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Caroline Macdonald, from Leith, wrote to the politicians to share her experience and press the case for Long Covid clinics.
She contracted Covid in April 2020 and initially thought her symptoms were mild. “Ten days later, after a failed return to work, I realised they were not,” she said. “Aside from terrible fatigue and headaches, I realised my breathing was altered. I would wake up with a jolt at night, having stopped breathing.”
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Partly because of pre-existing conditions, including asthma, complications set in. “Shortly after a phased return to work, in June 2020, it was obvious I was not coping. My ability to walk was affected, I was constantly exhausted, headaches continued to plague me, I noticed I was developing tremors in my hands and my ability to spell, read and write was affected.”
She suffered from “brain fog”, extreme vertigo and dizziness, and near-fainting episodes which forced her go off sick in August 2020, and she did not return to work until February 2021.
By August 2021, she had relapsed with extreme fatigue, constant headaches and continuing dizziness and further examination by cardiologists led to her symptoms being dismissed as anxiety. In March this year she suffered a seizure.
“My boss at work has been really supportive and through all this my GP has been fantastic,” she said. “But what my doctor can do is limited and she feels very strongly that the messages and communications are muddled, at best.
“In desperation I self-referred myself through ‘Edinburgh Council Help’ on Twitter. I am now accessing support and equipment I had been previously told I did not need.
“The system does not work. Diagnostics are not effective. There is no clear pathway in care. Without proper Long Covid clinics that do a full history and diagnostics, many people like me will continue to flounder and be missed.”
Ms Macdonald’s case was raised in the Scottish Parliament by Lothian Tory MSP Sue Webber, who wants Scotland to follow England’s example and set up a network of Long Covid clinics.
She said: “Too many people who fought Covid are still suffering with the consequences, months after they caught the virus. A network of Long Covid clinics would ensure that we reach everyone struggling with this debilitating condition. Evidence shows that people who suffer from Long Covid are likely to experience mental health problems such as, post-traumatic stress disorder, anxiety, and depression.”
The Scottish Government established a £10m Long Covid support fund in September 2021, and Health Secretary Humza Yousaf recently confirmed the first allocation of £3m to cover 2022-23, which will be split between NHS boards. But Ms Webber said £10m over three financial years “will not touch the sides of what’s needed.”
She said: “The SNP government must give patients the treatment they deserve. We need a clear strategy, a Long Covid care fund, more research and investment in a network of specialist clinics. When the government’s Long Covid paper was published, the ONS estimated 79,000 people were suffering from Long Covid in Scotland. Now, the ONS estimates it’s 151,000. Six months of dither and delay means that 72,000 people have not been able to access the support they were promised in September. That is why we need a network of Long Covid clinics.”