Support website for long covid sufferers launched by member group in Scotland

Pauline Waugh, Chair and co-founder of singing group Cheyne Gang, talks to us about a new free resource for people suffering from long covid.

As a group, the Cheyne Gang came to be because three practice nurses (myself, Anne Ritchie and Sarah Marshall) were researching singing as a self-management tool for people living with long-term respiratory conditions. So it came as no surprise when we started receiving enquiries from people living with covid for advice on breathlessness management.

We looked into the provision of care for long covid sufferers, but found that the equity of access to care is difficult and divided across the country. According to the Office for National Statistics around 1.86 million people in the UK have long covid which would equate to over 150,000 people in Scotland. While there is funding going into long covid research that is producing some interesting results, this approach has left a gap in the day-to-day support for those living with this condition. To date, there is no provision in Scotland for supporting and managing the condition in a holistic manner. 

'Long covid sufferers can have a range of symptoms but the most reported are fatigue, breathlessness, changes in the voice and brain fog, which are frequently seen together.'

We knew that some of the approaches we use in the Cheyne Gang would benefit people with breathing difficulties associated with long covid. However, we were also acutely aware that this is a multifaceted condition and that we needed to draw on the expertise of professionals from other disciplines if we were to provide a safe service. With that in mind, we recruited interested professionals from disciplines including speech and language therapy, respiratory physiotherapy and occupational therapy.

We also engaged with colleagues in primary, secondary and social care to explore what was already being offered with regard to support and rehabilitation for long covid, concentrating on some of the main symptoms that are impacting physically, mentally and socially on people’s lives. Long covid sufferers can have a range of symptoms but the most reported are fatigue, breathlessness, changes in the voice and brain fog, which are frequently seen together. We focused on these common symptoms in relation to long term respiratory disease, so prompting an investigation into how they might support people with long covid experiencing similar symptoms. 

An example of the type of video resource available on the website - 'How can singing help me?', by Julie Harvey

The result was the Long Covid Support Scotland website, with helpful free resources for managing the symptoms of long covid. Some of the videos offer advice and explanation about symptoms, while others offer practical measures such as gentle exercise, singing and relaxation. They are designed to be 'bite-sized' to allow for pacing and choice.

Here is some of the feedback we've received:

'It is a brilliant and much needed resource – and so fantastic to have the work intrinsically connected to singing.'

'I found all the information on long covid really good. You have covered so many areas which is really helpful. I loved the yoga and pilates.'

'I think the website’s strength is the focus on breathing and relaxation.'

Long covid is an evolving condition, so if we have missed something, please let us know by emailing and we will try to update the site accordingly.  

Find out more about Long Covid Support Scotland on their website.

Find out more about The Cheyne Gang on their website and follow them on Facebook / Twitter.