Pain, grief, loss, regret

I will never be able to come to terms with the fact that I have spent my entire adult life slowly killing myself with the drugs prescribed to me by my doctors. The pain is just too deep and unbearable. I find nature provides some respite, and for that I am glad but for the most part the pain is there all the time, it just fluctuates in intensity. I try to make the best of my days because there is no other choice.

As a young woman I thought I was doing the right thing. It started off with jerking of my arms and legs, a referral to neurology resulted in the prescribing of a benzodiazepine. These drugs were brought to market without any due warnings about dependence or the horrific ordeal that withdrawal could be. When my health rapidly deteriorated I was said to have had a “nervous breakdown”. As I had no knowledge of what these drugs could do I accepted that explanation. if I had known they had similar effects to alcohol, I would not have been interested in them at all.

I was a student, training to be a teacher. I realised I could not carry on with my course. I became more and more depressed and I took an overdose. This led to a referral to psychiatry. No psychiatrist ever considered the possibility that my rapid deterioration in health was due to the benzodiazepines. Although they did not offer drugs immediately, the group therapy I took part in was totally useless. I was so emotionally blunted and impaired how could I ever discuss how I was feeling? As my condition did not improve and instead got worse, my psychiatrist started prescribing antidepressants. They were terrible drugs, and I was now a drugged zombie, finding it hard to even stay awake. However I had been persuaded that antidepressants were the treatment for “depression” which was my diagnosis. Thrown into the mix was the suggestion that I had a personality disorder, that made matters even worse. As someone with low self esteem, to be told that was just another blow with which to make sure my self esteem would get even worse. And so I was now physiologically dependent on two terrible classes of drugs, but the word dependence was not a word I ever heard uttered. No advice was ever given about slow and gradual tapering, the best I got was cut in half, and cut in half again. No one ever mentioned recovering and leading a normal life which was my goal.

It is completely unsurprising that my state of health continued to worsen. I experienced constant suicidal ideation and made several attempts on my life. One nearly fatal. Still I had no idea what was wrong with me or why I felt this way. My psychiatrist then suggested I be sectioned and offered ECT. Thankfully neither I nor my husband were in agreement with him and I point blank refused ECT. There was no way that I would even consider risking the type of memory loss associated with ECT. I didn’t know about the more serious dangers or I would have been even more horrified. The sad thing is whilst I was able to refuse ECT, I didn’t know that I was causing permanent harm to my brain by consuming the drugs.

And so whilst my goal was to get better and lead a normal life, the reality was that I was now killing myself slowly and it started when I was 20 years old, too young to know any better. I think it was about 5 years, maybe a few more, before I finally accepted that I had an illness called depression which would be lifelong and that in fact I would never lead a normal life. After all that was what psychiatrists seemed to expect for their patients. One told me my husband was lucky even to be able to work, most patients could not even do that. Like me, he was given a diagnosis of depression but in time the primary diagnosis became paranoid personality disorder. He had always worked full-time but of course as the years passed, on psych drugs and having ECT, there came a time when he could not work at all and had to depend on welfare benefits. Was it his “mental illness” that caused this decline or was it the effects of drugs and ECT? I will never know. He did say before he died that he didn’t think the drugs had ever helped him and I would have to agree with that assessment. They may have calmed him down at times, but other than that they probably caused more harm than good.

And so I carried on consuming drugs, self-harming on a daily basis, believing I had two medical conditions, one myoclonic jerks (epilepsy as it was described to me) and depression.   And all the time I was simply very unwell from prescribed drugs.   For me it has been a life in chains, a life sentence in a prison, a prison of drugs, never able to break free from them or from the prescribers.  Not a single day of normal functioning, not a single day of good health.   Drug withdrawal on the advice from a GP was catastrophic sending me into a hell I could not even have imagined.  My health is considerably worse than it was on the drugs.  At least then I could walk without any problem and was more independent.   The latest blow has been the loss of the central vision in my left eye.  I wonder what else is to come? 

I noticed that an anonymous Twitter account claiming to be a “family physician” commented that my illness is very much part of my identity.  He said it meaning to cause me hurt, but he didn’t.  It was also unsurprising that he was replying to someone who claims to work as a “therapist”, whatever that is supposed to mean. Of course it is part of my identity, it has dominated every day of my life for nearly 50 years, every hour of every single day a struggle to function normally.  Why would it not be part of my identity?  It is as much a part of me as living and breathing.  I cannot understand the nastiness and vindictiveness of people on Twitter towards the disabled, people attack me when they have never had any prior contact at all and they also attack me knowing full well what my history is.   I liken it to kicking the homeless in the street for a bit of fun and imagine those people trampling over my grave when I am gone.   It no longer surprises me that such attacks often come from those who claim to be working in a caring profession, after all I have experienced so much harm from such people in real life. There are many people working in the mental health system who should not be there, attracted no doubt because they have their own problems but they simply take their problems out on the people they are paid to help.

My time spent in psychiatric hospitals was very much one of being “attacked”. Staff spent their time observing, years of observing, perhaps if they had ever noticed that I was suffering from the disabling effects of the drugs prescribed to me, their narrative would have been completely different, in fact if they had noticed then the narrative could have come to an end nearly 50 years ago. As soon as drugs are prescribed which alter the functioning of the brain, the only thing being observed is drug effects and that should be stated clearly in the medical notes. After that no comment is about an undrugged person until such time as they become drug free.

I came to Twitter in the hope that I could, along with many others, campaign for a better future, unfortunately I do not see many signs that that will come to pass. Making people sick is just far too profitable and there are too many people enjoying a good lifestyle from the proceeds.

What has happened to me can happen to anyone. No doubt millions have suffered similar throughout my lifetime and millions will suffer similar long after my death. Always follow the money and understand our lives are seen as entirely disposable if someone somewhere can make a profit.

How many lives have been ruined by psychiatric drugs? The harm will never be quantified but it must be absolutely massive.

Anti-vax – another vacuous label to be tossed around without any intelligent thought behind it

I do take screenshots and put them in my blog. As someone who has lost nearly 50 years of my life to iatrogenic harm, I write mainly about the corruption in the Pharma industry and the extensive harm to millions of patients from psych drugs all for the sake of profit. Some people do not like my blog but I keep it going to inform others to look after their own health and not to allow others to destroy it under the guise of “medical advice”.

The week following the interview with Dr Ellie Cannon, GP, about antidepressants on ITV This Morning

I have posted a complaint made to the GMC by John Perrot about the interview with Dr Ellie Cannon, it outlines what was wrong with the interview. Most people will not know who John Perrot is. He is a veteran campaigner on prescribed drug dependence, himself harmed by benzos many years ago and still suffering. today. He has seen all the lives ruined over several decades. He hasn’t just been around for a few years and decided on a whim to report Dr Cannon to the GMC. He has worked tirelessly to ensure other lives could be saved, and serviced the All Party Parliamentary Group on Involuntary Iatrogenic Addiction which was the common terminology at the time but has now been replaced with Prescribed Drug Dependence.

Complaint to GMC re ITV This Morning interview with Dr Ellie Cannon, GP.

I also wrote about my personal reaction to the interview with Dr Cannon here.

Complaint to GMC re ITV This Morning interview with Dr Ellie Cannon, GP.

Since writing about my immediate reactions I have engaged with many people on Twitter, I have been utterly dismayed by what I have seen. This a fairly typical reaction, patients and professionals making valid complaints about misinformation in a television interview potentially endangering patients is described as “vilifying a GP”. Did this doctor not stop to think that we have all been campaigning for years? Indeed some have been doing it for decades and their justified anger was expressed in justifiable complaints. Did this doctor not understand that countless patients have lost their lives or have been seriously damaged with lifelong injuries?

Meantime, Dr Cannon refused to engage with anyone providing negative feedback on Twitter, apart from blocking or being sarcastic then she decided to block/mute all believing she is being abused. As a medical doctor, did it not occur to her that with so many complaints from different quarters that she herself might actually be the problem. She responded to anyone who praised her for her interview, none of these people seemingly having any idea of the misinformation contained in it.

This is but one example of the derogatory comments made about patients and professionals making valid and legitimate complaints about the television interview, complaints made out of concern for other people’s lives, it is a sad day when professionals think that people who are concerned about death and disability are to be sneered at with contempt.

Dr Cannon clearly was able to tweet as she tweeted this and responded to people who congratulated her on her interview. She chose to engage with no-one providing critical feedback and now claims that she is being “attacked” for “giving NICE backed medical advice”. Of course doctors can simply say they are following NICE guidance and they are legally covered, the fact that many patients are dead and disabled because they followed this advice is largely immaterial

This is another comment to me by Dr Shallis-Knight telling me what I should and should not be doing. I am campaigning about mass fraud and deception by the drug companies, creating generations of misinformed doctors misinforming patients and causing widespread misery, disability and many, many death, yet I am to ignore all this according to this one person. Do I not decide for myself what I campaign about and what my focus is?

Meantime we have professionals, including psychiatrists, praising Dr Cannon for her interview and circulating it on social media. We must take it from this that any professional who did this either does not care what information is provided to patients and the public or they are poorly educated to know the facts about antidepressants. I think we can all work out what the reasons are likely to be.

In the midst of these events, we heard the devastating news that Dr Ed White, a much valued member of the prescribed harm community had taken his own life. Such news is something we have to deal with on a regular basis. I did not notice any professional who chooses to denigrate the prescribed harmed community and its members offering their condolences for the loss of Dr White’s tragic death. Why is that? Is it simply because he took his own life due to the devastating harm from antidepressant withdrawal? I suspect that is indeed the case.

A tribute to him can be read here.

https://www.madintheuk.com/2021/10/rip-ed-white-advocate-researcher-and-supporter/

This is another response to Dr Cannon from a Canadian psychologist, well known for his animosity and disdain for harmed patients. He describes the innocent victims of widespread fraud and deception as well as concerned fellow professionals with the same concerns as “anti-psychiatry zealots”. This is a deliberate strategy to discredit honest and genuine people who simply wish to prevent harm to others and to save lives.

This is another reference to “zealots” in other words anyone who dares to challenge the widespread fraud and corruption perpetuated on millions of unsuspecting patients and who wishes to save lives and put an end to the needless suffering.

This is an example of another psychologist circulating the interview with Dr Cannon. Why did he do this? Is he poorly informed about antidepressants? Did he not notice any of the mistakes? Did he simply wish the public to be misinformed so that they would be more likely to consume antidepressants? What sort of game is being played here.

It is unsurprising that Dr Cannon would come out with a trite and boring response, oft repeated by those who wish to discredit those who are concerned about the widespread harm to patients from psychiatric drugs and practices including forced treatment.

And so today we have a tweet from Dr Annie Hickox spouting nonsense about people trying to silence a professional for talking about their lived experience. Dr Cannon was on the TV to inform patients she singularly failed in that endeavour and so all complaints about that are perfectly valid.

And a psychiatrist in this screenshot is clearly trying to discredit Harriet Vogt suggesting she was advising followers to report Dr Cannon to GMC. If you read her tweet she clearly provided a link to OfCom. She is neither a doctor nor does she have 1700 followers. Why all the attempts to smear people trying so hard to improve patient safety and prevent suicides and other patient harms? It makes no logical sense at all. No one wishes to take Dr Cannon’s livelihood from her, the concerns are about her lack of knowledge as demonstrated during the TV interview.

To finish off, I present Dr Joel Pittaway, have never encountered him before but he is clearly of the view that those of us campaigning about medical harm, particularly harm from prescribed drugs, are “loners hiding in your council flats with uncontrolled Internet access”. Complaints have been made about his unacceptable behaviour and he has deleted his Twitter account. This man will be consulting with patients whilst holding these types of attitudes about people living in council accommodation.

A formal letter of complaint has now been sent to ITV This Morning. It can be read here .

Open Letter to This Morning: “The truth about antidepressants – What you need to know?”

My despair when I listened to Dr Ellie Cannon on ITV This Morning

I became aware of this interview via Twitter.

https://www.itv.com/thismorning/articles/the-truth-about-antidepressants-what-you-need-to-know

I started to listen to. it and all I felt was anger and despair. Dr Cannon said she takes antidepressants and they help her to live her best life. She agreed that antidepressants are one of the most commonly prescribed drugs and that she prescribes them often. She made no attempt to present to the viewers they many adverse effects associated with these drugs, she did mention tiredness, if only tiredness was all there was to worry about. no mention of akathisia, sexual dysfunction, emotional blunting, changes to the functioning of the brain, severe withdrawal effects. She did say that there were withdrawal effects and that tapering over a matter of weeks was advisable of course it can take months or even years to get off antidepressants and even then the harm may well have been done and recovery is not guaranteed by any manner of means.

She is the typical patient who derives benefit from the drugs. Wants to reduce stigma and promote the benefits. Indeed she wants consumption of these drugs to be normalised and even went as far as to say it is like insulin for diabetes / blood pressure pills. This false analogy is totally misleading, there are no blood tests prior to prescribing antidepressants, there is no measurement of the neurotransmitters in the brain to identify a need for serotonin. Indeed there has never been any scientific evidence to confirm the theory that lack of serotonin is a cause of depression. She was basically promoting these drugs, failing to warn of adverse effects, giving false information.

Why was I so angry? As someone seriously harmed by these drugs as well as benzodiazepines I have been campaigning for years to counter this false narrative. I have brain damage. No one pays me a high salary to do any of this. I could just not care and leave others to be brain damaged like me. I could do nothing at all. And here we have a highly paid GP getting money for appearing on the telly and she does not even have the necessary knowledge to be speaking let alone advising any of her many patients. She mentioned a recent study of antidepressant withdrawal reported in the press, it was clear she had not even read it, she did not understand it and just repeated what was in the the press headlines. It is appalling.

As if this was not all bad enough she ignored all critical feedback on Twitter telling her she was wrong. She blocked at least one person and insulted another, people with more knowledge than she has. She sarcastically referred to a zoomocracy whatever that is and an echo chamber. This sort of arrogance coupled with ignorance is exactly what is killing patients.

To top all this psychiatrists such as Wendy Burn, former President of the Royal College of Psychiatrists, retweeted this interview. Did she even listen to it? Did she condone its content? Or was she just retweeting one of her medical chums just because she is a chum. Perhaps that was what she did.

And so it is left to patients to make formal complaints because we know many patients killed or disabled by these drugs, killed by arrogance and ignorance. Indeed patients form most of the support online for other harmed patients because medical doctors certainly aren’t providing that support. People may think my anger is over the top, it isn’t. This sort of behaviour is killing trusting patients whose only mistake was to walk into a consulting room and to consult with an ignorant doctor like Dr Ellie Cannon.

This TV interview exactly demonstrates the problem. Ignorant doctors brainwashed by psychiatry and the drug companies who have no idea what they are doing and do not have the knowledge to be prescribing powerful neurotoxins to vulnerable people, yes vulnerable, many who seek help in times of distress are indeed vulnerable.

I am still seething with anger and the pain I feel is intense. May those who are dead rest in peace, I certain cannot get any peace having to continue to campaign about the devastating harm caused by antidepressants and benzodiazepines.

My favourite rock group, a favourite song. As a teenager I had no idea what the words were about, I like the song, I was yet to know that I would lose my entire adult life to benzodiazepines. If you think things have changed since the 1960s, they have not, they have remained the same and are now probably worse.

Take your meds, enjoy your day, live to regret when the harm is done to you.

Complaint to GMC re ITV This Morning interview with Dr Ellie Cannon, GP.

Interview clip.

https://www.itv.com/thismorning/articles/the-truth-about-antidepressants-what-you-need-to-know

Complaint to the GMC

Dear Sir/Madam

I sent you the complaint (below) on 8 March 2021 and received a reply, (also below), and have heard nothing since. I wish to formally complain about this lack of response and also expect a reply indicating what actions if any are to be taken against Dr Cannon. Dr Cannon also appeared on ITV This Morning yesterday, Monday 11 October and was talking about antidepressants.

Antidepressants have been the subject of a PHE review on prescribed drugs causing dependence. As a result of this review there is a NHS England oversight group working on implementations resulting from the review. Also, as a result of the review the RCPsych and NICE have amended their guidance on antidepressants especially with regard to side effects and significantly underestimated withdrawal effects.

It seems Dr Cannon when talking about antidepressants yesterday on This Morning was either not aware of this or chose to ignore the latest research on the dangers of antidepressant use. Dr Cannon made many false and dangerous claims regarding antidepressants on the This Morning programme. These included:

1.    Antidepressants are harmless. If you do not have depression then the antidepressants do not do anything.

2.    “I take antidepressants for anxiety – they take away the physical symptoms of anxiety.

3.    We need to think of antidepressants like diabetes drugs which are necessary long-term.

4.    There are myths about antidepressants like they make you like a zombie.

5.    Antidepressants stop bad thoughts.

6.    People should expect to be on them long-term to be beneficial.

7.    They are not addictive.

8.    She quoted a study quoted in the Times showing 56% of patients coming of antidepressants were likely to relapse. She did not quote any results of a recent study by Dr James Davies showing the harms caused by antidepressant use, including prolonged withdrawal symptoms which Dr Cannon denies, but merely states you might feel a bit “dopey” when withdrawing too quickly. She then goes on to say withdrawal should be carried out over a number of weeks. In reality, many patients have to micro-taper over a long period to minimise the constellation of long-term withdrawal symptoms.

9.    Dr Cannon, who takes antidepressants herself, ended the programme by paying brief lip service to drug-free therapies and said that for many people tablets taken long-term are a good idea.

There is no scientific evidence to support any of Dr Cannon’s claims. However, there is evidence to support the harms caused by antidepressant use, such as this study by Dr James Davies https://pubmed.ncbi.nlm.nih.gov/30292574/

I would like to add all the above to my original GMC complaint on 8 March to which I have heard nothing and would like an explanation as to why the GMC has failed to respond.

To remind you, I complained because Dr Cannon was offering advice on the z drug Zopiclone in her article in the Mail on Sunday 6 March 2021. https://www.dailymail.co.uk/health/article-9333295/DR-ELLIE-CANNON-sleeping-pills-GP-cut-mine.html?ito=facebook_share_article-top&fbclid=IwAR1YtAFq06hrUoKKTl6M55_hbL-JRyWHggWsqa_HMpeMZQ3UA6NPBVGQEt4In her article Dr Cannon incorrectly quoted the NICE guidelines for withdrawal from Zopiclone as 4 – 6 weeks whereas they are in fact “16 – 20 weeks or longer” as written in the online NICE guidelines page https://cks.nice.org.uk/topics/benzodiazepine-z-drug-withdrawal/management/benzodiazepine-z-drug-withdrawal/

This is further dangerous advice from Dr Cannon.Also, Dr Cannon in the same article said “there are also many specialist support services nationwide for patients trying to come off sleeping tablets safely”. Dr Cannon has no supporting evidence for this incorrect claim.

I personally conducted a study some years ago showing that nearly 90% of local areas had no such services. My study formed part of the PHE review and one of the recommendations is for national dedicated withdrawal services.

Yet another false claim by Dr Cannon.I consider Dr Cannon’s many unsubstantiated claims in the national media on drugs causing dependence to pose a danger to public health.At the very least Dr Cannon needs substantial retraining on these drugs.John Perrott (Former researcher for APPG Involuntary Tranquilliser Addiction chaired by Jim Dobbin MP)

Yours,
John Perrot

Dear Sir/Madam,

I wish to complain regarding the advice on Zopiclone withdrawal given by Dr Ellie Cannon published in the Mail on Sunday 6 March 2021, https://www.dailymail.co.uk/health/article-9333295/DR-ELLIE-CANNON-sleeping-pills-GP-cut-mine.html?ito=facebook_share_article-top&fbclid=IwAR0fXtxJbS7QahRTkbpR3iPpuUNlzYfI4EZCxtPDgkqXqHaMNwEzfiwOgH8

The information she gave and published nationally is wrong. Dr Cannon states that the period required for Zopiclone withdrawal according to NICE guidelines is only 4-6 weeks. The NICE guidelines actually state that the estimated total withdrawal period for Zopiclone is 16 – 20 weeks or longer https://cks.nice.org.uk/topics/benzodiazepine-z-drug-withdrawal/management/benzodiazepine-z-drug-withdrawal/

The few UK specialist withdrawal charities (there are no NHS withdrawal services) state that even this is too quick. 

Patients following Dr Cannon’s advice may well suffer protracted withdrawal symptoms lasting months or years by withdrawing too quickly. 

Dr Cannon also stated that there are “many” specialist services to help with sleeping tablet withdrawal. This is also untrue. There are half a dozen at most.

In my view this is a matter requiring disciplinary action by the GMC.

John Perrott (former researcher, All Party Parliamentary Group on Involuntary Tranquilliser Addiction)

Silencing survivors causes great harm

When we seek help for our deepest emotional and psychological pain, we likely wish to speak to someone who can help us understand the reasons for this pain. Instead of finding someone with the time to listen, someone who can truly empathise and help, we are often offered psychiatric drugs which act on our brains, blunt our emotions, cause sexual dysfunction and render us incapable of truly understanding what is happening to make us feel so desperate and bleak. We naively comply and take said drugs in order to try to feel better, tolerating the many adverse effects, wrongly believing what we do is for our own benefit. We may even try many drugs and when they do not have the effect of making us feel better, ECT is likely to be offered. After going through this torturous process, the end result may be serious damage to the brain and the inability to function as a human being. We have reached the end of the road, followed the doctors’ advice, only to find we are in a far worse state than when we started, further and further away from understanding the causes of our original pain. We start to reach out to others who have endured the same process and we cry out in our pain because it is the only way that we can now survive.

We now understand that we were lied to, we were deceived, we were not even warned of the risks, all this pain and suffering for nothing. To silence survivors in pain is to inflict further harm and this can only make suicide ever more inevitable. I wish that others would understand this, but those who have not had to endure this road, may be unlikely ever to do so. Survivors congregate on social media, they do not seek the help of mental health professionals, for those professionals are likely to be the last people to know what they have done to cause this level of harm.

I have not written in my blog for nearly three years, I lost the ability to write and articulate myself, just part of the process of trying to deal with a brain injury, this has meant that once again I have had to be silent, unable to say what I feel. My experience of psychiatry has been the most harmful experience of my life, constantly silenced, never allowed to heal, never allowed to be a whole person, always surviving as a disabled wreck. Social media is the best place to meet with other survivors and to express our pain, but even there it can be dangerous to be honest, and we run the risk of being silenced once again. Survivors are insulted by the use of language such as trolls, Scientologists, cult members, pill-shamers to name but a few. Only the ignorant regard survivors in those terms, and nothing can be done about their ignorance. Without empathy and compassion there can be no healing and the best source of healing is to connect with other survivors, their compassion is without limits.

Further patient concerns re PHE review sent to Matt Hancock

Mick Behan is a veteran campaigner on benzodiazepines and has an extensive knowledge of the subject.  He previously wrote to Matt Hancock, Secretary of State for Health, with concerns about the PHE review on prescribed drug dependence.

Patient concerns re PHE Review emailed to Matt Hancock today

Today, he has sent further concerns to Matt Hancock, as follows.

Dear Mr Hancock,

Since I sent you my complaint by email on 21 September 2018 about the PHE review on addiction to medicine, additional information has been posted on the PHE website:

https://app.box.com/s/bcvdevm1pu5v853p8nn7pkh3rf6qt095/file/321984734114

I would therefore like to add the following points to my complaint.

6. Clinical Trial Evidence

The National Guideline Centre (NGC) has been appointed to conduct a literature review for PHE

https://app.box.com/s/bcvdevm1pu5v853p8nn7pkh3rf6qt095/file/315229666310

The NGC has now issued a call for evidence which explicitly invites pharmaceutical companies to submit unpublished trials to the NGC with prearranged confidentiality offered by the NGC.

The NGC is considering new drugs in this exercise. This is further evidence that the PHE ‘review ‘ of addiction to medicines is in reality a launch platform for anti-addiction drugs.

‘Anti-addiction’ drugs are manufactured by Braeburn, Martindale and most prominently by Indivior who are promoting SUBLOCADE, a depot injection targeting opiate painkiller addicts.

If Sublocade has to rely upon unpublished confidential trials this is a red flashing warning light of another drug disaster in the making.

‘Anti-addiction drugs’ is an oxymoron in itself. No drug can cure the addiction or damage created by a previous drug.

Replacement and substitute drugs have always proved more toxic and addictive than the previous drugs. Each new drug, benzodiazepines, z drugs, SSRIs, has been introduced as safe and non-addictive by their manufacturers.

7. (See point 3b in the previous email). The exclusion of patient and other dissenting opinions is reinforced by the NGC with no explanation; ‘the views, experiences and opinions of individual professionals, researchers, commentators or patients will not be able to be included’.
8. Conflicts of Interest (Point 4 in previous email)

PHE has also now published the names of the review’s ‘Project Team’.

These names were anonymised in previous minutes as ‘members of the Project Team’ but are now announced as Pharma heavyweights with significant conflicts of interest – Mike Kelleher, John Marsden and Gary Stillwell.

https://app.box.com/s/bcvdevm1pu5v853p8nn7pkh3rf6qt095/file/322601907834

Also, the Programme Manager is announced as Steve Taylor who is an aggressive campaigner against drug withdrawal services.

There is no mention of expertise in drug-free withdrawal goals within the Project Team. This is the central point of my complaint; the outcome of the review is predetermined by its chairperson, by the members’ links to pharmaceutical companies, by the exclusion of patients and by the ToR.

There are to be no withdrawal services.

The review, which was intended by the Minister to be an investigation of how to reduce addiction to medicine, has been turned by Rosanna O’Connor into a project to prescribe even more drugs.

I look forward to your reply.

Yours sincerely,

 

Michael Behan (Former researcher for the office of Jim Dobbin MP and co-founder APPGITA)

 

Co-signatories

Fiona French – Expert patient by experience

John Perrott – Former researcher, APPGITA

Andy D’Alessio – Expert patient by experience

Alyne Duthie – Expert patient by experience

Barry Haslam – Ex-Chair Oldham Tranx

Graham Smith – Expert patient by experience

Pamela Wilson – Expert patient by experience

Jen Hider – Expert patient by experience

Janet Crouch – Expert patient by experience

 

Blocked on Twitter by Prof Clare Gerada and Emily McKee, dietician.

My health and my life have been destroyed by iatrogenic harm from benzodiazepines and antidepressants.  I therefore spend my time campaigning to raises awareness of the extremely damaging effects of these drugs in order to prevent harm to others.  I believe this is an extremely valuable thing to do particularly as I am in bed most of the time, having been left physically disabled and cognitively impaired.   After all the medical profession seemed largely unaware of the immense problems associated with antidepressant and benzodiazepine withdrawal or the widespread nature of these problems.  As patient campaigners,  we have liaised with the British Medical Association, the All Party Parliamentary Group on Prescribed Drug Dependence, we have petitioned the Scottish Parliament and contributed to many other aspects of a very valuable campaign.   Public Health England is currently carrying out a year long review of prescribed drug dependence and will report in 2019.

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

I recently responded to a tweet by The Bipolar Doc as can be seen from this thread. I very much appreciated the kind response.  I always appreciate kindness and understanding from a medical doctor even if it is only on Twitter and would hope I always express my gratitude.

I am reluctant to get into a conversation about this but I was trying to raise awareness that doctors are humans.
We have feelings. We are patients too.
So yes we do understand what has happened to you is horrific.
That is the point.

— The Bipolar Doc (@doc_bipolar) October 5, 2018

I responded to Bipolar Doc in good faith.  I have been very distressed in recent years by the lack of honesty, empathy and compassion from a series of doctors I have consulted locally about the disastrous consequences to my health from prescribed drug withdrawal which have left me so very disabled.

The next day I was astonished to find that Prof Clare Gerada had sent me the following tweet and that she had blocked me on Twitter.  I had not directed my comments to Prof Gerada and any suggestion that she is responsible for the behaviour of  my doctors in Scotland is quite ludicrous.   She said:

“Your tweets are affecting my mental health. They distress me. You appear to blame me for things outside my control. I am sorry but I am going to block you.”

I have criticised Prof Gerada for the fact she downplayed benzodiazepine withdrawal on national radio and proceeded to do the same in a recent Royal Society of Medicine podcast with regard to SSRI withdrawal.   She has a great deal of influence and the prescribed harmed community has struggled hard to get the issues around withdrawal taken seriously.   She could have used her position to assist us instead of making things more difficult for us.  Prof Gerada has shown no empathy or understanding towards those of us who campaign to prevent further harm to patients and this of course replicates the behaviour of most of the doctors I have consulted locally.  I find it baffling.

I was then made aware that Emily McKee, dietician, had joined the thread and had posted the following comment.

“Block and delete lovely, When people are so set in their views, you have no chance of changing them, its not worth your emotional labour.   Save that for people whose minds are open at least a little, enough to listen and consider.” 

Emily, a healthcare professional, knows nothing about me.  She has never communicated with me.  She knows nothing about the campaigning work I have undertaken.  Yet she has decided I am “set in my views” and I am not worthy of “emotional labour”.   Her mind is so closed that she proceeded to block me so I cannot even respond. I doubt she even realised what she was doing or how closed her mind appears to be.  She has also blocked a fellow campaigner, Andy d’Allesio, himself subjected to appalling treatment by psychiatry.

Is this really acceptable behaviour for a healthcare professional on social media?  

Emily has made snap judgements about people she knows nothing about and has made derogatory comments to boot.

Or perhaps she has been following our campaign for a long time.  Perhaps she could let me know. I would be interested in her views even though she is clearly not interested in mine. I hope she does not judge her patients in the way she has judged me.

I would appreciate an apology from both Prof Gerada and Emily McKee.  They know how to unblock me and I am ready to communicate with them.  Or they can respond on my blog.

I cannot for the life of me imagine blocking someone on Twitter when I know nothing about them and have never communicated with them unless I suspected some sinister purpose.  Closed minds indeed.  The irony of it all.

 

I have received two responses from Emily McKee.

“As people who have also experienced trauma, I would have thought that should be quite understandable to you and Fiona.  I suggested that Clare do the same for her mental health with the same sentiment.  I don’t tell you how to deal with your trauma. I’d appreciate the same courtesy”

“You don’t seem to realise that I was not responding as a professional but as a patient.  I choose to block some topics from my timeline that remind me of my own trauma within the mental health system as a PATIENT.  I avoid certain triggers for my own wellbeing because of trauma?”

I can understand why people wish to avoid triggers if they have been traumatised and everyone can take measures to protect themselves.  However, this can be done without criticising others who are expressing genuine opinions.  It is possible to mute a thread for example without making negative judgements about the other participants.  I remain disappointed that I and others have been judged without good reason.   I also remain baffled about why my tweets about my doctors in Scotland should be distressing to Prof Gerada.  Perhaps Emily is unaware that Prof Gerada prefers not to engage with campaigners so I am not sure how it is possible to have a dialogue in those circumstances.   But apparently it is we the campaigners who have the closed minds.

Interesting conclusion.

Were the above exchanges contrived, I suspect they were, I do not find any of the above genuine.  I see things much more clearly now that I am not on prescribed medication, the drugs clouds one’s judgement greatly.  Traumatised patients do not generally denigrate other traumatised patients as Emily McKee has done without good reason.

Unfounded accusations and insinuations on Twitter

Campaigning on prescribed drug dependence and iatrogenic harm is not easy.  For the most part people are respectful and polite and I have rarely had to block anyone for being rude and obnoxious.  We all misinterpret things at times but usually apologise for it when the misunderstanding becomes clear.  I hope that I remain polite whilst also challenging the views of others.  I am not normally prone to paranoia but I have become very suspicious recently of various false accusations and insinuations and all from medical doctors. I find it very interesting that it should be medical doctors.

First, a doctor called “Frontline Shrink” said he had been bullied by many people after a few tweets were exchanged with one or two campaigners.  I asked him to clarify how many people he had been bullied by but he did not respond. I had simply asked him to clarify a tweet as it did not make sense to me nor did it make sense to others in the thread.  I did nothing whatsoever to bully him.  

It  was later suggested on Twitter by “Physician Associate” that I was part of a “band of bullies”.  I had bullied no-one but was taking part in a conversation with other campaigners. He happened to enter the thread and someone responded briefly.  The conversation between campaigners continued and was not directed at Physician Associate.  The generalised comment was withdrawn later in the conversation.

This was followed soon after by insinuations by Dr Samei Huda, psychiatrist that I and other campaigners may support the Far Right and Scientology. Dr Huda has not apologised for this insinuation.  He seemed to think he could bully us into agreeing with his statements about another campaigner, Bob Fiddaman, and when we did not comply he made his appalling comments about myself and Andy d’Alessio.

“And as for Andy Alessio and Fiona French not finding far right radio stations interviewing  Klansmen as not something to worry about – well look at your values”

What he did not know was that due to cognitive impairment I could not follow the thread which I was supposed to be commenting upon.  Even if I had been able to follow it I may have chosen not to comment as I normally take time to mull things over.  I believe it is my right to do so without insinuations being made about my values.   In any case I do not like being bullied into doing something, whatever it may be.  I prefer to make my own decisions.

Today Dr Huda has commented that some people in a thread of which I was a part wanted benzos to be withdrawn when in fact one person suggested it and it certainly was not me.  I do find it rather curious that all this happened before and after the recent press coverage of the resignation of Prof David Baldwin when campaigners were accused of carrying out a sustained campaign of abuse via social media.

I do not think these incidents are innocent or accidental.  Quite the opposite.

Screenshots have been taken of the above comments.

 

Resignation of Prof David Baldwin as expert witness to PHE Review

Three days ago, Prof David Baldwin’s resignation as expert witness to Public Health England review on prescribed drug dependence was announced in the national press.

https://www.dailymail.co.uk/news/article-6203875/Government-drugs-advisor-QUITS-sustained-campaign-abuse.html

https://www.thetimes.co.uk/article/drugs-adviser-david-baldwin-quits-after-being-branded-worse-than-hitler-in-online-abuse-row-srtqltmfs

Great play was made about comments in a single blog where Prof Baldwin was described as a “Pharma-Whore” and a comment appended to that blog where he was likened to “Hitler”.  This hardly constitutes a sustained campaign of abuse. No mention was made that either the blogger, Truthman, or the commenter had both been seriously harmed by Seroxat, or that Prof David Baldwin had promoted Seroxat as being safe.   Neither the blogger nor the commenter were contacted by the press to explain why they had used these terms to describe Prof Baldwin.  The blog and comments can be read here.

https://truthman30.wordpress.com/2018/09/12/what-constitutes-a-pharma-whore-and-what-doesnt/?wref=tp

If any psychiatrist cares to come and spend time in the online prescribed harmed community they would find that the rage and the hatred for psychiatry is immense because the lives of so many ordinary patients have been destroyed simply because patients trusted their doctors.  The betrayal of trust coupled with the frequent denial of drug harm from the medical profession as well as the debilitating disabilities makes for  regular outbursts of justified rage.  I share that sense of rage looking back on my own life which has been utterly destroyed by the failure of psychiatry to recognise adverse drug effects, instead leading me to believe I had a depressive illness from which I would never recover.  At no time in 40 years was it ever suggested to me that I could possibly function without medication or that in fact the medication was making me very unwell. I believe that the grief for a life lost would be overwhelming but I am protected by the fact that my emotions are dulled as is my brain and so thoughts and emotions are very subdued most of the time.  Outbursts of rage however do happen, usually when I am faced with a doctor.

The Times reported that “David Baldwin claimed that a fellow adviser helped to fan the flames of online abuse in a row over the effects of the drugs.”  I would like to know what evidence exists to support this claim.  The blogger, Truthman, has been blogging for years about Seroxat and GSK, as can be seen from his blog above.

Prof Baldwin was portrayed as a victim, but he is not the victim, the real victims are the countless patients who have either lost their lives or been seriously harmed by SSRI antidepressants.  As Prof Baldwin has extensive ties to the pharmaceutical industry, his role as expert witness to PHE review was inappropriate.   Perhaps any distress caused to him will diminish in a couple of weeks, just as the withdrawal symptoms from antidepressants were said to be short-lived and self-limiting.   Prof Baldwin’s statement about antidepressant withdrawal is said to be in keeping with NICE guidelines, yet the guidelines on depression have since been classed as unfit for purpose.  If they are indeed unfit for purpose, surely it would not have been difficult to retract and apologise for the letter in the Times, given that the information presented was likely to be inaccurate.  The tapering guidance in the NICE guidelines is based on short term clinical trials and therefore do not apply to most patients in the real world where antidepressants are prescribed for many years and even decades.

The following day a second article was published in The Times newspaper.

https://www.thetimes.co.uk/edition/comment/drugs-culture-7bg9j9cqx

This again was written in support of antidepressants as an effective means of treating depression.  However, no question was asked as to why there are 9 million patients on the drugs in the UK when only 2 million are estimated to be suffering from depression and only a fraction of those are said to be receiving treatment.   The arguments about the effectiveness of antidepressants for depression therefore only apply to a small percentage of patients taking the drugs.  The issues are the risks of dependence, the immense difficulties of withdrawal, the fact that many patients cannot get off the drugs and that many are also being left irreversibly and seriously damaged.  There was no mention of this in the article.  Once again it downplays the horrendous symptoms patients are experiencing both whilst taking the drugs and when trying to come off them.   It does not address the issue of whether the harms in fact outweigh the benefits.

“There are side-effects to taking them, and side-effects to coming off them. They do not work for everyone but they are a gain to human wellbeing. Scientists should study them, not attack their advocates.”

The news about Prof Baldwin’s resignation was also reported in the BMJ.  I have written a rapid response, yet to be published.

https://www.bmj.com/content/362/bmj.k4063.full

Rapid Response

As a member of the prescribed harmed community and an active campaigner on prescribed drug dependence, I am fully aware of the exchanges taking place on social media and indeed have played an active part in those exchanges over a long period of time. Patient campaigners are well-informed, articulate and respectful for the most part but rarely is there a genuine dialogue with representatives of the Royal College of Psychiatry. Questions are for the most part ignored and even when engagement does take place it is rarely satisfactory. Prof David Baldwin has not himself been involved in any of the extensive Twitter discussions as far as I am aware but they have mostly involved attempts at engagement with Prof Wendy Burn, President of the Royal College. It is therefore extremely disappointing that a few unpleasant comments have been highlighted in the press, taken from a blog and a comment to that blog. The blogger in question has been campaigning for many years particularly on Seroxat and the pharmaceutical industry, and despite his extensive knowledge of these matters he was not himself approached by the journalists in question.

Patients in the prescribed harmed community welcome the resignation of Prof David Baldwin as expert witness because of his many declared conflicts of interest. Patients were dismayed by his assertion that antidepressant withdrawal was short-lived for the vast majority of patients, they were further dismayed that there was no clear evidence to support this assertion and no apology or retraction of the letter in The Times. Patients remain extremely concerned about the current Public Health England Review and are particularly dismayed that they have not been invited to give evidence directly. We all view this as a glaring omission and as further dismissal and rejection of the hugely important lived experiences of those patients harmed by drugs of dependence. We are of course free to compile and collate information into a format that is acceptable to Public Health England, otherwise our views will be filtered by professionals into report format. Patients who have been harmed by drugs of dependence will continue to take a keen interest in this review, but will continue to campaign for a public inquiry as this is needed to fully understand why such a prescribing disaster was allowed to happen in the first place.