Earlier this year, we published results from the EMERALD Study:
Severe mental illness refers to a group of illnesses, such as schizophrenia, that greatly interfere with life activities. People with severe mental illness die earlier and have worse physical health than the general population. They are more than twice as likely to develop diabetes and to get more complications from having diabetes. It is currently unclear how severe mental illness interacts with diabetes or how having both conditions influences health-care use.
We looked at general practice records from large numbers of patients across England. We also interviewed 39 people with severe mental illness and diabetes, nine family members and 30 health-care professionals across the North West, and Yorkshire and the Humber.
In people with severe mental illness, older age, being from an ethnic minority, living in a deprived area, having multiple health conditions and using certain medications predicted the development of diabetes.
For people with both severe mental illness and diabetes, being older, living in deprived areas and having lots of different health conditions led to poorer physical and mental health outcomes.
Participants with severe mental illness said that they put dealing with their mental illness above caring for their physical health. They also struggled to manage lots of health problems.
Physical health problems were often overlooked by health-care services because physical and mental health problems are often treated in separate services. A keyworker responsible for co-ordinating care could help to bridge this gap.
Good social support, diabetes knowledge and better mental health (like better mood) were things that helped people with severe mental illness to better manage their diabetes. Health-care staff wanted more training about physical or mental health problems.
Participants’ low levels of physical activity and poor mental and physical health were barriers to effective diabetes management. These barriers need to be thought about when designing better treatments.
At a recent DIAMONDS Voice meeting, we had the chance to speak with some of the key stakeholders about what they think of the study, their role in it, and the findings. Here is what they said:
Najma Ashraf, Mental Health and Wellbeing Co-ordinator, RoshniGhar
I can relate to the findings from my experience working at RoshniGhar; with clients who have severe mental illness and diabetes. If in a crisis, especially in a low mood it is so difficult for them to manage their diabetes
The women we support at RoshniGhar experience inequalities accessing the health service - there are language and cultural barriers. A lot of misunderstanding and they often feel their voice is not heard. The areas our women struggle with; poor health literacy, not knowing what support is available, no advocates, attending and the process of the health care appointments are a big challenge.
What would we like to see change?
Information with visual aids, available in different languages and generally more language support.
Interventions that are culturally adaptable and meet the needs of their lifestyle.
Education and self-management programmes help them manage their diabetes and overcome their difficulties. Services/support available when they are in a crisis so they know what to do; especially when their mood is low.
Taking part in the EMERALD Study
The EMERALD team visited RoshniGhar in 2019.
They came with an interpreter. From my perspective it was interesting and encouraging that these issues were recognised.
It was interesting to hear what some of the barriers and conditions are, for example when in a low mood they didn't want to be active or want social support.
After the visit we (at Roshni Ghar) were keen to address this and be more proactive to invite diabetes services and to help them manage their diabetes and to refer clients to these services.
We had a good experience working with the team and with access to an interpreter. Our women found the presentations/updates useful and at the right level and so they have a better understanding.
Irina Sidorova, DIAMONDS Voice member
I am impressed by the research and the support received so I can take part in the work.
Taking part in the DIAMONDS and EMERALD research has been a part of my recovery and has been the best research experience
Overall, the paper is amazing. It's a start, to raise awareness to the public and the services of the complex issues for those who live with severe mental illness and other physical health difficulties like diabetes. Especially the comment about the services working together, mental health and physical health is often not joined up.
In the past a lot has been anecdotal but now to see it as research evidence is amazing. Evidence is so important as otherwise it's a constant debate!
I'm in agreement with the importance of self-education and management. It is so important to look after yourself and work in cooperation with the services. The health service can only do so much.
The next step: it's important to develop a self-management programme to educate people and encourage self-management to help people to change their behaviours so they can help themselves and improve their health.
Gary Hellewell, DIAMONDS Voice member
I enjoyed working in the small groups and developing the questions. I helped shape the interview questions and made sure they were suitable for people with SMI
There were challenges taking part in the groups; as it can be upsetting hearing about people's challenges but listening to each other was important and valuable in taking part in the research. It's also valuable for the researcher to hear our stories.
It's important to get the researchers to think more about the people's experiences to help them design meaningful ’real life' questions for the research. As a result we were able to highlight the areas that were not raised by previous research, e.g the importance to explore the issue of sleep.
We also took part in workshops where we helped to develop characters for the animations to describe typical stories from the preliminary findings.
My personal experience with the health service and CPN was good unlike some of the findings. The health and mental nurse practitioners need the training as dealing with SMI and diabetes is so complex.
The paper is so important and it needs to be out there in the public domain
I'm overwhelmed to be part of this and so proud!
Photo credits: Unsplash and Angie Ross. Photos and names shared with permission.