The examples given in the Kidnapped series of posts are dramatic. They point to growing abuses in healthcare systems. The idea that in every way we are making more and more progress leads people to cut corners to bring the benefits of treatments they know will work to others.
Those whose lives have been affected will figure this is a pretty common occurrence. The rest of us will nod sympathetically but figure it can’t be that common because we have never come across it.
In fact we probably have encountered the problem and been so discomfited by it we have blanked it out. The most common form of medical kidnapping is not informal detention of the elderly or those with learning disabilities or incarceration of the mentally ill, it’s ordinary people being given a medication that goes wrong by that nice friendly primary care doctor or specialist. In this position, others will see you walking around, but they don’t see your tag – you are in a prison.
Nobody likes to rattle the bars to confirm their worst fears, and because we never confirmed those fears, some of us think nothing really happened. But it did. There have been thousands of reporters to RxISK who know about it the gulag in our midst, and of RxISK stories outlining the state of Near Invisibility that goes with it.
Rattling the bars would mean reporting back to your doctor that the treatment he has just put you on has caused a problem that he didn’t tell you about – it might be enduring sexual dysfunction on an antidepressant, memory problems on a statin, tendon pains on an antibiotic or any manner of problems on a drug like Lupron – increasingly used for children.
We don’t report back because we instinctively know that the doctor is likely to be hostile. She might not be but we don’t want to take a chance. We are feeling worse than before and if we needed a doctor before, we definitely need one now and antagonizing the one we have is not a great bet. If the doctor doesn’t spot the issue, we will tend to grin and endure it. If we have a chance to change doctors or are brave enough to stop a medicine we may have been told is necessary we will do that rather than raise the issue.
We may end up alienated from our families and friends and find we cannot talk to them as they are inclined to take the doctors side. We can feel them pull away from us. We are now ill. We may not have been ill to begin with, perhaps just at risk our doctor said of becoming ill. But now we are ill and also losers. Paradoxically, in this situation the one person we desperately want to trust is the person keeping us hostage – the doctor who put us on the medicine. This is not rational. But it is a very powerful feeling that is difficult to overcome. It goes by the name Stockholm Syndrome, but you have to feel it to begin to appreciate how deep rooted this feeling is.
This kidnapping is the reason for RxISK.
- RxISK offers you a way to check if there are other reports of your problem.
- It offers you a way to score your problem and work out if there is a likely link or not
- It offers you a report you can print and take to the doctor – leveling the playing field ever so slightly.
Our original idea was that you would do work for the doctor and bring a report to him/her that would get you better healthcare. S/he would react differently if faced with you bearing a report from an expert website rather than entering the office with one arm as long as the other. Better again, we thought s/he would be able to report also on the problem you were having – making for a unique body of adverse event reports.
Just over two years from starting up, we were getting close to the number of patient reported adverse event reports per year that FDA were getting – and getting much more internationally than FDA. This was/is/will be an extraordinary achievement.
Getting doctors to review the report and either endorse or modify it would we thought introduce a unique and powerful extra element. If several sets of patients and their doctors in good faith figure a particular treatment has caused a particular problem, then, while we might still have no idea how often this may be happening, it is almost certainly the case that the treatment can cause the problem regardless of what anyone else says.
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.
Your mission should you decide to accept it is to change this.
With the relaunch of RxISK reporting there is a new emphasis. We want you to take a risk on approaching your doctor – not just for your sake but on behalf of all of us.
Just contemplating taking a report can make many of us aware of the potential for a doctor to turn nasty and a significant number do turn nasty. But not all doctors are nasty.
Faced with you bearing a report saying your treatment has caused a problem that doesn’t feature in the books or the books all say the treatment can’t cause, doctors split three ways.
- One out of ten faced with this scenario listens and says this is interesting and is prepared to explore this with you rather than opt for the ghost-written, data-sequestered evidence. This is the doctor we all need.
- One out of ten will never believe you even if the evidence supports you – s/he shouldn’t be in clinical practice.
- Eight out of ten swim with the mainstream. They listen to the guidelines rather than you. But their allegiance to the guidelines is not absolute – with a little incentive they can start listening to you.
So we want you to take reports to doctors to:
- Get better care for yourself
- Generally report back on the kind of reception you get
- Change the culture of medicine by nominating your doctor as a listening doctor if s/he does listen. She doesn’t have to agree with you but she does need to engage in a manner that works for you – ideally by filing a RxISK report
We want to build maps of doctors and pharmacists and others who listen. We need your suggestions about how we might do this.