Calls for better monitoring of antipsychotic drug linked to hundreds of deaths
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- เผยแพร่เมื่อ 1 พ.ค. 2024
- The families of people who have died while taking an antipsychotic drug have told Channel 4 News there needs to be a wholesale change in how it's monitored. Around 37,000 people in the UK are prescribed clozapine, which is primarily used to treat drug-resistant schizophrenia.
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Its benefits are huge, but it's a high-risk medicine and without proper monitoring those risks can be fatal. The drug has been linked to some 400 deaths a year since its approval for use here.
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Psychedelics saved me from years of uncontrollable depression, anxiety, smoking, and illicit pills addiction. Imagine carving heavy chains for over a decade and then all of a sudden that burden is gone. Believe it or not, in a couple of years they'll be all over for treatment of mental health related issues.
Congrats on your recovery. Most people don't realize that psilocybin can be used as a miracle medication to save lives.
To be honest, mushrooms are one of the most amazing things on the planet and it is natural, they serve in many ways not only for mental related issues.
Can you help me with a reliable source I would really appreciate it. Many people talk about mushrooms and psychedelics but nobody talks about where to get them. It is very hard to get a reliable source here in Switzerland. Really need!
Yes, Sporeville. I have the same experience with anxiety, depression, PTSD, and addiction... Mushrooms definitely made a huge difference to why I'm clean today.
I wish they were readily available in my place.
Microdosing was my next plan of care for my husband. He's 59 & has many mental health issues plus probably CTE & a TBI that left him in a coma 8 days. It's too late now I had to get a TPO as he's 6'6 300+ pound homicidal maniac. He's constantly talking about killing someone.
He's violent. Anyone reading this Familiar w/ BPD knows if it is common for an obsession with violence.
not to be taken with alcohol.
This is why you don't mix alcohol with antipsychotics. Doesn't the UK label their medications with warnings and directions of use? I'm shocked if they don't.
Yeah pretty much all medications say no alcohol, however, the lady in the video is saying that those in charge of his treatment said otherwise and that is the issue. You cant expect psychiatric patients to heavily scrutinize every detail of the pamphlet.
@@RattyTheTruth yeswe do ..were mad ....not stupid
If I was put on a powerful drug I might do some research on what I was taking and the side effects.
Of course we do ffs,if people were honest,many psychiatric patients take very little responsibility for their own physical and mental health.And perhaps channel 4 would like to broadcast how many people in care accrue so much money that they have to have yearly spend ups so their benefits aren't stopped.No one wants to address that do they?
In the uk people always expect the government to save care of them, they don’t ever take responsibility themselves
Clozapine saved my sons life after a year in hospital and then years of other admissions. He was extremely ill with terrifying and violent pschotic episodes despite being on many different antpsychotics. Hes now able to lead a relatively normal life.
Glad to hear this mine too have balanced my brain to live a normal life with a few side effects
The story in this videos seems like negligence not necessarily the drug
@@uraninite8151the person should have read the leaflet as it states do not drink alcohol and a psychiatrist usually tells you do not drink on it.
Same, mine was hospitalized 23x before this medication and it has saved his life
Clozapine is prescribed in treatment resistant schizophrenia when all other antipsychotics are exhausted. Without this antipsychotic the patient’s psychotic illness will not be controlled and the risks will be high. It is important to monitor clozapine as per guidelines. It is also important to make some lifestyle changes like reducing alcohol intake and abstaining from any substances like drugs. People should take responsibility of these contributing factors that could cause serious impact on health rather thinking it’s the medication alone which has damaged one’s health.
"People should take responsibility" its the doctor's and community mental health team's job to ensure people are complying with treatment including NOT drinking alcohol or at least working to quit drinking. Especially with a serious mental illness like schizophrenia. Otherwise what are these health workers getting paid for?
@@GridSeerplease explain to me how a doctor is going to prevent someone from going and having a pint, I'm sorry but studying medicine does not make you omniscient nor able to teleport to the patients location, furthermore it would probably be illegal for you to try and stop them, it's not illegal for pregnant woman to drink after all.
There is only so much health care professionals are physically/ethically able to do, they cannot force an obese patient with cardiac issues into a diet, they cannot force people to take all the rounds of antibiotic treatment, they cannot make schizophrenic people not drink alcohol, people have a certain degree of bodily autonomy, and while yes there are exceptions to this, health care professionals cannot force someone to treat themselves under the majority of circumstances, patients have a right to refuse treatment, cancer patients have a right to deny chemo, even if their cancer is curable.
Of course, this is somewhat mute when the providers do not give appropriate counsel, but the point is that even if they do, there's only so much the healthcare system can do.
Clozapine is essentially a last line drug, used in Schizophrenia when other drugs have failed to control symptoms or in severe psychosis. At this point there are very few other treatment options. The benefits of staying on the drug are likely to be higher than the risks in that circumstance. I think the real issue here is the profound cuts to mental health services across the UK. This greatly impacts the level of patient and drug monitoring that can be done by a service that is so stretched it's unsafe.
The benefits are likely to be higher than the risks absolutely IF patients are monitored appropriately and if all stakeholders have sufficient knowledge of clozapine.
That's true, clozapine ALWAYS HAS this risk, if doctors cannot monitor high risk drugs that requires specialized tests and secondary tests on metabolic parameters to keep it safely used, of course people will die if those resources are cut
I was put on it when i was sectioned in 2022. It knocks you out. I felt like i was falling through the floor. Would wake up needing the toilet at night but could barely walk to it without feeling like i was going to collapse. I ended up agreeing to a depot injection to comply and get out. Clozapine is a horrible experience, it requires weekly blood tests to use it.
I am so sorry I am lucky I have been ok enough to bullshit my way out of being sectioned every time it’s come close to that
Chemical straight jacket,
Mainstream psychiatry is mostly dehumanising, all the best to you
Alcohol has this effect with many different kinds and types of medication. This is not exclusive to clozapine/ antipsychotics.
Absolutely, but in those cases you are often warned about it, which is what this is about. She just wants a warning on the packaging
@@aloe_vera3740I’ve been taking a similar antipsychotic (prochlorperazine) for years and there absolutely is ALWAYS a warning in bold on the box. I don’t understand how any of these medications could possibly not have this warning either on the front of the box or in the medical leaflet.
Exactly many antidepressants you can not drink on them either.
Well it's not clozapine's fault that alcohol is a literal poison.
Clozapine is toxic !!
These medications are successful in most cases I take different ones but never touch alcohol now and they have helped me enormously
And clozapine isnt toxic ?
@@meesh.G Not at the right dose.
@@amoxzi toxic it shrinks yr brain.!!
I’ve been on anti-depressants for a long time, and when I moved to Thailand and went to register with a psychiatrist, he blinked at my medications and wondered why the English NHS prescribed me such something so dated with low efficacy compared to a lot of modern anti-depressants. I told him because that was all theNHS could afford and also they couldn’t arsed to update their treatments. I was prescribed a few more supplementary medications by him, to boost the efficacy of the main anti depressants. when I went back to the UK for a few months and incidentally had to go for a GP visit, I gave an update on my medications I got prescribed in Thailand and it appears the NHS don’t have any of my supplementary meds. The GP said maybe they do in private healthcare but not in the NHS system. Speaks volumes.
When I suffered a kidney infection in Pakistan, I was immediately prescribed antibiotics, painkillers and something to reduce the acidity in the urine, to reduce irritation. It was brilliant and I was better in no time. When I suffered the same infection in the UK - several times - I got screamed at that I was "just having my period" (despite me having had a hysterectomy!!!), and I was forced to wait until it was so bad that my kidneys are now permanently scarred - and then I only got antibiotics, nothing else, and only 3 days worth of them.
I’d be interested in the medications you were on and later prescribed, if you are prepared to share.
@LittleKitty22 nothing surprising there. Typical NHS experience. But Brits will still defend NHS even on their death beds. I too have long lasting damage from NHS neglect.
get your heart rate up high every day or so for a few minutes .i know many won't believe me but it worked wonders for me after years of chronic depression and low energy etc
First world country with so much money and that crappy health care system, all the money goes to the monarchy?.
Is your glass half empty or half full? I’m just happy to have a glass-that’s just beautiful ❤
Isn't it common knowledge though, that you should not drink alcohol if you're under any medication? That's a rule I've always lived by, something I was told generically, as a kid.
It's common knowledge not to drink 'n drive, yet people do.
If people have insomnia even on the meds that are supposed to stop it then they have to mix drugs to sleep. Insomnia retriggers psychosis when antipsychotics, or their withdrawal are involved, and for how psychosis first starts, which is usually from high stress, poor sleep, low magnesium, low zinc.
Can't always make the best decisions when you are mentally unwell, you are vulnerable.
This medication needs much more monitoring due to these major potential risks. It’s not the same as comparing it to most other medications.
She states at around 2:00 that she was badly advised. She says someone told her if he stops drinking it could be dangerous, and that him drinking and taking this drug is a nonfactor. Very strange, but practitioners say a lot of goofy stuff.
Our NHS is so behind on everything
Understatement > they are in retrograde !!
It’s disgusting. The mismanagement is intentional and needless. Why do people with obvious connective disorders go undiagnosed for decades. Why did my doctor ignore me telling her I had pains in my groin going down my leg, ringing in my ears, throbbing temples, debilitating headaches where i would go blind and numb on my left side and kept me on the combined oral contraceptive pill
It's the same in Ireland, no monitoring
That’s what happens when we are only willing to pay pennies for a healthcare service
@@Bringon-dw8dxit has a budget of nearly £170 billion a year. If it was properly run that would be more than enough, but no big political party will reform it
I worked with one of the men in this video. His lifestyle choices killed him, not his medication. Ridiculous that they are pinning it totally on clozapine.
For the record, his sister believed there was nothing wrong with him and was completely ignorant of his illness'.
Yes, this story is terrible journalism. Interview the rest of us whose family member doesnt drink alcohol & clozapine has been lifesaving.
"Lifestyle choices"?
My brother was on this medication for years and experienced numerous side effects. It made him emotionless, tired, sedated, and caused weight gain, drooling, and asthma. He also drank occasionally while taking it because he said the voices were too much and he wanted them to stop. I was his sole carer and support system, and it was incredibly difficult because the system provided absolutely no support, especially when he had a manic episode and was constantly hospitalized. He is now off this medication and receives depo injections every two weeks. He is in a much better place now. My advice is to avoid this drug, as there are too many complications associated with it, and the government does not seem to care about the lives of people taking clozapine.
All antipsychotics cause weight gain. Reason why I refused to take them. I have bpd. Lithium is meant to be good for schizophrenia
Then that wasnt the right drug for him but it saved my sons life. He was hospitalized 23x before it and now works full time and leads a normal life
@@CoolKidsSJJE that’s great. That’s the thing not every medication works for everyone and videos like this should not scare people using medication
Psychiatric medications and how they are prescribed need a thorough overhaul. Once you start listening to people's experiences and once you start looking more closely at the clinical trials etc... you find some very disturbing outcomes, outcomes that are not readily highlighted and leave many, including medical professionals in the dark.
I am a medic and have done and loved my placements in psychiatry. I am very much of the belief that our approach to mental health is wrong and we have societal and systemic issues to be addressed to help our patients, try to provide psychotherapies like DBT, MBT, CBT etc to our patients as long term solutions instesd of antidepressants. There is a role for antidepressants in the short term.
HOWEVER, for patients with psychotic illnesses, they NEED to be on an antipsychotic, as awful as they are. Psychosis is infinitely mlre distressing and dangerous.
I've seen the side effects of clozapine in patients with treatment-resistant schizophrenia. But without it, these patients would have no quality of life at all.
I'm also very interested about the stated lack of monitoring mentioned in the video, as my trust and medical school was very adamant about the importance of monitoring antipsychotics, particularly clozapine, and other mental health drugs like lithium
Thank you for this rational response
I'm a doctor too. Clozapine monitoring is much better in Australia. Monthly blood tests and physical exams with central reporting along with yearly echocardiograms. You have to be very very careful who you prescribe it to. And that includes people who use alcohol.
The real psycopaths are in charge of the country. They are never diagnosed nevermind treated.
There are no chemical answers to emotional responses to a broken society.
@@9000ckthat's standard in England.
i'm going off mine soon. anti psychotics generally make life miserable and just massively suppress you
You will be joy to be around soon
Um please speak to a medical professional before you do anything like that.
Hopefully, your doctor is in agreement with what you are planning to do.
Look into the case if Joel Cauchi in Australia. He very carefully came off his medication under the supervision of his doctor. It can be done but you need family or loved ones you trust keeping a close eye on you, so you don’t relapse.
That's what it's about. Suppressing you from speaking your mind.
Nobody in their right mind would stay silent.
Good luck. Get off the poisons kid.
Clozapine has been incredible for someone I know that suffers from the same condition but you must have zero alcohol to ensure against adverse effects
But if it kills one person its useless .
@@Trueblue-jx2tk that’s the media narrative but for the vast majority on it it has been the only medication that actually worked for them. End of the day comes down to quality of life. This man I guarantee that this man’s psychiatrist warned against the use of alcohol and he was fully aware of adverse side effects but he didn’t want to change his habits since he was able to get away with it for some time.
Not correct. I can guarantee you that.
@@NicholaCrawford-jw9bdGuarantee you’re clueless
long term culminating effects of Clozapine are damaging. A lot of these meds eventually kill you by causing all sorts of imbalances in the body which it spends decades compensating for. You do not die of old age I tell you that, like alcoholics and chain smokers.
Clozapine and its effects have been known for decades. Greater awareness raising like this is to be welcomed though, and the public definitely also need to be made aware of the horrific metabolic effects of Olanzapine - insulin resistance, hyperglycemia, and awful weight gain. I've seen people balloon out on Olanzapine and left grossly overweight with a messed up metabolism that some may well find worse than the original condition being treated. There are other antipsychotic medications besides Olanzapine and imho it is too readily used and often without adequate monitoring of metabolic effects and certainly without the comprehensive patient briefing needed for the gaining of fully informed consent re: adverse effects
I flatly refuse to go on it. It was offered to me. Already the current Meds im on Quetiapine are already knackering my liver.
If quetiapine is working for you, you don’t need clozapine. Quetiapine is a woeful antipsychotic. Clozapine is extremely effective, but leads to constipation and requires so many blood tests and careful monitoring. Clozapine is the medication used when other less potent antipsychotics fail.
I'm on that, how do you know it's harming your liver?
@@dionysusapollo The nurse told me - if you been on it for years it raises your liver ezymes, especially if your a drinker.
I’m on quetiapine, but prescribed off label by psychiatrist for chronic insomnia since childhood to be fair it’s the only drug that works, benzodiazepines just make you feel so good, I’d abuse them. But they are bad for putting weight on you, because they make you feel starving.
The most ridiculous thing about mental health how many patients that complain of issues ever get a FMRI scan of their brain? Any of issue in the body we test and investigate, the brain we don’t.
You don't need any meds my friend! You're completely fine. The dark forces want to control you.
Thank you so much for this!! I'm commenting to boost the algorithm. This video alone will save lives.
here in canada there is huge labels on the bottle stating do not consume alcohol
plus that dodgy one for Malaria forced on members of forces,
That drug is already illegal in many countries its banned since the 1970s
there are no countries which have banned clozapine outright as far as I know.
It is not banned anywhere.
Sorry .. got that at VA
It should be it causes epilepsy & death !!
It should be it decreases mortality & causes a miriad of ' side effects ' including epilepsy..
I wasn't allowed to take it because my white blood cell count was low but that doesn't stop my psychiatrist from bugging me about it. The only thing that did help me was marijuana. I tried it after my psychiatrist stopped wanting to see me. It stopped my visual hallucinations. I even saw the scene from the ring that they see on TV, vividly, in my bedroom floor to ceiling mirror. They locked me up for 5 months for trying that. Even though I have a swollen lymph node I was given only a 30% chance of it not being cancerous. Now they won't stop injecting me...
do not operate heavy machinery, avoid alcoholic drink. 365 days a year, healthcare sector all has this bizarre idea
The standard of mental health care by the NHS is abysmal. I had a review of my medication by my GP surgery’s pharmacist last year, who told me the antidepressant I’ve been taking for 25+ years (with, quite frankly, negligible benefit) is only supposed to be taken for a short period of time, a few months max, and it’s dangerous to take it long term. She suggested a different medication, and told me to ask the hospital psychiatrist about it at my next appointment. When I mentioned this to the doctor, he just rolled his eyes and said he wasn’t going to change anything. I’m supposed to have blood tests regularly, and an ECG, but I can’t get an appointment for either so it’s been over 3 years since they actually checked to see what damage the antidepressant is causing me. They honestly don’t give a damn about my health, so I’m at the point now where I don’t give a damn about it either. Hopefully this is my last year.
I will never take a single anti physcotic medicine ever again.
Clozapine requires a weekly blood draw for the first 6 months and then monthly after that. It is also a last resort drug. My family member stopped taking it because it made him forget things and stutter.
Untreated psychosis causes utter misery to sufferers and no medication we have is as effective as clozapine
None is as fatal either.
It kills people & destroys health !!
Try & get off it & it causes worse psychosis that you started with... there is no test for schitzophrenia..
Its lethal & shld ave been banned due to its toxicity !!
@@katharina...And one that can be minimized with responsible use.
Try coming off
Clozapine it
Clozapine, just like any other meds, let alone antipsychotics with tons of side effects, can do wonders for those who need it. But taking them requires an adequate understanding of its pharmacological mechanisms. Patients need to be educated on potential adverse reactions associated with antipsychotics, especially clozaril. Least likely to cause EPS but can be fatal due agranulocytosis
Blame someone, anyone. Just not the person who made the choices which had bad results.
Just. Say. No.
Yeah unfortunately being someone who has fairly intense mental illness and having known lots of other people who are mentally ill and in some cases have worse stuff going on than me - like schizoaffective disorder and stuff - it’s very very common for people who are unhappy and mentally ill to be drinking because they are seeking relief and then end up trapped in addiction and a lot of times completely sabotaging their meds situation and their life
When treating my chronic pain I was told that medicine was “bad”, when I was told I had to take an experimental injection I was told that medicine was “good” but it seems to me that these decisions are made by politicians and stockholders rather than the individual who would potentially suffer any consequences of those decisions. If you don’t walk in my shoes how can you understand my decisions? But I understand yours 😢
Why do they give antipsychotic drugs to people who are sad or depressed? Why don't they use methods to help people deal with their problems, not just mask things? It makes most worse. These doKtors have no idea what they are doing.
You CANNOT drink on clozapine. I cannot imagine any doctor not telling him this. If he said he drinks socially it would not have been prescribed. I think he told them he would quit. Also the read out says that. If you don’t read the papers it is on you. Sorry. But it’s a matter of chemistry.
I was just advised they're putting me on this, I just refused after seeing this. They said clozapine is the strongest one as I'm still having symptoms. No way not after seeing this.
i'm so sorry you have been put off. It really is a game changer when administered properly.
@@karenbrownbill9000 they talked me around but I'm scared. I feel like I might be worrying every day I'm gonna die. But I can't take this stuff anymore hearing people talking to me through the TV and stuff. Phsycosis. I don't wanna get brain damage from keep being sick
@@karenbrownbill9000 positivity helps
@@karenbrownbill9000 are you one of the doctors??
@@Xboxlegand874 its very tough for you but honestly Clozapine can help. Please don't be scared. My son is on it. I wouldn't want my son on this of it wasn't the best medication for him.
In America guidelines are strict. You have to get blood tests at first every week then once a month. Only certain pharmacies can dispense it. I think it's sad. Its a good medicine but doctors need to explain all the risks. If a patient doesn't feel well they need to let their doctor know.
Clozapine caused a blood disorder for me. 12 years later and i still have low white blood cells.
Clozapine increases white bloodcell counts. It has an inflammatory effect. That's what the doctor told me.
sounds like bad news if you have an autoimmune disease
3:34 *But that is already explicitly said on the bottle!* Her suggestion won’t do anything, but I think she’s going in the right direction. The elephant in the room needs to be addressed: People will continue to use alcohol when using drugs. Instead, we need better guidelines to people for recognizing when someone is reaching their limit. People need a chart of how much alcohol is ok for each Rx, and a chart of what drugs can and cannot be combined.
I believe this doesn't exist because of the complexity of the factors that could contribute hence the no alcohol.
People need to know the reason why you shouldn't drink....there's a possibility that the sedation is so extreme that your CNS could be depressed to point of breathing system stopping.
You should also monitor neutropenia
They get regular blood tests and often don't want a depot injection,i'm sure people are made aware of the potential side effects of clozapine.
Cathy Newman: do better next time. Your interview on 16 January 2018 was a disaster because you don’t listen and tried to introduce your own bias. Viewers are smart and could see right through it. Do better. Shame on your daughters for having such an irresponsible mother.
I'm about to go on clozapine. Worrying
For Gods Sake dont drink on it then. And make sure your on the lowest possible dose.
@@rog3833 scary. They're telling me it's mainly dangerous if I drink a lot and that the documentary was making it look bad. Selling me it like sales people. Sometimes I do drink tho
@@rog3833 I got autism and schizoeffective disorder. This shits to hard I got no idea what to do
I said I would take it
@@rog3833 they're telling me how good it works
Unless you are literally delusional, paranoid beyond reality and consumed by voices hearing them in your mind and your bones. You most certainly do not need a powerful and destructive substance like Clozapine.
I had no idea clozapine had separate, non-psychomotor, neurological interactions with alcohol, separate from typical increase in sedation, which is shared by ALL those kinds of meds- youd expect that if you can drink on other typical antipsychotics you'd be able to drink on this one too
Or perhaps there's a secondary condition causing heart issues, I've noticed a LOT more people being prescribed beta blockers, in lower doses (to treat symptomatic arrhythmia) - could COVID have weakend a LOT or our populations health, and we just haven't picked up on how big that is yet?
Everyone I know who took citalopram became suicidal and/or ended up in hospital. The side effect of ‘brain damage’ is listed (frontotemporal brain injury). It is the first drug of choice when someone says they feel depressed. Most psychoactive drugs are not fit for purpose. They fail to address the complexity and individuality of peoples bodies, brains and minds. They do make lots of money, though.
No they do NOT regularly check physical health at all.
Even though told by doctors he is on a ‘ heavy burden’ of medication.
No psychiatrist is willing to reduce medication safeties taper not cold turkey when withdrawal is described as returning to illness.
Patient is expected to read and be aware . Drs SHOULD AND MUST take some responsibility.Diagnosis to medicalise is their MO
They are good for when you have no other options. I’m done messing with those drugs.
Why is it TEWV again!
Every adult knows you dont mix alcohol with prescriptions.
Every doctor knows clozapine is toxic !!
Actually many adults don't know, even if they are taking a daily medication they may not read any labels or safety brochures.
Adults with a serious mental condition may not know what time it is, where they are, or who the person stood in front of them is, even if they have known them for 20 years.
Delete my comment youtube its still TOXIC !! Who gives mentally compramised ppl toxins to make them.well ????
TOXIC
This is a very unbalanced article and saddens me. Clozapine actually saves lives. It is the only drug which helps my LO and as there are 37,000 people on this in the UK clearly helps many. The stats on fatalities are getting reviewed because in many cases it isn't down to Clozapine. I do agree with the last statement that we need to treat those with SMI with a lot more empathy. Clozapine is also used to treat elements of parkinsons disease. This article will frighten people off clozapine that could hugely benefit from the drug. Do people really understand what it is like to live with such an awful disease? How many more lives will be lost because they were not offered clozapine.
Clozapine does save life’s if used and monitored correctly. However If you lost a loved one because they were taking clozapine and they were not monitored correctly would you still feel the same way.
@@Taunton20-yu2mm I nearly lost a Lo last year when they were taken off. I totally empathise with those who have lost LO's . In a perfect world my lo wouldn't need medication.
@@Taunton20-yu2mm how would you feel if you needed clozapine akin to a diabetic needing insulin. Clozapine is an essential drug. I think we all agree the monitoring needs to be improved.
People are acting like it’s prescribed like paracetamol, it’s a serious drug and the people being given it has serious mental health issues
AIYOAOYFSHEBALABA, IATITBEFFSAFEIE. WNTBATBITHBW, PSS.
I feel terrible for this family but I don't think they understand that the alcohol is a strong no and that's that. " He wasn't an alcoholic.... but He liked to have a good drink" it sounds like they are almost downplaying the seriousness of his illness for him to have to be on clozapine and being monitored. Irresponsible family passing the blame.
We understood very much that this drug comes with a label that says not to drink alcohol and that the patient safety leaflet also reinforces this by saying 'Do not drink alcohol during treatment with Clozaril' It was precisely because of this that we discussed the fact that Sean enjoyed a few cans of lager with the relevant NHS trust staff and whether this should stop given the label. (In the video I say he wasn't an alcoholic but he liked a drink, not that he liked a 'good drink'). Sean shared that the cans of lager helped him relax. When we raised concerns with the professionals caring for Sean about him drinking we were told that he would be ok to drink and it was common for paranoid schizophrenics to self medicate. When we queried the label and reason why that was there if it would be ok for him to drink, we were told that this was because the alcohol could cause sedation and in fact it could be dangerous for his mental health if he stopped drinking. I did some research and read different advice from different NHS trusts, some saying some alcohol was ok and some saying not to drink but any explanation as to why was down to sedation and the need to avoid driving or operating machinary. No where did I read or understand at the time that sedation at its worst could mean depression of your central nervous system and shutting down of your respiratory system, stopping you breathing and death. Sean's case was also complex in that he had a recurring UTi (at the time we did not realise that infections could raise clozapine plasma levels), he was on other medication which we now realise could have raised his plasma levels and he had varying amounts of caffeine - can also raise plasma levels. In addition, he had chronic tachycardia (not something that was ever discussed with Sean or us as his carers). The coroner acknowledged in the inquest that the monitoring and record keeping of the trust caring for Sean was 'dangerously inadequate' - so inadequate that there were many 'red flags' that could have contributed to his death but the lack of records (e.g. lack of blood plasma tests in the year he died) and over reliance on the monthly mandatory blood testing lulling creating a false sense of security. We are absolutely not trying to pass blame. We will forever blame ourselves ultimately for not researching this drug sufficiently at the time and not having the knowledge we needed to help Sean benefit from clozapine in the way he should have. We trusted that what we were being told was accurate and that Sean was being monitored appropriately. I agreed to do this news story to raise awareness of these issues as we do not want anyone else to experience what we have - passing on this knowledge may help other families who were in a similar situation to us. I would recommend the website 'choiceandmedication.org' for anyone wishing to find more information out re clozapine.
Poor analysis. What's the rate of paranoid-schitzophrenia deaths with and without chlorizapime? Only looking at the deaths linked to the drug doesn't give us the full story if we don't know whether it's above or below the average death rate for people living with paranoid schizophrenia.
I was taking this drug but now I'm taking abilify
IM SCHIZOPHRENIC AND CLOZAPINE SAVED MY LIFE AND OTHERS .....SO ITS SHADES OF GREY FOLKS
have you tried a ketogenic, zero carb carnivore diet? There are studies showing it helps massively with schizophernia as there is a metabolic component to it. Look it up yourself. There is also loads of anecdotal evidence on Reddit and TH-cam.
have you tried a ketogenic, zero carb carnivore diet? There are studies showing it helps massively with schizophernia as there is a metabolic component to it. Look it up yourself. There is also loads of anecdotal evidence on Reddit and TH-cam.
have you tried a ketogenic, zero carb carnivore diet? There are studies showing it helps massively with schizophernia as there is a metabolic component to it. Look it up yourself. There is also loads of anecdotal evidence on Reddit and TH-cam.
have you tried a ketogenic, zero carb carnivore diet? There are studies showing it helps massively with schizophernia as there is a metabolic component to it. Look it up yourself. There is also loads of anecdotal evidence on Reddit and TH-cam.
Its not shades of grey when these side effects were not even know ..its a shambles .
not a peep about this in america.
Sedative?
Don’t drink alcohol then
Zoe 22years old, Charlotte 21yrs Oliver 18yrs they were not drinkers and did not drink what killed them then?
This story is ridiculous, they already have to get monthly labs. Most patients are aware this doesnt mix with alcohol. As family members of people with schizophrenia, most want LESS monitoring, monthly blood draws for eternity is too much for these patients
The monthly bloods only test for a very specific side effect and do not factor in rises in plasma levels during to concomitant medication, infections like UTI despite blood toxicity monitoring criteria being introduced in August 2020. Physical health monitoring for my brother-in-law was dangerously inadequate and no blood plasma tests were carried out despite him.having 2 falls in the year he died and being retitrated onto pregabalin (a concomitant medication) This case wasn't just about alcohol but it is important to know we repeatedly raised concerns that my brother in law drank some alcohol and were always told it would be dangerous for him to stop drinking; never that he could die. You are of course entitled to your opinion but I will never consider it ridiculous to try and help prevent future deaths which is what I am trying to do as a family member of someone who has lost someone because of dangerously inadequate monitoring.
@@NicholaCrawford-jw9bd Im sorry for the loss of your family member but I discourage spreading fear about a drug that is the only available one that works for thousands of people with svhizophrenia. Without it my son hallucinates and was suicidal. We all know it is a high risk drug and nobody would take it if they had other options but this one actually works for extrememly hard to treat, severe cases of schizophrenia
My intention is not to spread fear. My intention is to spread the knowledge I gained after my brother-in-law died to help carers and family members to better support loved ones taking clozapine. For example, I wished we had known of the importance of clozapine blood plasma testing and that UTIs, caffeine and pregabalin can all raise clozapine plasma levels. I wished we'd known that the side effect of 'sedation' at its extreme can translate to falling so deeply asleep your breathing system can shut down. I wished we'd known that my brother-in-law had chronic tachycardia and that his heart rate was increasing overtime with increased plasma levels...perhaps some people are lucky enough to have detailed knowledge of the nature of the high risk that comes with clozapine - spending the last 4 years of my life researching this drug tells me there is much knowledge that sadly isn't common knowledge and often the rationale is that this knowledge could scare people. The fear for me lies within the consequences of people not having sufficient knowledge and not being in a position to be able to challenge the quality of care their loved ones are receiving.
This gives hope to young, up & coming chemical producers! Sure it may not be all that clinically tested but who cares right?! 🤑
Ganja is still illegal so are mushrooms
That medication is highly toxic.l, however it reduces the symptoms. This medication has to be monitored and bloods have to be taken regularly. Its the medical team responsible for the plasma checks in the blood.
My husband died because of this.
Almost like this is what would happen when we got distracted with culture wars. And not to mention kids with learning disabilities are being locked in hospitals for up to their elder years...
They are paid to just put you on tablets
Both is poison
I've been labelled paranoid schizophrenia i have no symptoms whether on meds or not
Who labeled you without you being symptomatic?
God be with him and his family. Being prescribed hugely powerfull anti psychotic drugs is fine or untested vaccines but marijuana is banned. It sure helps me deal with the stresses of life. Half the world is self medicating...
Marijuana is one of the reasons antipsychotics need to exist in the first place, considering its well researched known link to schizophrenia and psychosis.
Perhaps if people didn't use the harmful drug in the first place, especially during young adolescents age when the brain is still developing, perhaps more people would live healthier lives without the need of medication or locked institutions.
@@skycloud4802 Use not abuse amigo. Alcohol and some perscription drugs are far more harmful, this is also widely known research. Maybe there is a reason why alcohol is illegal to consume untill 21. I do agree, using any medication when the brain and body are developing is detremental to growth. Giving powerfull perscription drugs can also be derogatory to natural development. As for the reasons why people self medicate, they are many and complicated.
@@skycloud4802Anti marijuana are you? All drugs have negative side effects, ibuprofen will strip out your stomach lining pretty effectively, and how many times has paracetamol been the "go to" choice for many attempting suicide? Sure take enough and it might dispatch you but it probably won't be quick, maybe a few weeks of organs slowly shutting down, terrible drugs that are found in so many shops. Just like alcohol, life destroying drug, look at how many litres there is of it in your normal sized supermarket. Ever seen someone affected by alcohol induced psychosis? Guess which is easier to treat... alcohol or marijuana induced psychosis?...Marijuana of course because it's not physically addictive, unlike alcohol. Look at frequency and the scale of use of those suffering negative effects of marijuana, it's not from a couple of joints passed around a few friends on a Friday night, it's from a huge and constant use, huge constant use of paracetamol=slow painful death.
Im agreed with you that Weed should have an age limit....21 years up i reckon......it definitely negatively affects a growing young '🧠 ' for certain,speaking from personal experience?Iv used Cannabis daily since 1989 from the young age of 15...and personally it definitely stopped my own mind from 'maturing' into a brainwashed law abiding adult properly....I feel like I'm Peter Pan tbh!....lol!😉... on a more positive note it has opened my third '👁🗨 ' up wide and made me a Violence/Angst averse pacifist and also a very critical thinking human being!?What a grueller eh mate....I don't imbibe alcohol and never really did as a young Man growing up as I was heavily put off drink due to familial alcohol issues and iirc I haven't been drunk for over 25 years now?🤔Alas all my peers who just drank the poisonous slop we call Beer/Spirits on their weekends off are all now mostly ruined bodily and in mind and tbbh all look 20 years older than I do now at the ripe age of 50!Aiint i lucky!🇬🇧👁😉😁👍🏻✌️
The fact is that no person can actually confirm the cause of schizophrenia. They cannot even really understand what it is. @@skycloud4802
I was never diagnosed with schizophrenia but after being sleep deprived for 2 months in a psych ward so they could crack my brain and do gov patented mk ultra experiments on me I threatened federal court. So they sent me pics of kids in gimp suits and threatened to rape my kids in gimp suits and kill my mom in an operation so I agreed. Those of us who are victims call it the savior games. They had to wake me up every 2 hours to make sure I was alive. God told me to not consent to the savior games. My mom was out of the hospital and God said go live for your kids so I left because it was voluntary. The police arrested me 2 days later, threw me back in and tripled the amount. I was choking to death on my drool so I threatened federal court again and they threw me in a mental hospital which I was released after a month because it was clear I was not crazy.
Trying to be kind, but you are having illusions about being threatened. You’re not crazy, your brain just has some issues to fix. It is manageable on the right medication. Go to a different psychiatrist and get yourself sorted so you can live normally.
@@madjack8893 you have no discernment
Sounds like a bad drug..
Although these drugs are labeled as antipsychotics,they are not specific to psychoses,they are neuroleptics or major tranqullisers.My advice to anyone who values their health and life is to find alternative help,including natural remedies,and if confronted with a psychiatrist,turn and run as fast as possible in the opposite direction.
The Anti-psychotic quetiapine helped me stabalise long enough to get intensive psychotherapy. I took it for 8 years and I've been off it for 9 months now. The withdrawals are brutal but I've been able to use therapy skills to get through most of it.
Witches and poisoners.
The NHS just don't care
And cannabis is illegal...
Why would any doctor ever prescribe such a dangerous drug?
It's used for treatment resistant psychotic disorders. It's used when nothing else works for someone. They use it because it works for patients when nothing else does.
We also still use thalidomide which is a known dangerous drug but it works so it's used
they hand out ssri's like sweets.
@@piddlydiddly this is not that
@Wintermute9366 I didn't say it was
@Emma-fc3fh yeah clozapine doesntwork either.... shrinks yr brain like a walnut tho !!