Editorial Note: This is the third in a RxISK Map series of posts – See Reformation Day and Here We Stand. These link closely to the RxISK Prize. There are two aspects to finding a cure for an adverse event. One is understanding the biology. The other is getting it established that the effect happens. The Prize aims at the biology. The RxISK Map, now live, aims at establishing what is happening.
Over the last few weeks as this series of posts has taken shape there has been a lot of back and forth on the best way to frame the material, which is central to what RxISK is about.
From the start, some of us have worried that RxISK was too focused on harms. That it would scare not just doctors away but also patients. Could there not be more good news stories, more positive vibes. Perhaps a focus on safety rather than harms.
On the other side has been a sense there needs to be something RxISK stands for beyond goodwill and positive vibes. Harms crop up again and again as the key issue no one wants to talk about.
But nobody moves forward on a negative.
Behind all the harms, there are two guiding stars RxISK has tried to follow. One is that you are the expert on what is happening to you when it comes to the effects of a drug you have taken.
The other is that the best medicine is Relationship Based – See Raiders of the Lost Drug Wreck.
Harms seem to bring a violent underside to healthcare into the frame. Lots of us feel our doctors won’t welcome hearing about harms. Nurses, pharmacists, clinical psychologists also offer hair-raising accounts of being bawled at by doctors for raising something to do with harms.
Doctors as well have their own stories of being dressed down by bosses if they talk about harms. They feel they might be at risk of losing their jobs if they raise harms.
There probably is something to all this. The climate of healthcare is getting more toxic. But there is probably a reverse golf element too.
For anyone like me who has occasionally swung a golf club, getting one good contact in a round is the high that might bring me back for more. I forget the other 99 (if I’m lucky). Just the opposite seems to be at work in healthcare. Most of the people in the system are decent and willing to listen but news of one idiot manager sacking someone for doing their job chills everything.
But there is no process that can’t be turned against itself.
Doctors, nurses, clinical psychologists and pharmacists need to get clever. Our services are committed to being patient centered. Waving a RxISK report in a manager’s face, with its embedded algorithms, evidence of the economic costs at stake, and other elements, is visible evidence we are doing our job. It should be ammunition in any shoot-out.
I don’t ask for your understanding just for your recognition of me in you and the enemy time in us all. Lines from Tennessee Williams Cat on a Hot tin Roof.
In healthcare, the volume of paperwork has been growing to such an extent that even someone committed to accepting and managing harms might find it difficult to find the time to do any additional paperwork.
When we began. the idea was to get doctors or others to fill a full RxISK report – this takes at least 10 minutes. It was a non-starter. We now have this trimmed down so your pharmacist or doctor, clinical psychologist or nurse has very little to do.
Pretty well everyone linked to RxISK gets contacted regularly asking whether we know anyone in the caller’s area (New York, Melbourne, London) who is sensitive to the side effects of medication. We never do. The problem is while we all know great colleagues, predicting what these professionals might do faced with an adverse event, be they doctors, psychologists, nurses or pharmacists, is difficult.
The only way to get it right is to build a Map or a List of professionals in each area who…. who what?
At one point the thinking was to have a Map of Professionals who Listen. But unless listening means being willing to fill an adverse event form, apparent listening might be just a good set of social skills. And it’s a bit twentieth century.
A better bet seems to be a Map of Professionals committed to a Relationship Based Medicine. This means being aware that all medicines are poisons and the best results are likely to happen when both the prescriber and taker are aware of that and the relationship allows the taker to sketch out what the effects of poisoning have been. Non-prescribers can play a part here in helping this conversation to happen.
Relationship Based Medicine means that the relationship is good enough that I can raise a harm and I count enough for the prescriber or someone in healthcare to file a report on what I tell them. Lots of people are practising it as is. The rest of us need to know how to find them.
Like any nurturing relationship it’s about our zones of proximal development where each party holds open a door so the other can become aware of new things and integrate them.
The importance of filing a report with names on them is they transform what I say from hearsay into fact. If enough combinations of people with a problem and professionals, who can check through their history for other factors and question them about possible explanations, link a treatment to an event, this will be impossible for regulators and companies and medicine to ignore.
We encourage everyone filling in adverse event reports to tick the box which allows us to forward their report to their regulator and/or FDA. What will be new for FDA and the medical establishment will be patient data backed up by professional reports.
This is something for a professional to have “fun” with.
We’re in a dark era for professionalism. Managers seem to think everything will be fine if professionals just keep to the Guidelines. And they have no difficulty with the idea of playing professional groups off against each other to get the cheapest prescribers who will keep to guidelines.
In the near future we will have robots who can learn. With a little leeway in terms of killing and disabling a few patients to begin with, these robots will almost certainly keep more patients alive than most medics. The first thing the robot will learn is to pay no heed to guidelines, and the second will be to assume that for the most part what patients say about the effects of treatment is likely correct.
The only livelihoods left in prescribing will be for those of us who can outdo a robot and the only way to do this will be by being able to pick up nuances and non-verbals the robot can’t reach.
There is another reason to tune in to the unwanted effects of treatment. At present most professionals struggle under the burden of hundreds of patients. This could so easily be transformed into the support of hundreds of researchers. Motivation is worth at least as much as expertise. Harness this and going to work could be fun rather than a worry.
Treatment induced death and disability is now the greatest source of death and disability on the planet.
We have a right to have our healthcare professionals take stock of this situation and prevent us being added to a list of the maimed and dead. We can help by bringing them reports of the disabilities treatment seems to have caused, enabling them to intervene at the earliest possible opportunity. If they don’t play ball we need to work around them by finding someone who will – another doctor, pharmacist, psychologist or nurse.
From 1800 to 1900, doctors were a revolutionary class even manning barricades.
Bringing a report is not asking anyone to man a barricade but it is a revolution aimed at restoring decency.
And it’s a form of globalization that allows people everywhere to work together.
It would be great to see the Rxisk map with a growing number of doctors who offer relationship based medicine in the way we see the map for Rxisk Prize donations.
In my attempts to get a doctor onto the map, which I guess I’ve often confused with trying to influence someone prone to not hearing, I have found myself having distressing emotional reactions to doctors who are staunchly committed to the status quo. Out of a desire to never feel that powerless again, I somewhat abandoned the idea, at least until I could get my bearings. (Very similar to the feelings expressed by Uma Thurman when she speaks about Harvey Weinstein https://www.youtube.com/watch?v=RkraTK7-Rew ).
I guess a good point can be made for simply stepping over the mess to find the professionals who care enough to put themselves on the line. I may know one (in functional medicine) who considers it a miracle that she’s even allowed to practice where she is within the current system. I don’t know if this means her higher ups would negatively influence a decision to back up her patient but we’re about to find out.
If you want to follow my Run Against Castration updates in support of the Rxisk Prize
you can here: Twitter https://twitter.com/alan_johnson555 Facebook https://www.facebook.com/runagainstcastration Website http://runagainstcastration.wordpress.com
You can help raise awareness by sharing, I am posting my runs. This is probably a good one to share
I haven’t added the campaign photo and landing video yet, it’s coming…
Have done as you suggested Daryl …with great respect for what you are doing. All Best wishes for your Anti Castration run .
A few comments from Tom Poole via Twitter:
Based on my experience of 26 years: The best approach is giving a patient support and skills so that in time they can better manage their own minds. Depending on diagnosis, drugs often have limited value. Sometimes important. Not always. More of a problem for me. Better without.
Re: “You are the expert on what is happening to you when it comes to the effects of a drug …”
For some conditions. You may not be the best judge of the efficacy of powerful drugs which may or may not be helping. Close supervision by trusted support staff does have value – IF they know their game and aren’t just using you as a guinea pig in their clinical trial.
I like your reference to ‘close supervision by trusted support staff’ being of value. I couldn’t agree more but, unfortunately, I think the experience of the majority of us brings us to the opposite conclusion – that being, that ‘the lack of supervision by trusted support staff is detrimental to a patient’s mental health’. Lack of staff = lack of support; lack of time = poor support; support staff lack of access to their superiors = lack of patient confidence in the system and doctors’ lack of taking problems seriously = unnecessary death. In this vicious circle, can we see any way out? I suggest that we can. We – the family, carers and friends of patients can, if viewed wisely, be a great asset to tackling this problem. We KNOW the patient almost as well as the patient knows him/herself. We SEE what is happening on a daily basis. We ASSESS the needs according to what we see. We can, independently, record the progress or further lack of such without the emotional burden that the patient may feel. Surely, when support staff are short of time, doctors are dependent on their support staff’s view of matters and only available to their staff in crisis, the availability of information from a third party should be welcomed?
The only ‘doctor’ that I have come across in the last 15 years who seems to enjoy his work and to have a real interest in his patient is David. Appointments are given (not often – but in a regular pattern which the patient understands) and kept, however the patient is coping at that time. There is no pressure of doctor over patient – it is a friendly chat about how things are going and where THE PATIENT, not the doctor, sees the next hurdle may be, which is then discussed and carried out ACCORDING TO PATIENT’S timetable. Relevant, additional comments from family/ carer/ friend are accepted as part of the whole picture.This is truly ‘Relationship Based Medicine’ in my view. It is so simple in its execution, so refreshingly different and such a relaxing experience that I feel it would be beneficial for many other doctors to take this path in order for their own health to be taken care of. You’ve given us your recent ‘You tube’ videos David – maybe it’s time for a tutorial for other doctors along the same lines. I’m sure I know of a very willing participating patient! If only it were that simple to get doctors to listen and accept that there is an easier way for all to prosper.
A doctor onto the map ..
Husband|Father|Ahmadi Muslim|GP ST3|Budding #FunctionalMedicine Doctor|Graduate AFMCP 2017 #Nutrition #LCHF #JERF #Peace #Languages #Religion. RT ≠ Endorsement
Mashhood Syed Retweeted
Data Based Medicine @RxISK Oct 9
People w/other disabilities can get counseling on sex & relationships. What can we tell folks with drug-induced sexual dysfunction? https://rxisk.org/rxisk-prize-relationships/ … #PSSD
Mashhood Syed Retweeted
Data Based Medicine @RxISK Oct 5
We’re trying to reach huge Pharma cos about RxISK Prize for #PSSD cure. Funny thing: they can be awful hard to reach https://rxisk.org/rxisk-prize-no-nos/ …
Critical Psychiatry Blogspot
For those who have not come across it yet David Healy academic and clinical professor of psychiatry and pharmacology runs an open access web site where he raises serious concerns about the prescribing of SSRs. It is open to responses, many have highlighted the serious adverse effects of taking SSRs. See under David Healy blogs.
Many users and survivors have realised that anti depressants and ant psychotic drugs were a cause of loss of sexual feeling and infertility. And suspected that that was a welcomed effect by those prescribing them – it would lead of course to fewer children being born to people with mental health problems/illnesses. It can hardly be disputed that the side effects of the ‘newer’ SSRs are causing massive distress because of the long term loss of sexual feelings and therefore an important part of loving relationships. Rxisk (see website on David Healy Blogs) is setting up a novel approach to investigate what is happening to cause these serious sometimes irreversible debilitating effects .As there is no conventional research funding the project needs funds – there is a prize for anybody who comes up with a workable solution. Donations from anybody and of any amount are desperately needed as a few dedicated individuals just cannot afford to fund the project. Even if no donation is made it is vital that people do access the warnings about SSRs and make their decisions.
Just to add I have no self interests – am only interested in the ethical and humane treatment of individuals
Spenden für Preisgeld einer PSSD-Heilung!
Beitragvon synthiefreak » Samstag, 30.09.17, 2:11
Wie vielleicht einige Leute von euch wissen ist PSSD eines der schlimmsten Absetzsymptome der Welt und es gibt immernoch keine Klarheit.
Nun hat Dr. David Healy (Betreiber von “rxisk”) einen Spendentopf auf seiner Homepage gestartet, welcher 100.000 $ erreichen soll, für denjenigen der eine eindeutig Behandlung bzw. Heilung von PSSD findet.
Nur wenn jeder von uns PSSD-Patienten oder anderen Menschen die uns helfen wollen sich beteiligt können wir das Ziel erreichen.
Hier der Link:
Bitte seht das als eine Chance!
Liebe Grüße, synthiefreak
Thanks for passing on the critical psychiatry blog Annie Hadn’t got round to passing it on myself (I am ‘cobweb’ it was an old pseudo-name I haven’t bothered to change). Critical psychiatry blog has been nominated in the best 50 psychiatric blogs so any mention of Rxisk on the site gets a lot of readers .Duncan Double psychiatrist runs the open blog.
There is an article well worth reading in thebmj this week ‘campaigners vow to fight on after losing fight to prove hormone treatments caused birth defects for children damaged by hormone treatments in 60/70’s’. Have written to their ‘Association for Children Damaged by Hormone Pregnancy Test ‘as there are so many similarities in what they have come up against – maybe some tips can be shared betee Rxisk and the Assoc. e mail marielyon@virginmedia,com
My 28 yr daughter lost her life in a psychiatric facility. I wish someone could help me understand.
I am so sorry Kelly.
Kelly, our thoughts are with you and your family. Nothing that we say can heal your hurt – all that we can offer is that, should you wish to share your worries with us, you will find us a very welcoming, understanding and supportive group.
Most of us have suffered a ‘loss’ – for some, like you, it is the loss of a life. For others, like me, it is the loss of part of a son – a part that is now slowly returning after 15 years on psychiatric medications which hindered, rather than supported, his journey back to life as it used to be. Yet another group here let us know how things have been first hand – they comment on their own suffering and that’s tough for sure.
Since my ‘loss’ is nowhere as great as your loss, it is hard for me to imagine what you are going through right now, but there are others here who know EXACTLY how you are suffering. Please keep your comments coming.
Terribly sad to hear that Kelly – love from susanne
This comment sits uncomfortably here, after Kelly’s sad sad comment – it’s helpful to be reminded of the dreadful human cost of medication misuse and I’m so sorry. Really sorry.
Seems like a return to a ‘harm v harm’ model in medicine can only be good? It’s more honest – acknowledges the fact that medics use a harm to treat a harm; medication or surgery. It would need a mega shift in how we think about prescription drugs. I wonder how many people think of antibiotics or blood thinners as damaging – despite the fact that both can make you feel crap. And you can’t see the harm that’s going on in your liver or glucose levels. So, it’s very easy for a prescribing medic to simply ignore the topic. Anyone who’s had a major operation is all too aware that they face being sliced open and probably spent the night before in a state of mortal alarm about whether they’ll come through. Then the process of recovery reminds you how much the body does not like being mutilated. With medication the ‘harm’ never figures. Not in any discussion I’ve ever had with a medic – or nurse. It’s as though an adverse event (‘unwanted effect’ seems to be the current term) either doesn’t exist or cannot ever be mentioned. I was told when I queried whether metformin had any side effects that no, it didn’t. In fact it was positively life-enhancing, anti aging, weight reducing and all sorts. Moreover, a recent study had showed that people who looked up the harms of a particular medication were more likely to get them. Evidence based hypochondria was the message, for people who like to know what a drug might do before swallowing it – and then weigh up their own minds about taking it. I was perfectly prepared (then) to take metformin – what I actually wanted to know was whether it might make me feel crap, and for how long.
Ask a pharmacist the same question, which I did, and you’ll get a decent answer: 30% of people on metformin get bad diarrhoea. Pharmacists appear to have no problem sharing their technical knowledge. Ditto physiotherapists. They work with what they see – a wonky knee or deranged balance. Is it something to do with the ‘I’m at the very top of the expert tree’ that makes medics so disinclined to work equally with patients?
Relationship-based medicine. It’s a huge shift. I’m wondering how one – me – goes about it in real life. After the discussion and diagnosis and drug offer -do we just say ‘tell me about the harms’. That’s likely to produce a bemused face and a ‘what do you mean?’ but I suppose could open up a discussion. (Providing you ignore the fact that there are 15 other patients waiting outside). I tried it once, with a nurse practitioner but she got so red in the face and started waving her pencil round. I thought she might be about to have a heart attack and resorted to ‘no, I’m not going to take the stuff’.
Strikes me too that mostly in medicine these days we’re being asked to take a pill to prevent a risk. A risk may never happen (the basis of the whole insurance industry). So it then becomes a possibly remote risk v a certain harm – given that all drugs/poisons cause a degree of damage.
If an honest doc said ‘I want you to take a pill which stands a good chance of damaging your liver or muscles, but has a slight chance of preventing a heart attack at some unknown future point – how many people would actually sign up to that?’ It would certainly sharpen up the discussion.
Maybe we need to call in some experts in relationships management to give us a few tips.
Very, very sorry to hear about the loss of your beautiful daughter.
I hope a few words of comfort will help you like it helped me.
Please hang in there.
My sincerest condolences to you and your family.
Do you suspect there will be any collaboration with the PFS Foundation? They’ve been around for 5 years and seeing some kind of comparative research between the various groups could help elucidate some of this mess.
We liaise closely with several key people in PFS and PFS features heavily in what the materials coming from RxISK. They already have an active research program in place and obviously are committed to that. If that looks like it is producing the right leads for all groups we will jump in. At the moment they are more endocrine and receptor oriented and we are perhaps more neurological. Just at the moment it looks no harm to have more than one string to the overall bow. At the end of the day though the betting has to be all these conditions share things in common.