whiny when they got dismissive. I didn’t like that yet had a hard time avoiding it. (Felt powerless all the way around).

    I have so much more to say on the subject of Rxisk reporting, an overwhelming amount. But what I want to say here is that recently I found myself in the same whiny mode in one of my grief groups and realized that this was due to something unhealed in me. Once I completed the work on that particular trauma/loss, I lost the powerless I’d felt in relation to the situation/person I was processing. A lot of things in my life then shifted, including long-standing patterns of relating that didn’t serve me well. So this makes me curious about whether Rxisk reporting could go differently for a person after taking the time to work through the MASSIVE AMOUNT OF GRIEF tied to their pharmaceutical fiasco. I intend to do this and report back. (I’m pretty much a walking commercial for both Rxisk and the Grief Recovery Institute now, ha).

    Anyway, I can relate to commenters above who are wary of “going there” with doctors. Mary’s suggestions, I think, are good ones – having a strategy, sending the Rxisk report in advance, taking a buddy, etc. Fear probably has everything to do with why doctors refuse to listen but it’s still important that they hear from us.

  15. Johanna, don’t forget that ‘UK’ and ‘England’ are not synonymous! Wales is part of the UK but part of England we certainly ARE NOT! You can really upset us if you refer to us as part of ‘England’! (Don’t take me too seriously). Healthcare, like education and a few other things, in Wales is governed by the Welsh Assembly (mini government). I doubt if we, or our assembly, ever gets a mention across the pond – it is fairly rare for it to be mentioned here on the main UK news.
    Anyway, a separate entity we are, but a much smaller one than England and therefore our voices are never quite as loud. It is true that hospital doctors in England are standing firm on their rights to fairness against the present government. GPs are somewhat quieter I think.
    Here, in Wales, our main problem seems to be lack of GPs – and a lack of acknowledgement by the Assembly of the extent of that problem. Locally, in an area roughly 20 miles from the English border ( no wonder we are so sensitive about where we belong!), problems have peaked in the last few months, resulting in the new system we now have which I have described here before.
    The existing surgeries closed, mainly, due to an inability to attract new doctors.
    Your point about the education of your children and doctors’ children strikes a chord. It was said, at the time when recruitment was failing, that one of the main reasons given by doctors for NOT coming to Wales was lack of excellent schooling for their children. I am not sure that this was anything short of an excuse – since, under the new system, they’ve managed to find 9 doctors willing to chance it on this side of the border!
    I feel that there is a blame culture which tends to override common sense. Patients blame doctors who, in turn, blame government; government blames doctors who blame patients – and on it goes without anyone seeming to stop and realise that TOGETHER we could attack big business and make things fairer all round.

  16. Thanks for the clarifications, Mary! I’m limited to studying the situation on the Internet, but it seems to me you’re right: there are more signs of “doctor rebellion” in England than in Scotland and Wales. Not only the junior doctors’ strike, but also signs that GPs are at least willing to verbally denounce their increasing subordination to “guidelines.” A proposal last year to pay bonuses to GPs for every new dementia diagnosis they make provoked an uproar. As it should!

    The reason, I think, is that things are worse in England, especially since the passage of the Health and Social Care Act of 2012. Privatization, cutbacks and and a general atmosphere of “crisis” are bad enough there that many folks have concluded that England no longer has an NHS. The desire to “save our NHS” seems to have been a big factor motivating people in Scotland to vote for independence. Still, the two systems are tied together in many ways, I guess. And “Whitehall” seems to determine a lot about the budget the Welsh mini-government has to spend.

    An interesting episode: Bernie Cuthel, one of the new NHS administrators in North Wales, arrived in 2014 from Liverpool where she was “CEO” of the local Trust. She’s now at the center of a really damning report on the Liverpool NHS Disaster during her time there — brutal staffing cutbacks and a real reign of terror among the staff. The main cause? A frantic campaign to achieve “Foundation Trust” status by meeting certain goals that seem to be largely financial. This is part of the whole fragmented, marketized, “competitive” vision for the NHS being pushed in England. It was supposed to improve “quality” but seems to be leading to more fraud, waste and abuse than ever before.

    Would love to know your thoughts on the Bernie C. Story, or any of the rest of this..

  17. Johanna, you asked for my thoughts on the Bernie Cuthel story. It is the type of ‘story’ that seems quite usual over here. One of the top men that she has replaced has been welcomed with open arms in the north of England! Prior to the mess he was partly responsible for here, he made a similar mess in mid Wales. Now he’s left north Wales, we are beginning to see exactly what had gone on under the leadership of the old team. Police investigations are now spoken about so watch this space!
    Seems to me that the way to get ahead around here is to make sure that you fully prove, once or twice, that you’ve absolutely no idea how to successfully carry out the requirements of the post offered to you ……………… or could it depend on who’s backing you?

  18. A request for suggestions/ support. Following my husband’s highly pleasant surprise on going for a post cardiac surgery check at our surgery with a new doc, who agreed with his unease about the standard cocktail of meds (statin, ACE inhibitor and beta blocker) he’d been prescribed for the rest of his life I’ve made an appointment with her for the end of June (the earliest available..). So, I shall take a Rxisk report to show her.

    Best to focus on one thing?

    If so, what? I would like to discuss the diabetes and hyperlypidaemia as they are reasonably easily connected to the olanzapine. But, as Laurie says earlier, that means raising the matter of an old drug which I haven’t taken for 4 years.

    The thing that is really bothering me most though is some form of crippling arthritis in my hands for which I’ve been prescribed Zapain/co codamol. Doesn’t work but I’m sometimes driven to take it…I have no idea which of the multitude of drugs I’ve taken could have caused it. So could a Rxisk report help anyway?

    Any advice/ideas gratefully received by me, on making this a Rxisk report ‘test run’ and I can report back. It would be great to make the experiment as helpful as possible for Rxisk.

  19. Wow … it’s a great question Sally. Will be interesting to see if the doctor already agrees that olanzapine likely caused your diabetes and high cholesterol. I hope so! (This has become a “safe” thing to admit in recent years. Especially for non-psychiatrists, and especially now there are newer drugs being promoted as “safer” than bad old Zyprexa.) In that case I’d say no need for a RxISK Report on that.

    Maybe RxISK can help think through the arthritis though. Sorry to hear about that! Hand arthritis is pretty common in us Older Women of course, especially at the base of the thumb. But I gather you are talking about something much more serious. Maybe the best place to start is looking up the individual drugs you’ve had on RxISK to see which ones have any association with arthritis? That might suggest which ones to ask questions about. It might also be that a drug causes a condition like diabetes, and that condition leads to more problems. (One reason why recklessly promoting a drug that gives people diabetes is criminal.)

    Let us know how it goes!

  20. Thanks Johanna – a good suggestion – although I guess the problem of linking any arthralgia to a past drug still exists? And yes indeed – us old ‘uns might well be expected to have arthritis in the hands anyway…although I’m convinced that the excruciating flare-ups are connected to a buggered immune system.

    I’m still pondering the matter but as the appointment is in a couple of weeks – it would be good to decide on a way forward. Trying to clarify my own mind makes me think:

    The whole point of doing this is as a Rxisk report experiment – so, to a certain extent it doesn’t really matter which of a large number of annoying residual/legacy symptoms I pick. The important thing is sussing out her willingness to read the report, think about it – and her reaction.

    One possibility I thought of was linking it to the complex withdrawal research.

    This person is suffering from x/y/z
    The Rxisk report suggests that these symptoms/conditions are likely to have been caused by a vast amount of medication over many years
    Research is currently going on about why people like me get so buggered
    One idea is that a peripheral neuropathy has something to do with the calcium/sodium channels (as per the CW info)

    Personally I’d be quite willing to give a calcium channel blocker a go.

    However: I’d have to overcome the hump of the doc’s probably reluctance to prescribe something ‘off label’ (although they never seem to worry too much about the fact that olanzapine has never been licensed for depression alone), speculative and with unknown consequences….especially as my file is bulging with various complaints by me about inappropriate prescribing…

    And – I’m not at all sure that the way the Rxisk Report is set up makes this possible anyway??

    This idea is a long way from simple, I realise. In fact it’s almost as complex as complex withdrawal.

  21. Oh well, the appointment came and went, minus a Rxisk report because I couldn’t work out how to do it in the most useful way. Blood sugar up, now on metformin. Never mentioned previous drugs as that usually backfires on me. My mental illness record hangs round my neck like a millstone. I wish there was a way of carrying this whole Rxisk thing forward, specially complex withdrawal but blowed if I can see how. I can’t do it by myself.

  22. Johanna – I did act on your helpful suggestion re current drugs and arthritis via Rxisk’s database of side effects but there was no significant correlation. I dunno, everything here seems to gallop onto the next topic and great ideas get kind of lost in the rush. But thanks anyway.

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