My nephew's life was put on hold by Long Covid

The Herald Scotland

a day ago

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 @becmcq.bsky.social and on X at @BecMcQ