Published: 12 October 2020
Gordon Johnston is a peer researcher with lived experience of mental ill health. Gordon is a co-applicant on the University of York’s Optimising Wellbeing during Self-isolation (OWLS) project, recently funded by the NIHR and UK Research and Innovation. He describes the background to the project and how he was involved in its development.
We know that the COVID-19 pandemic has not affected everyone equally. Evidence is growing rapidly of the additional impacts on people with lived experience of mental illness – not only of the virus itself but also of the restrictions it has necessitated.
Many people who live with bipolar disorder, as I do, use a range of self management techniques to stay well. We monitor our mood, we exercise and stay active, we watch our diet and sleep carefully, and we attend support groups to be with our peers. We may also have appointments with health professionals to ensure that all remains well.
But these methods are all far more difficult to sustain during lockdown. Add in the pressures of furlough or reduced working hours, family issues, difficulties accessing childcare and providing home schooling, or the strain of living alone and seeing no one for weeks on end. Then there’s the stress of avoiding COVID-19, of accessing appointments online, and of worrying about the wellbeing of friends and family.
So is it really any surprise that rates of anxiety and depression are increasing? And for people with existing mental health conditions, there is a real risk of deterioration in both mental and physical health.
Developing research on mental health disorders
As a peer researcher, I often collaborate with research teams in universities, and have worked with the University of York several times. Peer research, sometimes called participative research, simply means using your own lived experience to augment the research process. I bring both research skills and a personal understanding of living with mental illness, and this perspective is very useful in engaging others with lived experience and also in interpreting the outputs from questionnaires and interviews.
I’ve worked with the Closing The Gap network - a project to understand why people with severe mental illness have some of the worst physical health issues - over the past year and know the importance placed on lived experience within mental health research.
A key component of the network is the Health and Wellbeing Cohort – a group of 10,000 people from a wide variety of areas and backgrounds, all of whom have lived experience of mental illness. So it seemed natural to ask this group to tell us about their experiences of the COVID-19 pandemic to help us develop a new research proposal - the Optimising Wellbeing during Self-isolation (OWLS) project.
We applied for research funding for this project from the NIHR and UK Research and Innovation, as part of their joint initiative fund to urgent research into COVID-19. Then we got the great news that we had been awarded £240,000 for a 12 month project to investigate how people with severe mental ill health problems have been experiencing the pandemic.
Working with our lived experience panel, we asked what their main concerns had been during lockdown. We developed a set of key topics: access to primary care and mental health services; digital connections and digital media; isolation and loneliness; and changes to health behaviour related to COVID-19. A questionnaire was worked up and piloted and is now ready for use.
The OWLS project will supply this first set of questions to a representative sample from the Health and Wellbeing Cohort. Several more surveys will be carried out to track any changes or emerging concerns, and we will also interview some of the participants to gain more detailed knowledge of the problems and potential solutions.
Developing solutions to help patients
I am delighted to be a co-applicant on the OWLS project. We have a strong and experienced team and we will work together over the next year to improve our understanding of exactly how this very difficult time has affected people with lived experience. We will also learn how people with lived experience have adapted to keep themselves well and whether they have been able to sustain contact and relationships with health services and with family and friends.
Analysing this data will then allow us to develop recommendations, ensuring that research can influence future policy.
We know that many people living with mental health conditions have been severely affected by the restrictions imposed during the COVID-19 crisis. OWLS will enable us to gain a better understanding of the main difficulties faced - and to develop some potential solutions.
Gordon Johnston is a peer researcher with lived experience of mental ill health.