Covid-19 put PoTS on the map, but patients still deserve more

Before the coronavirus pandemic, postural tachycardia syndrome (PoTS) was a little-known illness.

Now, you might recognise it as a complication of long Covid-19.

PoTS can be a symptom, but it’s also a condition in itself. It affects blood flow and causes the heart rate to increase abnormally, which can bring on symptoms of breathlessness and feeling faint when someone sits or stands up.

Not to mention dizziness and lightheadedness, heart palpitations, weakness, fatigue, and shortness of breath.¹

Around 80% of PoTS patients are women,² and the disability it causes can be severe.

Now that testing for PoTS is in the guidance for investigating long Covid-19,³ the condition has been thrust into the spotlight. But has the pandemic really improved things for PoTS patients?

Diagnosing PoTS

By any measure, getting a PoTS diagnosis still isn’t easy.

PoTS affects 0.2% of the population,⁴ meaning that it lies in the nether zone between being too common and not common enough: awareness is low among healthcare professionals,⁵ yet it isn’t covered by specialist clinics for rare diseases.

Pre-pandemic, the NHS acknowledged that PoTS services were inadequate,⁶ while a 2019 study found that it took 24 months on average to get a diagnosis — with 15% of patients waiting over 10 years.⁷ Women had longer wait times of between 5-7 years, compared to 3-4.4 years for men.⁸

The stereotype that PoTS is simply a “neurosis in middle-class females” is pervasive

Siân Griffiths, a physiotherapist from Anglesey, Wales, caught Covid-19 in May 2020 and developed PoTS symptoms just three months later.

Her occupational therapist chalked up her shortness of breath, speeding heart rate, and brain fog to anxiety. She’s not alone: despite how severe PoTS can be, women are often misdiagnosed.

According to PoTS UK trustees, the stereotype that PoTS is simply a “neurosis in middle-class females”⁹ is pervasive in patients’ journey to diagnosis. In one study, 75% of female PoTS patients were incorrectly diagnosed with a psychiatric disorder, compared to only 25% of male patients.¹⁰

Siân was eventually diagnosed after reading about PoTS on a Facebook group and asking her GP for a referral. Going to her nearest specialist clinic was a five-hour round trip.

“It was like a breath of fresh air, somebody actually believing you,” she says.

Treating PoTS

Although the pandemic has sparked interest in PoTS, there’s still a way to go in training clinicians how to spot and treat it.¹¹

When Siân was referred back to her local cardiologist for ongoing care, he flatly refused her diagnosis.

“He said to me, ‘I don’t know anything about PoTS, but you haven’t got it,’” she says.

Training is essential partially because no medications are licensed to treat PoTS

Her local cardiologist found the combination of medicines she was recommended unusual and refused to prescribe them to her, leaving her struggling for a month before she contacted a PoTS specialist again.

Training is essential partially because no medications are licensed to treat PoTS.¹² Existing medicines for other conditions can help manage symptoms, but health professionals can feel uneasy prescribing them without the oversight of a specialist.

“We have seen unwell patients whose medication is stopped because GPs, local cardiologists and paediatricians feel they don’t have the skills to prescribe the ‘off licence’ drugs,” says Dr Lesley Kavi, Chair of PoTS UK.

Finding doctors with the necessary knowledge is another mountain to climb: The BBC has reported that PoTS patients face long waitlists, limited appointments, and clinics closing once a specialist retires.¹³

Care will only improve if the NHS mandates that every region develop a PoTS service – until then, increasing awareness risks putting more strain on scarce services

According to Dr Gall, a cardiologist who specialises in PoTS, even accessing care in long Covid-19 clinics is a postcode lottery.

“Some long Covid-19 clinics are very interested in PoTS and managing it, and others aren’t,” he says. “I’m also aware that a fair proportion of long Covid clinics will eventually stop.”

The future of PoTS care

The pandemic has raised awareness of PoTS and challenged the stereotype that it is merely a psychiatric disorder.

But care will only improve if the NHS mandates that every region develop a PoTS service – until then, increasing awareness risks putting more strain on scarce services.

And for patients diagnosed pre-pandemic, the spotlight on PoTS is a hollow victory. “I have really mixed emotions about PoTS getting more attention because of Covid-19,” says Georgia Wilks, who was diagnosed in 2015. “Part of me is glad we’re getting noticed, but part of me is really mad, because it’s like: why were we not believed before?”

Featured image is an illustration of a person clutching their chest because they are out of breath. Only their right arm, shoulder, and torso are visible in the frame

Page last updated August 2022