About the Project

Prescribing antipsychotics has increased steadily in England over the last decade. For serious mental health conditions like schizophrenia, they are usually prescribed with the view of keeping the patient on them indefinitely. Antipsychotics are also prescribed off-label for conditions like anxiety or insomnia. Many people want to stop taking antipsychotics due to side-effects or the medication no longer working however when people stop taking the medication they can experience severe withdrawal effects.

Antipsychotic side effects are defined as undesirable symptoms of a medication, that do not contribute to the intended therapeutic effect. Current research highlights the positive impact of service user involvement in their medication management, leading to improved adherence and so desired clinical outcomes. National Institute for Health Care and Excellence advocates for shared decision-making (SDM) in serious mental illness (SMI). SDM is defined as bilateral information shared between clinician and service user and involves decision-making to be divided between both parties. Little is known of the wider factors like support from health care professionals or network of friends and family on optimising treatment for people who have experienced psychosis.

A recent qualitative study highlighted how adverse effects experienced by the service user, primarily influence medication decisions. Recognising the past negative experiences is a significant contributing factor in optimising antipsychotic medication. Most people on antipsychotic medications often feel excluded, describing a hostile and paternalistic approach from healthcare professionals. There is a need for understanding and having compassionate conversations with service users, so that people on antipsychotic medication can be supported and alternative treatment options can be explored to address antipsychotic side effects and their impact. Tools for monitoring side effects have been developed but their use as part of shared decision making is unclear.

Depending on the interest of the applicant, the project could focus specifically on:

Young adults: Antipsychotic prescribing in children and teenagers doubled between 2000 to 2019. Young adults as a patient group are not the largest age group on antipsychotic medication, however, many of them are in a point of transition from childhood to adulthood and starting to be responsible for their own health. Especially if the antipsychotics were started at a point of crisis, limited conversation may have taken place around the medication itself or if it did, it may not have involved the young person themselves but their parents or carers.

Peri-menopausal women: Women with SMI face distinct challenges during menopause that can significantly impact their quality of life. They often report exacerbation of symptoms and have increased risk of relapse during menopause. Women often find their current medication in effective and require higher doses during menopause.

People who have experienced antipsychotic withdrawal: Currently there are no established guidelines on how to stop taking antipsychotics which may be the reason behind psychiatrist reluctance to support conversations about side effects and why many people reduce or stop their antipsychotics without a conversation with a prescriber. However, there is emerging evidence that slow and cautious reductions will improve withdrawal outcomes for people with schizophrenia who want to come off or reduce their antipsychotic medication.

This study will explore the experiences of people on antipsychotic medication, their friends and family members as well as health care professionals on practices that encourage and enable shared decision making. The study will aim to develop a tool that can be used as a supportive framework to empower people and their family members to have open conversations about antipsychotic medication and their side effects. Involving people with lived experience in the design of the study, and also in the analysis and designing implementation, is a key part of the PhD. The lead supervisor has established links with local support groups to help with this.