Covid in Scotland: No clinics for thousands of 'long Covid' patients
- Published
Long Covid symptoms include fatigue, headaches, brain fog and breathlessness
Thousands of Scots could be living with so-called "long Covid" with no early prospect of specialist treatment.
A BBC investigation found no health boards in Scotland are offering dedicated long Covid clinics.
Existing services such as physiotherapy are being used instead and only two health boards are working on long-term strategies.
The Scottish government has said it is funding more research and guidance before finalising a treatment plan.
Early estimates suggest as many as 6,000 people in Scotland were experiencing long term symptoms after the first wave of the pandemic - though experts are wary of the lack of data available.
While they say it is too early to accurately track the condition, they acknowledge it is a significant problem.
Meanwhile Chest Heart and Stroke Scotland warned estimates could be the "tip of the iceberg".
South of the border NHS England has announced £10m of funding to set up specialist long Covid clinics in every area .
In Scotland, doctors and other health professionals, external are working to draw up new treatment guidelines by the end of the year.
In her daily media briefing on Wednesday, the first minister highlighted that Scotland had instead spent £5m on "rapid research projects".
"We need to do the work to understand long Covid better before we can set up specialist clinics," she said.
"I think long Covid is one of the most important implications of this virus that we have to deal with now and we'll potentially be dealing with for some time to come."
On differences in approaches to Covid between Scotland and England, Nicola Sturgeon added "that might mean we're doing it in a better and more methodical way".
What is long Covid?
Health professionals from the Scottish Intercollegiate Guidelines Network (SIGN), the National Institute for Health and Care Excellence (NICE) and the Royal College of General Practitioners (RCGP) have now defined the term Post-Covid Syndrome.
They described it as "signs and symptoms that develop during or following an infection consistent with Covid-19 which continue for more than 12 weeks and are not explained by an alternative diagnosis".
The condition has been likened to post-viral fatigue or chronic fatigue syndrome (CFS/ME) - but the reality for individuals is very varied.
GP Amy Small experienced a wide range of symptoms for seven months - including breathlessness, fever, headaches and brain fog as well as fatigue.
Despite being tested on day three of her symptoms, Amy received what she believes was a "false negative" result.
GP Amy Small experienced a wide range of symptoms for seven months
In September she was forced to give up working at her practice in order to take on reduced hours as a locum GP.
She said: "Seeing the second wave develop is a bit like watching a car crash in slow motion - when you hear people say they've not been well for three weeks and you think 'gosh, I remember being there'.
"I'm not the first GP to lose my job over this and I'm not going to be the last.
"We've seen in England they've had £10m put into the development of long Covid clinics which we haven't yet seen here in Scotland.
"GPs are getting frustrated because they're seeing people with lots of different symptoms - breathlessness, headaches, dizziness. People need to have a one-stop shop."
What is being done?
At present only two of Scotland's health boards are working on long-term strategies for Post Covid Syndrome - both are among the worst-hit areas for positive cases.
NHS Greater Glasgow and Clyde is carrying out research studies on patients with lasting symptoms at the Glasgow Clinical Research Facility to establish the main issues that affect them.
NHS Lanarkshire's occupational therapy service is trialling a new model of primary care where staff help patients to manage their symptoms at an earlier stage.
Two other health boards have acknowledged the need for further long Covid support - NHS Fife told the BBC it was "working through" recommendations from a report from Dr Nadine Cossette to the Scottish government in October which looked at mental health needs of patients.
Among several recommendations, Dr Cossette called for the "strengthening", external of multidisciplinary Covid rehab teams with "a single point of access".
NHS Tayside launched a rehab phone service in July for adults with ongoing symptoms.
However, the remaining 10 health boards are relying on existing pathways through the health service - namely community rehab, GP support and web advice.
The Scottish Intercollegiate Guidelines Network is currently working with other bodies on UK-wide guidance on how to triage Post Covid Syndrome.
It has been promised by the end of the year.
The scale of the problem
The reason governments cannot simply harvest the number of people with long Covid from GPs or hospitals is there is no medical code for the condition - as there would be for other illnesses.
Last month King's College London published information which was collected through an app. Researchers had identified risk factors for long Covid including excess weight, old age, being female and having many different symptoms at the outset.
The data suggested that 60,000 people in the UK would go on to experience Covid symptoms for three months or more - a crude calculation based on population means this figure in Scotland is up to 6,000.
Microbiologist Prof Tom Evans, part of the team in Scotland working on the forthcoming guidelines, said this calculation was not yet reliable.
He said: "The data is not that great. Those who are still suffering symptoms after three months is roughly about 2% of respondents - but that is only an estimate and we're very keen to explore those who are probably under-represented in those surveys, particularly older people, those from different ethnic groups and also from deprived communities."
What can be done?
Calls for dedicated long Covid clinics have intensified since campaigners raised the issue earlier in the pandemic.
In September, 39 doctors across the UK published a letter in the British Medical Journal detailing the need for one-stop clinics to support Covid rehabilitation. They also called for further surveillance of long-lasting symptoms.
This was reiterated by Chest Heart and Stroke Scotland earlier this month - the charity called for a national support service and was supported by a number of health professional bodies.
Chief executive Jane-Claire Judson told the BBC: "The estimates we are seeing could be the tip of the iceberg. Many Long Covid sufferers contracted the virus at the start of the pandemic when testing was just being established and not as widely used as it is now.
"We can't let people become forgotten victims of the pandemic."
Scotland's national clinical director Jason Leitch said: "This is a brand new disease. We need three things - we need research to understand it, we need guidance for the clinical teams who will treat it and at the high end we'll probably need specialist clinics for some people.
"But who do you want to staff that? Nobody knows, because we don't know what the disease is yet. Just now it's being treated by generalists."
You can watch more about the subject of long Covid on Reporting Scotland on Wednesday and Thursday at 18:30.
