Children and adults with Long Covid yesterday bravely told of their pain and suffering as they demanded urgent action from the Scottish Government.
One Long Covid patient Calum O’Dwyer told how he has to take a portable bed with him wherever he goes because his condition is exacerbated by being upright, either sitting or standing, for any length of time.
And a clutch of children heartbreakingly told of how the illness had wrecked their little lives.
Addressing a press conference hosted by Labour’s health spokeswoman Jackie Baillie they begged to be taken seriously and offered more support.
Currently 155,000 Scots are suffering with Long Covid, some of whom have been affected for more than two years, with numbers rising.
Baillie pointed out the Scottish Government’s £10 million announcement for Long Covid over three years was the equivalent to just £19 per patient per year which is “frankly inadequate”.
Baillie said she had called the press conference “because of the anger of members of the cross party group following the Long Covid debate in parliament and the evident lack of understanding at the action coming from the Scottish Government.”
The Long Covid Scotland Group and Long Covid Kids agreed pointing our lengthy waiting lists for specialists and services while doctors gave testimony of other actions which could be taken for diagnosis of complications but it was the evidence of those with “lived experience” which really drove the agenda.
Calum, 30, was an engineer before contracting Covid in March 2020 and while the initial symptoms of the virus did not appear too serious, five weeks later he felt he had been “hit by a bus”.
He suffered muscle weakness, fatigue, brain fog and couldn’t even wash dishes because he couldn’t lift them.
He had to move back home with his parents and two years later he is experiencing issues with his heart, lungs, stomach, brain and nervous system.
He has had to switch careers and because his fatigue is exacerbated by sitting or standing he says he carries “a timer in my head” so he knows when to lie down.
Calum took his portable bed to Parliament with him and , close to tears, said without it he would be confined to his parents’ house.
But he said whenever he visited his GP he was repeatedly told there was no treatment.
He said: “What the government is doing is not enough. It is like they have a check box which needs to be ticked off.”
And he said the Scottish Government should have the “ambition” to lead on research into long covid.
Nine-year-old Anna, filmed at home while lying under a blanket on her sofa, said: “I don’t feel very well every day. I get headaches and tummy aches, constantly feeling hot or cold.
“My feet get so sore and I can’t walk.
“I like my wheelchair but I feel everyone is looking at me.
“I am so tired. I have five per cent energy every day, I can’t really do anything.
“I’d really like t get back on a horse. I’m really fed up of feeling like this.”
Abi, 16, only managed to say her own name but her mum read her statement: “I got Covid in September last year and I am too exhausted to talk.
“My main symptoms are extreme fatigue and brain fog. Before I got Covid I was very smart and loved to sing and play the piano and hang out with my friends.
“Now I can’t do simple maths. I can only watch simpleTV.
“I have lost practically all my independence and my ability to do things I enjoy.
“It seems no-one knows how to help me and I wish I had magic pill to make it all go away.”
Liz, 16, meanwhile pointed out Long Covid “is not a mental illness”.
She contracted Covid in March 2020 and has had to stop going to school.
She said: “I can’t have long conversations with my friends without it tiring me out. I have seen my friends about four times in two years.
“I have to use a wheelchair to get about but I don’t get out often because I get tired just going up the street and back.
“I don’t choose to be in a wheelchair for the fun of it. I would rather be with my friends.
“The government needs to be a lot clearer about what Long Covid is. They need to make more resources available.”
The press conference also heard that just 66 per cent of people with Long Covid remain in employment and there were also calls for better financial support for those with the condition as well as better support for children who need to be away from the classroom.
Joint chair of the cross party Long Covid Committee, Alex Cole Hamilton, said the Scottish Government had a “manifest disinterest” in Long Covid.
And he said: “Long Covid is the biggest mass disability even since the First World War but in Scotland we are nowhere.
“The Scottish Government is spending more on a referendum into independence than they are on Long Covid and that’s an insult.”
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.”
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