This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
People with severe mental illness can struggle to self-manage long-term physical conditions. Research highlights their need for personalised support. This could include flexible appointments, longer consultations in which they could discuss both physical and mental health conditions, and proactive follow-up to help them manage their medication and their health.
In this study, service users, carers and professionals described the impact of mental and physical symptoms on each other. The overwhelming nature of severe mental illness meant it was often prioritised over physical health. Many people were reluctant to engage with services because of previous distressing healthcare experiences, such as being admitted involuntarily. The study calls for services which bring together support for physical and mental health conditions.
People with severe mental illness live shorter lives than the general population and have higher rates of long-term physical illness, including diabetes and heart disease. This study found that they, and their carers, need more support than others to self-manage long-term physical conditions.
Researchers say their study should inform changes to services to help people with severe mental illness self-manage their physical conditions.
The issue: People with severe mental illness can struggle to manage physical health conditions
Severe mental illnesses are long-term and impact people’s lifestyle, behaviour and family life. Many people with conditions such as schizophrenia have psychosis and lose some contact with reality. They might see or hear things that are not there (hallucinations) and believe things that are not true (delusions).
People with severe mental illness have higher rates of physical illness including lung conditions (chronic obstructive pulmonary disease), diabetes, and heart disease. Many have more than one physical health condition. Overall, people with severe mental illness live 15 to 20 years less than the general population.
Programmes aimed at helping the general population self-manage physical conditions do not address the difficulties experienced by people with severe mental illness. The barriers to self-management they face include stigma, discrimination, housing insecurity and poverty. This could partly explain why previous efforts to help people with severe mental illness make healthy lifestyle changes have had limited success.
Research into self-management programmes tends to exclude people with severe mental illness. In this study, researchers sought to understand what helps or hinders people with severe mental illnesses from self-managing their long-term physical conditions.
The study was part of a larger project called DIAMONDS, which is investigating tailored solutions to help people with severe mental illness self-manage type 2 diabetes.
This study included people who had both a severe mental illness and at least 1 long-term physical condition. Their carers and healthcare professionals also took part. Researchers conducted 41 interviews and observed people doing an activity of their choice, for instance cooking, food shopping or walking in the park. They ran 5 focus groups, and 3 main themes emerged.
Theme 1: Severe mental illness dominates lives
- Severe mental illness is unpredictable, inescapable and can be overwhelming, service users said. Some carers found that the constant threat of mental health symptoms in the people they care for, also restricted their lives.
- Short-term relief is prioritised over longer-term health especially among service-users who struggle with basic self-care (such as showering or exercising). Professionals said people smoked and drank alcohol, for example, to help them cope with distressing mental health symptoms, even though this could make their physical health worse.
A service-user said: "I try to do what I can, but some days it’s too hard to do even the basics. I don’t do any cooking for myself, or anything like that, that’s all done for me, or I live on things that are straight from the fridge."
Theme 2: Severe mental illness and physical health symptoms interact
- Physical symptoms such as pain, fatigue and disability add to the burden of mental illness, and can make mental health worse.
- Side-effects of medications for mental illness include weight gain or kidney damage, which can damage physical health over the long-term.
- Previous distressing healthcare experiences, for instance involuntary detention under the Mental Health Act 1983, made some service users reluctant to engage with healthcare and attend appointments; others were motivated to take medications to avoid another involuntary admission.
A service user said: "Kidney disease is something that’s ongoing because of my lithium because I’ve taken lithium for … 20 odd years. And that causes your liver, your kidneys to sort of not produce."
Theme 3: People need personalised support
- Carers felt that healthcare professionals sometimes think physical symptoms are due to mental illness, or do not believe people have the symptoms they are reporting. This can delay diagnoses. Carers, family, and friends, who help people to attend appointments and interpret information, also need support to encourage service users to self-manage.
- Service users would like to see healthcare professionals who can address both their physical and mental health. Health professionals believe secondary specialist health clinics need to be reorganised to allow this.
- Tailored self-management activities can be developed when service users are asked what matters to them. Service users resisted digital services, often because of concerns that web-based communication might prompt psychotic symptoms, such as paranoia.
A service user said: "I have a community nurse that comes every fortnight who gives me my injection and she will sit with me for a good half an hour and I can offload to her and it’s really good that I can have that time and if anything goes wrong, she can get me an appointment to see my psychiatrist, straightaway if I need to."
Why is this important?
People with severe mental illness have higher rates of physical illness and a shorter lifespan than the general population. Helping people self-manage their long-term physical conditions might in turn improve their mental health.
This group of people are at an increased risk of many physical conditions. In addition, they do not have the same experience of healthcare as others and may have been disbelieved or stigmatised in the past.
This study shows that people with severe mental illness, and their carers, need more support to self-manage long-term physical conditions. This could mean healthcare professionals visiting people’s homes and increased continuity of care (seeing the same professional frequently).
Support needs to be tailored. Typically, when people repeatedly miss appointments without giving a reason, they are discharged back to their GP and need a new referral. People with severe mental illness who do not attend appointments need flexible, proactive follow-up and support. They also need longer appointments, in which both physical and mental health conditions can be discussed, along with enjoyable activities to help them increase their physical activity.
This study did not collect data about people’s characteristics, such as their ethnicity or employment status. Further research could explore whether barriers are the same regardless of these characteristics.
The team used their findings to develop an app to help people with severe mental illness self-manage their type 2 diabetes. The intervention includes a workbook to include those who are reluctant to use technology. It is being evaluated in a UK-wide trial.
Further research should explore how people with lived experience can help other service users navigate healthcare services. Patient navigators, trained to escort and support their peers through multi-levels of care and entitlements, could provide an important service for people with long-term conditions.
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This Alert is based on: Carswell C, and others. The lived experience of severe mental illness and long‑term conditions: a qualitative exploration of service user, carer, and healthcare professional perspectives on self‑managing co‑existing mental and physical conditions. BMC Psychiatry 2022;22:479.
Other research from the same group: Coventry PA, and others. Determinants of physical health self-management behaviours in adults with serious mental illness: A systematic review. Frontiers in Psychiatry 2021;12:723962.
Also from the same group: Balogun-Katung A, and others. Exploring the facilitators, barriers, and strategies for self-management in adults living with severe mental illness, with and without long-term conditions: A qualitative evidence synthesis. PLoS One 2021;16:e0258937.
Information about physical health in severe mental illness: Physical Health in Severe Mental Illness (SMI). NHS England – South West.
Information about the health gap between people with severe mental illness and the general population: Closing the Gap: Inequalities and severe mental ill health. University of York.
A study testing an intervention codesigned by people with severe mental illness to help people with psychosis lose weight: Holt RIG, and others. Structured lifestyle education to support weight loss for people with schizophrenia, schizoaffective disorder and first episode psychosis: the STEPWISE RCT. Health Technology Assessment 2018;22.
An NIHR Evidence Collection highlighting the reinforcing nature of mental and physical health conditions.
An NIHR Alert showing the benefit of education and support groups for carers of people with severe mental illness.
An easy-read version of the Mental Health Act from the NHS.
Funding: National Institute for Health Research Programme Grants for Applied Research.
Conflicts of Interest: Some of the authors declared conflicts of interest. Full details can be found in the original research.
Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.