The best celebration for the NHS would be to start talking …

Communication is vital.  Dr Margaret McCartney wrote recently in the BMJ   “The best celebration for the NHS would surely be for us to start talking.”  She was referring to NHS staff, but I felt it appropriate to respond and suggest patients also be included in this, particularly patients in the prescribed harmed community.   It seems that failure to communicate is evident everywhere, particularly when the subject is antidepressant dependence, withdrawal and iatrogenic harm.

Most of the problems for patients who have been harmed by drugs centre around communication or the lack of it.  Patients know the symptoms they are experiencing and often have a good idea why they are experiencing them.  The doctor on the other hand does not experience them but more often than not seems to think s/he knows more about those experiences than the patient.  I was chastised in the column sections of the Scotsman  for suggesting I might know more than a GP, the person worked in primary care, had three degrees and had published in academic journals.  Again my experience of my own health, my engagement in the prescribed harmed community, my knowledge of prescribed drug dependence was completely ignored and deemed irrelevant.  I tried to end the conversation as best I could.  It didn’t seem worth the effort.

My first appointment with a GP after becoming desperately ill in Sept 2013 resulted in a diagnosis of “depression”.  I concede I found it difficult to describe what I was experiencing as it was emanating from my brain and I had never felt anything like it before.  I had experienced many years of depression and I knew it most certainly was not depression.  I agreed to see a psychiatrist assuming he might be more knowledgeable on the subject.  It turned out he was anything but, he was shifty, uncommunicative, argumentative, said the most ridiculous things and I left, vowing never to go back.  He is now retired, he probably could not be bothered with a drug damaged patient on his hands. Subsequent consultations with GPs and private neurologist were equally dire and dismal.  How can they possibly describe themselves as “professionals”,  let alone “experts” when this is how they behave.

The Public Petitions Committee met on Thursday.  Again I was so very impressed with the Committee members and of course the incredible hard work by the petitions staff.  There was a last minute hitch with Dr Terry Lynch’s submission, this was immediately and professionally sorted out.  Apologies were made.  All was well.

The Herald newspaper continues to report on our campaign and the petition, again I would thank the newspaper and Helen McArdle, they have done an excellent job.  It certainly is the case that the “experts” are in denial.  Surely it should be clear by now to any “expert” that things have gone badly wrong.   Perhaps they know full well but cannot bring themselves to say so.

I engage with Dr Allen Frances, US psychiatrist, on Twitter, he does not block me despite my blunt responses. He was Chair of the Task Force for DSM IV.

He tweeted as follows:

‘Major Depressive Disorder’ was our biggest mistake in DSM III. Lumped severe illness with everyday sadness/disappointment/demoralization/grief. MDD is too heterogeneous to be useful- often not major/not depressive/not disorder.  Most people with DSM MDD don’t need meds.”

He also wrote in the BMJ in 2013 that “The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill”.

And so it seems that many patients are being diagnosed with MDD who do not need medication but are being prescribed it anyway.  It is also the case that many will become dependent on that medication and withdrawal can be hugely difficult and protracted symptoms can ensue.  Many patients thus affected are being diagnosed with “somatisation”, in line with Dr Frances’ predictions. For those who were medicated without good reason, the subsequent harm from dependence and withdrawal is simply intolerable, because it was entirely unnecessary and should never have happened.

Dr Allen Frances also tweeted

“Anti-psychiatrists hate us because they felt harmed (or at least not helped) by treatment. Mean well & want to protect others- but don’t get treatment helpful, even lifesaving, for many who desperately need it. I’ve often tried to make this point- but usually unsuccessfully.”  This was my response to him. I was outraged.

Dr Roy Perlis, psychiatrist and member of the Editorial Board, wrote the following commentary “Anxiety about Antidepressants” in the American Journal of Psychiatry.  He is responding to the recent New York Times article on the difficulties of antidepressant withdrawal.

Dr Perlis refers to the Cipriani meta-analysis in the Lancet, but he does not mention that the findings related to 8-12 months.   He uses the analogy of diabetes and insulin, a favourite among psychiatrists it would seem.  Yet, insulin deficiency is something that can be objectively measured, whilst depression cannot.  He writes: “it is hard to envision front-page articles in the New York Times about the dangers of long-term diabetes treatment.”  He seems to think that antidepressants are unfairly targeted, yet, I regularly see articles questioning the use of statins, at least in the UK press.  I never hear a psychiatrist use that as a comparison.

Dr Perlis continues …

“Factually, as the article acknowledges, withdrawal syndromes have been recognized from the beginning of the modern psycho-pharmacologic era. For this reason, slow, systematic tapers—when necessary, incorporating longer half-life antidepressants—represent a standard of care. And many clinicians will recognize in their practice some of the phenomena noted in the article, such as patients requiring very long tapers of medications.”

On Twitter, John Crichton, Chair of RCPsych, Scotland had responded to Roy Perlis stating

“This is a great contribution we have the same media fallacies which perpetuate stigma across the pond”

This is the usual sort of response that emanates from RCPsych .. when the prescribed harmed community start to question the damaging effects of the drugs, whether they are being over-prescribed and whether they are as effective as is claimed.   Of course patients who are indeed harmed rarely get an answer.  I have yet to see anyone chastise the critics of statins as “pill-shamers” or stigmatising heart disease.

It seems that Roy Perlis and his colleagues in the US know full well that antidepressant withdrawal is a problem whilst in the UK Profs Wendy Burn and David Baldwin, RCPscyh thinks it passes in a couple of weeks for “the vast majority of patients” .  Patients are still waiting for a response to their formal complaint about the misleading letter to The Times on this subject. How difficult can it be  to either produce supporting evidence or to apologise and retract.  To me it is very straightforward.

I was intrigued that Roy Perlis should write those comments.  I am active in the online benzodiazepine community, helping to support others trying to withdraw.  It is mostly Americans.  Benzodiazepines were on the market before antidepressants.  If US psychiatry is so knowledgeable, why are US patients have to turn online, because their doctors have no knowledge or understanding of benzodiazepine tapering.  It then occurred to me that the two biggest online support groups are run from the UK.  Beating Benzos and Benzobuddies, and it is mostly for the benefit of American patients.  My wrath continued.   A free service is being provided to the patients of a very rich country whose doctors know full well how difficult it is to taper off these drugs.  I asked Dr Christy Huff, MD to join the thread.  She is a US cardiologist, currently suffering horrendously from benzodiazepine withdrawal, she campaigns regularly to raise awareness.  She said she received little in the way of training in this subject as part of her medical education.  Therein lies the heart of the problem, perhaps.

Roy Perlis has blocked me on Twitter.  Maybe my tweets were a bit embarrassing. 

However, he has since responded to my email … the question is will be unblock me so that my string of tweets are visible on his Twitter feed?  He said he preferred not to engage in discussion on Twitter due to the 280 character limit.  However, he did not actually address my concerns in his email despite there being no character limit whatsoever.

Dr John Crichton spoke at Holyrood on 24th April – “Delivering the Mental Health Strategy 2017-2027 – One Year On”.

He said “Sometimes we forget or take for granted some of our greatest assets. One of those assets is partnership working between those with lived experience and those with practitioner experience, such as clinicians”.

Dr John Crichton has ignored me on Twitter.  He does not respond to me nor does he acknowledge my presence. 

Yesterday I received a surprising but welcome phone call from a consultant psychiatrist who wished to apologise to me and to prevent further anxiety and distress.  How wonderful it was, an honest and heartfelt apology.  What a difference it can make.  It was so very refreshing, something I had not encountered for several years, at least not from a medical professional.





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