Clozapine Support Group UK

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

[Clozapine Support Group UK @Nevergiveupsz]

Please see link below to our petition for improvements in the use of clozapine. Please sign to help support us 💕
#Clozapine #smi #change

https://t.co/qp2V9Tvhax

[Clozapine Support Group UK @Nevergiveupsz]

@LentilLover This is outrageous. The thing that gets me is Mh teams just presume ‘by appearance’ patients understand what they are doing with medication, my daughter would have just taken them as well 😓

[POPSUK @POPSUKORG]

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.

[David Taylor @DavidTa23968240]

The MHRA is considering changing monitoring requirements for clozapine. They should read this: https://t.co/c7oDXCGEgq

[Clozapine Support Group UK @Nevergiveupsz]

Great info on how to use TDM with clozapine, especially on the 12 hour trough! Education and training is key!

[Psychopharmacology Institute @PsychopharmInst]

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.

https://t.co/nPoQYJXwJQ

[Clozapine Support Group UK @Nevergiveupsz]

An example of why little is achieved by using the complaints service, it’s not fit for purpose!

[Zoe James @ZoeJames2024]

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?

[Clozapine Support Group UK @Nevergiveupsz]

@ZoeJames2024 @keepnhshonest I gave up like so many others. The system is not fit for purpose, no accountability just cover up after cover up if u get that far.

[POPSUK @POPSUKORG]

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)

[Clozapine Support Group UK @Nevergiveupsz]

Amazing news for patients in NZ 👏

[Equal Access @EqualAccessNZ]

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…
https://t.co/P5GllWQMsL

[Clozapine Support Group UK @Nevergiveupsz]

@DavidTa23968240 Thank you for all the work you do to help

[Clozapine Support Group UK @Nevergiveupsz]

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.

[David Taylor @DavidTa23968240]

The MHRA is considering changing monitoring requirements for clozapine. They should read this: https://t.co/c7oDXCGEgq

[amandasorenson🦋 @welcomeandhello]

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🙂 https://t.co/OobtlHICHd

[Clozapine Support Group UK @Nevergiveupsz]

https://t.co/dHL5KeK4h4

[AAPP @psychpharm]

Mark your calendars for this upcoming webinar: "Pharmacists Must Lead Again: Making Clozapine TDM Standard Practice" which is available for free to all members. Register now! https://t.co/uujczxq7aT

[Clozapine Support Group UK @Nevergiveupsz]

@tillytog01 I have recently been diagnosed with rheumatoid arthritis and can relate to constant pain in hands and feet, it really does wear u down. I hope u get the help u need 💕

[Clozapine Support Group UK @Nevergiveupsz]

This represents many parents and carers experiences of advocating for the correct clozapine treatment for their LO. Guidance & education is desperately needed so clozapine can be used correctly and effectively to achieve meaningful recovery

[Beyond the Stigma @am37387]

Writing
My son takes clozapine, and most of what I've learnt has come from the Clozapine Support Group UK and Dr Robert Laitman's protocol. Unfortunately, I don't feel Wim's Protocol goes far enough, and the recent Times article is even more concerning.
I had to fight to get metformin prescribed from the start. I was repeatedly told, "We don't do it like that in this country." After weeks of pushing, it was finally prescribed five weeks into titration.
Our first community titration in January 2026 failed and was stopped on day 8 because my son hadn't opened his bowels for three days. That was the point I realised I needed to educate myself, because it became clear that many professionals simply aren't confident in using clozapine effectively.
In my opinion, UK titration schedules are often too aggressive. Side effects are most likely to occur at the beginning, yet we race to target doses rather than preventing problems before they happen. A slower titration of 12.5mg to start, increasing by 12.5mg every 4 days, is far better tolerated by many patients.
From day one, patients should be proactively managed with: • A beta blocker where clinically appropriate to manage tachycardia. • A stool softener such as docusate sodium 100mg three times daily. • A stimulant laxative such as senna 7.5mg–15mg twice daily, every single day, not just when constipation occurs. • Metformin, particularly for those at high risk of rapid weight gain and metabolic complications.
All clinics should also have access to same-day plasma level testing. Clozapine and norclozapine levels should be monitored regularly, ideally at least monthly during titration and dose optimisation, and blood samples should be taken exactly 12 hours after the last dose to ensure accurate interpretation.
I also believe we need to review how long we continue intensive neutrophil monitoring. The risk of severe neutropenia falls dramatically after the early months of treatment, yet patients remain burdened by ongoing blood tests. We should also remember that neutrophil counts are often lower first thing in the morning and can be higher later in the day.
What makes me particularly angry is the continued portrayal of clozapine as a dangerous "last resort" medication. It isn't. It is the gold-standard treatment for treatment-resistant schizophrenia. When used correctly, with proper monitoring and proactive management of side effects, its benefits massively outweigh its risks. It is the only antipsychotic proven to significantly reduce suicidal thinking and behaviour.
The real danger is not clozapine itself. The real danger is delaying it, underusing it, and frightening patients and families away from it through sensationalist reporting. If professionals were given the training, confidence and resources to use clozapine properly, many more people could achieve meaningful recovery instead of being left cycling through crisis after crisis on medications that never truly work for them.
Clozapine has changed my son's life. We should be improving access to it and improving how we use it, not creating more fear around it.

[David Taylor @DavidTa23968240]

Genetic testing for ‘BEN’ now effectively compulsory for people on clozapine https://t.co/5FZ1pPSGNP

[Luba Macpherson @LubaMacpherson]

A new policy paper by Jaime Lindsey and Margaret Doyle, “Resolving Health Disputes Out of Court” (2026), confirms what many families have been saying for years: healthcare disputes should not be allowed to escalate into traumatic court battles before families are properly heard.

The paper calls for earlier and fairer ways to resolve disputes between families, patients and healthcare professionals, including funded independent second opinions, access to medical records within a week, independent advocacy, properly functioning Clinical Ethics Committees, and genuinely independent mediation.

These recommendations are important.

But there is an even harder truth.

Families are often failed before court, and then failed in court as well.

By the time a case reaches the Family Court or Court of Protection, enormous damage may already have been done. Trust has broken down. Families have been labelled “difficult”, “unreasonable”, “obsessive”, or “hostile”. Genuine safeguarding concerns may have been reframed as parental interference. Requests for medical records, second opinions, medication reviews, or proper consultation may have been ignored for years.

Then, when families finally reach court, they are often treated as the problem rather than as people who have been forced into litigation because every earlier safeguard failed.

The policy paper recognises serious themes: poor communication, lack of trust, defensive organisational culture, “group think”, family exclusion, and even the use of safeguarding processes in ways that can silence or delegitimise dissenting families.

That matters.

Because once a family is wrongly characterised, that characterisation can follow them into court. It can shape reports, evidence, professional assumptions, and judicial perception. The result is that the court may not correct the failure, it may simply formalise it.

Out-of-court resolution is urgently needed. But it must not become another tick-box process controlled by the same institutions whose decisions are being challenged.

Families need:
proper access to medical records;
genuinely independent second opinions;
independent advocacy;
transparent ethics processes;
mediation that is not used to pressure families into agreement;
and courts that scrutinise public bodies with the same seriousness with which they scrutinise families.

No parent or family carer wants to go to court. They go because they are desperate, because they are not being heard, and because the person they love is at risk.

The system must stop treating family challenge as misconduct.

Sometimes family challenge is the only remaining safeguard.

Policy Paper' available here:

https://t.co/qQ2urYDUwR

[Beyond the Stigma @am37387]

My son who has a diagnosis of schizophrenia is now on clozapine, but the uncomfortable truth is that he only got there because I spent months advocating for it.
After failing six antipsychotics, no one suggested treatment-resistant schizophrenia or discussed clozapine as an option. I had to research it myself, challenge decisions, and keep pushing until someone finally listened.
I am just one of an army of parents and carers across the UK advocating for better awareness and earlier use of clozapine. Access to the most effective treatment for treatment-resistant schizophrenia/psychosis should not depend on how knowledgeable, persistent, or vocal a family member happens to be.
Families should not have to fight this hard for evidence-based treatment. Our loved ones deservr, we will continue to fight this broken & toxic system
#clozapine #smi #psychosis #brokensystem #nottinghaminquiry #bbcnews #theindependent

[Patrick McGorry @PatMcGorry]

"Clozaphobia" Why is the most effective treatment for Schizophrenia shunned? Same issue with Lithium for Bipolar. Self defeating behaviour by psychiatry & health systems. Part of a wider lack of implementation of evidence based care & undermining of confidence by bad faith actors

[Patrick McGorry @PatMcGorry]

@BadreNicolas In early psychosis careful combination of lowest possible dose APs (&Rx of depression, mania) + intensive EB psychosocial interventions, esp vocational & relational therapy plus early use of clozapine & support of families is absolutely “disease modifying” & trajectory changing.