McPin peer researcher Sue Webster shares what she’s learnt working on a project about severe mental illness and physical health.
Sue Webster
From the beginning of the Wellbeing and HOListic health promotion for people with Severe Mental Illness (WHOLE-SMI) study, we wanted to ensure the findings were as relevant and useful as possible, and so coproduction with people with lived experience was at its core.
Our Community Advisory Group (CAG) was therefore recruited to help us examine how physical health support for people living with Severe Mental Illness (SMI) can be best delivered.
We wanted to look at what helped and what hindered this successful service delivery.
The CAG has been beyond helpful in involving the public in our research, sharing findings and ensuring inclusivity. It has been an amazing journey to be part of.
One member said they felt very included and that the boundaries between us and them were blurred. Others said that being part of the group helped with their mental health. We felt very encouraged by this and they said that they felt they had a voice.
We discussed our desire to explore how we could best support people living with SMI to be physically healthy and to live well in a way that works for them.
We sought to gain views, opinions and experiences of physical health support and gain insight into cultures, barriers and facilitators which support or challenge how we could maximise chances of success.
There is a need for tailored, individualised care within services, not “one-size-fits-all”. Living well is subjective, and includes the self, others and community.
The importance of holistic care
During the three years of the project, I helped facilitate group workshops to explore the question “What does holistic health mean to you?”.
We looked at how physical health had been , including strengths, challenges and frustrations with the current approach, Annual Health Checks and Medication Review, exploring what had been most helpful.
I found this very insightful and it was interesting to look at a of what would be an ideal, preferred, or perfect way of having physical health supported.
A more holistic approach to healthcare is definitely desired, rather than just the medical model as we are “Mind, Body & Soul”, not separate entities. We need to look at the WHOLE person.
There is a need for tailored, individualised care within services, not “one-size-fits-all”. Living well is subjective, and includes the self, others and community.
As two CAG members put it: “Look at the bigger picture, not just what is in front of you”, and “View the patient, not just the complaint”.
Communication with patients and within the NHS
Key messages that came out of the workshops were that we need to ensure that people don’t have to repeatedly retell their stories, which can cause additional trauma. NHS Passports were felt to be useful in preventing this.
There was an overall feeling that GPs and mental health teams need to work together more and that there were differences across regions – namely, the postcode lottery.
Communication between departments within services was also seen to be disappointing, particularly in light of technological advancements in recent years. Services specialising in different areas often have different communication systems, which makes it difficult to link up with each other.
There is a need for unifying services, especially between primary and secondary care. Physical and mental health were experienced as being treated separately, but medications can have side effects on both physical and mental wellbeing (e.g. weight gain).
It’s about the bigger picture – where people live, the quality of housing, access to green space, the ability to use gyms and parks to go on walking trips, having access to healthy subsidised food and improved housing. It’s all of those things.
Stigma & language
There was felt to be stigma around the label ‘severe mental illness’, and the experts by experience felt that ‘severe mental ill-health’ was preferred, or ‘mental health issues’.
Blurred lines around the eligibility criteria for the SMI register were questioned and the term was felt to be more inclusive, as mental health is a continuum which fluctuates.
What works – physical and mental health
Integrated and holistic care is improving in Cumbria, Northumberland, Tyne & Wear NHS Foundation Trust, but mental health services are finding transforming challenging as they are continually reshuffled. As project participants put it:
“It’s got to be a whole systems approach that involves more than just healthcare professionals.
“It’s about the bigger picture – where people live, the quality of housing, access to green space, the ability to use gyms and parks to go on walking trips, having access to healthy subsidised food and improved housing. It’s all of those things.
“GPs and Community Mental Health Teams are just one piece of a massive puzzle. To expect doctors and psychiatrists to improve physical health is probably 5% of the picture. It’s got to be a whole systems approach.”
It is so important that service users have a voice and are placed at the centre of research. Not only does it shape the future, but being part of research also improves their mental health.
Coproduction is key
Working on the WHOLE-SMI research study alongside the Community Advisory Group has been amazing and so insightful. Coproduction is paramount.
It is so important that service users have a voice and are placed at the centre of research. Not only does it shape the future, but being part of research also improves their mental health.
For me, I am looking forward to working on a project in the near future around Patient and Public Involvement and Engagement (PPIE) which will look at improving mental health and wellbeing in underserved populations through collaborative research.
