Stigmatised, forgotten and hopeless.
This is how thousands of Scots living with Long Covid describe feeling since being struck down with the condition.
Long Covid is the term commonly used to describe symptoms that last for longer than four weeks after getting Covid-19 ranging from respiratory and cardiovascular issues such as breathlessness and chest pain to neurological conditions including cognitive impairments, headaches, sleep disturbance.
It’s a condition that affects people in different ways; however, regular complaints highlight severe fatigue, loss of concentration or memory issues known as "brain fog" and negative impacts on mental health, often to debilitating extents.
Figures from the Office for National Statistics estimate that 172,000 people in Scotland have self-reported long Covid (3.3% of the population).
With thousands of Scots suffering still months and even years after catching the virus, the Covid-19 Recovery Committee believed it was important to launch an inquiry to examine the Scottish Government's efforts in addressing long Covid and post-Covid syndrome. From the outset we sought to directly involve those with lived experience of the condition, which led us to focus an inquiry on three key themes: awareness and recognition, therapy and rehabilitation, and study and research.
The evidence we heard throughout the inquiry was harrowing.
Stolen youth, careers devastated and lives effectively put on hold. In Parliament the committee took evidence from a wide range of health professionals, academics and those living with Long Covid about the complex nature of the symptoms.
A frustrating theme in the evidence has been the apparent lack of lessons learned from other chronic illnesses such as ME or chronic fatigue syndrome.
Those living with the condition described gaslighting and being passed from pillar to post, when trying to access a diagnosis, adequate healthcare or support.
Our report notes concern over the experience of patients being unable to get the correct diagnosis and treatment for commonly associated conditions. We’ve therefore recommended that the Scottish Government, National Strategic Network and health boards work together to establish a single point of contact for patients in every health board and develop standardised guidance to streamline the process. Following the establishment of dedicated Long Covid clinics in England, we’ve also recommended that the Scottish Government provides greater leadership in reviewing the best practice in other parts of the UK and internationally to help evaluate whether they may be an appropriate development in Scotland. Our evidence also highlighted the levels of stigma faced by those with Long Covid and the impact that an ongoing lack of awareness and recognition can have on those with the condition.
We’ve therefore urged the Scottish Government to take action to tackle this and crucially, to improve awareness amongst the public and healthcare professionals to enable those suffering from the condition to finally receive the recognition and support they need and deserve. For those whose lives have been altered by this condition, we hope our report and recommendations go at least some of the way towards ending the stigma and improving outcomes for those who continue to feel the devastating impact of Long Covid.
Jim Fairlie MSP is convenerof the Scottish Parliament's Covid Recovery Committee
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