Expert by Experience for the BAP

I am very grateful to be part of the first Experts by Experience Advisory Panel for the British Association for Psychopharmacology for the next two years. I was fortunate to be able to attend the BAP 2024 Summer Event and give a short speech which I wanted to share below:

Thank you for having me here today, I appreciate the opportunity to speak with you.

I am a mum to a 24 year old daughter who has schizophrenia. When she became unwell it took me a year to obtain help from services. During that year her illness deteriorated further, and she was actively looking at ways to end her life. I believe if she had been prescribed medication sooner it could have prevented further damage to her brain and delay in her recovery. She tried 2 antipsychotics neither of which significantly helped and caused intolerable side effects. She then started clozapine, it took 3-4 months before we noticed small improvements and she has continued taking it since. With a lot of support from her family she has remained out of hospital and on the gradual pathway to recovery.

When someone lacks insight into their illness but is still able to mask their symptoms, it can make getting help extremely difficult. Treatment teams are still making decisions by what they see, rather than the information we provide, which is preventing our children from getting the help they desperately need. This is an ongoing issue for myself and most of the carers in our group. We are the experts of our children and until they are well enough to advocate for themselves, we need to be given the opportunity to do it for them. We are often unheard, ignored and excluded from decision making, when we can provide a wealth of information to assist. Education and training need to be available on anosognosia, it is rarely mentioned despite being one of the main symptoms of schizophrenia and reasons for poor adherence to medication.

We need to be able to trust that medications are being prescribed correctly and used to their full potential to achieve the highest possible level of recovery. Accurate up to date guidance and training need to be available to clinicians as well as carers. For me Dr Laitman, Dr Amador and Bethany Yeiser, who all have lived experience of serious mental illness, have been an invaluable resource of information and help.

Living with someone who suffers from psychosis has a huge impact on every family member. Clozapine is the only medication which has helped my daughter and for our family it has been lifesaving. This has led us to campaign for improvements in its use.

• We believe clozapine needs to be made more accessible, it is a lifesaving medication, and the stigma and fear of its use needs to end.

• Clozapine needs to be prescribed correctly in a manner which maximises effectiveness to achieve meaningful recovery.

• Monitoring requirements need to be improved and updated.

• And most importantly we need to end stopping clozapine incorrectly due to a red result, the catastrophic consequences and suffering caused by this can be prevented.

I hope you will be able to support us, thank you