Research programme addresses health inequality for people with severe mental illness

The DIAMONDS programme aims to improve physical health of individuals with a severe mental illness.

Living with a severe mental illness, such as schizophrenia or bipolar disorder, comes with an additional heavy burden – a stark and unsettling disparity in physical health.

It is an alarming fact that individuals with a severe mental illness have a 10 to 20-year life expectancy gap compared to the general population, due to their heightened risk of poor physical health.(1)

This inequality has driven Professor Najma Siddiqi, Professor of Psychiatry at Hull York Medical School, to address this pressing health disparity.

"This major inequality is a human rights issue; people with a severe mental illness are being denied the right to a healthy life."
Professor Najma Siddiqi

Led by Professor Siddiqi, the DIAMONDS research programme funded by NIHR aims to test a bespoke educational package to help people with severe mental illness and diabetes to manage their diabetes better, using diabetes as an exemplar of a complex chronic condition. The programme will also explore how this approach can be adapted for other long-term conditions.

Diabetes is more than twice as common in people with severe mental illness and has poorer outcomes than the general population. In England, around 44,000 people live with both conditions (15% of all people with severe mental illness).

Diabetes can lead to complications including heart disease, stroke, eye and kidney disease and premature death, and contributes significantly to the lower life expectancy for people with severe mental illness.

Disparity in physical health

Professor Siddiqi acknowledges there are many reasons why there is such a disparity in physical health in people with a severe mental illness.

Lifestyle factors are an important cause, but so is mental illness itself, affecting motivation, memory, and health literacy. Some medications can cause lethargy and sedation, increasing the risk of weight gain and poorer control of blood sugar.

The problem is worsened by various agencies not talking to each other, leaving people who are struggling with poor mental health to self-manage their illness, but failing to provide the relevant support and education.

Professor Siddiqi explained, "Mental health and physical health services are often separated, making it difficult for those with a severe mental illness to navigate the complex healthcare system effectively. This separation contributes to poor or no management of their physical health conditions."

DIAMONDS seeks to bridge this gap.

Developing an intervention

The team have designed an intervention which was co-designed with service-users, carers, and clinicians, that supports self-management for individuals with a severe mental illness. Codesign, in this context, involves the joint development of interventions or care pathways in collaboration with those who will utilise them or be responsible for their delivery.

Professor Richard Holt, Professor in Diabetes and Endocrinology at the University of Southampton and co-investigator and co-author of the study said, "Self-management is fundamental to looking after diabetes.

"Most people with diabetes only spend a few hours a year with a healthcare professional and have to spend the rest of the time looking after their diabetes themselves.

"Diabetes self-management education is designed to give people the skills, knowledge and confidence to take responsibility for their diabetes.

"Living with a severe mental illness alongside diabetes creates additional challenges and additional support is needed to ensure people can manage both conditions successfully."
Professor Richard Holt

"This research aims to bridge this gap by creating a bespoke educational programme for people with severe mental illness and diabetes."

The DIAMONDS programme began by gaining insights from people with a severe mental illness, their families, and healthcare staff about living with diabetes and a severe mental illness, in a study called DIAMONDS Quest.

These insights, combined with a systematic review of the literature on self-management of long-term conditions in people with severe mental illness, informed the development of the DIAMONDS intervention. The intervention was co-designed with service-users, carers, and clinicians in a series of workshops. Publications from the study are available on the DIAMONDS website.

The DIAMONDS programme then undertook a feasibility study to test the intervention delivery and data collection procedures, which informed the definitive randomised controlled trial.

The trial, which aims to enrol around 450 participants, is currently underway to test the DIAMONDS intervention - a supported diabetes self-management programme designed specifically for people with severe mental illness - to check it is acceptable for people and that it can be successfully delivered.

It seeks to determine whether the additional support provided by DIAMONDS coaches leads to improved diabetes control and other related outcomes, such as quality of life and physical activity.

'Change One Thing'

The programme involves training staff at clinical sites who have experience of working with severe mental illness or working on behaviour change, to become DIAMONDS Coaches.

These Coaches work with people with a severe mental illness and diabetes, offering personalised support regular sessions aimed at improving diabetes self-management.

Coaches will meet with people every one to two weeks for six months, and work through a workbook to identify goals that person would like to work on, and then support them through that process. People can learn about diabetes, self-management, sleep, and physical activity.

DIAMONDS Voice, a group of people with lived experience, has also played a vital role in advocating for this initiative.

Gary is a member of DIAMONDS Voice and faces challenges with anxiety, depression, as well as high blood pressure, angina and type 2 diabetes.

Reflecting on his involvement since 2016, Gary said "Engaging in the study has taken me on a rollercoaster ride of research. I have helped co-produce the Change One Thing app and workbook by drawing from my own lived experiences.

"I have also been to conferences speaking about my role in the Diamonds Voice. My hope for the future of DIAMONDS is hopefully to spread the word to other people around the country or worldwide."

Extending the research to South Asia

The DIAMONDS research programme also has ambitious plans to extend beyond the UK, to South Asia, where diabetes is a particular and increasing problem.

Recognising the resource constraints in many parts of South Asia, the programme intends to make the most of the available resources to provide comprehensive healthcare that includes both mental and physical aspects.

This means integrating mental health care into routine healthcare services, so it becomes a natural component of healthcare delivery. This approach is crucial for breaking down stigma and improving the overall well-being of individuals with a severe mental illness.

The programme aims to build capacity in South Asia, both in terms of training healthcare providers and also researchers and research governance, which is vital for improving the quality of care.

As a key takeaway message, Professor Siddiqi emphasises the importance of addressing mental and physical health together and that anyone, no matter where they live, should have equal rights to a healthy life.

Professor Siddiqi explained, "There’s huge gain by thinking of mental and physical health together, not separately. By providing additional support and improving the integration of mental and physical health services, the DIAMONDS programmes could make a significant impact on the lives of people with a severe mental illness."

For more information about the project, please visit the DIAMONDS website or contact Professor Najma Siddiqi. Professor Siddiqi is a member of the Mental Health and Addictions Research Group.

References

(1) Gov.uk - Premature mortality in adults with severe mental illness (SMI)