Supporting people with Long Covid to get their lives back on track

In the first of our series on Long Covid, Joseph Carter reflects on the role of the third sector in supporting people with Long Covid.

It’s estimated that more than 100,000 people in Scotland are living with long-term symptoms following a COVID-19 infection, and many struggle to access the specialist support they need to manage their symptoms. Asthma UK and British Lung Foundation Scotland has collaborated with a coalition of 15 charities, to create an online assessment tool that helps people identify their symptoms and access support services. The charity’s Head in Scotland, Joseph Carter, explains more.

Long Covid is a new and unpredictable condition, with wide-ranging symptoms that have the potential to be totally life changing. Many people living with Long Covid have told us that their lives have been turned upside down by symptoms as varied as breathlessness, extreme fatigue, and brain fog, and that they’re struggling to get the dedicated support they need to manage these symptoms.

We’ve worked with a number of other organisations to try and offer people the support they need. This has culminated in the creation of our new tool, My Long Covid Needs (this link will take you away from our website).

We want to help people with Long Covid get the best advice and support they can

It’s unsurprising that people are turning to charities like Asthma UK and British Lung Foundation Scotland for support. We’ve had thousands of calls to our helpline from people concerned about COVID-19, including many from those who are worried about long-term symptoms and frustrated by the lack of support out there for people in their situation.

Long Covid is a multi-system condition with a range of symptoms. To ensure the My Long Covid Needs tool provides the most comprehensive advice and represents the diverse needs of people with the condition, we developed it collaboratively with a number of other organisations with different areas of expertise, including Long Covid support groups and charities Diabetes UK and Stroke Association. More than 70 people living with Long Covid gave feedback and helped test the tool.

More about our Long Covid tool

The new online assessment tool is designed to help people feel better supported to manage the impacts of Long Covid and improve access to support services, including from the NHS and charities. People using the tool input information about their physical symptoms, practical and emotional concerns, and the impact on their day-to-day life, which then brings up useful advice and links to other relevant support services, and automates a report that users can give to their GP or healthcare professional.

The tool’s automated report function means people living with Long Covid don’t have to tell their story multiple times to different healthcare professionals. This is a frustration that many people with the condition have shared with us. Patients have reported feeling “exhausted” by having to repeatedly relay their symptoms. One woman told us: “I am fighting to be heard by relevant authorities. My situation has sky-rocketed my anxiety, affecting my breathing.” Another said: “I feel like I haven’t been taken seriously or believed by medical professionals or friends. It has made me angry as I feel weak and trapped in my own body.”

Although services are being developed to address the needs of people with Long Covid, our research suggests many people experience barriers, including feeling that their condition is not being taken seriously. People have told us that their doctors have been “very dismissive” and that there is “very little support” out there for them. We hope the tool will help people manage their symptoms and provide vital support and advice for people living with the condition.

The My Long Covid Needs tool offers vital advice and support for people as they navigate their way through this new and unpredictable condition, and provides patients with an easy-to-read report that they can share with their doctor. We’d encourage anyone experiencing Long Covid to visit the tool and for healthcare professionals to share this resource with their patients.

We will keep fighting for people with Long Covid

We hope My Long Covid Needs will help people manage their symptoms and provide vital support and advice for people living with the condition. But we know this isn’t a replacement for specialist health care – this is something we will keep campaigning for.

The problem of Long Covid is not going to go away, and it’s vital the Scottish Government invests in training and employing more specialist NHS staff to ensure that people with Long Covid can access the specialist care they so desperately need.

For more information on My Long Covid Needs, please visit the tool website: https://mylongcovid.org.uk (this link will take you away from our website).

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