What has changed in the experiences of people with mental health problems during the COVID-19 pandemic? Findings from follow-up interviews using a coproduced, participatory qualitative approach

Purpose: We sought to understand how the experiences of people in the UK with pre-existing mental health conditions had developed during the course of the COVID-19 pandemic. Methods: In September-October 2020 we interviewed adults with mental health conditions pre-dating the pandemic whom we had previously interviewed three months earlier. Participants had been recruited through online advertising and voluntary sector community organisations. Interviews were conducted by telephone or video-conference by researchers with lived experience of mental health difficulties and explored changes over time in experiences of participants of the pandemic. Results: We interviewed 44 people, achieving diversity of demographic characteristics and a range of mental health conditions and service use among our sample. Three overarching themes were derived from interviews. The first theme Spectrum of adaptation: to difficulties in access to, or the quality of, statutory mental health services, through developing new personal coping strategies or identifying alternative sources of support. The second theme is Accumulating pressures: from pandemic-related anxieties and sustained disruption to social contact and support, and to mental health treatment. The third theme Feeling overlooked: A sense of people with pre-existing mental health conditions being overlooked during the pandemic by policy-makers at all levels. The latter was compounded for people from ethnic minority communities or with physical health problems. Conclusion: Our study highlights the need to support marginalised groups who are at risk of increased inequalities, and to maintain crucial mental and physical healthcare and social care for people with existing mental health conditions, notwithstanding challenges of the pandemic.