Patients are the experts in antidepressant withdrawal – Dr Dee Mangin, University of Hamilton, Ontario, Canada

Dr Dee Mangin is a Family Physician and Associate Professor in the Department of Family Medicine at McMaster University in Hamilton, Ontario, Canada.  She is also one of the founders of RxISK.org.  I listened to her speaking on CBC Radio today about antidepressant withdrawal.

http://www.cbc.ca/radio/whitecoat/i-was-sobbing-uncontrollably-patients-say-antidepressants-difficult-to-quit-1.4658787

She has been conducting research into withdrawal from Prozac after long-term use.  I was so pleased to hear the respectful way she talked about patients, their need for accurate information so that an informed choice can be made.  She acknowledged the value of the extensive research conducted by the online patient community into antidepressant withdrawal.  She recognised the complete lack of information on this subject in the medical community and the urgent need for research.  She recognised the fact that patients have not been believed and how painful and damaging this can be for so many.

“I think that one of the difficulties patients have faced over the years is that reporting these symptoms to friends or family or their doctors and not being believed. To have the symptoms attributed to some sort of psychological illness rather than being heard or acknowledged.” .

“I think initially the most important research was done by patients who noticed these clusters of symptoms, who noticed the similarity of what they were experiencing and started to talk to each other online.”

I look forward to reading the published results of Dr Dee Mangin’s research into withdrawal after long-term use of Prozac.  I am a member of the Facebook Group “Prozac (Fluoxetine) Should be Illegal”.   The despair is there for anyone to read about should they care to join.

Laura Delano of the Inner Compass Initiative described her own very painful experience of withdrawing from multiple drugs of dependence and the work she has done in helping others in many different countries.  She also speaks about working in partnership with medical professionals and psychologists, they clearly value what she has learned and what she has to say.

https://www.theinnercompass.org

I contrast this with what has happened in the UK.   So many of us have been battling to be heard, to raise the alarm, to liaise with professional bodies and Government Departments.  I am thankful that the BMA and Public Health England have listened to our concerns.  However, I had hoped that RCPsych would engage with patient campaigners in the production of a new leaflet on antidepressant withdrawal.  They have not.   I had hoped that leading psychiatrists, Profs Wendy Burn and David Baldwin would retract and apologise for their misleading statement in a letter to the Times newspaper that withdrawal symptoms only last for two weeks for the vast majority of patients.  They have not. I listened to the Royal Society of Medicine podcast featuring Prof Simon Wessely and Prof Clare Gerada discussing antidepressants and antidepressant withdrawal and was left aghast.  In fact, I have been left dismayed at almost every turn.

Royal Society of Medicine podcast, rebuttal of complaint by RCPsych

I had hoped that in a small country like Scotland, we might be able to make good progress, show the world what we could do, but I was wrong.  I had hoped that the Scottish Government might take this matter seriously but they have not.  I had hoped the Minister for Mental Health, Maureen Watt, would take this matter seriously but she has not.   Instead, Marion Brown, psychotherapist, together with patient campaigners are being forced to keep gathering evidence for the Public Petitions Committee in the hope that the Scottish Government might start to listen.  Patients are forced to recount their very painful stories in the hope that something might be done.  They know that their efforts may very well be in vain, but they hope nevertheless.  Our petition has gathered an unprecedented number of submissions and they are truly harrowing to read.

http://www.parliament.scot/GettingInvolved/Petitions/PE01651

Sadly, our Minister for Mental Health seems incapable of listening and she shows no concern for our pain. She reads out standard statements with little emotion. By contrast,  Johann Lamont, MSP and Convenor, Michelle Ballantyne, MSP and other members of the Committee clearly understand.  Their next task is to seek the views of GPs in Scotland.  Will GPs be wiling to speak out or will they take the lead from the medical establishment and remain silent?  It seems that the main issues are already well understood in Canada.  It does not matter which country we are in, the effects of antidepressants are the same, the withdrawal symptoms are the same, the disbelief and pain are the same.

After listening to Dr Dee Mangin today, I felt encouraged, someone is listening, just as the Public Petitions Committee members are listening.  It makes a huge difference.  Please believe that, it really does.  Every time I meet silence and denial, avoidance and deflection, accusations (pill-shaming) and scorn, I feel immense pain.   And that pain is felt throughout our community.  Words matter, they matter a great deal and for those who purport to be experts or policymakers in mental health not to recognise this is utterly shameful.

Approximately one in five adults is now consuming an antidepressant in Scotland and the UK has one of the highest rates of consumption according to OECD statistics.

OECD (2017), “Antidepressant drugs consumption, 2000 and 2015 (or nearest year)”, in Pharmaceutical sector, OECD Publishing, Paris, http://dx.doi.org/10.1787/health_glance-2017-graph181-en.