The ALLIANCE has published an anthology of Opinions about people's experiences of Long Covid.

In Spring 2022, the ALLIANCE invited a range of people to contribute to an Opinion series, focused on their insights into Scotland’s support for people living with Long Covid. The series spanned people with lived experience of Long Covid, to those researching supports and treatment options, and people working within the third sector to support people with Long Covid. We have now compiled these Opinions into an anthology (available here), to further inform discussion about how Scotland supports people with Long Covid.

Reading these Opinions, two things stand out. Firstly, the breadth and depth of people’s commitment to improving support and treatment options for people living with Long Covid. The writers in this anthology represent only a fraction of the wider work in this area, but are still remarkable for the range of insight they offer. Secondly, two and a half years on from the first recognised cases of Long Covid, the relative lack of progress in ensuring structured support for people living with Long Covid, and their families, is striking. This slow progress is a clear challenge on how far Scotland has to go in terms of meaningful support for people with Long Covid.

That said, there remain key opportunities for Scotland to embed support for people living with Long Covid within policy and practice. The National Care Service, which is currently progressing through the Scottish Parliament as the National Care Service (Scotland) Bill, stands in a position to potentially improve people’s access to social care. Streamlined access to social care could make a significant different to many people living with Long Covid’s day to day life.

The third sector, and a rapidly growing body of Long Covid charities and campaign groups (especially those, like Long Covid Kids and Long Covid Scotland, which are run by and for people living with Long Covid and their families), offer significant expertise to influence how State supports should engage with and support people with Long Covid – from health and social care professionals to social security – and offer a range of peer support and self management strategies.

Many of these groups and individuals included in this anthology are participating in the newly-founded Long Covid Network (hosted by the ALLIANCE in partnership with Asthma + Lung UK and Chest Heart & Stroke Scotland), which aims to establish a network for people affected by Long Covid to gain views from a wide range of people to inform service delivery. Finally, research into effective treatments for Long Covid as well as self management is key to progress and improving the quality of life of people affected by Long Covid, and – as outlined by Nick Sculthorpe – has the potential to benefit people with a range of other energy limiting conditions.

There is a risk, in some quarters, that as the rhetoric of “moving forward” and “living with COVID-19” increases, less attention is paid to Long Covid. It is essential that stakeholders and decision-makers in Scotland maintain a clear focus on treating Long Covid. This work should include supporting research into effective treatments, designing efficient access routes and information about State entitlements (including social care) for people living with the long-term effects of Long Covid and their families, and supporting the vital work of the third sector.

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