The power of information in medication use for people living with severe mental illness
Globally 5% of people live with severe mental illness which includes schizophrenia, other psychotic disorders and bipolar disorder. Antipsychotic medication is the main treatment option and whilst helpful in controlling psychotic symptoms, they can cause debilitating side-effects. This may lead individuals to abruptly stop medication, without the knowledge of clinicians, which for many increases the likelihood of relapsing.
Antipsychotic medication side effects vary between individuals; they include symptoms such as dry mouth, drowsiness, constipation, feelings of constant motor restlessness, or sexual dysfunction, to name a few. Some newer antipsychotics, commonly referred to as 2nd generation antipsychotics, such as Olanzapine and Clozapine, are associated with significant weight gain; rapid weight gain of 30-35Kgs can occur within weeks of commencing medication. Weight gain of this magnitude can cause significant distress and is challenging to lose. Additionally, and perhaps more worrying, antipsychotic medication is also associated with the development of serious physical illnesses like diabetes and cardiovascular disease. These contribute to people with severe mental illness on average dying 15-20 years earlier than the general population.
Given all of the above, particularly the possibility to cause harm, it is vital that service users are fully informed about the potential benefits and harms of antipsychotic medications. Sadly, this may not be the case. Indeed, service users frequently report receiving insufficient information about their diagnoses as well as any potential benefits or harms associated with their medication. Prescribers can be reluctant to routinely fully disclose side-effects in case this leads to service users not wanting to take or continue with their medication (non-adherence). However, service users need to be fully informed about the possible side-effects they might suffer from. Experiencing debilitating side-effects, particularly if unexpected, can prompt service users to suddenly stop taking their medication. Research suggests non-adherence to antipsychotics could be as high as 79%, although percentages vary significantly across studies. One reason sometimes given by prescribers for not routinely telling service users about side-effects is the assumption that service users may lack the ability to make rational decisions about their care. This could be a valid argument when service users are acutely unwell and in hospital, but it reenforces the need to ensure that information is supplied at appropriate times.
Whilst it is accepted there are no ‘perfect’ antipsychotic medications, and each service user will likely respond differently to medications, it does not mean there are no potential ‘solutions’ that can be explored when debilitating, and potentially severe, medication related side-effects emerge. Given the many different types of antipsychotics available, if service users do experience intolerable side effects, switching antipsychotics and lowering doses may help to achieve balance between psychotic symptoms and side effects. This aspect of medication management should be part of a joint discussion between the service user and the prescriber. However, if service users are unaware that the symptoms they are experiencing are side-effects, they may not be able to engage in appropriate discussions with their healthcare professionals. One distinctive feature of mental health care is that medication adherence can - and is - enforced under the UK Mental Health Act (1983). The perceived worry of coercive treatment may be one reason why some service users are reluctant to discuss side-effects; they are concerned it may result in enforced adherence.
When service users are left in the dark about their diagnosis and medication, they frequently resort to seeking information from other sources such as those with lived experience. Social media platforms such as Twitter, Facebook and Reddit are used to help individuals make sense of diagnoses, increase understanding of medication side effects, and give and receive support from others with lived experience. This behaviour can both positively and negatively influence medication adherence depending upon what information the individual seeks or finds when they resort to social media.
Most service users need and want information about their diagnoses and medication in formats that are clear and easy to understand, and they may need to be able to repeatedly access this information. For service users wishing to be involved in decisions about their medication, we should be trying to ensure they have access to balanced and honest information. This is not as simple as you’d think. Websites such as the one provided by the NHS in the UK (https://www.nhs.uk/) are not universally perceived by service users to be trustworthy sources of information. The Choice and Medication website (www.choiceandmedication.org), provides information on over 170 psychotropic drugs and 22 mental health conditions, while it is potentially a valuable website, our research within the MEDIATE project, coordinated from Aston University in the UK, has identified significant variation among service users of its existence. Furthermore, written information needs to be supported by face-to-face verbal explanation particularly as service users are likely to have questions about their medication.
Working out how we can improve access to information on antipsychotic medication and help those living with severe mental illness be more involved in their care is a key priority for the MEDIATE study, which is investigating how antipsychotic medication use can be optimised for those living with severe mental illness. More information about the research contact Jo Howe directly: j.howe1@aston.ac.uk.
The MEDIATE project is funded by an NIHR Programme Development Grant: 203683 The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care