The BAP Summer Event 2025
- Never Give Up Sz
- Jul 25
- 7 min read
I am very grateful to be part of the Experts by Experience Advisory Panel for the British Association for Psychopharmacology and was very fortunate to take part in the clinical session on myth busting the (should not be) controversial treatments. See my speech below 'The problems and benefits of clozapine from a carers perspective':
25 years ago today I welcomed my beautiful daughter into the world. At the age of 20 she became acutely unwell and was later diagnosed with schizophrenia, she has been taking clozapine for 2 and a half years. We are fortunate that clozapine was suggested after only trying 2 antipsychotics. Sadly, many of the adult children in our group have tried a variety of antipsychotics, remain unwell for many years, and still have not been offered clozapine. We know it is the gold standard but it continues to be underused.
When clozapine was first recommended, my daughter was very hesitant. She didn’t believe she needed medication due to anosognosia, and the idea of regular blood tests frightened her. However, she agreed to begin treatment at home to avoid another hospital admission.
It took a month for her team to put everything in place. They mentioned they hadn’t had any patients on clozapine for the past 6 years, which left me feeling uneasy. Given the perception of it being dangerous, its reputation as a medication of last resort and the need for regular blood tests, I did a great deal of my own research. I was desperate for my daughter to get well, and I knew I had to educate myself as much as possible, especially after the lack of support and misinformation we had already experienced. I was grateful that my daughter could begin titration at home, knowing this would be slower than in hospital. However, I must add that it was still faster than I had requested. Fast titration is a common concern among carers in our group. Many have said their children were titrated too quickly, causing adverse side effects, leading them to stop their medication and opportunity for clozapine to be effective.
After 7 weeks of my daughter starting clozapine, we hadn’t seen any signs of improvement.
During this time, she was titrated off her previous antipsychotic and a clozapine serum level had not been taken to check if she was within the therapeutic window. I was increasingly concerned about her mental state and requested that she remain on olanzapine for a bit longer, this was not allowed. As her condition appeared to worsen, I began to question whether clozapine would be effective for her but despite my doubts, we continued.
I feel it’s important to share this because some might have assumed clozapine was failing, but in my view, she needed to stay on her previous antipsychotic a bit longer, she needed a higher serum level and more time for clozapine to take effect. Also despite my requests for regular TDM, this important tool was not used to guide titration.
At around 3 to 4 months, we began to see signs that clozapine was having a positive effect. By month 7 the improvements became far more noticeable. She was less focused on her delusions, she was no longer aggressive or suicidal, we were able to have normal conversations and she was pleasant to be around. For the first time in years, we were able to go on a family holiday. I truly began to see I was getting my daughter back. Over the past 2 years, she has engaged in ongoing art therapy, attends college once a week and has held a voluntary job. These are huge milestones that I never imagined possible before clozapine. With my ongoing support she has continued on her path to recovery.
Advocating for further increases of clozapine and the use of adjunct medications to help side effects and enhance clozapine has been incredibly difficult. Despite ongoing concerns regarding my daughter and research shared with her team, I have consistently encountered resistance. My daughter rarely discusses her symptoms with mental health teams and is skilled at masking them. This has led clinicians to assume she is making informed decisions about her treatment and ability to accurately self-assess. As a result, patients like my daughter are often left as “good enough” rather than being supported in achieving a meaningful recovery. Discussions have often focused on the potential risks of clozapine, with little emphasis on the well documented benefits. This imbalance has made it more difficult to encourage her to continue with her medication. It is often overlooked that clozapine not only improves symptoms and quality of life, but it also has a lower mortality rate compared to other antipsychotics.
During her first year of starting clozapine I had many questions and concerns. Her care coordinators seemed to have limited knowledge and there were long delays in receiving a reply, which left me feeling increasingly frustrated. As a carer we play a critical role providing daily support and care for our loved ones in the community, yet we are not given the correct information to do this effectively. I have learnt a huge amount from Doctor Robert Laitman of Team Daniel Running for Recovery, a well-respected clozapine specialist in America. His book and weekly Saturday Zoom sessions have been invaluable to me and many others worldwide. His sessions provide education to carers on the safe and effective use of clozapine, successfully managing side effects and crucially installing hope that meaningful recovery is possible with the right support and care. There is so much that can be learnt from him and I highly encourage everyone to explore his protocol and attend one of his sessions.
Over the past 2 years, my daughter has experienced ongoing difficulties with having her blood drawn. We have to go to the hospital to draw her blood, then return to the clinic for processing. My daughter would not be able to manage this without my support.
She does not fully understand the urgency of having the blood test taken on time to ensure she receives her medication. No other medication is subjected to such strict monitoring, rationing and control. This situation is extremely stressful, especially when she gets an amber result and we have to go through the process again 2 days later. The thresholds need to be aligned with those used in America and the introduction of finger stick testing would significantly improve these difficulties.
Even more distressing is the fear of receiving a red result, which leads to the immediate discontinuation of clozapine, despite the fact many red results are unrelated to the medication. After 3 stable years on clozapine, the son of my friend and co-founder of the clozapine support group received two red results. As per current protocol, his clozapine was abruptly stopped, along with his other medications. Without any investigation into whether the red result was related to clozapine, he was placed on the clozapine non-rechallenge database. His levels returned to green and he was prescribed another antipsychotic which had little chance of being effective. But by then it was too late. He was already suffering a severe relapse, experiencing horrific rebound psychosis, and developed NMS for the second time. Thankfully, a knowledgeable psychiatrist later rechallenged, and he was able to restart the only medication that has kept him well. However, the damage had been done. 16 months later, he remains in a rehabilitation facility, still recovering from the trauma and suffering that was preventable. This ordeal highlights the urgent need to amend outdated protocols surrounding clozapine blood monitoring, redirecting the focus to monitor the real risks of constipation and pneumonia, considering the research and clinical evidence that has been available for some time. Despite his progress, every 4 weeks he relives the fear and anxiety of another possible red result and the potential loss of the medication that allows him to function and live. No one should have to endure this. Change is not only overdue, it is essential.
I also wanted to mention the importance of considering BEN and use of the genetic clozapine test. My daughters friend recently started clozapine, along with continuing depakote which was previously prescribed. She has had several amber results, due to a low white blood cell count. She then received a red and her clozapine was stopped.
Fortunately, she has a supportive team open to methods from Doctor Laitmans protocol.
Depakote was reduced and her blood sample was taken in the afternoon following exercise, as a result her levels returned to green, allowing her to restart clozapine. Her highly experienced team were amazed at this result and the significant increase in her levels. An assessment for BEN is now being arranged. These difficulties could have been avoided with the use of available information on drug interactions, regular TDM and the genetic test.
There is a clear and urgent need to improve the current monitoring requirements for clozapine. Both MHRA and the manufacturers must take responsibility to update the product label, licensing regulations and provide new comprehensive, guidance for all Trusts to follow. It is also imperative that clinicians receive, mandatory education and training to ensure clozapine is prescribed and monitored safely and effectively. Mistakes continue to occur, sometimes leading to loss of life. In addition, patients and carers must be given in depth guidance on clozapine management and how to recognise signs of agranulocytosis.
Like so many others, my daughter and our family have been severely impacted by the devasting effects of schizophrenia. Revisiting years of notes and reliving some of our most difficult times while preparing for this talk has given me the opportunity to reflect on just how far she has come in her journey towards recovery. The progress she has made would not have been possible without clozapine. Clozapine wasn’t a light switch moment for her, more a dimmer switch which is slowly brightening over time. For as long as she continues with this treatment, I hold onto the hope she will keep improving.
It is hard to comprehend why patients must go through this ordeal to access the only medication that provides them with a good quality of life. Especially when there is so much research and evidence that after a year of treatment, life long blood monitoring contributes to unjustified discontinuation of clozapine. It is inhumane to deny a cancer patient chemotherapy, a diabetes patient insulin and patients with treatment resistant schizophrenia clozapine.
Please join us in supporting our campaign to improve the use of clozapine, so those suffering from serious mental illness have the opportunity to benefit from this life saving medication. Thank you for listening, I hope this has given you a little insight into clozapine from a carers perspective.