Trained peer supporters can plug gap in medication advice

People with severe mental illness could benefit from peer support to help them manage their medication and improve their health, researchers at Aston University’s pharmacy school have found.

The study, published in BMJ Quality & Safety, was designed to review the complexities of medication in severe mental illness (SMI) and identify solutions. It found that without additional support, there is a risk that people with SMI won’t take their medication.

SMIs, such as schizophrenia and bipolar disorder, are typically treated with antipsychotics and mood stabilisers, but side effects, particularly early in treatment, can be extreme. As a result, patient adherence to medication regimes can be very low.

Shared decision-making

The research, led by Professor Ian Maidment and Dr Jo Howe, a research associate, aimed to understand how shared decision-making between patients and clinicians might improve this. The work was carried out as part of the MEDIcation optimisATion in severE mental illness (MEDIATE) project, which ran from November 2021 to March 2023.

As well as reviewing existing literature, Howe and her colleagues also brought together clinicians and people living with severe mental illness to discuss the issue and the direction of the study.

A person with an SMI diagnosis might only see their psychiatrist at intervals of several months. During that time, a bad reaction to medication might mean that the patient stops taking medication altogether.

Trained, effective peer support could help to plug the gaps in medication advice, the researchers found. While peer support is common in mental health, there has traditionally been a reluctance to include support for medication as part of their role.

Howe said: “People with severe mental illness often feel they don’t have enough information about their diagnosis or their medication and will instead turn to social media platforms such as Reddit, where there are lots of threads on things like schizophrenia and antipsychotics.

“This information can be right, but it might not be, and it can be hard to tell the difference without specialist knowledge. People living with serious mental illness can benefit from peer support, so it would be better to have a proper system in place and help tell them identify good pieces of advice.”

Value of empathy and shared experience

Lead patient researcher Max Carlish, who took part in the study and has lived with bipolar disorder for 19 years, said: “At least as important as the pills you’re taking is your relationship with your prescriber. That relationship is such a huge part of every service user’s life and yet it’s barely talked about and hardly researched. In the study, we found that many patients spent very little time having any kind of dialogue with their prescribers.”

Patient groups and clinicians in the study agreed that there is a role for properly trained peer support. People with lived experience can offer advice that may not be in information leaflets or occur to people who have never taken the medication.

This can be as simple as advising someone to take their medication before they go to bed if it makes them drowsy instead of first thing in the morning, or reassuring them that highly unpleasant side effects at the start might fade in time.

Empathy and shared experience can make talking to someone with the same condition and taking advice from them much easier than with a professional without that lived experience.

Maidment, the chief investigator on the study, said, “Untreated mental illness can have devastating consequences. Getting patients on the right medication that they are happy to take has been a key challenge for many years. We need to develop effective novel approaches. Our future research will focus on exploring how peer support workers can help people living with serious mental illness more effectively manage their medications and improve their quality of life.”