I have recently completed this survey.
This is how the survey is introduced:
I have over twenty years experience of antidepressants as both a patient and as a prescriber so this survey was nothing but welcomed by me. However I immediately met with a divide:
So I entered as a “patient” – though I have been taking an SSRI antidepressant for over 20 years and no longer see any doctor about this. My prescription is considered by my profession to be for “maintenance treatment.”
The next question I could not answer. I was started on an SSRI antidepressant for “Social anxiety disorder”. It was only in withdrawal, as a result of the physical dependence on my SSRI, that I ever had low mood:
The survey then asked about duration of treatment. The highest category was for 4 years and above. I wondered how many, like me, might have been taking an antidepressant for considerably longer? This survey would not quantify such experience.
The hardest part of the survey was still to come and based on the Survey title:
This gave 15 options that had to be rated in a defined fashion. It was based on a grid. My lived experience of an antidepressant did not fit this defined grid and any “rating” from this grid would not realistically represent my lived experience of a prescribed antidepressant. This troubled me as a scientist, doctor, philosopher and once patient. It is why I have written this post
It is vital to note that the whole survey excluded any experiences of dependence on, and withdrawal from, antidepressants.
I nearly died from SSRI withdrawal due to akathisia and suicidality. This study has excluded such experiences.
In the free-text box at the end of the survey I shared these comments:
I have decided to write an open letter to two of those involved in this survey: Professor Andrea Cipriani (for the Scientific Board) and ‘The Mental Elf’ (Minervation Ltd) who is disseminating it across the world. The full team is:
This is the open letter that I have sent:
28th May 2019, Bridge of Allan. Dear Professor Cipriani and Dr André Tomlin, SUSANA Survey: This is an open letter to you which I have shared on my blog. Thank you for undertaking this survey. It has always been my view that science cannot be science without listening and including lived experience. It was most welcome to appreciate that this is also clearly the view of the Scientific Advisory Board for the SUSANA Survey. I wanted to share my experience of completing the survey. I am writing to ask if you might consider withdrawing the survey to allow it to be re-designed and replaced with a survey based on the input of those with lived experience of antidepressants. Without such input I fear that this world-wide study will not be valid. I look forward to hearing from you. Kind wishes Dr Peter J Gordon NHS psychiatrist of 25 years GMC: 3468861
Thank you for compiling this comment Peter – and for writing to Mental Elf and Andrea Cipriani. There are many people who have attempted this new SUSANA survey, disseminated widely on Twitter over the holiday weekend, and have been dismayed and concerned at its clearly apparent flaws..
As a psychotherapist (now retired) I have become extremely concerned to see what is happening to people who are put on ‘safe and effective’ (sic) antidepressants, commonly started when they visit their GP – now it seems for all manner of reasons. Certainly not ‘mentally ill’ – until an antidepressant is prescribed anyway – and they develop all manner of other symptoms and adverse/side effects of the antidepressant …. which then leads on to further medications and developments of their ‘illness’ (which was never there in the first place).
I have tested out the survey and found it to be very crude and the responses ‘rigged’ and restricted in order to ‘harvest’ notionally ‘preferred’ side-effects.
I consider this SUSANA survey to be seriously misleading and unethical.
Thank you Marion.
If anybody wants to add comments about the SUSANA survey please do.
I would reckon that many/most might prefer to do so anonymously. If you want to do so please e-mail me: peter@holeousia.com and I will ensure there is absolutely no identifiable material.
Sharing thoughts on this survey is about trying to help science and not in any way trying to hinder it: to try and help make this Survey as relevant, realistic and valid as possible.
aye Peter
Bridge of Allan
Scotland
The survey is looking only for people treated for depression, it would appear.
“You can participate if: …………….you were/are currently taking antidepressants for depression……..”
Clearly, by excluding those prescribed antidepressants for, say, social anxiety order or pain will be excluded and otherwise useful data on side effects of those drugs will not be taken into account.
Thank you Sidlaw Dreams.
I agree: “by excluding those prescribed antidepressants for, say, social anxiety order or pain will be excluded and otherwise useful data on side effects of those drugs will not be taken into account.”
aye Dr Peter Gordon
According to the publicity this project has taken two years to set up! It is low level student level stuff or is deliberately scewed – the information they claim to be collecting is already available – it would be hard to believethey have not already trawled through it. What is behind it?
Thank you Susanne.
I have just sent this e-mail. I am of the view that all that contributes to science needs to be considered openly:
28th May 2019,
Bridge of Allan.
Dear Professor Cipriani and Dr André Tomlin,
SUSANA Survey:
In the short time since I sent my open letter to you (that neither of you have acknowledged despite requesting a ‘read receipt’) the introduction explaining the basis, purpose and goals of the SUSANA study has been significantly changed:
From this:
To this:
There seems to be no explanation to those that are invited to participate in this study why such significant changes have been made. There is also no explanation to those many hundreds who have already completed this survey. Is this ethical?
In the “new” introduction. The Scientific Board states:
“Of course, there are important side effects that are rare or less common (such as suicidality, withdrawal symptoms, numbness, etc)”
I had understood that this remains a matter of scientific contention. The Mental Elf has covered this issue a number of times (Jauhar and Hayes)
So please can the Scientific Board for the SUSANA study inform all potential participants the evidence that validates this recently added statement/explanation: “Of course, there are important side effects that are rare or less common (such as suicidality, withdrawal symptoms, numbness, etc)”
Yours sincerely,
Peter Gordon
Dr Peter J Gordon
GMC: 3468861
Thank you for sharing your concerns with this survey. I myself tried to complete it. I have nearly 4 decades experience of consuming antidepressants and have been drug free for 5 years. I have never benefitted from these drugs and have suffered a variety of serious side effects. I found the questionnaire impossible to complete. It appeared to me to be poorly designed, I spent 20 years working in research, conducting questionnaire surveys, mostly for the Scottish Government. I was disappointed that there were various textual errors which should have been corrected after proof-reading. I was dismayed that the introductory preamble was changed as you have described after so many respondents had already completed the survey and that the additional text contained yet another textual error. I was even more dismayed that withdrawal symptoms were stated to be rare or less common than other side effects. I would have liked to share my many experiences of consuming and withdrawing from antidepressants but would only do so where the research instrument is of good quality. Without a good quality research instrument, the results will be of little value.
Peter – surely the NIHR should be checking their application for funding?