25/06/2025
New Clozapine Support Group
Clozapine is a second-generation antipsychotic medicine sometimes used to treat schizophrenia. It is often effective where other antipsychotics have been tried and failed. Many people (professionals and sufferers included) consider clozapine to be the gold standard for treatment of resistant schizophrenia.
Now a new clozapine support group for people living with schizophrenia has been formed in the UK by parents of sufferers. The new group wants to improve awareness about the effectiveness of clozapine and to campaign for its more effective use within the UK mental health services.
They tell us their main aims are:
o Clozapine should be offered to everyone who does not respond to a trial of two standard antipsychotics.
o Clozapine should be prescribed in a manner which maximises its effectiveness and tolerability to achieve a ‘meaningful recovery’.
o Clozapine should not be stopped unnecessarily.
o Monitoring requirements need to be amended to help more people start and continue with clozapine.
As well as creating a website and Facebook group, the support group have also held meetings with UK government agencies and manufacturers of clozapine. The group’s page already has some 300 members and they have collected over 1500 signatures of support for their campaign.
The new group argues that mental health teams do not receive enough training and guidance to prescribe clozapine correctly and that training, information and guidelines are outdated and not adequate for clozapine use; they need to be improved and updated. There should be one updated guide on the use of clozapine for all National Health Service (NHS) trusts to follow. Training in the use of clozapine must be made mandatory for mental health staff and there should be in-service training for mental health workers on a regular basis to keep up to date with changes in thinking and prescribing practice.
The group commented to LWS: “In the US, the Food and Drug Administration’s recent meeting regarding the re-evaluation of clozapine risk evaluation and mitigation strategies (REMS) resulted in a 14 to one vote to end the clozapine REMS, which was implemented in February this year. The European Medicines Agency (EMA) also recognises that maintaining lifelong monthly blood monitoring after the first year of treatment contributes to unjustified discontinuation of clozapine and that it is time for the revision and updating of the EMA's blood monitoring rules”.
Karen and Melanie, co-founders of the new group, said: “There needs to be investment in educating physicians on the timely, safe, and effective use of clozapine along with diligent patient care and monitoring. We need to ensure that people with treatment-resistant schizophrenia (TRS) have access to life-saving treatment. It is inhumane to deny a cancer patient chemotherapy, a diabetes patient insulin, and patients with TRS clozapine.”
The group can be contacted by clozapinegroupuk@gmail.com.
Important note.: Living with Schizophrenia does not recommend any particular method of treating schizophrenia. Treatment plans must be carefully created by the medical professionals and by involving sufferers and family carers in the treatment process.