A peer researcher studying severe mental illness and physical health shares why they think services should be person-centred and holistic.
Sue Webster
Working on the WHOLE-SMI (Wellbeing & Holistic health promotion for People with Severe Mental Illness) study as a Peer Researcher for the past year has been very interesting and insightful, and has reinforced my belief in holistic healthcare.
The study is investigating how we can best promote physical health for people living with SMI (Severe Mental Illness) in the North East, focusing on promoting holistic health. This deals with health as a whole and not just in part; for example, how much physical health checks, diet and exercise improve mental health.
Having worked as a nurse all my life, in both primary and secondary care, I have seen how much mental health impacts physical health and vice versa and am a firm believer in ‘no health without mental health’.
This led me to complete a degree in Integrative Counselling Theory, which gave me a keen interest in mental health research, particularly after having had a period of depression myself.
I am also a PPI (Patient and Public Involvement) member of Tees, Esk and Wear Valley (TEWV) Mental Health Trust Involvement and Engagement Team and a carer for
[It] places the person, not the disorder, at the centre of healthcare. It is a whole system recovery-orientated approach focusing on the ‘person over the illness’.
Focusing on the person over the illness
As a PPI member, I learnt of the Trieste model of mental health, which really took my interest. This places the person, not the disorder, at the centre of healthcare. It is a whole system recovery-orientated approach focusing on the ‘person over the illness’.
It incorporates a mental health service where people are treated as guests, not patients, and they have been the pioneers of deinstitutionalised mental healthcare, which is an organisational shift from hospitals to community-based alternatives.
People’s rights and freedom are respected with social inclusion and anti-stigma campaigns and there is a high rate of social recovery, employment and independent living.
I certainly believe in a biopsychosocial holistic approach, rather than just the medical model. I have already seen its benefits in the first phase of WHOLE-SMI.
What holistic healthcare means to people with lived experience
In the first phase of the WHOLE-SMI project, I was involved in contacting and setting up Community Advisory Groups (CAG) of Experts by Experience (ExE) from the North East, which meet quarterly.
In the first CAG, I supported a presentation of our research study and what we aimed to achieve. We asked, “what does holistic health mean to you?”. Their advice included how to involve the public in research, how to share research findings and how to ensure recruitment is inclusive.
I also attended an event on ‘Involving marginalised groups in research’ at Northumbria University, looking at an organisational shift from hospitals to community-based services.
It was great to hear about other studies in the area and the fantastic work being achieved, particularly by the Lawnmowers Theatre Company, which is now included within the Mental Health Nurse training in the North East.
The presentations, from both community members and academics, focused on public involvement, community engagement, learning disabilities and multiple and complex needs.
We recently had a Team Analysis Day at our base in Newcastle University, reviewing our collected data from one-to-one interviews with ExE and stakeholder focus groups and workshops.
Common themes included lack of information sharing and the desire not to have to constantly repeat information, which can be very traumatic. NHS Health Passports were found to be of great benefit, but not widely used.
Social prescribing was found to be very positive, but not offered everywhere, highlighting a need for less disparity of services in different regional areas.
Experts by Experience at the heart of research
Input from ExE was invaluable and it was great to have this at the heart of our research and be able to incorporate co-production and co-creation.
We learnt about barriers to physical healthcare, such as poor transport in rural areas, which was found to limit access and engagement. Both service users and staff desired a one-stop shop, with access to ECGs, phlebotomy, blood pressure monitoring and advice and information.
A lack of resources at times was highlighted. The side effect of certain medications is weight gain and there was a desire for more support and advice on this too.
There was a feeling that physical health and mental health were treated separately and that people need to be treated more holistically, as we are mind, body and soul. Person-centred care, tailored to the individual was seen to be paramount, as there cannot be a one-size-fits-all approach to healthcare and treatment.
Peer Support Workers and Recovery Colleges, along with third sector external organisations were seen as invaluable.
Co-production was found to be improving with ExE, , an involvement & engagement networking group between staff, service users and carers, but not all staff were aware of it and there were still the same problems arising as ten years ago.
Virtual appointments were sometimes seen as beneficial, but others prefer face to face interaction, so flexibility is required.
Social prescribing was found to be very positive, but not offered everywhere, highlighting a need for less disparity of services in different regional areas. This reinforced the postcode lottery, where resources in different areas can create inequality of service provision.
Programmes, which allowed staff to combine physical health appointments with having conversations around any mental health support required, were found to be really helpful too.
What does the future hold?
Phase 2 of the WHOLE-SMI study is about to start. I look forward to sharing more knowledge with the lived experience, clinical and academic communities – particularly understanding the need and appetite from service users for a new holistic-orientated lifestyle intervention for people living with severe mental illness.
We will also be researching the label SMI and the stigma that can be associated with the phrase and developing a hub for resources and guidance, supporting and incentivising peer researchers, developing accredited training and evaluating best practice.
I wish to help make a difference, as I have seen first-hand, after working in the NHS for many years, how research shapes the future.
