A new website that will offer support and helpful free resources to people who suffer from Long Covid is being launched in Scotland.
Long Covid Support Scotland is the brainchild of the team behind The Cheyne Gang©, a small Scottish Charitable Incorporated Organisation (SCIO) that uses singing to support breathing control in people living with long-term respiratory conditions such as Chronic Obstructive Pulmonary Disease (COPD), Asthma, Bronchiectasis, as well as other conditions that cause breathlessness.
The website, which was launched on 23rd January 2023 includes useful bite-sized videos, resources, and practical advice for people who have long covid as well as their families.
The Cheyne Gang© was created by three practice nurses in Edinburgh who recognised the lack of supported self-management for people with most long-term respiratory illnesses and realised that Long Covid support is following a similar trend in Scotland.
After receiving enquiries from people with Long Covid for advice on breathlessness management, the team explored the provision of care for Long Covid sufferers, discovering that the equity of access to care is difficult and divided across the country.
Having recruited interested professionals from disciplines including speech and language therapy, respiratory physiotherapy, and occupational therapy they created the Long Covid Support Scotland website resource which provides videos addressing the common symptoms and offering practical measures such as gentle exercises, singing, and relaxation. The videos are designed to allow for pacing and choice.
Pauline Waugh, Co-Founder of the Cheyne Gang, said:
“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 long covid 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.”
We hope our website will provide both Long Covid sufferers and their families and friends advice and support to help manage some of their symptoms, develop a better understanding of those symptoms and signpost them to further helpful websites.
“We hope to provide a great resource that our colleagues within the NHS can highlight to their patients, and we wish to receive feedback that will allow us to add to our Long Covid Support Scotland site.”
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.
The Scottish Government took the decision to channel money into Long Covid research, which is producing some interesting and helpful results. However, this approach left a gap in the day-to-day support for those living with the multi-faceted symptoms of Long Covid.
While people can be referred on a pathway to individual specialist health areas, there is, to date, no provision for supporting and managing the condition in a holistic manner, in Scotland.
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.
The work of The Cheyne Gang© 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.
Gillian McLaren Scott, a singing teacher and voice specialist, who advises and trains singing group leaders for the Cheyne Gang, said:
“Working as a vocal coach post pandemic has seen singers, both professional and amateur, struggle with inconsistent breathing patterns, persistent coughing, and general anxiety about the condition of their voices. Stealth, in breathing and singing exercises, has been key to overcoming symptoms of fatigue and working towards more healthy and sustainable voicing.”
The team engaged with colleagues in primary, secondary, and social care to explore what was already being offered with regards 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.
The website can be found here www.longcovidsupportscotland.com