Latest news with #LongCovidKids
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.'
Yahoo
28-05-2025
- Health
- Yahoo
Long Covid campaigner co-authors ground-breaking international study
A LONG Covid campaigner has co-authored a new study highlighting the seriousness of the condition. Sammie McFarland, from Weymouth, said she was 'honoured' to contribute to a landmark international study which confirms the condition is debilitating, and the global response must be drastically scaled up. The Delphi study, involving more than 150 experts across medicine, research, and patient advocacy, represents a first-of-its-kind consensus on the priorities, gaps, and urgent needs surrounding Long Covid. It comes after the news that Covid services throughout England - including Dorset - are being scrapped. Mrs McFarland, has been at the forefront of campaigning to raise awareness of the condition, that she and her daughter live with, and set up the Long Covid Kids charity to support children living with the condition. She said: "As a Dorset resident and founder of Long Covid Kids, I was honoured to contribute to this newly published international consensus on Long Covid. "Bringing together perspectives from over 150 experts across 28 countries including clinicians, researchers, and people with lived experience. "This study represents a significant step forward in how we understand and respond to this complex condition. READ: Dorset Long Covid campaigner backs NHS doctors plan to sue "Long Covid affects hundreds of millions of people around the world, including many children and young people. Yet too often, it remains under-recognised and under-resourced. "Through this work, we reached consensus on nearly 190 recommendations to guide better diagnosis, treatment, research, and support." Mrs McFarland is a vocal advocate of children suffering with the debilitating condition and through her charity has sought to improve the support network for children and their families. She said that new study concluded that the impact of Covid-19 on children 'must be a research priority' from understanding the long-term health effects to supporting learning, development, and mental wellbeing. READ: Weymouth woman's fight against long Covid amid inquiry She added: "This consensus is more than a scientific document. It's a foundation for action to improve care, guide policy, and provide the clarity that so many families have been waiting for. "Here in Dorset and across the UK, children and families affected by Long Covid deserve to be seen, heard, and supported - as with any significant childhood disease.' The study identified ten critical areas requiring immediate action. This includes educating frontline providers to recognize Long COVID as a complex, multi-system condition involving neurological, immune, and organ dysfunction READ: Weymouth mother develops resource for kids with long Covid It also says that a universal definition for the condition should be created and that the condition should not just be recognised as 'tiredness' but includes serious complications such as immune dysregulation, neurological injury, and organ damage. The study also concludes that Long Covid is an invisible disability and that current diagnostics fall short due to lab limitations, with advanced diagnostics needed as it is not one disease, but a cluster of overlapping conditions. Experts also emphasized the need for long-term studies on how SARS-CoV-2 affects developing immune systems, brains, and hormonal balance as children are as much at risk to the condition. READ: Weymouth Long Covid campaigner hits out at clinic closures Clean indoor air and reducing airborne transmission of the virus through improved ventilation and air purification - particularly in schools and workplaces - is also essential for public health infrastructure, it concludes. Finally experts came to the consensus that Long Covid requires coordinated international funding and that it is not just a medical issue but a socioeconomic one and warns that continued inaction is a policy failure with long-term consequences.
BBC News
26-03-2025
- Health
- BBC News
Tamworth woman, 18, says she was told her long Covid was anxiety
An 18-year-old who has been suffering from long Covid for five years says she turned to a private clinic for treatment after feeling "brushed off" by the Galloway, from Tamworth, has experienced heart issues, dizziness and fatigue since catching Covid-19 when she was 12."My life just completely changed," she said. "I was always running around, active and now some days I can't get out of bed or get dressed."The NHS said staff were working hard to help patients with the "new and complex condition", and specialist clinics had supported over 100,000 since 2020. Walking through Birmingham's Cannon Hill Park, Tilly looks like any other her exhaustion and breathlessness mean she can only manage short distances about once a week. Sometimes, if she wants fresh air, she uses a wheelchair."I really don't like it. I feel really self-conscious," she said."Whenever I do go out in it, I always get stares, as if people are wondering why I'm using one." She is one of more than two million people in the UK with long Covid, which can also cause joint pain and brain first, Tilly turned to the NHS for help, where she was told chest pains and breathlessness were caused by asthma and given an inhaler. Although this reduced her shortness of breath, tests later showed she was not asthmatic and diagnosed long often felt her symptoms were not taken seriously. "They just sort of brushed it off," she said."They all just blamed it on anxiety and mental health and said I needed counselling."It just constantly feels like you're fighting a losing battle." Often too ill to go to school, she ended up having to leave in year 10, with her mum changing jobs to work from home and care for an echo scan, she was eventually diagnosed with postural tachycardia syndrome (PoTS), a condition long Covid sufferers are more likely to be affected by, where the heart rate increases very quickly after getting NHS also diagnosed gastroapresis, where food passes through the stomach more slowly than it should. She was sent to an NHS long Covid clinic but said she did not receive much support beyond a physiotherapist and occupational therapist, who were only able to offer advice on adapting to her a lot of different tests, her paediatrician said her condition was "too complex", leaving her with no answers, she said. This prompted Tilly's mum, Nicola Booton, to join a Long Covid Kids website, which led her to Dr Ben Sinclair, a GP based in set up his own private long Covid clinic after recovering from the illness himself and is working with the University of Exeter on research into the condition. Dr Sinclair described her condition as complex, due to "significant risk factors"."Her case demonstrates that long Covid is not driven by a single factor," he hopes what he has learnt from patients like Tilly will assist in producing more guidelines for young people and children dealing with long Covid."What we're finding is that some people produce way too many antibodies and some people produce very little at all," he says. "And those two groups get this fatigue syndrome because their immune system is either overactive or exhausted. "There are some medications that can help, but the research is lagging behind." Since visiting Dr Sinclair, Tilly has been on a treatment plan where she has to take medication every day."It isn't cheap," said Ms Booton, who estimated she had spent about £20,000 on private treatment. "Financially there's been a big strain on us as a family."But, she feels it has been worth the cost to see Tilly getting stronger and making some steps towards recovery. Meanwhile, Tilly is being home-schooled and working towards her maths GCSE, when she feels up to hopes to contribute more in the future by becoming a children's paediatric nurse. An NHS spokesman advised anyone concerned about ongoing symptoms after Covid to talk to their GP."Since 2020, our specialist post-Covid clinics have supported over 100,000 people with the long-term physical, cognitive and psychological effects of coronavirus," the spokesperson added the NHS had been "world leading" in "designing and implementing new pathways of care" to support affected patients.
