Latest news with #LongCovidScotland
The Herald Scotland
07-08-2025
- Health
- The Herald Scotland
My nephew's life was put on hold by Long Covid
Long Covid cuts a swathe through the lives of children and adults alike, and the numbers affected are staggering. In Scotland alone, there are estimated to be over 185,000 people with this disease, living with debilitating symptoms like crushing fatigue, brain fog, digestive problems, breathing difficulties and muscle weakness. My lovely nephew is one of those people. He was an energetic student in his final year at Glasgow University when he caught Covid-19 aged 22 and has been laid low by Long Covid since. He was full of plans, to work and travel, but instead, had to give up his job and move back in with his parents. Read More: It's been like watching someone being drugged and restrained. His body cries out for sleep but rest doesn't refresh him. He could sleep for 10 hours and still wake up feeling shattered. Most days since being infected, he has had a painful upset stomach. Like other people with Long Covid, he has bad days and better days, but can never predict what's coming. Some days he can do things, others he can barely hold a conversation. All that is bad enough, but what compounds the distress is the lack of meaningful support. To say that NHS support services are inadequate to meet people's needs would be a laughable understatement. My nephew's experience of GPs he has seen is that he knows more about Long Covid than they do. In fact he puts it more bluntly than that: 'Most don't have a clue.' In spite of ministers' insistence that there are clear referral pathways for people with Long Covid in Scotland, reports by the ALLIANCE and Chest, Heart and Stroke Scotland show that the overwhelming majority of people struggle to get the support they need – a finding that is borne out by members of Long Covid Scotland. Again and again, people report having to research treatments themselves or turn to private GPs to get help that is not offered on the NHS – that's if they can afford it. As my nephew puts it, people feel 'abandoned' and have to figure out the way forward for themselves. The inadequacy of NHS support services has been the focus of campaigning by charities Long Covid Scotland and Long Covid Kids since they were set up, but they are at the end of their tether. This week, in protest at the Scottish Government's inaction, the two organisations formally resigned from the Scotland's Long Covid Strategic Network, which reports to the Scottish Government. They are exasperated and angry that after announcing a £4.5m one-year, non-recurring fund for people with Long Covid, ME, and chronic fatigue in December, ministers have yet to allocate a penny of it, and that this comes after years in which a previous £10m failed to deliver proper support for people with Long Covid. Trust has broken down. 'What was framed as a hopeful investment now stands as a symbol of inaction and broken promises,' says Jane Ormerod, the chair of Long Covid Scotland. The charities' verdict is withering. Instead of support being ramped up, they state that some services are being decommissioned, with still no provision at all for children and young people in most areas. They say that people with lived experience of Long Covid have consistently seen their input sidelined and that most health boards have disengaged from the network but the government hasn't intervened. They state: 'The Scottish Government remains functionally absent from the network: no oversight, no leadership, and no enforcement of its own Long Covid Service policy requirements. 'Faith has been lost. 'Too many times we have listened to assurances within the network followed by inaction.' Scots with Long Covid, they say, have been 'repeatedly let down'. That they've run out of patience is entirely understandable. A Holyrood Committee inquiry two years ago found that 'almost all individual respondents to the call for views spoke of a lack of awareness among medical professionals, GPs in particular, in terms of assessing patients, diagnosing long Covid and providing treatment options'. People told the Holyrood committee they had been 'gaslighted' and struggled to get their experience taken seriously. This just shouldn't happen, given the strong the international evidence that exists on Long Covid and how it presents. Research into Long Covid is ongoing, and no one expects a miracle cure, but the dim understanding of it among many medical professionals, the lack of clear treatment pathways for many sufferers and the history of broken promises, fall well short of what people have a right to expect. The effect of it all is that many people in the grip of a life-changing illness are being left without meaningful medical care. The Public Health Minister Jenni Minto says she regrets the charities' departure from the Long Covid network and that ministers are working with NHS Boards, preparing to set out how the £4.5m will be spent. But the charities have no faith in government promises. Perhaps the saddest aspect of all this is the experience of children and young people. Helen Goss, the Scottish lead for Long Covid Kids, says the system 'continues to fail the very people it was created to support'. The charities quote an 11-year-old with Long Covid in Edinburgh, who says: "I have nothing, no health, no fun, no life. No one seems to care.' Four years on from the height of the pandemic, the lack of meaningful support for children and adults with Long Covid is hard to excuse. The Scottish Government promises action – again – but for those living with this every day, it's way too late. Rebecca McQuillan is a journalist specialising in politics and Scottish affairs. She can be found on Bluesky at @ and on X at @BecMcQ
STV News
06-08-2025
- Health
- STV News
Long Covid: 'The Scottish Government failed sufferers - the trust is gone'
Campaigners have branded Scotland's £4.5m fund for people living with long Covid 'a symbol of inaction and broken promises,' claiming no money has been spent since it was announced. The fund, unveiled in December 2024, is designed to support people with long Covid, ME, and related conditions. Long Covid Scotland and Long Covid Kids have now formally resigned from the Scottish Government's Strategic Network for the Long-Term Effects of Covid-19, accusing ministers of failing to deliver promised services, uphold policy commitments, or support patients. Public health minister Jenni Minto said the government will 'shortly be setting out' how the investment will provide specialist support across Scotland. Charity leaders say the decision to leave wasn't easy but that remaining was 'no longer tenable'. Jane Ormerod, chair of Long Covid Scotland, said: 'There has been no apology and no indication of how we move forward. Decisions about the money keep being delayed. 'We've had challenges being seen as equal partners, and communication has been poor throughout. Despite feeding back about many of these issues, little has been done. Trust has been lost. 'It makes me angry and disappointed that we're not seeing much change from three, four, five years ago. Services are still not meeting people's needs.' STV News 'I've lost part of my identity' – Cass was forced to stop working in 2023 Former nurse Cass Macdonald, 50, was forced to give up their job in 2023 due to worsening long Covid symptoms after contracting the virus during the first wave of the pandemic. Cass said the government has 'failed' in its public health response to long Covid. 'There are failures in public health messaging. You don't know what infection can disable you – diabetes, cardiac damage,' they said. 'Nothing is being done about air quality in schools or hospitals, or about seasonal viruses. We should be masking up, especially in healthcare. People are trying to pretend it hasn't happened. 'We should have had clinics five years ago, looking at all the research and properly engaging to relieve symptoms. They've done none of that. It's peer groups and charities helping us. They've messed this up.' STV News Long Covid campaigners outside parliament Cass first became ill in April 2020 after developing a fever and losing their sense of smell. At first, the symptoms seemed mild, but their breathing worsened, stamina plummeted, and fatigue and brain fog set in. 'Before Covid, I was walking an hour a day as part of my job. Afterward, if I pushed myself, I was wiped out. I couldn't get out of bed. I couldn't get dressed for days on end. I was scared that if I went into hospital, I wouldn't come out.' Over time, Cass developed tremors, neuropathic pain, breathlessness, and non-epileptic seizures. They were eventually diagnosed with functional neurological disorder and mast cell activation syndrome. Their mobility deteriorated to the point that they now use a wheelchair. STV News Cass suffers from a variety of physical and neurological symptoms due to long Covid 'I woke up gasping for breath at night, like my nervous system just wasn't working. As a nurse, I knew what that meant. I went to bed wondering if I'd wake up in the morning. 'Nursing was all I ever wanted to do. It's part of my identity. Now that chunk of me is gone. I'll never get that back. Covid took that decision out of my hands.' Campaigners say Scotland's failure to deliver specialist long Covid clinics is leaving tens of thousands without care. An estimated 100,000 people in Scotland are living with long Covid, with around 40% unable to work, according to a report by Chest, Heart and Stroke Scotland. STV News Helen Goss (left) with her daughter Anna, who has long Covid Helen Goss, Scottish lead for Long Covid Kids, said their resignation from the government network was a last resort. 'We entered 2025 with cautious optimism. Instead, six months on, we are forced to resign from a system that continues to fail the very people it was created to support. 'It wasn't an easy decision because we've worked in good faith with the Scottish Government and national services for nearly five years.' Minto said: 'The Long Covid Strategic Network is managed by NHS National Services Scotland and has greatly benefited from these organisations and their important work. We regret this decision and remain committed to learning from the experiences of those with long Covid. 'We are working hard with NHS boards and will shortly be setting out how our new investment of £4.5m will deliver specialist support across Scotland for long Covid, ME, Chronic Fatigue and other similar conditions. This builds on the more than £9.4m already allocated through our £10m Long Covid Support Fund, with further allocations to follow later this financial year.' Get all the latest news from around the country Follow STV News Scan the QR code on your mobile device for all the latest news from around the country
Scotsman
05-08-2025
- Health
- Scotsman
Charities quit SNP Government's Long Covid network over 'broken promises' as £4.5m fund not spent
Sign up to our daily newsletter – Regular news stories and round-ups from around Scotland direct to your inbox Sign up Thank you for signing up! Did you know with a Digital Subscription to The Scotsman, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... Two charities have quit a strategic network set up by the Scottish Government to tackle long Covid, citing frustration at delays to using funding in what has been described as a 'damning' decision. Long Covid Scotland and Long Covid Kids have penned a formal resignation letter citing the reasons for leaving the National Strategic Network for Long-Term Effects of Covid-19. Advertisement Hide Ad Advertisement Hide Ad Two long Covid charities have quit a key Scottish Government network. Picture: Michael Gillen The Government body had been set up with the aim of improving the health and wellbeing of those living with long-term Covid effects. But the bosses of the respective charities have accused SNP ministers of 'inaction and broken promises', with the Government accused of failing to spend £4.5 million in funding allocated in the Scottish Budget in December last year. Opposition parties said those who had shared 'painful' experiences of suffering from long Covid had been 'shamefully ignored and sidelined' by the Government. Advertisement Hide Ad Advertisement Hide Ad The charities, which were founding contributors to the long Covid network set up in 2022, listed systemic failure, lack of leadership and a breakdown in trust as reasons for quitting the body. Jane Ormerod, chair of Long Covid Scotland, said: 'In December 2024, the Scottish Government announced a £4.5m non-recurring fund. Yet by July 2025, not a penny has been allocated. 'What was framed as a hopeful investment now stands as a symbol of inaction and broken promises.' Helen Goss, chief operating officer and Scottish lead at Long Covid Kids, added: 'We entered 2025 with cautious optimism. Instead, six months on, we are forced to resign from a system that continues to fail the very people it was created to support.' Advertisement Hide Ad Advertisement Hide Ad The £4.5m fund was originally announced by Finance Secretary Shona Robison and was intended to deliver new specialist support for long Covid, ME [Myalgic Encephalomyelitis], chronic fatigue and other similar conditions. SNP finance secretary Shona Robison About 82 per cent of people with long Covid struggle to access care, reports commissioned by the strategic network last year claimed. A statement issued on behalf of both charities said: 'The Scottish Government remains functionally absent from the network, offering no leadership, no oversight, and no enforcement of its own policies. 'Workstreams have stalled, strategic oversight commitments [are] unmet. Internal discussions now reference 'wind down' and 'rollback', rather than delivery. Some services have now closed, despite funding and a mandate to operate until March 2026.' Advertisement Hide Ad Advertisement Hide Ad 'They warn that without urgent action, remaining sparse services will disappear entirely, worsening what they describe as 'a public health emergency being quietly ignored.' Jackie Baillie, Dr Sandesh Gulhane and Alex Cole-Hamilton, co-conveners of the Scottish Parliament's long Covid cross-party group, said in a joint statement: 'It is a damning indictment of the SNP's lack of leadership that Long Covid Scotland and Long Covid Kids have had to resign from the Strategic Long Covid Network because of the Scottish Government's failures. 'Those who have shared their painful and personal experiences of long Covid in good faith have been shamefully ignored and sidelined, leaving people feeling unseen and unheard. The Scottish Government has lost the confidence of the long Covid and ME community. Advertisement Hide Ad Advertisement Hide Ad "The Scottish Government must urgently distribute the £4.5m to health boards and provide clear direction and vision so that new specialist staff are recruited fast and new services are up and running.'
Scotsman
04-08-2025
- Health
- Scotsman
Charities quit SNP Government's Long Covid network over 'broken promises' as £4.5m fund not spent
Sign up to our daily newsletter – Regular news stories and round-ups from around Scotland direct to your inbox Sign up Thank you for signing up! Did you know with a Digital Subscription to The Scotsman, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... Two charities have quit a strategic network set up by the Scottish Government to tackle long Covid, citing frustration at delays to using funding in what has been described as a 'damning' decision. Long Covid Scotland and Long Covid Kids have penned a formal resignation letter citing the reasons for leaving the National Strategic Network for Long-Term Effects of Covid-19. Advertisement Hide Ad Advertisement Hide Ad Two long Covid charities have quit a key Scottish Government network. Picture: Michael Gillen The Government body had been set up with the aim of improving the health and wellbeing of those living with long-term Covid effects. But the bosses of the respective charities have accused SNP ministers of 'inaction and broken promises', with the Government accused of failing to spend £4.5 million in funding allocated in the Scottish Budget in December last year. Opposition parties said those who had shared 'painful' experiences of suffering from long Covid had been 'shamefully ignored and sidelined' by the Government. Advertisement Hide Ad Advertisement Hide Ad The charities, which were founding contributors to the long Covid network set up in 2022, listed systemic failure, lack of leadership and a breakdown in trust as reasons for quitting the body. Jane Ormerod, chair of Long Covid Scotland, said: 'In December 2024, the Scottish Government announced a £4.5m non-recurring fund. Yet by July 2025, not a penny has been allocated. 'What was framed as a hopeful investment now stands as a symbol of inaction and broken promises.' Helen Goss, chief operating officer and Scottish lead at Long Covid Kids, added: 'We entered 2025 with cautious optimism. Instead, six months on, we are forced to resign from a system that continues to fail the very people it was created to support.' Advertisement Hide Ad Advertisement Hide Ad The £4.5m fund was originally announced by Finance Secretary Shona Robison and was intended to deliver new specialist support for long Covid, ME [Myalgic Encephalomyelitis], chronic fatigue and other similar conditions. SNP finance secretary Shona Robison About 82 per cent of people with long Covid struggle to access care, reports commissioned by the strategic network last year claimed. A statement issued on behalf of both charities said: 'The Scottish Government remains functionally absent from the network, offering no leadership, no oversight, and no enforcement of its own policies. 'Workstreams have stalled, strategic oversight commitments [are] unmet. Internal discussions now reference 'wind down' and 'rollback', rather than delivery. Some services have now closed, despite funding and a mandate to operate until March 2026.' Advertisement Hide Ad Advertisement Hide Ad 'They warn that without urgent action, remaining sparse services will disappear entirely, worsening what they describe as 'a public health emergency being quietly ignored.' Jackie Baillie, Dr Sandesh Gulhane and Alex Cole-Hamilton, co-conveners of the Scottish Parliament's long Covid cross-party group, said in a joint statement: 'It is a damning indictment of the SNP's lack of leadership that Long Covid Scotland and Long Covid Kids have had to resign from the Strategic Long Covid Network because of the Scottish Government's failures. 'Those who have shared their painful and personal experiences of long Covid in good faith have been shamefully ignored and sidelined, leaving people feeling unseen and unheard. The Scottish Government has lost the confidence of the long Covid and ME community. Advertisement Hide Ad Advertisement Hide Ad "The Scottish Government must urgently distribute the £4.5m to health boards and provide clear direction and vision so that new specialist staff are recruited fast and new services are up and running.'
