In April 2023 a catalogue of organisations from across Lincolnshire came together to work on a project to support people living with the challenges of Long/Post COVID and Managing Excessive Fatigue. Funded by NHS Charities Together, Shine Lincolnshire, Lincolnshire Voluntary Engagement Team (LVET), Every-One, Active Lincs, and Connect to Support collaborated to create a network of support and increased accessibility to advice and information for people suffering from symptoms of Long COVID and/or Managing Excessive Fatigue.

Symptoms of Long COVID and Excessive Fatigue are extensive and can stem from, or be in combination with, other long-term illnesses. They include rapid fatigue, joint and muscle pain, headaches, and insomnia and people can feel isolated, fuelling depression and anxiety which can be symptoms in the first place, too. Symptoms don’t discriminate, they affect young and old, across families and workplaces, and in rural and urban locations. It was therefore clear from the beginning that the project needed to reach those in rural locations as well as urban and to feature support that could be sustained by local communities.

Peer Support

Shine’s Senior Peer Support Worker (COVID), Jane Kelly, has been behind the mammoth task of co-ordinating Long COVID and Excessive Fatigue Peer Support Groups across the county, alongside recruiting and training volunteers that have lived experience of Long COVID, to again, fulfil the sustainable and personalised approach to the project. The specific training has then been offered to all groups and organisations involved in the project.

So, beavering away for almost 12 months, with the generous commitment of local communities, the results have been astounding. A force of volunteers have been recruited and implemented within the NHS Post COVID Rehab Team as well as amongst the support groups. Shine have been able to host 18 drop-in sessions across the County and have since set up seven Long Covid and Excessive Fatigue Peer Support Groups. From Mablethorpe to Stamford, Alford to Sutton St James, these groups are owned and managed by local organisations that tailor them to their setting and the needs of their demographic.

The face-to-face groups, now running weekly, fortnightly or monthly, provide the opportunity for people living with Long COVID and Managing Excessive Fatigue to share their experiences over a cuppa and cake as well as to inform the overall project of what people need in terms of group provision and information and advice.  As one gentleman put it:

“I didn’t realise that suffering from Depression and Anxiety along with the other conditions I have would be so hard, but groups like this go some way to making life bearable”.

Collaborative Ventures

Simultaneously, coordinated ventures from collaborators have evolved. Every-One have developed the Lincolnshire Long COVID Co-Production Group; Active Lincolnshire have

created e-learning guides to support physical activity for people recovering from and managing Long COVID; Lincolnshire County Council with Connect to Support have developed a Long COVID Information Hub providing information from support in the workplace to support in education for children and young people; numerous active support groups have popped up such as Clip’s Mablethorpe ‘Huffer’s and Puffer’s’ and lifestyle groups like MindSpace Stamford’s ‘Wellness Essentials for Chronic Illness’.

Now, as the project reaches a new milestone – the publication of a booklet ‘Living with the Challenges of Long/Post COVID and Managing Excessive Fatigue’ – Shine have embarked on a roadshow, visiting all seven districts of Lincolnshire across three weeks. It’s already shaping up to be an incredible journey. Shine will continue to develop its webpage devoted to this topic and we will be back to tell you all about the roadshow antics soon!

If you would like to find a Peer Support Group around Long Covid/Excessive Fatigue or similar long term health condition, please visit our Long Covid support webpage www.shinelincolnshire.com/long-covid-peer-support .Here you can find the dates and locations of our roadshow and download a digital version of the booklet too.