I engaged with Prof Wendy Burn, President of the RCPsych, as I often do on Twitter. This resulted in an offer by her to meet with me or to talk on the phone. I agreed. I am housebound and disabled so meeting is not an option for me. I decided I would talk on the phone. I then realised that that would be rather difficult because of the cognitive difficulties I now experience, particularly short term memory deficits. I cannot remember most of the conversations I have shortly after having them. Clearly I would want to report back to the many members of the online prescribed dependence and harmed community. After all it is on their behalf that I speak. I wrote a fairly lengthy email to Prof Burn. I hope that she has read and digested the contents. I am disappointed today that she has informed me she cannot engage with me further at this particular time, yet yesterday she tweeted
“Thanks Fiona. It’s a shame we couldn’t meet or talk on the phone as it’s the best way to understand each other but will look out for the email.”
Today, she has sent me the following DM on Twitter.
“I have just found out that the complaint that was submitted is still live so can’t engage further at the moment. I’m sorry about this.”
I am surprised that yesterday she did not know the complaint to RCPsych re letter to the Times newspaper was still live. I am extremely disappointed that she does not take an interest in the progress of the ongoing complaint about the letter in the Times which has caused so much distress to so many patients who have suffered terribly because of antidepressant withdrawal.
My email was as follows:
Thank you very much for offering to meet with me in person but as I explained on Twitter, i am both disabled and housebound and travel is not a possibility. I had thought that Marion Brown could meet with you instead but was unaware that she had already communicated to you her concerns by email and as yet has not received a response to emails of 25 and 27 February. She therefore feels that a meeting would not be productive at this time. Thank you also for offering to speak with me on the phone. I have decided it is better to communicate by email due to the cognitive difficulties I now experience. My short term memory is adversely affected and I would have difficulty remembering the content of such a conversation. As I am writing on behalf of the online patient community whose many members are adversely affected by drugs of dependence, mostly antidepressants, it is important that I can share with them any communications between us. I am after all only a spokesperson for them.
I am sure you are already fully aware of the levels of distress felt by the many members of the online patient community. They are clearly evident in the many submissions to the Scottish Government Public Petitions Committee of which you are already aware. These accounts are representative of the stories shared by the many patients seeking support online who have run into difficulties with antidepressants and other drugs of dependence and/or have been left with various kinds of drug damage.
Patients in the online community feel desperately let down as you already know. Many feel they were deceived about the risks and benefits of the drugs they were prescribed and now feel abandoned without appropriate medical help and support. Prescribing doctors mis-diagnose their withdrawal symptoms and often seem to think they are psychological rather than physiological in nature. Their distress has been intensified by certain events this year.
First, the publication of the Lancet meta-analysis and the resulting newspaper headlines left the online community extremely shocked. The idea that a million more patients should be prescribed antidepressants as suggested by the media headlines seemed very misplaced in the context of increasing concern about antidepressant dependence, withdrawal and iatrogenic harm. After all, it was becoming abundantly clear that there is inadequate knowledge and understanding of how to safely taper patients off these drugs. We had, after all, already been campaigning for some time on these issues and our concerns were being taken seriously by both the British Medical Association and the All Party Parliamentary Group on Prescribed Drug Dependence. The announcement of a year long review of prescribed drug dependence by Public Health England had been further very welcome news as was the six year research study of antidepressant withdrawal led by Prof Tony Kendrick at Southampton University. In the meantime a further study of antidepressant withdrawal from The Netherlands, had been reported in BJGP Open, a study which had been completely unsuccessful in getting patents off their antidepressants. Other research studies have also been reporting about the difficulties of withdrawal as well as newspaper reports featuring personal experiences of patients.
Consequently, it was against this backdrop that patients in the online community read the letter in the Times, published by yourself and Prof David Baldwin. It stated
“We know that in the vast majority of patients, any unpleasant symptoms experienced on discontinuing antidepressants have resolved within two weeks of stopping treatment.”
Clearly we were astonished that two leading psychiatrists should make this statement on behalf of RCPsych at this particular point in time. The first two words “we know” implies there is little doubt about the matter. And so this statement once again served to intensify our pain. It replicated the disbelief we encounter in the consulting room when we present with many extremely difficult symptoms resulting from antidepressant withdrawal and these symptoms can endure for many months and even years. It appeared to patients that this letter was stating to the readers of the Times and the wider general public that our experiences could not be real. that our concerns were unfounded and our campaign therefore unwarranted. This caused immense pain and distress.
Prof Baldwin kindly sent me two research papers by email when I asked him for the evidence supporting the statement. Marion Brown wrote about these in her email of 27 February. The patient community had hoped that the issue of the letter could be resolved fairly easily. It would have been extremely helpful to us if the letter in the Times had indeed been retracted or indeed the supporting evidence publicly presented so that it could assessed. That was indeed the hope of those patients who had signed the complaint to RCPsych. The patient community were disappointed that this did not happen and again felt the pain of having their concerns dismissed. As the issue of the complaint remains unresolved, the patent community is left in limbo on that particular matter. Retraction of the letter would have sent a signal to the online patient community that perhaps their immense concerns were understood.
The Royal Society of Medicine podcast featuring Prof Simon Wessely and his wife, Prof Clare Gerada caused further considerable distress to patients in the online community as once again Prof Gerada seemed to suggest that antidepressant withdrawal was not particularly problematic. This again left the online community feeling that all their concerns and their suffering were being dismissed as very unlikely to be real. This is really the main point I wish to stress, each of these events have served to intensify our pain and distress, at the very time when we are looking for signs of hope. We particularly look to leading UK psychiatrists and doctors such as Prof Gerada to provide this as well as others in positions of responsibility.
Prof David Healy seems to fully grasp the issues at play here. He has demonstrated this in his blog and on a recent programme on Talk Radio Europe. His understanding sends a message of hope to the online patient community and this is extremely welcome. It would be extremely positive if the Royal College of Psychiatrists could also send a message to our community that our concerns are being taken seriously and that every effort will be made to address them. This does not seem too much to ask.
I hope that this clarifies the adverse effects of recent events and explains why they have served to intensify patient distress, when it would have been so very easy to alleviate it. We will of course press for our voices to be heard during the Public Health England review as it is extremely important that we are not excluded from such processes. For far too long, many of us have been passive recipients of medical care much to our detriment but this is now 2018 and we have every expectation that our voices should now be heard.
I look forward to your reply in due course.
On behalf of the prescribed dependent and harmed community