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