Long Covid sufferers in Scotland have considered travelling abroad to receive specialist treatment for the “debilitating” condition which has left some of them “housebound”, MSPs heard.
Those suffering with the long-term effects of coronavirus shared their experiences at a cross-party meeting with experts and MSPs in the Scottish Parliament on Thursday.
The Long Covid Scotland campaign group has now issued nine actions it says are required by the Scottish Government.
They include urging ministers to pressure the UK Government to recognise the condition as a disability under the Equality Act 2010 and providing additional funding for specialist clinics.
Callum O’Dwyer, 30, has suffered with the illness since March 2020 and said it is tough to see people travel and move on with their lives while he is still “locked down” by the virus due to muscle weakness, fatigue and heart, lung and brain issues.
Mr O’Dwyer, who now works for a Scottish Labour MSP, has had to move in with his parents in Aberdeenshire to receive care for the condition.
He said: “Whenever I speak to my GP, he tells me the same thing: ‘There’s no pathway, and there’s no treatment.’
“For so many people, huge aspects of their lives have been completely torn away from them with long Covid and the Scottish Government might think in terms of what they’re doing is enough – but it is not enough.”
He called on Health Secretary Humza Yousaf to listen to the pleas of sufferers and invest in clinics and research into long Covid, adding: “Have that ambition because some of us are barely holding it together.
“Long Covid isn’t going anywhere and we’re not going to take a substandard level of care.”
He said he has considered travelling to Germany for apheresis treatment – but he cannot afford the “considerable expense”.
The treatment is based on the fact that Covid-19 can cause blood clots and damage the lining of small blood vessels, potentially causing long Covid.
Catherine Ramsey, 22, has fallen behind in her university studies because of the debilitating effects of long Covid.
She caught the virus in December 2021 and has been told by doctors “there was nothing they could do” after tests came back normal.
Freja Lundberg, from Inverness, who tested positive in January 2021, has been left too frail and terrified to leave the house without assistance.
She requires the use of a wheelchair because of the extreme muscle fatigue and breathlessness.
She said the condition has left her “housebound” and said it is frustrating to know there are currently no care options.
MSPs at the cross-party meeting also heard video testimonies of children in Scotland who are unable to go to school or see their friends because of the effects of long Covid.
Speaking to the PA news agency after the meeting, Scottish Labour deputy leader Jackie Baillie, who chaired the meeting, said long Covid sufferers are being “abandoned”, as she pledged to take their plight to Scottish Government ministers.
She said: “At the moment [suffers] are not getting the support they need.
“They are being abandoned to deal with the condition largely by themselves and the distress it causes, the ill health, the impact on employment, just being able to get out and about, is missing for people with long Covid.
“It is our intention to take those stories directly into the heart of the Scottish Government, and into the Scottish Parliament, and try and secure change for them.”
Dr Sandesh Gulhane, a Scottish Conservative MSP and a GP, said his patients are “crying out for help”.
Scottish Liberal Democrat leader Alex Cole-Hamilton said during the meeting that sufferers in Scotland are better off going to England for treatment, where they can access long Covid clinics, because of the “dismissive” response from the Scottish Government.
The Scottish Government said there is no “one size-fits all” approach to tackling long Covid due to the range of symptoms.
A spokesperson said: “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 £10 million Long Covid Support Fund is targeted at the areas where additional support can make the biggest difference.
“The first tranche of long Covid funding was announced last month and will enable NHS Boards to continue to develop and deliver the best models of care appropriate for their local population’s needs, this can include a long Covid clinic if appropriate.”
Adding the condition as a disability is a reserved matter to the UK Government, the spokesperson added.
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