Wendy Burn, President of RCPsych offered to meet, offer now withdrawn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

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

This entry was posted in Benzodiazepine withdrawal syndrome. Bookmark the permalink.

9 Responses to Wendy Burn, President of RCPsych offered to meet, offer now withdrawn

  1. Snow-Leavis says:

    Dear Fiona,
    Thank you for writing this e-mail to the President of the Royal College of Psychiatrists. It is an excellent summary of concerns shared across the community of people who have experienced harm from prescribed medications.

    I agree that it does not seem too much to ask “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.”

    kind wishes
    Peter

    Like

  2. fhfrench says:

    Thank you very much, Peter. I know that you know and understand the many concerns of our community and thank you for continuing to campaign alongside us. I believe that Prof David Healy also understands what has happened. I would have hoped that the same understanding would have been by now demonstrated by the Royal College of Psychiatrists.

    Like

  3. Marion Brown says:

    For completeness … here is copy of my unanswered email of 27 Feb, referred to in Fiona’s new email:
    Dear Wendy
    On reviewing your reply below, I was stunned yesterday to read the letter that had been published in the Sunday Times (same day) – co-authored by yourself and Prof David Baldwin – with its bold put-down and confident assertions.
    On enquiry David Baldwin has provided, to a member of the online prescribed harm community, the studies dated 2006 and 2007 to which the Times letter refers. The actual research was of course carried out (in association with Lundbeck) in the years leading up to report and eventual publication.
    The research looked at up to 27 weeks of antidepressant ‘treatment’. It demonstrates clearly that side-effects, adverse effects and ‘discontinuation’ symptoms are significant and very unpleasant for many of the trial participants. There were even suicide attempts during the trials.
    Now – in 2018 – we are clearly seeing the horrifying results of the folly of believing blindly in, and basing policy, guidelines etc. on the superficial positive interpretation (and vast playing down of negative findings) of such research outcomes. It would appear that no account whatever has been taken of patient experience information and emerging evidence over all the 15 or so intervening years.
    You say that your College is not being willfully blind. Maybe not directly, but it must surely take some responsibility for the role it takes in shaping policy, guidelines and practices – and especially those recommended for GPs’ in their prescribing of antidepressants?
    I have written for doctors about my concerns http://www.bmj.com/content/360/bmj.k9/rr-6
    Kind regards
    Marion

    Like

  4. fhfrench says:

    Thank you so much, Marion

    Like

  5. MARION BROWN says:

    For completeness – I will now add the ‘prequel’ emails between myself and Wendy Burn on 24 and 25 February 2018.

    TWITTER 23 Feb (in reponse to @JFMoore …)
    @WendyBurn: We have something on out website which to be honest I haven’t seen before:
    http://www.rcpsych.ac.uk/healthadvice/treatmentsandwellbeing/antidepressants/comingoffantidepressants.aspx
    Is this helpful?
    TWITTER 24 Feb
    @recover2renew: The 2014 leaflet asks for feedback – and many people did ‘feeedback’. I wonder what happened to the feedback?
    @WendyBurn: Will ask for it. That leaflet is out of date and will need to be revised. You can send any thoughts to wendy.burn@rcpsych.ac.uk.

    EMAIL:
    RE: Twitter. Your invitation to feedback directly to you.
    Dear Wendy
    I am a psychotherapist – and see and meet all too many people who struggle desperately with antidepressants.
    This is a very serious and hugely widespread – and growing – problem.
    I wrote this article – which sums up where we are at:
    https://welldoing.org/article/what-you-need-to-know-about-coming-off-antidepressants
    Thank you for looking at this issue. It is growing daily, with RCPsych apparently completely oblivious (or wilfully blinded?).
    Marion Brown

    Subject: Re: RCPsych leaflet: ‘Coming off antidepressants’
    Dear Marion
    Thanks for this help for an updated leaflet.
    The College isn’t being willfully blind to this, it honestly has not been an issue in my clinical practice. This may be because I work with the elderly who metabolise drugs slowly and therefore are less likely to have withdrawal symptoms.
    I’ll also link in with the GP College as most antidepressants are prescribed by them.
    Best wishes
    Wendy

    Dear Wendy
    Thank you so much for replying to my email. This is greatly appreciated.
    I really am extremely worried about what I am seeing happening … which is why we have our Public Petition now gathering an astonishing collection of ‘written evidence’ for the Scottish Parliament Public Petitions committee. The patient stories that are being submitted and uploaded are truly horrifying – and there is a common thread running through all of them: patients not being believed by their doctors (especially about the problems that they experience with antidepressants etc.). To summarise, attached is copy of the brief introduction that I presented orally for the Petitions Committee when our petition was first considered last June, together with a rough diagram showing the pattern of the typical ‘patient journey’ that so many of the patient stories seem to be illustrating.
    This is our Petition 01651 web-link where you can find the (growing) collection of evidence:
    http://www.parliament.scot/GettingInvolved/Petitions/PE01651
    The similar Welsh public Petition is also gathering evidence.
    http://senedd.assembly.wales/mgIssueHistoryHome.aspx?IId=19952
    The messages that your Royal College was putting out confidently last week – about ‘finally putting to bed the controversy on antidepressants’ – are deeply alarming, knowing what we have seen and learned over the past 5 years. Of course this message is likely to further result in patients not being believed by their doctors – and further neurological harm (from the prescribed drugs) being sustained by countless unsuspecting people. And of course, as you say, most antidepressants are actually prescribed by GPs, so please do link in with the GP College.
    I urge you to look at this honestly and with true human compassion.
    Kind regards
    Marion

    (Stevie Lewis – petitioner for the Welsh Petition also wrote to Wendy Burn at aound the same time)

    Like

    • MARION BROWN says:

      NOTE: the ‘leaflet’ that Wendy Burn mentions (that she ‘hasn’t seen before!) in her 23 Feb Tweet at the top of my post above used to link to the RCPcychiatrists survey and advice about ‘Coming Off Antidepressants – published 2014 and due for review Oct 2017. This ‘leaflet’ was taken off the RCP website on Monday 26 February and the link defaulted/defaults to their webpage ‘Antidepressants’.

      Like

  6. fhfrench says:

    Thank you very much, Marion for appending further emails and for explaining that the leaflet on antidepressant withdrawal was removed from RCPsych website. I have written about this previously in my blog.

    Like

  7. Marion Brown says:

    For the record – I would like to add a further exchange that I had with Wendy Burn end Oct/beg Nov 2018

    Sent: 30 October 2018
    To: Wendy Burn, John Crichton
    Subject: Unanswered email 25 February 2018
    Dear Wendy and John
    I am very deeply troubled to see what has happened since my brief exchange of emails with Wendy in February [email 25 Feb copied to this email]. I received no further response at that time, although I did write (to Wendy) again on morning of 27 February.
    Individual patients have been desperately trying to communicate via twitter etc. and now it is becoming apparent that RCPsych and RCGP are actively trying to label desperate people as nasty and offensive, accusing them of harassment, and making out that individuals are being incited by ‘patient groups’ or others. I can assure you that our own self-help patient group has no funding whatever, no resources (apart from ourselves) and is simply a hotch-potch collection of individuals who have found themselves floundering in a terrible and frightening pond and have been trying to support each other, in the complete absence of any (sorely needed) professional understanding and support.
    Our Scottish and Welsh public Petitions have continued to progress through proper process, but take time and meanwhile people suffering become more desperate, even more compromised and several have died or taken their lives, unable to go on suffering, even since we communicated in February.
    I understand that you will be meeting with representatives of patients in November and also with John Crichton. I would like to take this opportunity to share what we have pulled together from the (still gathering) patient evidence submitted for our Scottish and Welsh Petitions. I have written about this for BMJ and BJGP, referenced here:
    https://bjgp.org/content/68/674/442/tab-e-letters#an-explanation-for-many-cases-of-mus-look-at-the-patients-lifetime-medication-history .
    https://www.bmj.com/content/356/bmj.j268/rr-18
    I hope this will go some way to facilitating genuinely progressive discussions in November to acknowledge, and take steps to do something about, the very serious implications of these issues. The longer this is not recognised, the worse the situation is becoming – and the more people (patients and doctors who are also patients) suffering harm or potential harm.
    Kind regards
    Marion Brown
    @Recover2renew

    From: Professor Wendy Burn Sent: 30 October 2018 17:31
    To: Marion Brown
    Will any reply be treated as private or will it be shared on social media?
    Best wishes
    Wendy

    From: Marion Brown Date: 30 October 2018 at 17:46:53 GMT
    To: Professor Wendy Burn
    Wendy and John
    I am happy for you to share my email(s) with anyone that you wish to share it/them with.
    I am not a ‘blogger’ – so will not be doing any blogging myself.
    I would prefer that whatever you might write, you would feel similarly comfortable, should I wish to share it.
    Our petition is a collective public petition, for which I agreed to be the ‘named petitioner’.
    That is the spirit in which I am writing to you both – as elected representatives of the Royal College, with responsibility to represent and lead the College.
    I am personally very deeply concerned with what I am seeing ‘on twitter’.
    Kind regards
    Marion

    From: Professor Wendy Burn Sent: 31 October 2018 15:20
    To: Marion Brown Cc: Marion Brown; John CRICHTON; George Roycroft
    Subject: Re: Unanswered email 25 February 2018
    Dear Marion
    Thank you for sending through the links to the petitions and journal articles, which I have shared with colleagues and our policy team.
    The College has in no way made assertions or accusations about individual patients in the way you describe. We are keen to engage constructively on this issue, and I have asked the College’s Head of Policy and Campaigns (George Roycroft) to contact you to discuss this further. I understand you previously had contact with him before he joined the College.
    Best wishes
    Wendy
    Professor Wendy Burn

    From: Marion Brown Sent: 31 October 2018 15:52
    To: Professor Wendy Burn Cc: Marion Brown; John CRICHTON; George Roycroft
    Subject: RE: Unanswered email 25 February 2018
    Dear Wendy
    Thank you for this reply.
    I do indeed know George Roycroft and worked with him on this same issue when he was at BMA.
    Kind regards
    Marion

    From: George Roycroft Sent: 02 November 2018 09:22
    To: Marion Brown
    Subject: RE: Unanswered email 25 February 2018
    Dear Marion
    Nice to hear from you. I’ve a lot on next week, but have some time the following week for a phone call.
    Could you do either after 15.30 on 12 Nov, 11-12 on 13 Nov or 11-12 on 14 Nov?
    Best wishes
    George

    2 November 2018
    Dear George
    Thank you for writing.
    I am not willing to have any discussion on these issues by telephone as I consider this to be completely inappropriate now.
    Of course we have met and spoken at length in the past, when you were working on these same issues with the BMA.
    If you wish to communicate with me now, in your current role with the Royal College of Psychiatrists, by email or other written means, I will consider this.
    I will not be treating any new communications as ‘confidential’.
    Kind regards
    Marion

    Like

Leave a Reply to fhfrench Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s