Last week’s post – 18 percent – raised questions about company sponsorship and seeming patient empowerment websites. A comment by Johanna Ryan afterwards kicked off this follow-up post.
Johnson & Johnson gave NAMI $340,000 last year, and $540,000 in 2016.
Part of that was a dedicated $100,000 grant for “First Episode Psychosis.” This is where things get serious. People of Louis & Zach’s generation – see 18 percent – are very important to J&J just now. Here in the States (and worldwide) there is a very big focus on developing programs for young adults facing a first psychotic episode, with the stated goal of improving their long-term prospects.
Some of these programs are pretty good — innovative, open to exploring the real-life stresses that may have triggered the episode, committed to using meds as sparingly as possible. The Foundation for Excellence in Mental Healthcare helps support a number of these.
Others are just the opposite. J&J in particular is putting its money on depot antipsychotic injections that deliver a 1-3 month dose at a time. They are sponsoring studies where young folks like Louis are essentially given no way out of “medication adherence.” They are placed on depot injections of a fairly high dose of Invega (paliperidone) for two whole years. Many of these young people will NOT be in the first stages of a lifelong disease with a biological basis at all! And even for those who may be, this course of treatment will exact a high price.
THAT is the treatment approach NAMI will “educate” the parents of guys like Louis about. Your kid has a brain disorder that modern medicine understands, but he does not. Lifelong Medication Adherence is his only hope. Do what you gotta do to make that happen — and don’t forget our injectable products! Invega Sustenna (one month, $1667) and Invega Trinza (3 months, $7500).
There are many roots to the concept of recovery in mental health, dating back to Clifford Beers in the early 20th century, working through to ideas of tertiary prevention in the 1960s, when it was discovered that people locked up for a long time became institutionalized and might need to relearn social skills in order to “recover” fully – in order to be able to relegate the illness to just another episode in their life rather than have it define them.
In the 1990s, a new recovery wave swept in, symbolized by movements like Mad Pride, and fuelled by a legitimate anger at a continuing failure of psychiatry to work with the people.
But in the 1990s it appeared a new psychopharmacology, of which Prozac was then a potent symbol, and a new genetics, with celebration of the Human Genome Project, were born and had made it seem a new human was about to emerge. Those who might have been expected to spot slick marketing didn’t.
Against this backdrop, companies marketing the then newer antipsychotics, drugs like Zyprexa, Risperdal and Geodon embraced the recovery message. How else would anyone recover other than by taking their drugs conscientiously?
Seducing teenage boys with designer clothes used to be an easy thing to do. They may have gotten smarter now but a decade ago, I was confronted with a teen who hadn’t committed suicide because I was told – in all seriousness – he wasn’t wearing the right clothes. Couldn’t be found dead in the wrong clothes.
Its even easier lead a bunch of shrinks up the garden path, the more sophisticated the easier. A decade ago I participated at a debate in the Institute of Psychiatry:
Swallowing it whole: this house believes that psychiatrists are unable to resist the seductive messages of the pharmaceutical industry.
Cymbalta was not then the blockbuster it is now. Cymbalta is a dustbin drug. Lilly had junked it a decade earlier as unlikely to be a success – but short of other drugs and, perhaps increasingly convinced shrinks would swallow anything, they had brought it on the market.
Invega had just been released with striking images like the one above – striking because the image might convey recovery to some but is also a Freudian slip. Invega is a metabolite of Risperdal. Risperdal breaks down in the body to Invega. You want Invega cheap – just take Risperdal.
So the shrinks were told there is not a thought in their teeny little minds not put there by one pharmaceutical company or another – within a few years they would be prescribing Cymbalta and Invega hand over fist.
They voted against the motion. No – we are sophisticated evidence based consumers they said.
The result – Invega and Cymbalta have since been $3-4 billion blockbusters for pharma.
A tragedy is something someone brings on themselves. Those who have favored recovery and believed more is possible from mental health than we have been getting have in general been anti the idea that schizophrenia is a chronic disease. They see this as a message of doom that militates against recovery.
There is a real opportunity to win and win big opening up. This does not stem from any evidence that talking therapies or open dialogue or other recovery based programs do a better job for schizophrenia than the meds do. When the antipsychotics were used first in the 1950s and 1960s they came with far more in the line of support and recovery groups – at least in Europe – than we have now. These groups along with the meds seemed to work and up to the mid-1960s led to the impression that a full recovery from schizophrenia was possible.
The opportunity opening up now is that schizophrenia is vanishing. This illness appeared in the 19th century and rose dramatically in frequency after that converting asylums from soteria houses where there was an expectation of recovery into warehouses for the chronically ill. There continued to be psychotic disorders where there were full recoveries – 20 – 25% of all psychotic admissions – but these were not schizophrenia.
Since about 2005 in North West Wales new cases of schizophrenia have been drying up. We have had almost no new cases for a decade. What we have lots of instead are drug induced psychoses, severe personality problems and some strange motor disorders we’ve never seen before – but not classic schizophrenia.
We published on this years back. The original article speculated about the role of lead in the environment as a causative factor in the increase 150 years ago and decline now but the BMJ didn’t want that in the paper.
Pretty well everywhere I go now or meet people from the US to Australia there is a similar story – of schizophrenia vanished or vanishing, replaced by other problems – although no-one has published about this.
Given this development, the tragedy would be to continue to fight a set of schizophrenia wars – to fight in the trenches over the issue of whether schizophrenia was ever a chronic condition – and fail to notice that there is a real opening to reconfigure services.
Bureaucrats are not interested in what schizophrenia was or is – they are interested in the idea of whether they can save a dollar and whether they can tweak the figures to make themselves look good. If schizophrenia has retreated and psychotic disorders are much more likely to show a full recovery – as they did in the 1850s – what kind of facilities and services do we need. If our biggest psychotic problem is drug induced psychoses, what should we be doing about this?
Is Invega Sustena a good idea when the biggest single killer of patients with schizophrenia is not the metabolic syndrome these drugs cause but suicide in the first year or two after diagnosis linked to taking the wrong meds for them?
The articles on the rise and fall of schizophrenia and what kills patients with schizophrenia are here and here.
Copyright © Data Based Medicine Americas Ltd.
My first introduction to the ‘schitzoids’ was when we moved to Hertfordshire when I was six.
We had gone up in the world big time, as my father had taken a new job in aviation and we had the only detached house in the road of what was then a small village.
A few dwellings down was a crossroads and directly ahead huge black gates.
This was the Mental Asylum.
Accompanying me on my walks to primary school, were mainly men in their pyjamas and dressing gowns and slippers. These people were an accepted part of the village and no one particularly batted an eyelid, they were just unfairly, probably, called the ‘schitzoids’.
It was the same in Argyll, the high street of the larger town, nearby, had this same population wandering about and it was accepted and seemed quite normal.
At that time probably no one wondered about their medication trolley, dished out daily.
When I had the misfortune to find myself in a Mental Asylum, it seemed normal to me to mix around these people. I just had no idea what I was doing there.
How do you go from normality to being in a Mental Asylum when you have nothing to do with anything beginning with ‘Schitz..’
I didn’t know. I just joined the queue for the meds and supposed that the reason I was there was because I was being helped.. Seroxat and Diazepam were the drugs of the day.
Is it just possible that Schizophrenia, which came before Depression, were the blanket terms of the day. Did all these drugs help us or hinder us?
If the suicides from schizophrenia happened from the first diagnosis and medication, what does that tell us about the suicides from those given the latterly new SSRIs supposedly to give us a coping mechanism, not designed to put us in a Mental Asylum..
If schizophrenia is vanishing, will depression, in all its blanketness, vanish, too, once, those responsible for inventing it as a Medical Scourge learn that the medical treatment has created millionaires out of Pharma but paupers out of the dutiful recipients ..
In the Argyll Mental Asylum, I had been called to someone upstairs.
I sat on a wooden bench outside an office with huge oak doors.
The whole corridor was filled with bookshelves which contained small books and large tomes.
Being fidgety, I pulled one off the shelves and started reading.
It was a book about schizophrenia and I was totally engrossed, until a man came out of the doors and invited me in..
Hi Annie – your experience sounds almost like something from another century yet even in the 60’s people who would probably be labelled as having a psychiatric diagnosis now were looked after by our villagers ‘keeping an eye on them’ – one lady with l’learning difficulties was actually the ‘lolipop lady’ , a few men disabled from the war had what would now be called PTSD. one a’recluse’ another wandered around walking for miles just stopping for cups of tea and a snack before moving on – another talked to his voices, all in a fairly small community where they could live freely and out of reach of unwanted ‘treatment’ which would probably be compulsory now., All sorts of differences were accomodated . Of course many people did need to be in a hospital buy many who should never have been there were still incarcerated in horrendous asylums with psychiatric labels and obvious adverse effects of drugs which ensured they could never lead ‘normal’ lives again. Perhaps the next dreaded catch all label and consequent ‘treatments’ will come to be not ‘schizophrenia’ but ‘personality disorder’.
Alastair Campbell – campbellclaret
Wendy Burn @wendyburn 2h
Wendy Burn Retweeted Alastair Campbell
Moving tribute from @campbellclaret to his brother Donald who had schizophrenia. “He lost his mind from time to time. All too young, he lost his life. But right to the end of it, he never lost the music in his soul.”
To Florence yesterday, to speak to the Schizophrenia International Research Society – go on, how many of you knew there was one. Well, there is, and I was very pleased to speak to them with my mental health campaigner hat on, but mainly to talk about my brother Donald, who died in August 2016 after a lifetime coping with this horrible illness. Here is the text of the speech.
‘The shittiest of all the shitty illnesses’ – my speech about my brother Donald to 1,800 schizophrenia experts
Alastair Campbell @campbellclaret
‘The shittiest of all the shitty illnesses’ – Text of my speech to Schizophrenia International Research Society, about my brother Donald and much more
10:37 PM – 4 Apr 2018
Recovery from ..
Many People Taking Antidepressants Discover They Cannot Quit
John Read @ReadReadj 1h
Great NYTimes piece. This is exactly why 30 of us have formally complained against President of UK College of Psychiatrists for grossly minimising withdrawal effects. They have till April 10 to report the outcome.
Dr. Mangin, of McMaster University, led a research team in New Zealand that recently completed the first rigorous, long-term trial of withdrawal.
But one thing is already clear from this effort and other clinical experience, Dr. Mangin said: Some people’s symptoms were so severe that they could not bear to stop taking the drug.
“Even with a slow taper from a drug with a relatively long half-life, these people had significant withdrawal symptoms such that they had to restart the drug,” she said.
Annie – what would be the consequences if the college does not report the outcome?
On April 4, I forwarded this ‘GMC complaints’ to the blog.
I would imagine this, and John Read and Co complaints, should elicit a response, voluntarily or forced.
Apart from that, I don’t know as this is a very new situation for the College and how unresponsive Professors unrespond or respond, will, no doubt, be shared by the complainants when they have something to share, either negative or positive.
Dr Neil MacFarlane MRCPsych @NMacFa 13h
Hello @MITUKteam and @Mad_In_America …I have escalated Lancet/Pariante #antidepressants complaint to GMC…
Dr Neil MacFarlane MRCPsych @NMacFa
GMC complaints about @ParianteSPILab and @rcpsych oligarchy…receipt confirmed…new Blog piece http://drnmblog.wordpress.com/2018/04/03/ …@GMC ‘Duties of a Doctor’…’You must respond promptly, fully and honestly to complaints’…this and 15 other sections contravened.
10:04 AM – 3 Apr 2018
“Risk of suicide” was one of the many reasons given by my son’s psychiatrists for wanting to keep him on medications, not that he was suicidal, but because “statistics show that people with a diagnosis of schizophrenia have an increased risk for suicide during the first five years after diagnosis.” I always felt that the specter of suicide was invoked often for the wrong reasons — not because patients were suicidal, but in order to keep them meds compliant. I was being made to feel irresponsible by continuing to inisist that my son was unlikely to commit suicide and I would prefer to work with him in non-drug interventions.
The problem is, how do one ever really know that someone else is or is not suicidal? That’s where I feel drug companies have gained the advantage. You don’t know, and nobody wants to assume the risk, so medications are prescribed as some sort of “insurance policy.”
I watched this quite a while ago and it is good to have the opportunity to put it here
David Healey and Robert Whitaker address suicide rate in New Zealand
Drugging our kids, Suicide & homicide effects CASPER. MR NEWS
Another important article in Mad In America by Robert Whitaker -‘ A People’s Review of the Evidence. Do Anti-depressants work?’ Another and another …how much more evidence is needed – how can we know how much the publicity is actually changing prescribing?
Thanks, Annie, for all the information you have provided here. I found Alastair Campbell’s speech about his brother’s life really touching as well as informative. One of the main reasons for that being, I guess, that we have witnessed the ‘psychosis-like’ episodes ourselves, within our family. Unlike the Campbells, however, the depth of suffering that they witnessed was not present here.
The saddest part of our suffering though has been the inability to convince doctors of the connection between the destructive role of a SSRI and the continued suffering of hallucinations. Their ‘inability’ to be convinced actually, to my mind, being a barrier to the patient’s recovery.
Now, of course, things are improving. The ‘improvement’ was a leap of faith on the part of the patient in response to a determination, on my part, to prove that Seroxat plus a range of other medications ( all given in good faith on the doctors’ side I am sure, but all such failures) were responsible for every change of behaviour that we had witnessed – that the ‘patient’ was actually controlled by his medications rather than a ‘personality disorder’.
How many now suffering with hallucinations etc. are suffering, not because they have a psychiatric or psychological illness but simply because they are damaged by their prescribed drugs?
Understanding our own bodies gives us the power to slowly recover. Being asthmatic, I know that as well as anyone. If I were to ignore the fact that my body reacts badly to many fruits – especially grapes – and just carried on eating them regularly, maybe 3 or 4 different types three times a day, I would have a severe asthma attack. Yet, this is EXACTLY what is happening with drugs given for many ailments. If doctors refuse to accept this, then our only alternative is to prove to them that we are the decision makers as far as our own bodies are concerned.
Recovery from psychosis
Katinka B Newman @pillthatsteals 22h
Interview Katinka Blackford Newman BBC Radio London by Eddie Nestor on antidepressants http://chirb.it/qGszH3 #audio via @chirbit
The Pill That Steals Lives, by Katinka Blackford Newman
Yesterday at 13:25 ·
COPYRIGHT: © The Royal College of Psychiatrists, 2017
-‘although this may reflect my own preconceptions.’
Correct .. two little stars amongst many larger stars in the Pill That Steals Lives ..
That is only one person experience quoting newspaper as sources.
About 40% of people treated for “Schizophrenia” attempt suicide. The treatments used for “Schizophrenia” are the most likely cause.
(I experienced a series of suicidal hospitalisations between 1980 and 1984 in Ireland while in treatment – and none since).
You have an interesting story, Fiachra, I have read your descriptions on MiA.
Especially, as you have recorded and documented what happened to you.
40% is an extremely high figure to present.
“…The lifetime prevalence of suicide attempts among individuals with schizophrenia was 39.2 percent compared to 2.8 percent of those without the disorder…”
Tens of millions of Americans are struggling to get off antidepressants – and going to extreme lengths to quit
One quarter of Americans that take antidepressants have been on them for over a decade
Many suffer withdrawals when they try to quit, but the symptoms closely resemble depression itself, and even doctors struggle to tell the difference
There have been no comprehensive studies on antidepressant withdrawals
In the absence of research and reliable medical advise, patients turn to the internet and each other to taper off of their medications
By Natalie Rahhal For Dailymail.com
Published: 23:33, 9 April 2018 | Updated: 03:15, 10 April 2018
On quarter of people who took antidepressants had been on them for 10 or more years, according to the latest CDC data, and experts say many may suffer withdrawals if they quit
“We just have to pay more attention to the stories people tell. That doesn’t mean we have to believe them right off the bat, just don’t discount them either, and pay good, scientific, clinical attention”
“If withdrawal reactions are genuine, regardless of how frequent, the worst thing is to put the person back on the drug”
Instead, there needs to be a much more even-handed approach to the effects of the drugs, not just antidepressants, which often harm people more and are real difficult to get off of, more than any illicit drug,’ says Dr Cohen, ‘and the effects can last a year, or two, and sometimes even appear to be permanent.’
Benedict Carey, Science Correspondent, NYT, in conversation, re his article in the NYT ..
James Moore @jf_moore 8h
Antidepressants and The Problem Of Withdrawal, audio interview with @bencareynyt https://wbur.fm/2Hm0TOI via @OnPointRadio
Simon Wessely @WesselyS Apr 8
Simon Wessely Retweeted Alan Delamater
This is a good piece as one would expect from @bencareynyt and @nytimes and we should be doing more to help long term users of ADs who wish to stop. But what scares me more remains the opiod epidemic
On point ..
These people lose me by the minute ..
‘Do not shout’ ..
Trusted guide to mental & emotional health
Helping Someone with Schizophrenia
Take side effects seriously. Many people with schizophrenia stop taking their medication because of side effects. Bring any distressing side effects to the attention of the doctor, who may be able to reduce the dose, switch to another antipsychotic, or add medication to counter the side effect.
Encourage your loved one to take medication regularly. Even with side effects under control, some people with schizophrenia refuse medication or have trouble remembering their daily dose. Medication calendars, weekly pillboxes, and timers can help. Some medications are available as long-lasting weekly or monthly injections instead of daily pills.
10 tips for handling a schizophrenia crisis
1. Remember that you cannot reason with acute psychosis
2. The person may be terrified by his/her own feelings of loss of control
3. Do not express irritation or anger
4. Do not shout
5. Do not use sarcasm as a weapon
6. Decrease distractions (turn off the TV, radio, fluorescent lights that hum, etc.)
7. Ask any casual visitors to leave—the fewer people the better
8. Avoid direct continuous eye contact
9. Avoid touching the person
10. Sit down and ask the person to sit down also
Source: World Fellowship for Schizophrenia and Allied Disorders
‘start medication as soon as possible’ ..
The film was produced by the RCPsych Public Engagement Committee in conjunction with….Damn Fine Media.
From: Dr Neil MacFarlane MRCPsych
In 2013, Dr Pariante invited the disgraced Dr Charles Nemeroff MD, to give an inaugural lecture at the Maudsley Hospital’s academic wing, the Institute of Psychiatry, which is located on the same site. Dr Nemeroff is probably the most notorious of the many psychiatrists in the United States who avoided criminal convictions for failure to declare large pharmaceutical company payments (including from GSK, who in 2012 were found guilty of ‘criminal’ overmarketing) under the flaccid regulatory structure there. At the time, Dr Pariante defended the lecture on the wholly dubious basis of ‘academic freedom’, failing to acknowledge the widespread corruption in American academic psychiatry. But even though Dr Pariante did not dispute the charge that Nemeroff had lied to his employer about such payments, and been sacked for it, the lecture went ahead.
Dr Neil MacFarlane MRCPsych @NmacFa 4h
My legitimate comment & criticism has just been blocked by @wendyburn President of the ‘Medical Royal College’ @rcpsych of which I am a member…complaint-fatigue may be setting in but no policy/warning I think…?…answer(s) please @DrKateLovett @IanHallPsych @DrAdrianJames
Grand Slam ..
Goldman Sachs says it:
Curing patients is not a good business model – keep the diseases running.
Nouns and Adjectives ..
BOB FIDDAMAN @Fiddaman 13h
Many readers will find the following PDF too much to bear. Many will be angered by it, and rightly so. I hope many of you will pass it on to family, friends and even healthcare professionals….
‘It is the height of arrogance and self serving manipulation that SKB should summarily dismiss a person who insists s/he is suffering withdrawal from their drug.The 108 patients did not report “nervousness.”They did not report “tremor.”They did not report a whole host of nouns and adjectives that would have passed for “relapse” data.Instead they insisted they were suffering from “withdrawal.”Worse than merely disbelieving the 108 patients, SKB changed the results to “relapse” without going back to interview those patients.SKB’s motive in the “withdrawal vs relapse” issue during clinical trials is one thing.However a compelling question is why–with all the facts on the table–did SKB choose to ignore problem for several years.The data in the “Group of 108 Complaining Patients’ Study” should have alerted SKB to immediately place a high priority on the “withdrawal” issue–to study it thoroughly, and update their warnings as appropriate in due time.SKB has done nothing to date on the problem.’
Changing Withdrawal Data to Relapse Data
Meaning, how could RCP, RSGP, and their dedicated followers, ignore, the Seroxat Saga, as it grew, and grew, and grew, when the patients have been telling the story…for decades ..
If there are never any prosecutions – is the legal profession as well as drug companies and regulatory bodies complicit in fraud And causing harm ?
In any event, Dolin argued, GSK’s behavior rose to the level of recklessness.”
“It is important not to lose sight that the overwhelming majority of courts continue to reject innovator liability based on well-settled law,” she said. “In fact, no federal circuit court has yet recognized innovator liability under any state law. It would be a sign of bad things to come if the conservative Seventh Circuit became the first federal circuit court to do so, under Illinois law.”
Massachusetts product liability ruling may have bearing on GSK appeal of $3M verdict over lawyer’s suicide
Invega is used in Ireland to force a person’s health down.
It is a criminal drug like so many others in the Pharma Industry.
It is forcibly injected to those who refuse to accept that what they know to be true
is NOT true. Even CEO’s of Hospitals & Healthcare, such as the HSE who are NOT medically trained order this treatment for many, especially women.
To think I once wrote to many Pharmaceutical companies here in Ireland sometime ago
pleading for their co-operation in safety for people in hospitals and community is almost laughable now if it were not so sad.
I recall talking to a mother of a young man. She was waiting to “push” her son in the door of an appointment with his Psychiatrist. The poor young man – I could only see his profile as he stared ahead – the mother in her innocence and absolute belief in the “good doctor” said “He has to have a blood test” at that time, I asked “Oh are they checking for side effects” She answered “No, they are checking his kidneys and his liver, he has to have the blood test every three months”. I said nothing – the poor young man was a lamb to the slaughter, drugged & damaged for Pharma Profit Margins. I walked on that day to the “Art Centre” the HSE had opened and boasted about where people on community drugging programmes could go to. Such people, such lovely inncent people, some indeed very artistic – These lovely Pharma owned people, in reality human slaves for Pharma – would get €1.50 if they attended for a morning session and €3.00 if they stayed for the full day.
I walked out through the hall and noted the word “Lundbeck” sponsored all Art work and Competitions. Now where did I hear that word before?
There is nothing but despair at the control Pharma controlled HSE as with NHS has on our Governments, Healthcare and people – just lovely innocent people for Profit Margins –
Today, a young man’s funeral has taken place here locally in a Midland Town. Dead by Suicide. In the last 2 years in a small area of this Midland Town in Ireland there have been 7 “Suicides” – all young men – there are others also including a woman in her 70’s who tried to kill herself with wine and sleeping tablets but woke up only to cut her wrists and then die….One of the young men who died attended Jigsaw – I had never heard of Jigsaw before as a Centre for Young people but seemingly it is growing rapidly with many sponsorships – God help our young people – what chance have they got in Pharma controlled countries…
Killing For Profit – at the European Parliament ! #LCHF Aseem Malhotra
Published on Apr 15, 2018
Super session in the 2-hour European Parliament meeting on Thursday – so many issues raised by Dr. Aseem Malhotra, MEP Nathan Gill, Sir Richard Thomson, Professor Hanno Pijl and Sarah Macklin. Now edited with HD footage and clear sound. Let’s get the message out – MEP Nathan Gill and Aseem reckon a million views would be a great goal – only if it gets shared like hell 😉 For the ultimate test to ascertain your current health, see The Widowmaker Movie here – for free – and “Know Your Score!” https://www.youtube.com/watch?v=WygYk… And for those interested in achieving health and longevity through applying the science: https://WWW.AMAZON.COM/EAT-RICH-LIVE-LONG-MASTERING/DP/1628602732/
Science & Technology
Standard YouTube License
Hi Teri – Apart from the grotesque arrangement you describe the next step you alluded to has already arrived in USA. Have just read Peter Breggin MD’s latest in Mad in America ‘Your Pharmacist is Tattling on You’. There is even a standard form being used to do the ‘tattling’ on people who have not been picking up prescriptions..
Auntie Psychiatry April 17, 2018 at 4:20 pm
Does anyone know if “Pharmacist tattling” could happen in the UK? I have noticed a creeping trend towards more monitoring and scrutiny. I’m trying to stay cool about it because up until now I’ve been able access medical services in a way that suits me. Mostly I would go for 2 or 3 years without seeing anyone, but they were there for me on the rare occasions I needed their help. There was a cautious trust between us – as long as I didn’t deliberately draw attention to myself, they left well alone. But from around 2014 I’ve been called in for annual “reviews” where they check my weight and blood pressure, take blood, and ask me questions about what I’m doing with my life, that sort of thing. Then they put it all on my electronic record and send me a copy of a kind-of care plan through the post. I wondered why this was happening, and did a Google search – I worked out that my name had been added to the Severe Mental Illness register. This sounds super-creepy – in theory this register is simply about “Improving physical healthcare for people living with Severe Mental Illness”, but it means that I’m definitively tagged as SMI for all to see. I hadn’t been told any of this, but here’s what is says in the NHS England document about it…
“Unless the patient actively disagrees, assessment and actions are to be shared with relevant healthcare professionals in line with information sharing and information governance protocols.”
Needless to say, I haven’t been given the option to “actively disagree,” and even if I was, I wouldn’t dare.
So, now I’m wondering what to do if I am ever pressured into accepting prescriptions for regular neurotoxins – I would probably have the sense to nod dumbly and take the script from the doctor, then tear it up when I got home. But now I’m wondering if I would have to buy the damn drugs from the pharmacy and find some way to dispose of them, like Rachel777.
The NHS severe mental illness register is a register maintained by GP Surgeri3es of people within the practice who have a degree of mental illness that might make them forget or neglect to have regular physical checkups. It is designed to allow the GP to call them in every year for a check, so that nobody gets missed.
Susanne, Yes I know – As mothers, how innocent we all were in trusting “the good doctor”, “the Holy priest” etc.
There are also forms that doctors have to report side effects of drugs which doctors purposely do NOT fill in. Apart from the “criminal” Psychiatric drugs – general medicine drug side effects are also covered up. For instance antibiotics – Clonamox an antibiotic drug made me allergic to Penicillin despite some doctors continuing to try to prescribe it to me. This week a member of my family had a “scalding” reaction to amoxicillin and she too has been told that she is now allergic to Penicillin and must never take it again.
If someone had told me decades ago “to be careful of doctors” would I have believed them? The pattern of “the good doctor” syndrome sadly continues today with the next generation. Will they “Wake up” when something “bad” happens.
I’m not sure if my recent experience is relevant here, but I add it for what it’s worth as it has been a kind of proof for me.
All my life I have been aware that I reacted badly to any kind of medication, from antihistamines, iodine dyes, steroids, etc. I have tried to get GPs to accept this and I have been met with cynical disbelief and snorts of derision.
On 3rd February I had what appeared to be a heart attack. An ambulance was called and paramedics took a BP of 50\30 and an ECG showing a small heart defect. Once a fluid intravenous line was put in to counter dehydration, by the time I got to A&E and spent 6 hours on a draughty trolley (nowhere for husband to sit down during that time) to have heart X-ray and further ECG taken, and blood test, I was feeling a lot better. Thankfully these eventually showed that there had been no heart attack and I was allowed to go home. But other signs during the following week in bodily functions showed that something odd was going on. Then I had two further episodes of chest and back pain, again excruciating, and on the final one, the GP when telephoned for advice said ring for an ambulance again, ‘ better safe than sorry’. ……
Probably because ambulances were taking more time than usual to get to emergency calls, the lady on the 999 phone told me to take 4 aspirin at once. I did because again I assumed, like her, that this was a heart problem. (I never ever take aspirin. I never take anything except very rarely paracetamol at low dose for pain). Our local hospital radioed the paramedics saying they were not accepting new patients in their A&E that day, so they would have had to take me to a hospital much further away. So, Instead they kindly rang and got our GP to fit me in immediately, who took a blood test. The 300 msg of aspirin would have been in my system for just under 2 hours when the test was taken. Four days later the liver function test came back as raised, right across the board. I then got jaundice and other digestion problems. Another liver function blood test was taken and the result of this two days later was so much worse that I was rushed off for an ultrasound scan, which showed that I had lots of gallstones and the assumption was now that one had got stuck in the bile duct.
I then suffered three strange effects. I was confused, imagining things which hadn’t actually happened and being totally convinced I was right. I also got roaring tinnitus in my ears, and anorexia, not wanting food at all. Gradually the jaundice faded away. But I checked aspirin hepatoxity and the three strange effects I’d suffered were listed as symptoms of it. They went on for a week. I have just had the results of a further liver function test and I’m glad to report that it’s a bit better.
My point is that my liver’s behaviour I think showed that the 4 aspirins were toxic to me. Just like all other medications have been, in my opinion, over the years since I was a child. Probably anyone else could have tolerated them. The liver would have been dealing with a blocked bile duct and the aspirin AS WELL, hence the jaundice. My son could not tolerate medications either, we knew it, he knew it, but no one would believe him or us when we tried to alert doctors to this fact. Just like Mary has stated above, her son was affected by medication side effects and these were not understood and believed.
I had not realised how vital a role the liver plays in metabolising medications, and how essential it is to drink 2litres of water daily to keep hydrated and thus aid it in its work. I have found chamomile tea helpful. I now eat only low fat small meals, little and often. My mind is clearer and I feel more physically energetic than I have in a long time. I felt it was worth reporting this as if we keep really well hydrated, it may be that drug side effects could be less harmful? Many of us do not drink enough water – I know I didn’t before this wake up call. I also wonder whether treating acne by careful attention to diet and hydration could be a much safer alternative to taking RoAccutane isotretinoin, which is known to be toxic to the liver.
I am hopeful now that the GPs in my local practice will accept what I say about being unable to tolerate medications which others have no problem with. I’m hoping this experience may turn out to be some sort of proof….
The first time I encountered the (so-called) mental health system was in 1958 when I heard about the Oedipus Complex that said childhood memories of sex with adults were a “fantasy” something the child had imagined because they wanted it. Since I had just escaped being molested by my father–but was awake while my sister was raped–I was able to understand the OC was a lie and cover up. Over the years I came across many instances in which the APA (American psychiatrists) were intimidating and silencing people–and ostracizing and blackballing their fellow professionals who dared speak up.
In 1973 I heard about D.L. Rosenhan–On Being Sane in Insane Places (Science Jan 1973) who courageously stood his ground on his findings until his death.
In 1984 I read The Assault on Truth (Jeffrey M. Masson) which documents early suppressions–starting with Freud himself who had presented a paper suggesting that what was then called hysteria was a result of child abuse. Masson was director at Maresfield for a while and came across many unpublished correspondence between Freud and his colleagues with clear evidence of their attitudes and actions. After WWII psychiatrists were advising the Catholic hierarchy concerning the sexual abuse of children by priests and let the Church take the full brunt of the scandal–which the APA had covered up even more. And, after Post-Traumatic Stress Disorder was included in the DSM in 1980 survivors of child abuse started showing up with even more complex symptoms of trauma. Despite over 30 years of research documenting the physiological changes in the body as a result of trauma the APA turned down–for the 3rd time–inclusion in their diagnostic manual (DSM) the diagnosis of Developmental Trauma Disorder–along with effective means of recovery. As a result of this the APA power brokers have blocked the recovery of thousands of survivors of childhood trauma and instead have mislabeled them with psychiatric disorders–and mis-medicated them. (In 1985 the first statistics were established that 80% or more of patients labeled with Borderline Personality Disorder have horrific histories of child abuse). In all this mess I have tried to lay low and do as much recovery as I could on my own. But seeing the APA continuing to cover up abuse–and their own complicity–is heartbreaking, frustrating and exhausting.