The latest data from the Office of National Statistics estimate 2.1 million people in the UK are living with Long Covid, which equates to over 187,000 people in Scotland. Yet people living with Long Covid have shared concerns that the condition is not sufficiently recognised. The ALLIANCE works to influence changes in Long Covid care in Scotland to ensure policy and practice are informed by voices of people with lived experience.

In November 2021 we published a response to the Scottish Government’s Long Covid Service Paper, outlining key recommendations and priorities which should be at the heart of Scotland’s approach to Long Covid.

In May 2022, in partnership with Chest Heart & Stroke Scotland (CHSS) we published a commissioned research report by Emma Miller to build understanding of the life circumstances of people with Long Covid in Scotland, as well as their experiences of accessing social support.

Last year the ALLIANCE established the Long Covid Lived Experience Network, in partnership with Asthma + Lung UK and CHSS to gain views from a wide range of people to directly inform service delivery.

We also published an anthology of Opinions about people’s experiences of Long Covid, spanning people with lived experience of Long Covid, those researching supports and treatment options, and people working within the third sector to support people with Long Covid.

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The COVID-19 pandemic had had a profound and disproportionate impact on third sector health and social care organisations, disabled people, people living with long term conditions, unpaid carers, and other marginalised groups.

Since March 2020, the ALLIANCE has engaged with members and partners to understand the impact that the pandemic has had on their lives. We regularly respond to consultation responses, submit briefings, and engage with the Scottish Government and Scottish Parliament to ensure that the voices of lived experience are included in decision making.

Recovery from COVID-19 presents an opportunity to learn from the issues and challenges that have been illuminated in the health and social care sector. The ALLIANCE is working to use that learning to positively influence policy and practice moving forward.

To find out more about our work on COVID-19 and Long Covid, contact Rob Gowans, Policy and Public Affairs Manager at rob.gowans@alliance-scotland.org.uk

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In June 2022, the ALLIANCE and CHSS published a new research project, carried out by Dr Emma Miller, into people’s experiences accessing social support for Long Covid in Scotland.

The project aimed to build understanding of the life circumstances of people with Long Covid in Scotland, as well as their experiences of accessing social support.

In January 2022, the ALLIANCE and CHSS published a call for participants to participate in the research. The research draws on the experiences of 32 people, shared through 22 individual interviews and three focus groups. Each participant has been given a pseudonym in the report, and easily identifiable details removed.

The completed report makes recommendations for development of support based on people’s lived experience, and is available here.

Any questions

If you have any questions you can contact Rob Gowans, Policy and Public Affairs Manager at rob.gowans@alliance-scotland.org.uk or Gillian McElroy, Senior Policy Officer at gillian.mcelroy@alliance-scotland.org.uk.

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