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.”

‘I went to bed wondering if I’d wake up’

'I've lost part of my identity' - Cass was forced to stop working in 2023 — ‘I’ve lost part of my identity’ – Cass was forced to stop working in 2023 STV News

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.”

Long Covid campaigners outside parliament STV News

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.

Cass suffers from a variety of physical and neurological symptoms due to long Covid STV News

“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.

‘The system continues to fail’

Helen Goss (left) with her daughter Anna, who has long Covid STV News

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.”