We Have a Dream: Getting Engaged to a Doctor

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June 6, 2013 | 12 Comments

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  1. This is an important article and one I hope will be widely read by the medical profession. In 1996 I took a break from taking Prozac. At that stage I experienced a lessening of dystonic symptoms and rang my neurologist to say I thought Prozac was the cause of my movement issues, which I’d been experiencing since 2003, when I began taking SSRIs.
    The neurologist very soothingly asked me what else was going on in my life at the time. I told him I’d moved into a new home and had a border collie pup. He then went on to very kindly point out that the dystonia had improved because I was enjoying life. There was never any investigation into whether the SSRIs might actually be causing the dystonia.
    It was another 13 years, by which time I had degenerated to the point where the dystonia was generalised, I had developed dyskinesia, could not speak a coherent sentence and both Achilles tendons had been permanently damaged by repeated micro tearing due to muscle rigidity, before I did my own research and found that yes, the SSRI/SNRI meds were likely to be the cause of my issues. Despite the neurologist noting my phone call and suggestion of the potential cause in a letter to my GP and the local hospital, doctors continued to prescribe that form of medication for me. One noted, three weeks after I switched to Cipramil: “Her dystonia is worse, but she is doing well at work and walking three kilometres a day”. He then went on to note that I’d been admitted to ED that week with a racing, arrythmic heart. No one picked up on that original comment, or stopped to think about the direct correlation between the SSRIs/SNRIs and my worsening movement disorder. Every time a new one was introduced, I got worse within days. Over the years, I raised the possibility time and time again. Each time I was “patted on the head” and told I just had to get used to it. At one stage, I was referred to the local hospital to work with a physiotherapist, who said: “My job is to prepare you for life in a wheelchair.” I stayed long enough to learn to walk down stairs safely and then I fled, never to return. A wheelchair was not on the agenda and to this day, despite everything, I’ve avoided it. If I’d had lesser mental strength, was more prone to suggestibility, if I’d believed that that was where I was headed, I have no doubt I’d have succumbed to using one.
    What I’ve learned is this: Most doctors at the front line – the humble GPs – care a great deal about their patients and, on the whole, listen. There was no hint of SSRIs causing movement disorders in their prescriber “bible”, MIMS. MIMS is basically an advertising brochure. The hard core information is held on-line. In New Zealand’s case, the in-depth information can be found on the Medsafe website. It is the specialists, the psychiatrists, who are the most knowledgeable, yet most do not listen to, or act on, their patients’ concerns (especially to people with mental health disorders, including anxiety/depression). Sadly, predjudice is still rife, even in a world where these disorders are endemic and they occur across the full spectrum of society. I’ve learned that it is not wise to speak up for oneself, to challenge a specialist. When the diagnosis was finally made, my successive GPs (and I contacted all of them purely as an educative process in the hope what happened to me never happened to any other of their patients), were genuinely mortified and apologetic. Those poor folk simply didn’t realise – at the time – that these meds could cause movement disorders. They were busy and the information was not at hand. Bar one, the psychiatrists I’d seen and contacted to let them know – even though I was not confrontational – shut me down the moment I told them what I was calling about. They did not want to know. The one who did was of a younger generation of doctors, not at all patriarchal and willing to listen. He invited me to speak at peer review, warning me that as my condition was rare I would meet with disbelief and that everything I said might be challenged. I took along photos of my sons and granddaughter, some artwork I’d done and my QANTAS award for journalism. Before the meeting got underway, I made it clear I was not a number or file, I was a Mum of two, a grandmother, a would-be artist and a dedicated writer. An hour and a half later, I emerged from that room having been challenged, challenged and challenged again. But I had won them over. The general consensus was that I should never trial any drug with a serotonergic action again, that I was a genuine case of treatment injury. Within a fortnight, two more cases of SSRI-induced movement disorder were diagnosed within our region. The doctors in my local practice and hospital are more alert to potential problems with medication, even if those problems seem improbable or outlandish. They listen, they research.
    I guess what I’m saying is: “Doctors, please listen. Our lives, our careers, families, homes and general well-being are dependent on you listening.” And to people who have been injured or lost a loved one to SSRI-induced suicide: “Use your experiences to educate.”
    That doesn’t mean telling people to stop their meds, that they’re dangerous and they shouldn’t be on them. It means encouraging people to watch for changes of personality, or changes in the way their bodies move. If there are issues, get the patient back to their doctor and go along to support what they are saying. Ask for a double appointment, it costs more but gives you time to properly air your concerns and gives the doctor time to work things through in his or her head.
    Lastly, find a doctor who “works” for you, someone whose personality and professional ability/ethics make you comfortable. Last year, needing to find a new doc, I went to the local chemist and asked if he knew of a doctor who was pharmacologically savvy, open-minded, prepared to listen and had a well-entrenched sense of humour. He did and I made an appointment to check him out. After a quarter of an hour consult, we decided we could work together as doctor and patient.
    Many thousands of people take medications without incident, sadly some of us get permanently injured or die. These things are largely preventable if we act in time, if someone listens. Finding that someone just needs a bit of lateral thinking. A pharmacist is a good start when it comes to a GP. If it’s specialist care you’re after, ask your GP: “If you had a family member with this problem, who would you take them to?” You’ll inevitably get a good result.

  2. I have to say I was amazed when I discovered it isn’t an automatic thing for a doctor to enter into his records an adverse effect to a patients’ prescribed drug.
    Am I missing something? (I am not a medical professional -)
    When you are admitted to hospital, one of the questions always asked is ‘are you allergic to any drugs such as Penicillin etc.’
    If that needs to go on your medical record as an adverse effect then why can’t it be accepted that a record needs to be made for other drugs?
    I agree- with everything mentioned above- GPs need to treat Rxisk reports as a normal consideration in their everyday administrative procedures.

  3. Just a very quick comment- re. medical records.
    On admittance to hospital one of the questions the nursing staff always ask you is ‘are you allergic to any thing , like Penicillin, for example’
    If they can record this treatment related effect on your hospital records surely it should follow with every other drug ? This practice should be followed by GPs also.
    I have been amazed that doctors do not see it as normal administrative procedure to note down a possible adverse effect caused by a drug. I have always been under the impression they did until Rxisk.org was brought to my attention.
    As I have said previously, I feel Rxisk should become an automatic consideration by Doctors
    and they should accept reports from patients as a matter of course- as is mentioned above.

  4. As we all know, the huge lists of side effects, from many of the drugs in the Rxisk database, are inadequate for the patient or prescriber to respond to in the accompanying literature.

    The only possible Safety Net for the patient, and the blinkered doctor, is an additional insert in all medication packets.

    Headed, Rxisk.

    Rxisk – Safety Data

    Important information for all patients and prescribers.

    1. Drug Title
    2. Interaction with other drugs
    3. Rxisk factors and side effects
    4. Withdrawal protocols

    Do not see your doctor.
    See your Rxisk Datasheet.

    Solved; one simple solution.

    The engagement with the doctor, is then divorce.

    Put it in the box and the dream comes true for Rxisk and suddenly the suicides will stop, the aggression and violence with stop, the human race with not be dependant on drugs to live wholesome lives and life will go on as it did before without this thirty year history of strangulation by pharma….it can be done.

  5. Doctors/GPs collecting data in their surgeries re. treatment related adverse effects would be a fairly simple admin. operation. (I am aware their time is precious and quite often up to their eyes in admin work – I worked in the NHS along side Doctors and Nurses for a few years on a medical ward)
    Each individuals’ computer record could have a box to be ticked if a Rxisk report is completed –
    a doctor need not be committing himself to saying an adverse effect is definitely linked to a drug- just that there is a possibility- (GPs seemingly sensitive about labelling a drug as being the cause of a side effect although, as I pointed out previously -they don’t seem to worry about someone saying they are allergic to Penicillin)
    Quarterly or six monthly collation of their patients’ information for that period could be done via the computer – and printed off. (Spread sheets or programing)
    This data would then show what drugs had been reported, the type of side effect and any other information that would be considered significant.
    This data could then be sent to the appropriate body for research etc.
    This would also mean a patient has a surgery record of anything that has caused/is causing concern.
    Voila>

  6. In addition to the above – I would like to mention that I have found another person who happens to be a member of the National Rheumatoid Society- who was in fact, like myself, taken off Enbrel following a psychotic episode and placed on another drug-
    It is highly unlikely that this will ever be recorded or reported other than through her own GP and consultant- whereas if the system I mentioned above or something similar was in place at her Doctors’ surgery- both my own episode and hers would be shown in a National Data Base-
    Doctors really need to be logging into Rxisk- wake up call please.

  7. Annie, Gill, the points you make are valid. I only recently discovered that despite reporting my own rare reaction to SSRI/SNRI meds to the Centre for Adverse Reactions Monitoring, no one had recorded it. It’s only since I presented CARM with my RxISK report and that of a specialist that I now have a CARM file number as proof that my case has been accepted as genuine. I agree that we need accurate consumer information in every packet of medication. But here in New Zealand, virtually no medication comes with a data sheet. However, you can ask the pharmacist to print one – important if a patient is prescribed a medication they haven’t used before.
    My notes at hospital and GP level are clearly marked: “Adverse reaction to SSRI medication/ Serotonin syndrome, tardive dyskinesia, tardive dystonia.” Nonetheless, it’s vital that patients and their families remain vigilant. My sister experiences anaphylaxis, a potentially fatal reaction to suxamethonium, which is given as part of general anaesthesia. Two years ago, she developed a twisted bowel as the result of an appendectomy gone wrong and required urgent surgery. We had spent the hours leading up to her going to theatre recounting, reiterating to nurses and doctors alike that she must not be given this drug. It was written in her notes, which were red stickered as a warning. I don’t know what made me go with her as far as the ante room outside theatre that night, maybe little more than thinking that, as she was on morphine, she might not be able to speak for herself. A few minutes after arriving, the theatre registrar came out, opened Nick’s file and sad: “You don’t have any allergies do you?” I was aghast. I couldn’t believe it. I told her about Nicky’s reaction and, to her credit, the registrar immediately ordered that all sux be removed from the theatre in case it was administered by mistake. It was only when she closed the file and placed it on the bed that I realised what had happened. There were two files there and one was not Nick’s. We too, need to educate ourselves and assume responsibility for our health. Mistakes happen.

  8. Re. medical records -If someone has actually been suicidal and come out of it- one would hope there is some sort of rehabilitation programme in place to help people back into employment eventually- and they are not left dangling for cats to play with?

  9. Hello Lindy – ( sorry -I forwarded my last comment before your comments appeared above)
    I agree with you completely, comprehension of medical records is always open to human error as in your own potentially highly charged situation above- and we all need to be able to challenge and sometimes question what is being done. (Unfortunately-Some people will never be able to do this depending on their own personal circumstances)
    With regards to ‘Patient Engagement’ and ‘Doctors being afraid of acknowledging a drug’s possible adverse effect’-
    their order of consideration should be ,the patient first and foremost, and they shouldn’t be worrying about what drug companies and regulators are thinking.
    With regards to a Doctor’s concern that other Doctors may disagree with their recording a possible adverse effect of a drug and what they would think about them- if there was a system in place like I mentioned above- it would give a National overview of what was happening with patients and drugs, matching up at surgery to surgery level.
    (Hail Rxisk Reports)
    A Doctor would only be handing over the fact that there have been possible adverse effects-
    with his own patients-stating facts and he would never have to converse with other Doctors about them if he didn’t want to. A lot of valuable data would not be lost and at least the poor patient would have something on record.
    It seems strange to me that my hospital record could flag up an adverse reaction to a drug ,(this in turn could save my life)- yet my own GP may never acknowledge it at all?
    (PS – I am going to try to make sure both my records are up to date- as you have Lindy)

    • Gill, I obviously don’t know where in the world you are, but if you’re in the UK my understanding is that patients can log an adverse event under their own steam. I think it’s a Yellow Card?
      You’re right when you say that one doctor may not support the views of another when it comes to adverse events. It comes down to matters of opinion and whether the doctors you have seen are up-to-date with their pharmacology. Equally, as mentioned in my rather lengthy initial response, many are left in the dark until the post-marketing data is released by Big Pharma and even then it takes time for the message to get through, unless the MHRA or FDA distributes a “Dear Doctor” letter to all prescribers highlighting new and more serious adverse events.
      Ihas taken a great deal of fight to get my case acknowledged. The primary reason for that was that I had reacted to a 17-year succession of SSRI antidepressants. At the time I was diagnosed, Pfizer Wyeth had not released the post-marketing data on Effexor-XR as a cause of movement disorders. It took another year for that to emerge and be accepted. Only then was my case deemed solid by our Accident Compensation Corporation.
      I’m a little puzzled. I would have thought you would have a unique patient number linked to a nationwide computer network recording your GP and hospital notes. Having said that, I don’t think we’ve got quite that far in NZ.

  10. Hi Lindy- yes I guess I am not sure where in the world I am sometimes either! (lol)
    I am resident in the UK and am aware of the yellow card and I have reported my own adverse event to Rxisk.
    We do have a unique patient number per person- but hospital and GP records don’t necessarily match up .
    I think the point I was trying to make is – at present the majority of patients only tell their Doctors/ Consultants about adverse events and it doesn’t appear to go any further than that..
    If that Doctor doesn’t make a note of it on their record, the information is lost and the patient hasn’t had it acknowledged. Symptoms may be treated but they haven’t been linked to the drug the patient is experiencing problems with. (Unless the patient turns up with a Rxisk report or Yellow Card and I suspect 9 times out of ten they don’t))
    As far as I am aware, there is no way at present for data to be collected from Surgeries/consultants re. adverse events. It is not an automatic thing for a Doctor to consider reporting an adverse event linked to a drug, There could be two people in Scotland and three people down in Cornwall who have all experienced the same adverse event on the same drug and n’er the twain shall meet and no one will ever know about them, because they did not use Rxisk / yellow card.
    If it was common practice for a Doctor to acknowledge a patients’ adverse event and record it administratively then handing it to a National Data Bank- it would help greatly in the recovery of the patient (personal morale) and would also provide valuable statistics as to what could be happening with certain drugs.
    I guess if every Doctor could agree to asking a patient to complete a Rxisk report it would make life simpler?
    Nothing exists like Rxisk – but if Doctors or their patients don’t use it, a lot of valuable information is lost and it just remains within the confines of a patient/doctor conversation.
    (I think a lot of the anger that builds up in people after there adverse event is due to feeling they haven’t been believed when they say a drug has done something obnoxious to them.)
    Thank you Lindy-hope you are having more sunshine than we are in NZ.
    Rock ‘n’ Roll Rxisk>>.

    • Hi Gill, Sadly, it is FREEZING. I have family in the UK, so I know you’ve been cold and short on sunshine. New Zealand (especially the South Island) is awash with rain. RxISK needs legs, for all GPs to know about it. You’re right in that GPS often don’t report because they’re simply too busy. I hope that David and co have a database of all GPs that they can deploy to distribute information/encourage GPs to get patients to report adverse and other, more positive events.

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