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 3 months earlier. Participants had been recruited through online advertising and voluntary sector community organisations. Semi-structured qualitative interviews were conducted by telephone or video-conference by researchers with lived experience of mental health difficulties, and, following principles of thematic analysis, were analysed to explore changes over time in people’s experience of the pandemic. RESULTS: We interviewed 44 people, achieving diversity of demographic characteristics (73% female, 54% White British, aged 18–75) 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” describes how participants reacted to reduced access to formal and informal support through personal coping responses or seeking new sources of help, with varying degrees of success. The second theme describes “accumulating pressures” from pandemic-related anxieties and sustained disruption to social contact and support, and to mental health treatment. The third theme “feeling overlooked” reflects participants’ feeling of people with mental health conditions being ignored during the pandemic by policy-makers at all levels, which was compounded for people from ethnic minority communities or with physical health problems. CONCLUSION: In line with previous research, 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00127-022-02254-6.
What has changed in the experiences of people with mental health problems during the COVID-19 pandemic: a coproduced, qualitative interview study