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Women with heart valve disease face misdiagnosis and delays

Women with severe heart valve disease in the UK face systemic delays and misdiagnosis compared to men, according to a report by Heart Valve Voice.

Women with heart valve disease face misdiagnosis and delaysBradley Page for Daily Mail

Female patients with severe heart valve disease in the UK face widespread misdiagnosis and treatment delays compared to men, according to a new report by the charity Heart Valve Voice.

The study revealed that only 28 per cent of women estimated to develop severe aortic stenosis receive treatment, compared to 51 per cent of men. In the 2024/2025 financial year, women accounted for just 36 per cent of all valve repair or replacement operations, despite making up the majority of people over 65 affected by the condition.

Julia Ferris, 57, a retired mental health nurse practitioner from Peterborough, Cambridgeshire, visited her GP practice six times over ten weeks before a doctor checked her heart with a stethoscope. She lives with her husband Keith, 58, a welder fabricator, and has two sons aged 27 and 23.

"I was constantly tired, felt dizzy and there were occasions where I needed to stop and catch my breath when walking," said Ferris. Although not overweight or unfit, she initially thought her age meant she was slowing down and needed vitamins or exercise. She recalled: "By the end of the day, I was shattered. There was just enough energy to sort dinner, but then I'd collapse on the sofa and have to go to bed early."

During her initial visit, a GP agreed with her suspicion of a virus and advised rest. Returning twice over the next three weeks, she was diagnosed with post-viral syndrome and told to give it time, while a nurse suggested she was depressed. A week later, another nurse prescribed antibiotics for a suspected chest infection. The treatment failed, her symptoms worsened, and she struggled to walk her springer spaniel, Buster.

¿I was constantly tired, felt dizzy and there were occasions where I needed to stop and catch my breath when walking,¿ says Julia Ferris, 57

Stethoscope examination and diagnosis

In April 2019, on her sixth visit to the practice over ten weeks, a different GP listened to her chest using a stethoscope. The doctor detected a heart murmur, an abnormal blowing or swishing sound between heartbeats caused by blood flowing abnormally through heart valves, and referred her for an echocardiogram ultrasound scan.

Although told scan results would take two weeks, staff instructed her immediately afterwards to see her doctor the next day. "So I knew something was seriously wrong," Ferris said. "I still thought I'd just been pushing myself too hard, though."

It took another four months before Ferris received a diagnosis of severe symptomatic aortic stenosis, a life-threatening failure of the main heart valve controlling oxygen-rich blood flow from the left ventricle into the aorta. Recent figures show half of untreated patients die within two years.

Ferris waited another two months for open-heart surgery in November 2019. Her symptoms worsened rapidly: "If I walked up the stairs at home, I'd have to stop halfway to rest." Soon she could not brush her teeth without exhaustion, slept up to 16 hours a day, could not drive or speak without breathlessness, and was taken to A&E by ambulance.

Surgical recovery and NHS coverage

Ferris was forced to take leave from work. "Thank goodness I work for the NHS and was eligible for six months' pay and six months' half-pay," she said. "That helped ease the stress but I know others wouldn't be as fortunate." Facing uncertain waiting times after a cardiologist said in October 2019 that surgery would occur at some point in the next three months, her family considered paying 35,000 pounds for private treatment with help from relatives. Weeks later, hospital staff called to schedule the operation for the next day.

The five-hour operation revealed Ferris was born with a bicuspid aortic valve, having two flaps instead of three, which causes the heart to work harder over time. She chose an artificial replacement valve made of carbon or titanium, which does not require replacement, over a pig valve that lasts around 25 years.

Left with a scar from the base of her neck down to the middle of her stomach, Ferris was walking three days later and returned home after a week. "From being breathless from just speaking to being able to do star jumps is a miracle," she said. Within four months she felt back to normal, returning to nursing a month later.

Ferris retired two years ago and now works part-time as a pastoral assistant at a secondary school, enjoys cycling, gardening, and travelling, takes warfarin, bisoprolol, and ramipril, and sees her cardiologist annually. "While I experienced delays, I am still here, and that's largely thanks to the GP I saw, completely by luck, deciding to examine me with a stethoscope," she said.

Gender disparities in heart care

Heart valve disease affects 1.5 million people in the UK. It occurs when valves fail to open or close properly due to congenital defects, damage from heart attacks, ageing, or calcification accelerated by diabetes or high cholesterol.

Cardiovascular disease kills more women over 65 annually than any other condition, killing more than twice as many women as breast cancer. Women having a heart attack are also 50 per cent more likely to receive an incorrect initial diagnosis.

Dr Clare Appleby, a consultant cardiologist at Liverpool Heart and Chest Hospital who contributed to the report, explained: "Firstly, there is still the belief amongst some healthcare professionals that heart disease is a men's health issue." She added that clinical trials are male-dominated: "This creates critical gaps in how women are diagnosed and treated, guidelines are based on male patients."

Dr Appleby noted that diagnostic criteria on ultrasound scans are based on male blood pressure dynamics and that women build up less calcium on valves due to smaller physiques. She added that using a stethoscope has become a lost art: "It's a simple way of spotting a problem using something that's cheap and widely available. As a result, any woman who presents with fatigue or breathlessness should have her heart listened to as a matter of course."

Waiting list deaths and treatment options

Wil Woan, chief executive of Heart Valve Voice, said women often deprioritise their own health: "They'll encourage their partner to see the GP, but often ignore or deprioritise their own symptoms; putting the health and needs of their children or family before their own."

Woan noted that more than 400 people on NHS waiting lists die each year before receiving surgery or transcatheter aortic valve implantation (TAVI), a minimally invasive procedure threading a new valve through thigh blood vessels. "If we can cut out the months of repeat GP appointments, misdiagnoses and trips to A&E as a patient's condition worsens, we can avoid emergency procedures and lengthy hospital stays," Woan said. "That saves the NHS money and, most importantly, saves lives."

Sue, left, was only seen by a cardiologist three years after her symptoms first appeared. ¿At that point she was critically ill and had quit her job,¿ says her daughter Kirstie Campbell

Tragic consequences of delayed diagnosis

The tragedy of delayed treatment is illustrated by Sue, who requalified as a nurse in 2018 at age 68 after taking a three-month refresher course, having left the NHS in 1972 to have children. Shortly after gaining her nursing pin, she developed breathlessness and fatigue, which doctors diagnosed as asthma despite no prior history of the condition.

It took a call to 111 and an A&E visit before Sue saw a cardiologist three years after symptoms appeared. She was diagnosed with severe aortic stenosis, at which point she was critically ill and had quit her job.

Her daughter, Kirstie Campbell, 49, a dressage rider and coach from Hampshire with a 14-year-old son named Marcus, said her mother struggled with simple tasks like carrying a laundry basket or getting dressed. Sue was readmitted to hospital with critically low iron levels linked in the coroner's report to Heyde syndrome, a condition associated with late-stage aortic stenosis. A doctor told her it was due to diet and she needed to eat better, without mentioning her damaged valve.

Sue died in September 2021, one month after her correct diagnosis. Campbell said: "There were so many opportunities for her to have been diagnosed earlier and if she had been, she'd still be here and I'd still have my mum."

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