Mental Health Debate at Holyrood – 13 June 2018

https://www.scottishparliament.tv/meeting/debate-health-june-13-2018

My email to all MSPs who contributed.

Thank you to all who took part in today’s debate on Mental Health.  Patients in the online prescribed dependent and harmed community like myself were watching with interest.  We too share the very many concerns about mental health services in Scotland.  We watch with dismay the campaigns to raise awareness and reduce stigma, telling people to seek help for mental health issues knowing full well that the help may well not be there when they seek it.  We also know that the majority will be prescribed medication, most commonly antidepressants.   We were disappointed to hear Annie Wells state that one in twelve people in Scotland take antidepressants.  We would have hoped that she would have had an accurate figure in such a debate.  There are approximately 850,000 patients on antidepressants, perhaps the figure is now even higher.  That is one in six of the population and closer to one in five of the adult population.  Brian Whittle then repeated the one in twelve figure and I note that the Minister for Mental Health, Maureen Watt did not intervene at any stage to correct it.

We were pleased to hear Tavish Scott mention one patient who had difficulties accessing appropriate advice about antidepressant side effects when she became pregnant.  However, we were deeply disappointed that once again the issues of antidepressant dependence, withdrawal and resulting iatrogenic harm were simply ignored.  Prescribed drug dependence is a mental health issue, it is listed in the Diagnostic and Statistics Manual which outlines all psychiatric diagnoses.  I hope that all MSPs are now aware of petition PE01651 on prescribed drug dependence, brought last year by Marion Brown.

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

This petition has received an unprecedented number of patient submissions, most of them harrowing stories of drug dependence and harm.  The reason this petition was brought was because patient concerns are often ignored or disbelieved by doctors because they do not recognise the many adverse effects of antidepressants. Patients in Scotland and across the UK have campaigned long and hard to bring these issues to the attention of politicians and the medical profession.  If it were not for our campaign, the issue would have been ignored. I draw attention to the words of Prof Dee Mangin in Canada who says patients are the experts in antidepressant withdrawal and this certainly is the case.  It is patients who have raised the alarm about these drugs, it has not been the medical profession.

https://nevertrustadoctor.wordpress.com/2018/05/12/dr-dee-mangin-ontario-patients-are-the-experts-in-antidepressant-withdrawal/

We have battled long and hard for recognition of this issue and now our voices are finally being heard in one country at least.  We had hoped it might just be Scotland. We have liaised with the BMA in London and the All Party Parliamentary Group on Prescribed Drug Dependence at Westminster.  We welcome the Public Health England Review of prescribed drug dependence but are dismayed by the fact that patient voices will once again not be heard.  We continue to seek a public inquiry at UK level.  We have battled against misinformation emanating from leading UK psychiatrists who claim that antidepressant withdrawal is short-lived and self-limiting.  I personally work full-time on this campaign despite being mostly in bed.

Whilst we would all agree that prevention is fundamental in mental health as in physical health and that young people should be given all the help and support they need, it is not good enough to ignore the pressing needs of the very many patients now dependent on antidepressant drugs and those harmed by them.  Unless there is dedicated withdrawal services, many of these patients will be on antidepressants for life, to the detriment of their long-term health.

I repeat that one in six people in this country are prescribed antidepressants, at the latest count and closer to one in five adults and I have no doubt it is still rising. Every single one of those patients has two choices … to taper off the drugs at some point or stay on them for life.  The current NICE tapering guidelines are not fit for purpose and neither are the guidelines on depression.  These are combined in a single document and are now under review.

Patients in the prescribed harmed community have been ignored for far too long.  We are ignored by our doctors because they have no idea what is wrong with us, most of the time.  We have been ignored by Ministers at Holyrood and at Westminster.  However, due in part to continued pressure from our community there is now a review in England and belatedly a parallel review in Scotland.  Without petition PE01651 I doubt this would have happened.   A similar petition is being considered in Wales.

I conclude by urging every MSP to take these issues seriously and to speak out on our behalf.  We are part of the mental health community and many of us have lost decades of our lives to these drugs.  Do not ignore us, we do not deserve it.  Our voices matter as much as any other patient group with mental health issues.   It is not good enough to focus only on those seeking help for mental health issues, services need to be provided for those who have been in the system for some time and are now shackled to drugs they do not need or want.

Kind regards

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Too many tweets to Prof Wendy Burn, RCPsych?

The ongoing campaign on prescribed drug dependence, withdrawal and iatrogenic harm has come about largely because of poor communication.   Lack of information from drug companies and from doctors about the risks of dependence, failure to listen to patients when they suffer withdrawal symptoms. misleading information about antidepressants in the national press, misleading tapering guidelines, failure by the Royal Colleges and Ministers to engage with the patient community and so on and so forth.  And so we, both patients and campaigners, are left to communicate as best we can even though we rarely receive any meaningful response and most of the time we receive no response at all.   I try to communicate the issues as best I can but of course I am mostly communicating into a void, never knowing who is reading my correspondence or whether it is read at all.

Twitter exchange with Prof Wendy Burn, 12 June 2018

WB.  Hello. Please would you stop tagging me in so many tweets.  I don’t want to block you but your sending me the same thing repeatedly.  Thanks.

FF.  I do apologise, my memory isn’t so good nowadays.

WB.  Yes I guessed it was that.  Maybe keep a note? As I said I don’t want to block you.

FF.  I also wanted to keep you informed as we were concerned about the lack of transparency around NICE guidelines.  I thought it was important that you should be aware that email correspondence was being put in the public domain.

And so I have decided to reflect on the last few days and reconsider the number of tweets I had sent about my own attempts and the attempts of others to communicate with Prof Wendy Burn in recent months.

 

Offer to meet/talk on phone, offer subsequently withdrawn 

On 6 June, after an exchange with Prof Wendy Burn by DM on Twitter, she offered to either meet with me or talk on the phone.  I then decided that email would be preferable due to my cognitive difficulties, particularly short term memory deficits.  The following day, I sent a fairly lengthy email outlining the various concerns of the online patient community.

On 8 June, I then received a DM from Prof Burn stating that she could not engage with me further at this time.   I wrote about this in my blog and the following day, Marion Brown added her own email correspondence with Prof Burn in the blog comments section.  Marion Brown has not as yet received a response to her emails of 25 & 27 February.

https://nevertrustadoctor.wordpress.com/2018/06/08/wendy-burn-president-of-rcpsych-offered-to-meet-offer-now-withdrawn/

I had of course previously sent an email to Prof Burn on 2 March, I have yet to receive a reply. I had offered to act as the link person between the online community and RCPsych in the production of a new leaflet on antidepressant withdrawal.

On 9 June I became aware that a recent meeting to discuss the NICE Guidelines on depression had not been recorded in any way and therefore those of us likely to be affected by any changes to these guidelines have no way of knowing what in fact was discussed.  Dr Peter Gordon wrote about this in his blog as he too is concerned.

https://holeousia.com/2018/06/09/the-development-of-healthcare-guidelines-should-be-fully-open-to-the-public/

As there was to be no further engagement with Prof Burn at this time, I decided to write a new blog entry reproducing my previous correspondence with Profs Burn and Baldwin following the publication of the letter in The Times.  I had decided transparency was very important and that attempts to engage by the online patient community should be made public.  I also thought it courteous to inform Prof Burn that her emails were being made public.

https://nevertrustadoctor.wordpress.com/2018/06/09/correspondence-with-profs-wendy-burn-and-david-baldwin-rcpsych/

On 10 June, I published further email correspondence between Altostrata, founder of the website, Surviving Antidepressants, and Prof Burn.  Again I thought it courteous to inform Prof Burn.   Altostrata awaits a response to her email of 10 March.

https://nevertrustadoctor.wordpress.com/2018/06/10/correspondence-with-altostrata-and-prof-wendy-burn/

The following day,  Marion Brown added further email correspondence with Prof  Burn in the comments section of my earlier blog entry and again I thought it courteous to inform Prof Burn.

https://nevertrustadoctor.wordpress.com/2018/06/08/wendy-burn-president-of-rcpsych-offered-to-meet-offer-now-withdrawn/

I also wrote a new blog entry, “Is Royal College of Psychiatrist divorced from reality?”

Tweets either sent directly to Prof Burn or in which she was tagged.  Also threads in which she was already participating. 

9 June – joined an existing thread and appended blog entries “Correspondence with Profs Wendy Burn and David Baldwin, RCPsych” and “Wendy Burn, President of RCPsych offered to meet, offer now withdrawn“  Prof Burn tagged by me.

9 June – sent out blog again stating that Dr Peter Gordon had appended his correspondence to my blog entry “Correspondence with Profs Wendy Burn and David Baldwin, RCPsych”.  I thought it was courteous to keep Prof Burn informed.

9 June – joined existing thread, Prof Burn had already joined it,  appended blog entry “Correspondence with Profs Wendy Burn and David Baldwin, RCPsych”

9 June – responded to Dr John Crichton, RCPsych Scotland, and tagged Prof Burn, and appended blog entry “Correspondence with Profs Wendy Burn and David Baldwin, RCPsych”.  I felt it important that both Dr Crichton and Wendy Burn were aware of my concerns as expressed in the Twitter thread.

10 June – sent out blog entry “Correspondence with Altostrata and Prof Wendy Burn, RCPsych”  I thought it was courteous to inform Prof Burn.

11 June – sent out blog entry “Wendy Burn, President of RCPsych offered to meet, offer now withdrawn“ stating that Marion Brown had appended her email correspondence with Prof Burn. Again I thought it was courteous to let her know.

11 June – sent blog entry to RCGP, BMA, PHE and tagged Prof Burn “Correspondence with Profs Wendy Burn and David Baldwin, RCPsych”.  I thought it would be courteous to let her know I was sharing this information with other medical bodies and PHE.

11 June – replied to Nick Hodson, RCPsych, Wendy Burn already tagged by him and appended blog entry “Correspondence with Profs Wendy Burn and David Baldwin, RCPsych”

11 June – Tweeted new blog entry ”Is Royal College of Psychiatrists divorced from reality?

12 June – responded to thread started by GPView and tagged Prof Burn.  Appended blog entry “Correspondence with Altostrata and Prof Wendy Burn, RCPsych”

 

Perhaps I communicate too much.

 

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Is Royal College of Psychiatrists divorced from reality?

It seems to me that the Royal College of Psychiatrists is completely divorced from reality when it comes to antidepressants and antidepressant dependence and withdrawal.  It promotes  antidepressants as “safe and effective” and assures us that they “save lives”.  Profs Wendy Burn and David Baldwin state in The Times newspaper quite categorically

” … the statement that coming off antidepressants has disabling withdraw effects in many patients “which often last for many years” is incorrect.  We know that in the vast majority of patients, any unpleasant symptoms experienced on discontinuing antidepressants have resolved within two weeks of stopping treatment.”

Yet in an email exchange with Altostrata, founder of the website Surviving Antidepressants, Prof Burn states

“It is difficult as I haven’t seen this clinically and there is not much research although some is now underway …”

Perhaps Prof Burn should not author a letter to a national newspaper about a subject which which she is so unfamiliar and has such little knowledge.  Did she simply accept Prof David Baldwin’s assertion that antidepressant withdrawal lasts only two weeks?  Prof Baldwin had authored the two research papers that he provided to me as supporting evidence.  These did little to satisfy me or anyone else reading them.  Is it simply the case that leading psychiatrists expect the public and patients to believe what they say just because they say it!! If indeed there is such little research, what right do Profs Burn and Baldwin have to refute the statement by Dr James Davies, Roehampton University.  This is not what I expect from leading doctors and/or academics.  After all Dr James Davies has taken the time and the trouble to conduct a survey of patients in the online support community and is therefore fully cognisant of the immense difficulties of withdrawal and its protracted nature.

Other leading psychiatrists, such as Dr Allen Frances, US, Chair of Task Force for DSM IV, Dr Roy Purlis, member of the Editorial Board for the American Journal of Psychiatry and Prof David Healy, Wales, psychopharmacologist and international expert on SSRIs  are fully aware that antidepressant withdrawal and its effects can in fact last for months or even years.

Roy Purlis states in a recent article in entitled “Anxiety about Antidepressants”

“.. withdrawal syndromes have been recognized from the beginning of the modern psychopharmacologic era. For this reason, slow, systematic tapers—when necessary, incorporating longer half-life antidepressants—represent a standard of care.”

UK psychiatry continues to promote the benefits of antidepressants and they are now very widely prescribed.  Yet there appears to be a considerable lack of understanding of withdrawal, its nature, its severity, how long it can last and the resulting long-term consequences.  How can this possibly be the case given that antidepressants have been on the market for decades?  Public Health England has announced a review and Professors of General Practice in the UK, Canada and The Netherlands have conducted research or are in the process of doing so.    I would question what the role of psychiatry is in all this.   Why has psychiatry not initiated such research?  Surely it is incumbent upon them to ensure that tapering guidelines are fit for purpose and GPs appropriately educated in tapering methods?  No wonder so many patients are being harmed.

In the meantime, the online patient community has become like a parallel universe .. as individuals most of us have been unable to find a doctor to understand the nature of withdrawal in all its facets and so we have collectively congregated together to do our own research and find our own optimum ways of tapering.  We now find ourselves feeding all this information back to those in positions of power and responsibility but receive little by way of response. We campaign, we petition, we engage as best we can but are dependent on others to reciprocate.

The RCPsych website states

Our values underpin everything we do. Below are each value and the behaviours which we expect from our staff and members involved in College work.

  • Value everyone’s input and ideas equally
  • Consider how own behaviour might affect others
  • Work together as One College – incorporating all members, employees, patients and carers
  • Work together with patients and carers as equal partners
  • Be transparent, wherever possible and appropriate
  • Learn from all experiences
  • Value and encourage personal feedback
  • Use feedback to make continuous improvements
  • Deliver outstanding service to members, patients, carers and other stakeholders
  • Promote professionalism by acting with integrity and behaving responsibly
  • Demonstrate accountability in all that we do

I will leave readers of my blog to draw their own conclusions.

RCPsych has dismissed the complaint about the letter in The Times as unfounded.

In so doing they have caused an immense amount of pain and hurt in our community despite all our efforts to make our voices heard and our concerns well known.  They have failed to make evidence based statements in the national press.  They have attempted to discredit our personal accounts and our campaign for support services.  They have put more patients at risk.  We await their response to the appeal.

 

 

 

 

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Correspondence with Altostrata and Prof Wendy Burn, RCPsych

Altostrata is the founder of the website Surviving Antidepressants which has helped so many people safely taper off antidepressants and other psychiatric drugs.  She has many years of experience of psychiatric drug withdrawal. The following is an email exchange between Altostrata and Prof Wendy Burn, President of RCPsych.  Other email exchanges with Prof Burn are reproduced in previous blog entries and comments sections –  these are with myself, Marion Brown, psychotherapist and Dr Peter Gordon, psychiatrist.  All relate to antidepressants and antidepressant withdrawal.

https://nevertrustadoctor.wordpress.com/2018/06/09/correspondence-with-profs-wendy-burn-and-david-baldwin-rcpsych/

Exchange between Altostrata and Prof Wendy Burn

Altostrata has not as yet received a reply to her final email.

Date: March 7, 2018 at 3:26:10 PM PST

Subject: Antidepressant tapering and withdrawal syndrome

Doctor Burn

I understand you are interested in learning more about patient experience in tapering psychiatric drugs and withdrawal syndrome.

Very concerned about unnecessary risks in discontinuing all types of psychiatric medications and suffering from severe prolonged withdrawal syndrome myself, I founded SurvivingAntidepressants.org to provide peer support for tapering.

There are dozens of peer support Web sites like mine and hundreds of thousands of patient postings all over the Web about the difficulties of quitting psychiatric medication, even under a doctor’s supervision. Patients are having a very hard time finding clinicians who are aware of gradual tapering procedures tailored to individual tolerance.

In general, clinicians do not sufficiently recognize psychiatric drug withdrawal reactions. Contrary to popular belief, withdrawal symptoms do not always emerge immediately and resolve within a few weeks or months.

Some people suffer debilitating neurological damage from too-fast withdrawal for years. The misdiagnosis of withdrawal syndrome may have confounded all studies of relapse after discontinuation of psychiatric drugs.

These iatrogenic symptoms are usually misdiagnosed as relapse or emergence of a psychiatric illness. This can result in drastic over-medication as doctors try to quell withdrawal symptoms.

What’s shown up on patient-run Web sites is that some people require very, very gradual decrements in dosage, sometimes 5% or less per month, to minimize withdrawal symptoms. Some can tolerate decreases of only a fraction of a milligram at a time.

We have found such very gradual reductions in dosage can be successful in avoiding neurological destabiization. You may read thousands of case histories here Introductions and Updates http://survivingantidepressants.org/index.php?/forum/3-introductions-and-updates/

Our protocol is described at these links:

Why taper at 10% of my dosage? http://survivingantidepressants.org/topic/1024-why-taper-by-10-of-my-dosage/

Why taper? Paper demonstrates importance of gradual change in plasma concentration http://survivingantidepressants.org/topic/6036-why-taper-paper-demonstrates-importance-of-gradual-change-in-plasma-concentration/

Taking multiple psych drugs? Which drug to taper first? http://survivingantidepressants.org/topic/2207-taking-multiple-psych-drugs-which-drug-to-taper-first/

We have detailed explanations about how to titrate specific drugs in this area http://survivingantidepressants.org/forum/14-tapering/

My strong belief is that it would be much, much better for patients if they could see physicians for this common-sense information, all of which is endorsed by governmental guidelines, rather than coming to an Internet site for guidance about how to taper themselves. Please help promulgate methods of gradual, individualized tapering to avoid severe withdrawal damage.

We are always looking for people with prescription privileges anywhere in the world who are knowledgeable about very gradual, individualized tapering of antidepressants and antipsychotics as well as benzodiazepines, and who can recognize withdrawal symptoms and know what to do if they show up.

This would be for the purpose of local referrals.

Can you recommend any prescriber colleagues who are knowledgeable about tapering? Do you know of any who treat post-acute withdrawal syndrome?

Thank you,

Altostrata, Administrator

SurvivingAntidepressants.org

PS For the information of the general public, I have accumulated probably the best collection of documentation about tapering and withdrawal syndrome available:

– About tapering techniques here http://survivingantidepressants.org/index.php?/topic/300-important-topics-in-the-tapering-forum-and-faq/

From Prof Wendy Burn

8 March 2018

Hi

Thanks for getting in touch. We are going to produce information for patients and GPs on coming off antidepressants. I’ll get back in touch with you when we are further along with our plans.

It is difficult as I haven’t seen this clinically and there is not much research although some is now underway. Benzos of course are well known to be addictive.

I an however listening to people like you and will explore this further.

Best wishes

Wendy

Professor Wendy Burn

 

Subject: Re: Antidepressant tapering and withdrawal syndrome

Date: March 10, 2018 at 2:42:05 PM PST

To: Professor Wendy Burn <Wendy.Burn@RCPSYCH.ac.uk>

Professor Burn, every one of the nearly 10,000 people from all over the world who have registered on my site have seen a physician and often a psychiatrist for their withdrawal reactions. Only a handful have found the physician or psychiatrist even recognized withdrawal symptoms.

None know what to do when withdrawal symptoms appear, or their patients would not be searching the Internet for answers. (Stop tapering, observe, potentially updose, observe, and taper more cautiously.)

It’s not unusual for one of my site members to report that a doctor, even a psychiatrist, says he or she has never seen withdrawal symptoms, or that the physician “does not believe” that withdrawal symptoms are possible, as though it was an article of faith.

There is also the ludicrosity of psychiatrists claiming injury from withdrawal syndrome is impossible because they haven’t seen documentation of it. They will only be concerned about it when their colleagues are concerned about it. (Hundreds of journal articles have been published documenting withdrawal symptoms, but only a few have followed patients long enough to establish the injury can last beyond a few weeks. Personally, it took me 11 years to recover from paroxetine withdrawal syndrome, and that only witht the intervention of one of the very few physicians who treat it.)

This flies in the face of all logic. Everyone, particularly patients, knows grueling symptoms occur when one inadvertently skips a dose yet discontinuation is presumed to be pain-free.

Contrary to widespread belief by physicians, even psychiatrists, patient tolerance for drug reduction varies from person to person. The cheerful assumption that anyone can go off a psychiatric drug within a couple of weeks and suffer only mild, transient symptoms was carefully cultivated over decades by pharmaceutical manufacturers and their paid psychiatrist consultants.

If you look closely at the “consensus panel recommendations” regarding “discontinuation” promulgated by Schatzberg, et al, from which this disastrous propaganda flows, you will see the two conclaves were sponsored, respectively, by Lilly (1997) and Wyeth (2006).

To his credit, one of the experts from Schatzberg’s “consensus panel,” Peter Haddad, made an effort to remedy this misinformation for the rest of his career, authoring many papers about withdrawal syndrome and warning about misdiagnosis of same.

As predicted in all the literature about psychiatric drug withdrawal, from Haddad, Fava, Chouinard, Andrews, Harvey, Nielsen, El-Mallakh, Bhanji, etc., the lack of knowledge among physicians about adverse withdrawal reactions is indeed endangering patients.

Chouinard attempted again to bring this to the attention of medicine in 2015 https://www.karger.com/Article/FullText/371865

You may read many papers concerning psychiatric drug withdrawal syndrome here http://survivingantidepressants.org/forum/16-from-journals-and-scientific-sources/

It is true, there are very few papers about appropriate tapering practices. However, advice to taper gradually is embedded in worldwide psychiatric guidelines, including NICE (see the list at http://survivingantidepressants.org/topic/2930-guides-to-tapering-off-psychiatric-medications/ ) and many drug package inserts.

The ambiguity lies in interpretation of the word “gradually.” The answer for this is obvious: The rate of taper absolutely must be governed by the patient’s tolerance for drug reduction!

Yes, after millions have already been injured, to avoid further patient injury, it might be time yet again to remind doctors to taper gradually. But it behooves the RCP and every other psychiatry organization to finally explain what “gradually” means and stop disparaging the risk of withdrawal syndrome.

I sincerely hope you and the RCP will take this step.

 

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Correspondence with Profs Wendy Burn and David Baldwin, RCPsych

In the interests of transparency, I have decided to reproduce all correspondence between myself and Profs Wendy Burn and David Baldwin since the publication of their letter to the Times newspaper on 25 February 2018.  The letter itself is reproduced here.

A letter in the Times: ‘Pills for depression’

It was written in response to the following letter.

Sir, Further to your report “More people should get pills to beat depression” (Feb 22), the research by Andrea Cipriani et al has generated much excitement, with the Royal College of Psychiatrists claiming that it “finally put to bed the controversy on antidepressants”.

The study actually supports what is already known: namely that the differences between placebo and antidepressants are so minor that they are clinically insignificant. Furthermore, the trials covered only short-term usage (eight weeks). But about 50 per cent of patients have been taking antidepressants for more than two years, and the study tells us nothing about their effects over the long term. In fact, there is no evidence that long-term use has any benefits. Lastly, the study does not address the damage caused by long-term prescribing, including the financial burden to the NHS and the disabling withdrawal effects that these drugs cause in many patients, which often last for many years.

Antidepressants are prescribed to about 10 per cent of the UK population and even existing guidelines do not support their use by at least one third of these patients. This study will unfortunately do nothing to reduce this level of unnecessary prescribing and the consequent harms.

Dr James Davies; Dr Joanna Moncrieff; Professor Peter Kinderman; Viscount Hinchingbrooke, Council for Evidence-based Psychiatry

 

My blog yesterday described my most recent correspondence with Prof Wendy Burn.   Marion Brown has kindly appended her email to Prof Burn in the comments section.

https://nevertrustadoctor.wordpress.com/2018/06/08/wendy-burn-president-of-rcpsych-offered-to-meet-offer-now-withdrawn/

Earlier correspondence is outlined below.  I will leave readers to draw their own conclusions.  I have not received a response to my email of 2 March 2018.

Please note that in email of 1 March reproduced below, Prof Burn was very keen to talk about my difficulties with Nitrazepam, whilst ignoring the fact that I was also prescribed antidepressants for 35 years, latterly Venlafaxine.  I tapered off this drug in 2014-15.

“Thanks for getting in touch. I am sorry you have had such a difficult time. As you know nitrazepam is highly addictive, I never prescribe it.  I attach two papers from Professor Baldwin.”

My most recent letter from consultant psychiatrist also fails to mention my 35 years history on antidepressants and the fact that I have recently tapered off Venlafaxine.  There is a pattern emerging here.

26 February

Dear Professor Baldwin

Following your letter published in The Times yesterday and engagement with Dr Wendy Burn on Twitter, I have written the email below which I hope you will read.  I would be very interested to know the evidence for the statement in your letter about withdrawal symptoms resolving within two weeks for most patients.

Kind regards

(email to Wendy Burn below)

26 February 2018

Good afternoon Fiona and thank you for sending me he message. You might want to read the attached papers, which look at discontinuation symptoms both after abrupt discontinuation and after tapered withdrawal. Best wishes

Papers appended. (contact me if you wish copies of these papers).

David S Baldwin, Stuart A Montgomery, Rico Nil, Malcolm Lader.  Discontinuation symptoms in depression and anxiety disorders  International Journal of Neuropsychopharmacology (2007, 10, 73–84)

David S Baldwin, James A Cooper, Anna K T Huusom, Ian Hindmarch.  A double-blind, randomized, parallel-group, flexible-dose study to evaluate the tolerability, efficacy and effects of treatment discontinuation with escitalopram and paroxetine in patients with major depressive disorder.  International Clinical Psychopharmacology 2006, 21:159–169

 

26 February 2018

Dear Dr Burn

Thank you for engaging with myself and others on Twitter regarding antidepressant withdrawal.  As you know members of the online prescribed dependent and withdrawal community are extremely concerned about the lack of knowledge, information, support and services for those attempting to withdraw from antidepressants.  We have been liaising with the BMA and the APPG on Prescribed Drug Dependence for several years and were pleased to see the announcement of a year long review by Public Health England. Campaigners have submitted petitions to the Scottish Parliament and the Welsh Assembly seeding help, support and information for the many patients who are badly affected by antidepressants and other drugs of dependence.

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

https://www.assembly.wales/en/gethome/e-petitions/Pages/petitiondetail.aspx?PetitionID=1235

The leaflet on this subject on RCPsych website does not warn patients how very difficult and protracted withdrawal can actually be.    Members of the online community are extremely surprised that this should be the case.

https://www.rcpsych.ac.uk/healthadvice/treatmentsandwellbeing/antidepressants/comingoffantidepressants.aspx

The survey results presented gives no information about how long the respondents had been on the drugs.  As you know, patients have been kept on these drugs for many years, even decades.  Therefore it is unrealistic to expect patients to taper off in a short time.  I have looked at the NICE Guidelines on tapering and the advice is based on short term studies only.  The advice giving to prescribing doctors is therefore not fit for purpose.  Dr John Mitchell, adviser to Scottish Government, quoted the survey on your website at the last meeting of the Petitions Committee.  He too seemed unaware of the immense problems being caused to many patients by antidepressant withdrawal, dependence and iatrogenic harm.

I was extremely disappointed to read the letter in The Times written by Prof David Baldwin and yourself.

https://www.thetimes.co.uk/article/86afb2fc-18c7-11e8-a427-78e8af199a96

The letter stated that withdrawal symptoms resolve within two weeks for the vast majority of patients.  This is not consistent with the information in the above leaflet nor is it the experience of the very many patients who are congregating online in the prescribed dependent and withdrawal community.   I would like to know why this statement was made and on what evidence it was based.  Perhaps you could let me know so that I can share with online patient community.  We believe that it is extremely important that patients are properly informed about the very difficult process that withdrawal can be, particularly as more and more patients are being kept on antidepressants for longer periods.

You will be aware of the current research being conducted at the University of Southampton by Prof Tony Kendrick.

https://www.southampton.ac.uk/news/2016/07/antidepressent-study-kendrick.page

I would like to know why this programme of research has been started if withdrawal from antidepressants is so very easy for the vast majority of patients.  The recently reported study in the Netherlands was a failure due to the use of the Dutch Guidelines on tapering which proved to be too fast.  The research team is now running a second clinical trial using slower tapering methods. You will see that members of the online community have responded to this paper in the e-letters section.

http://bjgpopen.org/content/early/2017/11/14/bjgpopen17X101265

The survey of patients in the online community by Dr James Davies of Roehampton University suggests a very different picture of withdrawal than that suggested in the RCPsych leaflet and the letter in the The Times.   The Rxisk website covers the issue of protracted withdrawal and acknowledges how difficult it can be.

https://rxisk.org/complex-withdrawal-model/

I have personally withdrawn from Nitrazepam and Venlafaxine after being prescribed the former for almost 40 years and a variety of antidepressants for a similar time period.  Due to no appropriate advice on tapering I am now disabled and housebound after ending 3.5 years of horrendous torture and being confined to bed for the most part. I now encounter patients online equally badly affected when withdrawing from antidepressants alone.  I have clearly sustained a brain injury.  Presumably those who suffer for many years after antidepressant withdrawal have also experienced some sort of damage.  It is extremely important that patients are given accurate and evidence-based advice on this subject and they should not be misled into thinking withdrawal is a trivial matter.  After all, many of our prescribing doctors do not believe us when we describe our horrendous symptoms and the information being provided by RCPsych simply reinforces this sort of disbelief.  The letter to The Times has also made the situation worse.

I sincerely hope that the RCPsych can work constructively with patients and with prescribing doctors so that all can have accurate information to work with and ensure patients are not put at undue risk as a result of misleading advice and information.

Kind regards

Fiona French

 

1 March 2018

Dear Fiona

Thanks for getting in touch. I am sorry you have had such a difficult time. As you know nitrazepam is highly addictive, I never prescribe it.  I attach two papers from Professor Baldwin.

The leaflet was time- expired and as you say missing important details. It was based on a self-selecting survey and was never intended to stand alongside peer reviewed research which is what we now base our leaflets on.

This is an important area and we will produce a revised information leaflet with input from patients and, of course, the Royal College of GPs who see so many patients with mental health needs. I am happy to include someone who has had difficulty in stopping antidepressants in the production of the leaflet.

Best wishes

Wendy

 

2 March 2018

Dear Wendy

Thank you for your response.  It is well known of course that benzodiazepines are highly addictive and difficult to withdraw from but as I am finding out patients in the online dependent and withdrawal community are just as badly affected by SSRI antidepressants, including Venlafaxine, which I was also prescribed for about 15 years.  I include two videos of the sort of suffering I encounter every day online as a result of antidepressant withdrawal.

https://www.youtube.com/watch?v=XL7bUlsQr7c

https://www.youtube.com/watch?v=yn7IZyZcX80&t=30s

Thank you for the two papers which Prof Baldwin also sent to me.  I note that they are short term studies of patients which does not reflect the realities of what is happening to patients who take them for longer.

The survey results reported in your leaflet clearly showed that withdrawal symptoms lasted for some months for many patients.  That is indeed evidence and I can see no reason for the leaflet having been withdrawn.  Is that your normal practice, to withdraw leaflets during the revision process?  Having some additional information such as length of time on the drugs would of course have been very useful.  There is of course no other evidence of withdrawal symptoms apart from the accounts of patients who experience them.

The online patient community is happy to collaborate on the production of a new leaflet.  I am happy to be the contact person for that collaboration and I can liaise with anyone who cares to liaise with me on the subject.   There is a wealth of knowledge and experience of antidepressant withdrawal in the online community.  After all, we deal with nothing else.  We have engaged very successfully with the BMA, the APPG-PDD and other interested parties.

Kind regards

Fiona French

Posted in Benzodiazepine withdrawal syndrome | 2 Comments

Wendy Burn, President of RCPsych offered to meet, offer now withdrawn

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:

Dear Wendy

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.

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

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.

https://davidhealy.org/the-horrific-effects-of-not-being-believe

https://open.spotify.com/episode/3UvqL7BUs3zPJIMXcaAY59?si=58udnqPrTf2OJwW8cSnP6w

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.

Kind regards

Fiona French

On behalf of the prescribed dependent and harmed community

Posted in Benzodiazepine withdrawal syndrome | 7 Comments

Today is a day of hope

Today is a big day for me.  For the first time since September 2013, I am wearing a skirt and a pair of sandals.  I feel a little bit closer to normality.  I no longer look like a haggard old woman, 20 years older than my age.  I managed to walk round the supermarket and did not require a wheelchair.  It has been 5 long, gruelling, hard, torturous years but today I have some hope.  I am still far from being well, but progress is being made.  Whether I will ever be fully well, I do not know.  But today the sun is shining and I have some hope in my heart.  My doctors could have made this journey so much easier, instead they made it so much worse, that fills me with pain.  It could have been so very, very different, if only they had tried.

Posted in Benzodiazepine withdrawal syndrome | 4 Comments