An Aberdeen mum-of-three battling long Covid is set to travel to Germany for specialist treatment this summer.
Award-winning entrepreneur Kate Stott, 35, has developed mobility issues, severe headaches and chronic pain after contracting the virus in March 2020.
Her Crohn’s Disease has also worsened in the months since her infection and she is now relying on lifelong medication.
“I’ve not been able to work since last summer. I can’t leave the house. I’m using crutches,” she said.
“I was proud of being able to have a fulfilling career and being able to pick up and drop off the children to and from school. We were doing really well until Covid hit.
“This is a new reality now. On a day-to-day I have to continuously weigh up having a shower versus cooking a dinner. You have to just do the basics.
“On top (of that), you can get flare-ups that can put you in bed for days and weeks on end.”
She added: “Hopefully the science catches up quickly so nobody else is left suffering like me for two years. We need to get to the root of the problem. Public knowledge is not where it needs to be and people need to know the risks.”
Clinics in Germany have developed groundbreaking treatment to remove tiny blood clots, which some scientists believe are potentially to blame for long Covid symptoms.
Ms Stott is among an estimated 150,000 Covid “long haulers” across Scotland who are struggling to get treatment for the post-viral condition.
Symptoms can include heart palpitations, chest pain or tightness, “brain fog”, extreme tiredness, shortness of breath and insomnia.
There are calls for greater investment in long Covid research amid warnings existing services are inadequate to cope with the level of need.
The Scottish Government has pledged an additional £3m for NHS boards to improve care, with a new £120,000 pilot project with Chest, Heart and Stroke Scotland also launching in the Lothians.
Ms Stott said the treatment of long Covid sufferers is “inhumane” and called for easily accessible specialist clinics across Scotland.
“It’s completely unfathomable in the year 2022 to have such a debilitating illness affecting jobs, careers and not have direct access to healthcare to help it,” she said.
“Why are people losing jobs during a cost of living crisis and pleading for money because they are suffering from chronic illness?
“I think there’s a whole turnkey solution that needs to be provided by the government. It’s very much a lack of government strategy at the moment. It’s not the NHS’s fault; they need more. We need direct access to specialist healthcare, jobs protected for those recovering from illness and people need financial support.”
Elsewhere, a nurse-turned-patient suffering with long Covid says they feel “left to rot” as the NHS scrambles to treat soaring cases across Scotland.
Cass MacDonald, 47, has endured symptoms such as severe exhaustion, memory loss, insomnia and breathing problems since catching Covid in April 2020.
They have been off on long-term sickness since August last year. As they live alone, they fear losing their job and home.
They told STV: “I remember going back to work after 10 days and I had to go home. I was gasping for breath and couldn’t hold a conversation.
“I would walk five or ten minutes and be off sick the next day. It was horrendous.
“I am exhausted by the slightest thing and it takes too long to recover. I don’t shower as often as I would like. I am literally housebound. I rely on ready meals because I can’t stand up long enough to cook.
“I have dyslexia but I never had problems with spelling a word, which I do now – remembering the names of famous actors, finding the right words to express something. My memory has been shot to pieces. It is like my brain was trying to wade through treacle.”
MacDonald insists more needs to be done to raise awareness of the risks surrounding long Covid and more support for sufferers in the workplace.
“It’s a Russian roulette – there is no way of knowing you’ll develop long Covid. This is a multi-system condition.
“I know people who have endocarditis, developed diabetes, lung damage and neurological issues but if you go on [NHS] Covid Recovery, it’s not mentioned.
“People are being told they are fine when they are not. It seems the government don’t want to believe how big a problem this is. Our numbers are growing and more must be done.
“I worry every day I will lose my job. Long Covid needs to be properly recognised by employers. And if we can’t get back to work, we need compensation so we can have a roof over our heads. This is a mass disabling event not seen for decades.”
The Royal College of Nursing say urgent action is needed to help those struggling from the condition, including children.
Its annual congress in Glasgow has heard first-hand experiences from the profession of treating long Covid. And they heard from some who are now patients themselves, unable to work because of debilitating symptoms.
Helen Donovan, Public Health Nursing Lead at the Royal College of Nursing, is calling on the Scottish Government for more staffing and improved services.
She added: “People are waiting far too long to access services. We don’t have enough nurses and we don’t have enough commitment and drive to tackle this issue.
“This is a complex long-term condition that may require different therapies and treatment depending on the individual’s needs. We need really good evidence on what to spend it on coupled with the staff to deliver that holistically. That’s a real challenge for us.”
Health secretary Humza Yousaf said the NHS pilot project in the Lothians is a digital innovation that will help NHS boards adapt to meet the needs of people living with long Covid.
He said: “I look forward to seeing the full results of the pilot exercise and considering how digital solutions can help healthcare professionals to access information and resources to support the identification, assessment and management of people with long Covid.
“We are spending £3m this year to support NHS boards to develop and deliver the best models of care appropriate for their local population’s needs, which can include a Long Covid clinic if appropriate.
“We have established a Long Covid strategic network bringing together clinical experts, NHS boards, third sector organisations including Chest Heart and Stroke Scotland and those with lived experience to guide how we plan and design care and ensure our £10m Long Covid support fund is targeted at the areas where additional support can make the biggest difference.”