A group of carers in the UK who have loved ones taking clozapine. We are campaigning for clozapine improvements please support us by signing our petition

United Kingdom
Joined October 2023
Please see link below to our petition for improvements in the use of clozapine. Please sign to help support us 💕 #Clozapine #smi #change chng.it/cKnpKH5jQh
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Clozapine Support Group UK retweeted
SSRIs aren’t turning people into zombies. Untreated depression is. They’re among the best studied treatments we have for moderate to severe depression and anxiety. Most people tolerate them well and many improve significantly when they’re used properly and monitored. Real risks exist, including sexual side effects and a higher chance of suicidal thoughts early on in younger people, and those should be discussed clearly before starting. But the loudest takes online usually skip the people who get their lives back and downplay how dangerous the illness itself can be. Balanced information helps patients make better decisions. Pure fear does the opposite. – at Delhi, India
The MHRA is introducing a series of new measures to strengthen how risks associated with antidepressant medicines are communicated to patients, carers and healthcare professionals. Read the full drug safety update here: brnw.ch/21x6qlr
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Clozapine Support Group UK retweeted
It’s World Mental Health Day 🧠 I am unashamed to take an antipsychotic (clozapine) for my schizophrenia in order to thrive (& be able to work as a doctor) There is no shame in having a mental illness & no shame in taking medication
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Clozapine Support Group UK retweeted
Your staff read from a script amd jave little understanding of psychosis —this was confirmed in the findings of our complaint. When my son was psychotic, we were told he didn’t need an assessment ( he told the call handler he was fine) and so i was told someone would call us back within 72 hours. I eventually managed to get him to A&E after phoning 999 and he was subsequently sectioned. A mental health crisis service must recognise when someone needs urgent assessment,due to psychosis/schizophrenia and listen to family. What happened to my son was absolutely shameful.
If you need urgent help for your mental health, you can call NHS 111 and select the mental health option. ➡️ nhs.uk/nhs-services/mental-h…
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1. It was brilliant to hear so many talks @ the Maudsley guidelines on how to use clozapine correctly, based on up to date evidence&guidance. SLAM really is a centre of excellence, particularly with clozapine. But I couldn’t help coming away feeling angry & frustrated too.
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7. Families should not have to become experts in psychopharmacology just to make sure their LOs receive evidence based care. This isn’t about wanting clinicians to agree with everything families say, but we need them to consider the evidence & recognise the info we can bring.
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8. The system is broken but it costs nothing to listen to families & include us meaningfully in our LOs treatment, yet we are still continually met with resistance. Our LOs deserve better than a postcode lottery of knowledge & practice.
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Clozapine Support Group UK retweeted
#Oliverscampaign A bit of advice for medics when writing up a patients notes, don't write something you wouldn't say to the patients face, STOP with the mother blame If you wouldn't write it about your loved ones. Don't write it about your patient. Keep to the facts
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Clozapine Support Group UK retweeted
This morning: a parent warned their adult son’s care coordinator never to share emails. One was uploaded to the son’s NHS app anyway. Now he is in a rage at home. We see this constantly: services ignoring carer safety, breaching trust, and families left to handle the fallout.
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Great info on how to use TDM with clozapine, especially on the 12 hour trough! Education and training is key!
Antipsychotic Blood Levels, Part 1: Core Concepts, Sampling, and the Clozapine Algorithm The key points for this activity are: • Draw TDM levels 12 hours after the last dose. Repeat any level that raises clinical concern before making important treatment decisions. • Use TDM to verify prior failures involved therapeutic levels. Don't mistake non-adherence for true treatment resistance. • Do not rely on a single unrepeated clozapine level. Variation of 20 to 30% between assays is not unusual, even under normal circumstances. psychopharmacologyinstitute.…
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An example of why little is achieved by using the complaints service, it’s not fit for purpose!
I'VE HAD ENOUGH OF THE UK BLOODY COMPLAINT SYSTEM. I honestly don't know how we've got to this point in the UK where trying to get answers, justice and accountability has become an absolute bloody nightmare. We're constantly told. “ If something has gone wrong, make a complaint. ” So you do. And then you're thrown into a world of bureaucracy that quite frankly makes you want to scream. I've been dealing with this for years now. Health boards. Social services. Complaints departments. Regulators. Different organisations, different departments, different procedures... And I'm starting to realise something. The complaints system itself is part of the problem. Because when you make a complaint, it isn't as simple as making a complaint and someone properly looking into what happened. Oh no. You have to know who to complain to. Then you have to know what process you're supposed to be in. Then you have to know what the deadlines are. Then you wait. And wait. And wait some more. Then you chase. Then you get told someone will be in touch. Then you wait again. Then you chase again. And if you're lucky, eventually you get a response. And sometimes that response just creates another bloody list of questions. So you ask those. And then you're told you've reached the end of the complaints process. What?! How can someone be expected to get justice when the system is so complicated that you need to become an expert in complaints procedures just to navigate it? I've literally had to keep records of emails, dates, names, complaint references, responses, deadlines and everything else because otherwise I genuinely don't know how you'd keep track of it all. And I shouldn't have to. I'm not a complaints officer. I'm not a solicitor. I'm not a regulator. I'm a mum who has been trying to get answers and accountability. Yet somehow I'm the one doing the chasing. I'm the one having to remind people. I'm the one having to say: “ You haven't responded. ” “ You said you'd get back to me. ” “ What's happening with my complaint? ” And this is happening across different organisations. Even now, I've emailed the @The_HCPC Fitness to Practise team chasing an update. That was six days ago. I got an email back saying they would be in touch. And I'm still waiting. And yes, I know six days might not sound like a long time to some people. But that's not the point. It's the bloody pattern. I have had no updates since the complaint was logged. It's always waiting. Always chasing. Always another process. Always another department. Always another explanation. And after years of doing this, it becomes absolutely exhausting. And then I think about people who don't have the ability, time or energy to keep doing this. What happens to them? What happens when someone makes one complaint, gets told it's complicated, gets passed from one department to another and eventually thinks. “ Fuck it. I can't do this anymore. ” Do they get justice? No. They just disappear from the system. And that's what worries me. Because how many people have given up? How many families have stopped complaining because they simply couldn't face another fight? How many people have been told they're out of time, don't know how to challenge that, and just walk away? How many people don't even know what their rights are? I don't think we should have a complaints system that depends on how bloody determined you are. Justice shouldn't go to the person who can keep fighting the longest. And yet sometimes that's exactly what it feels like. I've had to fight and fight and fight just to get people to actually look at what happened. And I'm bloody tired. But I'm also angry. Because if we have departments whose entire purpose is to deal with complaints, investigate concerns and provide accountability, then they need to actually be fit for purpose. And if they're not? CHANGE THEM. Why are we so scared of saying that?
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Clozapine Support Group UK retweeted
A carer in our community was told their family member needed detaining under the Mental Health Act. The response? No beds available, so he was left at home in crisis. (1/4)
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Amazing news for patients in NZ 👏
From NZ Health: Blood monitoring requirements for patients taking the psychiatric medicine clozapine will change from March 2027, helping reduce disruptions for patients while maintaining important safeguards. See bel… bsky.app/profile/health.govt…
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There is no question the monitoring requirements need changing and the product label needs updating. It is a deprivation to so many patients who could benefit from this life saving medication.
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Clozapine Support Group UK retweeted
Bethany Yeiszer A remarkable, inspiring account of an extremely strong recovery from schizophrenia thru clozapine/expert care. If psychiatrists use clozapine/long acting injectables to prevent ongoing relapses, patients r given the chance to recover well🙂 youtu.be/iPGd6l76l9A
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