Long Covid sufferers reveal frustration with clinics and debilitating symptoms

But the founder of Long Covid Support NI on Facebook, Andy Yeaman says its numbers have almost tripled in the past year, from 250 to nearly 700 people.

And he believes that’s just the tip of the iceberg of sufferers who feel increasingly isolated by debilitating symptoms and a lack of understanding.

The 31-year-old says many in the online forum fear they’ll never fully recover or find out why they’re still sick.

Andy, a delivery driver has had Covid twice, in November 2020 and again last February, and has been left with breathlessness, heart palpitations and extreme fatigue.

Before becoming ill, he could play football and walk his dog every day, but since he caught the virus any exertion leaves him exhausted, to the point of fainting.

It’s affected every area of his life, including decisions like starting a family.

“I used to be able to go out with friends and to family events, but now I feel anxiety because I don’t want to be unwell in front of them. I can feel myself sliding into depression,” says Andy.

“When the long Covid clinics were announced there was so much hope that this would help us.

“I was referred last November, got seen by a doctor in July who told me I’d be doing an exercise class on Zoom, which I was too ill to do, and I haven’t heard anything from anyone since.”

He says the Facebook group is one of his main pillars of support, because the members understand the isolation caused by long Covid.

They report a wide range of symptoms and he says the increase in numbers in just a year from 250 to 681 reflects the long-term effects of the virus.

“There’s a wide range of symptoms and ages, and people who were really fit before they got Covid.

“No one is reporting any improvement, and I believe we’re just a small number of the people who are struggling.

“There is a lot of disappointment about the long Covid clinics. I think it’s a way of saying they’re doing something, but they’re not.”

According to research from UCL and King’s College one in six middle-aged people who’ve had the virus report long-term symptoms, dropping to eight per cent in younger adults. Women are more likely to develop long Covid and the risk of the condition increases with age.

TV chef Jamie Oliver revealed recently that his wife Jools has been battling post-Covid illness for two years. He said the mum-of-five found it ‘deeply scary’ and vented his frustration that no treatment for the condition had been found.

Charmed actor Alyssa Milano has spoken of her continuing battle to recover from the virus, and super-fit F1 champion Lewis Hamilton revealed last year he feared he was suffering from long Covid.

Research by King’s College London released earlier this month categorised three types of post-Covid illness.

Neurological symptoms are fatigue, headaches, and brain fog, associated with the alpha and delta variants. Respiratory symptoms are breathlessness and chest pains associated with ‘wild-type’ Covid, the earlier strain of the virus. The third group is people with diverse symptoms like heart palpitations, muscle aches and skin and hair changes.

Midwife Florence Herbert from Lisburn says she has doubts about the categorisation as she has symptoms from all three groups nearly two years on from her first bout of the virus, which led to an eight-day stint in hospital.

The 42-year-old says her earliest symptoms were a high temperature, exhaustion, dizziness and aches, including a pain in her elbow which felt like a fracture.

That’s now spread to her right hand, elbow and shoulder and her GP thought it might be reactive arthritis and referred her to rheumatology, but the wating list for a consultation is five years. Other symptoms include migraines, visual disturbance, breathlessness and palpitations, eczema, and recurring infections.

She says the brain fog has prevented her return to a job she loves, and her fatigue prevents any kind of normal life with her husband and five children.

“Brain fog is such a silly name for it, like you’ve gone into a room and forgotten what you’re there for,” says Florence.

“I can’t work out times and numbers. I had an appointment at 12.50 and I left the house at 1.30 thinking that was the right time to go.

“I’ve got into the car and pressed the radio to turn the car on and wondered why it won’t start.

“I was playing Monopoly with my daughter and I had to give her £22. I gave her £40 and couldn’t work out what the change should be.”

She’d previously asked the Chest, Heart and Stroke Association for help, the first charity to offer a lifeline to post-Covid sufferers, but was too ill to take part in its programme.

When Florence was referred to a long Covid clinic it was a 45-minute phone consultation with an occupational therapist, and she was devastated not to see a doctor who could refer her for cardiology or pulmonary assessments.

She got a speech and language referral but the team there didn’t feel they were the right department to help with her cognitive problems.

A six-week programme with the condition management team led to a weekly 30-minute chat with an OT which helped in terms of talking, and crying, about her health issues, but didn’t lead to any physical improvement.

“When we talked about sleep, I’d sleep for 14 to 16 hours and then need naps during the day. We talked about getting into a routine and going for a walk instead of napping, but this is overwhelming physical debilitating fatigue.

“The suggestion was to rest before and after physical activity like hoovering, but you do that anyway.

“After six weeks I was discharged from the condition management programme. Not to get a face-to-face appointment with a doctor was soul-destroying. It felt like a tick box exercise.

“When they talked about long Covid clinics it was such a big deal and I thought it would be like England where they can refer you for tests. Now I don’t know where I’ll go from here,” says Florence.

In a statement the Department of Health says knowledge of long Covid is still evolving and it’s a complex condition which affects more than one system in the body with unique and fluctuating symptoms.

It recognises that sufferers want prompt access to specialist advice but that has to be balanced with the needs to other patients.

“There is no specific diagnostic test for long Covid and the evidence base for interventions specifically aimed at a curative treatment for long Covid is sparse at present,” it says.

“High quality research is needed to inform future treatments and models of care. Until then, the current service is focussed on holistic assessment, exclusion of other significant conditions, identifying patients with breathlessness who may benefit from pulmonary rehabilitation and those who need onward referral to secondary or community services. This is complemented by signposting to self-management resources.

“As new evidence becomes available, we will continue to review and update long Covid services in Northern Ireland,” adds the statement.