Editorial Note: There are two elements to RxISK. One is identifying adverse events in order to keep people safe and to widen our knowledge about what drugs do.
But just as important is taking on a power structure that some of us get a glimpse of when we raise the possibility of an adverse event and our doctors dismiss us, or get nasty, and close ranks. The idea behind a RxISK report is to give someone a piece of paper to ever so slightly get to grips with the power imbalance and make it ever so slightly easier to raise the possibility of an adverse event.
The Reaction people get from doctors opens up another use of a RxISK report – mapping doctors who listen. If you have a doctor who responds favorably to a RxISK report could you send the details to David.Healy@RxISK.org.
The exchange below comes from comments on a recent post The Pills that Steal Sex. There are many other excellent comments but these three bring out the isolation of someone who is Drug Wrecked.
These are some of the things I have been told over the last 8-9 years by doctors when I have told them I was convinced citalopram had caused my ongoing sexual problems.
These are genuine responses from different GP’s, and one psychiatrist over the last eight years. It is almost impossible to get doctors to believe this condition exists, and once you have been labelled as having a mental illness (like most people who take SSRI’s have) anything you say is viewed through the lens of mental illness. The medication is never at fault. It is you that is the problem. No one will listen
Spruce this is EXACTLY how it happens. I think all these comments plus any contributed by other PSSD sufferers should be collated and made into a book, to be taken into every medical consultation about this.
If it wasn’t so ghastly, it would make a good comedy sketch for the Two Ronnies. I think the ‘best’ one is your final one and it’s one I’ve had, admittedly when akathisic from steroids, almost unable to get my diaphragm in my chest to allow me to breathe, pains down arms like heart attack symptoms, eyes so swollen could hardly open them, and shaking uncontrollably, GP ‘ well, I know in your mind you THINK you are having a problem with the medicine but it’s all in your mind and what you need is a psychiatrist, so I’m not discussing it with you. You can’t be allergic to steroids, steroids couldn’t do this, we use them to TREAT allergies.’ End.
Patient dismissed, feeling confused and desperate and at that time would have been grateful to die, as felt like was going to anyway. The worst bit was, he’s an expert, I am supposed to trust in his knowledge, he must be right, I must be wrong, so …..I must be crazy. God help me, I’m done for.
That was, for me, one episode and took a year to right itself. You folk are suffering for years on years. It is beyond words. Totally unacceptable. I am so so sorry. We have to change this, as a community. But how?
Every day for the last eight years I have woken up to this nightmare of numb genitals and all the other sexual problems. It is like waking up into a horror film every single day. The amount of mental torment over the years I have had from this PSSD easily surpasses all the other problems I have had in life even if you added them up collectively. Someone should be doing a long prison sentence for what happened to me; but no, the people responsible have gotten rich at my great personal expense. The injustice of it makes me want to vomit. I can never ever forgive what happened.
If I went out and got in a fight and injured someone somehow and it resulted in brain damage which meant they couldn’t feel their genitals or have any sexual feelings i would get a prison sentence. It’s one rule for the rich and powerful and another for the common man. I still can’t get my head around how this has been allowed to happen to me. Even if I was to recover tomorrow I still feel I would be psychologically permanently damaged from what has happened to me, and all the years lost etc. Almost on a weekly basis I question the point in continuing.
When I tried to complain about the PSSD and the fact that a psychiatrist took me off benzodiazepines much more quickly than is suggested by the BNF or the NICE guidelines I soon found out how doctors protect each other and hide behind their legal teams. I was the problem for daring to complain.
They would answer my complaint with questions not even relevant to the complaint and try to stall the complaint process by repeatedly referring to my sexual problems happening when I was on the drug and deliberately not mentioning the post aspect, even though I specifically asked them to address the post aspect. They would also deliberately ignore some aspects of the complaint, and my SEAP complaints advocate would often have to prompt them many times before they would address them.
I took my complaint all the way to the Parliamentary Health Service Ombudsman (PHSO) but found out that they were worse than the mental health trust. I had actual evidence that the trust hadn’t followed the correct guidelines regarding benzodiazepine withdrawal, and I could categorically prove two people in my complaint had lied, but the ombudsman told me even if they had lied it was unlikely to change their overall outcome and in their final written response they said the trust had done nothing wrong, even though there was overwhelming evidence to the contrary.
The PHSO has been heavily criticized by the patients association for not being fit for purpose and ignoring evidence presented to them and being heavily biased in favor of the NHS. They come down in favor of the NHS in 96% of cases, so statistically you have a 4% chance of getting some form of justice and even then they usually just ask the trust to apologize, regardless of what damage has been done to you. One woman was offered sixty pounds in compensation by the PHSO, after the NHS accidentally killed her husband.
Also the MHRA (drug regulator) is a sham. It is run by ex-drug company employees, and quite a few people who work at the MHRA have shares in the drug companies. When I reported my PSSD to the MHRA, the person who I reported it to was sniggering with his colleague about my sexual problems. That still makes me angry to this day.
When I pushed the MHRA about what they are doing about PSSD, they said there was insufficient evidence to prove it exists, even though they have had a lot of people reporting it. I have this in writing from the MHRA. As far as I am concerned the MHRA are almost as much of a problem as the drug companies in regards to trying to cover PSSD up.
I feel completely betrayed and failed by society. Doctors and the drug companies are very well protected by the system, and they know this. Probably why they can afford to be so arrogant.
Illustration: Shipwrecked by the Cure, © 2012 Billiam James