Covid-19 survivor hits heights to bring hope to others
One in 10 Scots catching coronavirus face many months of debilitating symptoms but patients fear our health boards are floundering
At one point Grant McIntyre was the sickest coronavirus patient in Scotland, in a coma for 50 days as he clung to life in the most specialised area of intensive care.
Now, a year after catching Covid-19, he climbed a Munro to pay tribute to the teams who saved him in an expedition giving hope to other seriously ill patients and their families. He scaled the Cairnwell Munro near his Perthshire home two weeks ago, accompanied by his friend Peter Richardson, son Cameron and step-daughter’s boyfriend, Mark Shaw.
Professor McIntyre, 50, the head of Dundee Dental Hospital, said: “When I reached the top I looked north to
Aberdeen and east to Dundee and thanked them both for saving my life.
“It was a tough climb on a bitterly cold and unforgiving day but I was determined to do it. I am back at work treating patients thanks to the enduring care of others.”
McIntyre spent 50 days in a coma and 128 days in hospital, at Ninewells in Dundee and Aberdeen Royal, after contracting coronavirus. His gruelling recovery included tortuous months of rehabilitation where he had to learn to walk again.
Scots suffering Long Covid fear a postcode lottery means effective diagnosis and treatment depends on where you live and on which side of the border.
An estimated 700,000 patients in the UK have described debilitating long-lasting symptoms after Covid, with many complaining the condition is little understood and treatment haphazard.
Scotland has not followed England in providing specialist centres for the debilitating symptoms, which can last for months after the virus – although some patients there complain finding effective treatment remains patchy – while health boards here promise to deliver treatment closer to home.
However, a survey of Scots health boards reveals a wide disparity in the treatment offered to patients as experts warn GPs struggle to know where to refer them.
Professor Kate O’Donnell, of Glasgow University’s department of Primary Care Research and Development, said: “It is difficult to get care and that is an issue. We are hearing this from GPs and it is difficult for them to know where to send patients. Finding a place to refer them is not easy.
“There is now a high awareness of Long Covid and a lot of discussion around the rehabilitation and research needed to treat patients. It is clear that many people have had damage to their organs. Many were fit and healthy before March last year.”
Professor O’Donnell and her team are launching research into Long Covid patients who were tested for the virus later this month.
Patients who tested positive and negative will complete questionnaires asking about ongoing symptoms and returning to normal life. “We are looking for the characteristics of those who tested positive,” professor O’Donnell added. “However, we will not be able to tap into those not tested.”
Very few early Long Covid sufferers not admitted to hospital had a test, says Lesley Macniven, a founder of Long Covid Scotland, and they have no documentation to prove they had Covid and are now enduring long-lasting symptoms.
The writer and diversity consultant from Edinburgh said people struggling with chronic fatigue and other debilitating symptoms have been dismissed by doctors and researchers as they pleaded for help and support.
“The lack of availability of tests in the first wave has led many to be unable to prove they had the virus and are often unable to be diagnosed and treated with Long Covid.
“Patients are often having to hunt for supportive GPs to accept their account of having had Covid. In effect, we are being penalised for lack of testing provision that was the fault of the government. Now they have to shout to be recognised.
“A year later many have still not had an assessment or had their prolonged symptoms investigated. Those who had a positive test appear to have had an easier journey though they may still not find much in the way of treatment.”
The Royal College of GPs (RCGP) has called for better recognition of Long Covid. Dr Gail Allsopp leads on Long Covid for the RCGP and said it was wrong that patients were being denied treatment because they don’t have a positive test.
“I am saddened to hear these stories. It is important patients keep talking out loud,” she said. “The frustration is not just with patients but with clinicians on the ground. I myself, as a GP, have tried to refer patients to have these patients told they are suffering with anxiety.”
The struggle to get adequate treatment for Long Covid is verified by chronic fatigue charity, the ME Association.
Ewan Dale, from the charity said: “People with Long Covid are approaching us but there is no place to send them.
“Some are being advised by GPs to exercise when evidence shows that post-viral fatigue needs rest, not exertion, to recover.
“There seems to be little guidance on how to treat patients. Many were not desperately ill with Covid but now have chronic symptoms worse than the virus.
“Some have long-term organ damage and need ongoing medical care, not an eventual referral to an occupational therapist.”
Scottish Intercollegiate Guidelines Network (Sign), the National Institute for Health and Care Excellence, the English equivalent, and the RCGP have issued joint guidelines on the treatment of Long Covid.
Sign, which is part of Healthcare Improvement Scotland, said: “Evidence from patient experience has shown that many people feel their symptoms are not taken seriously by GPs when discussing Long Covid. The national guideline published in December 2020 recommends that clinicians take time to listen and show empathy.
“The guideline recognises that many people who had acute Covid-19 were not tested, particularly earlier in the pandemic. As a result, the guideline is clear that people should not be excluded from a Long Covid assessment, or for further investigations or specialist input, based on the absence of a positive Covid-19 test.”
The Scottish government says it supports developments of clinical guidance on long-term effects of Covid but wants patients to be treated near home by GPs, physiotherapists and occupational therapists and speech therapists.
“Unlike other major chronic illnesses, like rheumatology, cardiology and dermatology, care will not be centralised in teaching hospitals or specialist clinics.
“Our approach is for people to have access to the support they need for assessment, diagnosis, care and rehabilitation in a setting close to their home,” said a spokesperson.