In March 2020, Alex Heffron contracted severe acute respiratory syndrome coronavirus 2, more commonly known as Covid or simply Coronavirus. He hoped it wouldn’t be long before he recovered, but over 20 months later, he is still largely housebound with fatigue. Like thousands of others, he is having to live with the debilitating effects of Long Covid. He spoke to others in a similar situation and found a pattern of lack of support, health rationing and battling the benefits system.
Image: Illustration – not anyone featured in the article. Tom Davies
Reading the heart-breaking stories of Long Covid shows person after person struggling with a dizzying, often disabling, array of symptoms, battling unfathomable levels of fatigue often leading to despair.
It is estimated that tens of thousands of people in Wales are suffering from Long Covid, many for more than 12 months. In the UK, it’s thought that more than 60,000 children now have Long Covid. Long Covid is mostly being ignored, despite its debilitating effects, largely due to a lack of basic understanding and provision of resources.
Personally, I haven’t been able to ignore it. I contracted Covid-19 in March 2020, and for the last 21 months have been living with Long Covid, which has kept me largely housebound for 2021. I suffer from extreme fatigue, post-exertional malaise (PEM), aching muscles and joints, occasional migraine, insomnia, newly-acquired asthma and periodic heart palpitations. For me, my symptoms come and go depending on how well I manage the condition—which has taken some learning. Despite its severity I’ve actually been fortunate compared to many.
To look into the phenomenon of Long Covid and the issues facing thousands of people suffering from it, I spoke to others who have been in a similar situation as me.
“I didn’t feel properly listened to—by the doctors or society at large,” Greg – not his real name – told me, a young man, who was very physically active before contracting Covid-19, in March 2020.
At first, the doctors tried to psychologise it and put it down to anxiety and depression, which is a common experience for those suffering from Long Covid. Chatting to him there is a palpable sense of loss, and he described it as “grief for the life I don’t have anymore.”
“There’s also the financial precarity and dependence on the welfare system is stressful.” Greg has been unable to work during 2021, due to his symptoms which include extreme fatigue, allergic reactions, insomnia, ‘brain fog’, nausea, PEM and more. He has periods of being bed-bound.
Recently, he applied for Personal Independence Payment (PIP), the replacement for Disability Living Allowance, but the decision from the Department of Work and Pensions might take months. His partner has become his de facto carer. This is an enlightening example of how our economic system disowns those who cannot work, forcing them into financial hardship. Profit is taken by business, care is offloaded to the household.
Many people with Long Covid are worrying about money as they are left with an impossible choice: try and continue working despite a complex illness that often worsens with exertion or risk losing their income. Often, it isn’t a choice—they simply can’t work.
The UK already punishes those that struggle with sickness and disability and lots of people with Long Covid are experiencing this dehumanising system for the first time. Poverty is setting in for many. Research by the TUC has shown that 52% of people with Long Covid have faced discrimination at work.
Heledd is a nurse in Wales in her 50s who contracted Covid-19 in March 2020, she didn’t want to be identified so I have changed her name. NHS workers have been offered full pay until March 2022 — an important lifeline for many—but indication is that they will drop down to half pay after that point. Despite years of public service, many NHS workers are going to find themselves discarded due to their chronic illness, often contracted due to a lack of adequate PPE at the beginning of the pandemic.
Heledd told me that whilst “management have been understanding as there are lots of us suffering with this, to various severities,” she was still worried.
She’s been off work for much of the last 18 months, and if full sick pay isn’t extended will be forced to retire early next year.
Despite risking their lives to save lives during the pandemic, many NHS workers are not receiving the care they require as a patient, which is the most common frustration of those with Long Covid. GPs are often over-stretched, under-resourced and lacking basic knowledge of the disease.
Patients are often being offered rehabilitation services without first being assessed to see if they are able to exercise without worsening their condition. They are often not screened for the presence of PEM, nor for other potentially life-threatening conditions. This has been criticised by health professionals with Long Covid and mimics the experience of ME/CFS sufferers, who for decades have had their symptoms misunderstood by the majority of the health system.
Heledd was forced to go for a private MRI scan which showed that her brain was inflamed on one side. She was also able to get a referral to a specialist in Cardiff who diagnosed her with Post-Orthostatic Tachycardia Syndrome (POTS).
Across Wales there are discrepancies in care. With some areas offering basic support, and others offering nothing, but nowhere is providing adequate care.
Long Covid is a multi-system disease that particularly targets the lungs, brain, nervous system and blood. For example, patients are being found with life-threatening blood clots. Back in June, Health Minister Eluned Morgan announced that support would be offered but many of us feel like we are still waiting for this promise to be delivered.
Sian Griffiths, an NHS physiotherapist, and an advocate for Long Covid Wales, says that patients require “consultant-led clinics”. But instead, care across Wales is variable, but as Sian told me, GPs are not being given the necessary resources and “it’s not fair” on them.
Sian had to pay for private care — completing a 5 hour round-trip to Stoke — to be diagnosed with POTS, like Heledd. Based on this diagnosis, the consultant was able to give the right advice although this contradicted the advice she had been given previously by her local health professionals.
Her local hospital denied her the necessary scans, to confirm the diagnosis. Worse, her cardiologist told her: “I don’t think you’ve got POTS, but then I don’t know much about the condition either.” This is not an isolated incident.
What’s happening in Wales is “health-care rationing” according to retired Cardiff University Professor of Child Health, Elspeth Webb. She feels there should be a focus on early diagnosis and treatment of Long Covid to minimise any ensuing chronic illness or disability, supported by population level studies to establish its extent, severity and course, as well as systematic investigation into treatment options. Professor Webb presciently highlighted this back in June 2020 in a letter to the British Journal of General Practice.
Across Wales sufferers are often disabled and are being left in the dark. Sian highlighted how care across Wales is “disjointed and doesn’t make sense… It’s a bit too late for many.”
Welsh Government is acting very slowly and sticking to its line that GP-led care is the best approach — despite the evidence to the contrary. This also directly contradicts a recent report published by NHS England.
Meanwhile, more and more people continue to contract Covid-19, and a significant proportion will be starting their journey of Long Covid, that may last years. And still, despite being more than 18 months into the pandemic, there is no clear plan for Long Covid patients.
This is developing into a crisis of its own. With people becoming disabled and being pushed into poverty. The NHS will be disportionately hit, due to the sheer numbers of NHS staff that have caught the virus.
The Welsh Government’s lack of substantive and effective pathways to care for Long Covid is delaying people getting the care and support they require. We deserve better.
