Five hundred years ago, Martin Luther nailed a set of theses to a Church door calling time on a scam. A scam that had the backing of the political and religious authorities of the day. When challenged his response was “Here I stand, I can do no other”.
Today is Reformation Day. The drama in Luther’s challenge lay in the perception that indulgences were just the tip of the iceberg – the Church had strayed and needed root and branch reform.
Editorial Note: This the first of 3 posts about the idea of a RxISK Map. It is an integral part of the RxISK Prize effort. These 3 posts link closely to the Trick or Treat posts on DavidHealy.org of which the first Vampire Medicines was posted yesterday.
One of the founding ideas of RxISK was that it made sense in the event of something going wrong on treatment to give people their own RxISK report, not quite to nail to their doctor’s door but in the hope this would help move a conversation forward.
The hunch was that having a record showing a problem had been recorded somewhere meant that, unless the doctor was asleep, s/he would be less likely to blow people off. This would level the playing field
But while people have filed thousands of reports, nobody jumped at the chance to get their doctor to file one too.
It seems that while lots of us like our doctor, and lots of us know doctors we like, and we figure most doctors are reasonable, even caring, people, a lot of us also sense many doctors will become nasty if we raise concerns with them.
In the difficulties we have with the system, two issues crop up regularly.
One is – if I say this drug is causing that problem for me, my child or my parent, and the system denies this is possible, how do I validate my perception?
In an effort to solve the validation issue people turn to brain scans or gene tests or blood tests. If I have a piece of paper that shows some abnormalities on some test maybe then they’ll believe me. This is seductive, but a mistake. It diverts from the main issue which is why exactly do you not believe me. Most test abnormalities show what we can live with rather than what’s causing us problems.
The second is related. My doctor is more powerful than I am. I need a politician, journalist or some one to back me up. But if the problem is a new one or one a pharmaceutical company doesn’t accept, then neither politicians nor journalists can help – the only one who can is your doctor – or perhaps a pharmacist.
There is no option but to man up – the way women have done recently with Sexual Abusers. It is never easy to get power to admit it has made a mistake. The tactics women and others have used to level the playing field are the ones needed here.
The term adverse event sounds anodyne. In fact adverse events are the third leading cause of death in Western hospitals and may be the leading cause of death and disability globally.
These events often tear families apart and leave the person affected as isolated as Robinson Crusoe was when he had an adverse sailing event.
Drug Wreck is a better term.
Speaking up about a Drug Wreck is a Tiananmen Square moment. This is the point where you are left looking down the barrel of a tank, wondering if the guy in the tank maybe even agrees with you but realizes his own survival depends on blowing you away. If he comes out of the tank and shakes hands, you both have a problem – where to go now.
Few of those who talk a good talk about horrible drug companies or escalating health costs or even the sanctity of human life are likely to walk the walk and support you at this point.
Just as with the clergy, a dose of political maturity will come over them.
Clinical Psychologists and Nurses see tons of people suffering the ill effects of psychotropic drugs but few raise these issues on behalf of their patient or support them in raising issues.
Campaigners elsewhere in healthcare talk about the need for us to modify our lifestyles – walk more, eat cleaner, or give up alcohol instead of always turning to medication. But ask them to support you if you have memory problems, fatigue or muscle pain on a statin in raising this with your doctor – and they vanish.
The Drug Wrecked are lepers. This makes hanging together and organizing a resistance difficult.
The common interests of the working class meant they hung together until a few decades ago. The common interests of the middle class made them even more successful at hanging together but even they may be losing their grip now.
Women have successfully hung together on certain issues as did African Americans in 1960s America but it has always been difficult to get people to move beyond skin color or the shape of genitals to stopping Wars or engaging with even deeper fault-lines in society like poverty or misfortune.
The Drug Wreck fault line is more primal than class, perhaps as primal as sex. It lies between the fortunate and the unfortunate.
Hanging together is where power comes from, as women have recently shown with Harvey Weinstein. But not even the unfortunate are inclined to hang with other unfortunates.
Stopping the Juggernaut
We’re asking you to stand in front of the tank and hand a report to your doctor and ask him/her to file a view with RxISK. S/he can agree or disagree with the link you figure is present but she must file a report. Disagreement would be like the tank driver getting out to talk to you – it shows an engagement, a human touch.
There are many doctors, nurses and pharmacists who got into healthcare to help lepers and many who still do. These doctors, nurses and pharmacists have in recent years quietly been shifted from medicine into a healthcare inc. which does not see drug wrecks as its business and which will do almost anything to prevent you being rescued if you are washed up on this shore.
It’s not just you therefore who will find it scary when you hand over a RxISK report. The doctor or nurse you hand it to may be just as petrified. (It may be easier for pharmacists).
We are interested in your account of what happens at moments like this. Email us. We can publish anonymous versions on RxISK if you send them.
The object of this exercise is not to terrify your doctor. Its a hunt for doctors who can still listen.
Your action may help a doctor, nurse or pharmacist, who wants to listen, find a way back to delivering Care rather than healthcare products. You make their position much stronger if you present a written report rather than just say something – although they may not realize it at first. You make it possible for them to demonstrate they are being patient-centered which is a value our new systems play slogan service to. Something you and a listening doctor can use to hoist them on their own petard.
There are many more doctors, nurses and even more pharmacists (who in some places can get paid to accept reports like a RxISK report from you) than there once were who will be polite if you hand them a RxISK report. Even though petrified they may give all the appearances of listening. But to qualify as listening, as we are using the word, they have to take a step beyond this and file a report on their view about a possible link.
The reason they have to file their own report and the difference it could make is the subject of the next RxISK map post….