After the fourth visit to her GP in just a matter of months – and this time prescribed antibiotics for a suspected chest infection – Julia Ferris hoped she would start to feel better. But her symptoms continued to get worse.
‘I was constantly tired, felt dizzy and there were occasions where I needed to stop and catch my breath when walking,’ says Julia, 57, a retired nurse practitioner in mental health.
She didn’t think much of it at first because it ‘didn’t stop me working’. ‘But 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,’ recalls Julia, who lives in Peterborough, Cambridgeshire, with her husband, Keith, 58, a welder fabricator.
‘I wasn’t overweight or unfit but thought perhaps my age meant I was slowing down and getting lazy as a result. Maybe I needed vitamins, or to go to the gym. But the symptoms meant I didn’t have the energy even to do that.’
Initially, she and Keith thought she might have a virus – the first GP she saw concurred, and told her to rest.
But within three weeks or so – and still feeling drained – she went back to her GP, twice. Diagnosed with post-viral syndrome and told to simply ‘give it time’, she still didn’t feel right. A nurse even suggested she was depressed.
Julia knew that wasn’t the case, so went back a week later and saw another nurse – who this time gave her the antibiotics.
But once again, this didn’t help – and Julia’s symptoms got worse. She was now having to take days off work because she felt so tired and the breathlessness became more regular.
‘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
‘I loved walking our springer spaniel, Buster, but I was starting to struggle to do that,’ says Julia, who has two sons, aged 27 and 23.
In April 2019, she went back to her GP practice – for a sixth visit over ten weeks.
This time she happened to see a different GP, who examined her chest using a stethoscope.
She detected a ‘heart murmur’ – this is characterised by a blowing or swishing sound between the usual heartbeats because of blood flowing abnormally through the heart valves – and she referred Julia for an echocardiogram, an ultrasound that checks the heart’s structure and function.
Before this scan, she was told the results would take two weeks.
‘But immediately afterwards they said I needed to see my doctor the next day – so I knew something was seriously wrong,’ she says. ‘I still thought I’d just been pushing myself too hard, though.’
Yet it still took another four months before Julia received a diagnosis: severe symptomatic aortic stenosis – a type of heart valve disease affecting the main valve in the heart that can be life-threatening if left untreated. Half of those living with it die within two years, according to recent figures.
Even after her diagnosis, it was another two months before she had life-saving, open-heart surgery in the November to have the faulty valve replaced.
And, even then, terrified that her symptoms were deteriorating rapidly (by this stage she couldn’t even brush her teeth without becoming exhausted), she faced paying £35,000 to have the surgery done privately.
In a condition where prompt diagnosis is essential, Julia’s continued misdiagnosis and treatment delays could have been disastrous. But, worryingly, her story is far from unusual. And, most shockingly, the main reason for this is that she is a woman.
Heart valve disease affects 1.5 million people in the UK – it occurs when one or more of the four heart valves don’t work correctly; the valve fails to open or close as it should, affecting blood flow through the heart.
The most commonly affected is the aortic valve, because it controls blood flow from the left ventricle, the heart’s main pumping chamber, into the aorta and ensures that oxygen-rich blood moves out to the body.
The causes range from congenital defects, damage to the valves (after a heart attack, for instance), ageing (wear and tear of the valve tissues) – or risk factors such as diabetes or high cholesterol which accelerate the hardening or calcification of the valves.
But only 28 per cent of the women estimated to develop severe aortic stenosis will receive treatment, compared to 51 per cent of men, according to a new report by the charity Heart Valve Voice and others.
They also found that only 36 per cent of all operations to repair or replace the damaged valve were carried out on women in 2024/2025, despite the fact that women are the majority of those over 65 who are affected.
Quite simply, women with severe aortic stenosis are less likely to be diagnosed compared with men, more likely to be untreated, more likely to deteriorate through lack of diagnosis – and ultimately more likely to die from a condition that is both detectable and treatable.
‘The reasons for this are multiple,’ says Dr Clare Appleby, a consultant cardiologist at Liverpool Heart and Chest Hospital who contributed to the new report. ‘Firstly, there is still the belief amongst some healthcare professionals that heart disease is a men’s health issue. In fact, annually, cardiovascular disease kills more women over 65 than any other condition.’
Indeed, heart disease kills more than twice as many women as breast cancer. This is an issue not just with heart valve disease but also heart attacks, as Good Health has previously reported.
For instance, research suggests that women having a heart attack are 50 per cent more likely to receive a wrong initial diagnosis.
This has been blamed on the traditional image of a heart attack patient as an overweight middle-aged man. Meanwhile, women’s symptoms may be dismissed as a ‘funny turn’ or indigestion, for instance. Similarly, when a woman develops the classic symptoms of heart valve disease, such as breathlessness, feeling dizzy, tiredness or a feeling of slowing down, these may be wrongly attributed to other conditions such as asthma, or just a sign of getting older, says Dr Appleby.
‘Unfortunately, many healthcare professionals don’t have heart disease in mind when seeing women. Men, by contrast, are treated and diagnosed more quickly. We need to tackle this gender inequality with better education for healthcare professionals, patients and their families.’
Clinical trials in heart health are often male-dominated, too, she adds: ‘This creates critical gaps in how women are diagnosed and treated – guidelines are based on male patients.’
Indeed, the criteria used to diagnose the condition on an echocardiogram, for instance, are based on the difference in blood pressure across the valve modelled on male anatomy.
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
In addition, the primary indicator of heart valve disease – usually identified on a scan – is calcium build-up on the valve. This is lower in women who have less build-up because of their smaller physiques, so it can be missed.
Then there is the very fundamental problem that fewer doctors are using stethoscopes to examine patients. As Julia found out, a simple stethoscope examination can pick up the telltale signs such as a murmur. But the use of a stethoscope isn’t as common as it used to be in primary or secondary care; it’s something of a lost art, explains Dr Appleby.
‘But it’s a simple way of spotting a problem using something that’s cheap and widely available,’ she says. ‘As a result, any woman who presents with fatigue or breathlessness should have her heart listened to as a matter of course.’
Delays aren’t just caused by medical professionals. As Wil Woan, chief executive of Heart Valve Voice, says: ‘There is an element of women not recognising the symptoms themselves, perhaps attributing them to getting older.
‘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. Recent figures show more than 400 people on NHS waiting lists die each year before they get life-saving surgery or treatment.’
The charity is now highlighting the gender inequality but also the importance of prompt diagnosis and treatment such as open-heart valve surgery or, more commonly, transcatheter aortic valve implantation (TAVI). This minimally invasive treatment replaces the narrowed aortic valve using smaller incisions in the thigh, and then threading a tiny tube via the blood vessels to the heart to replace the valve, reducing trauma and recovery time.
‘It’s quite simple,’ says Wil Woan. ‘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. That saves the NHS money and, most importantly, saves lives.’
The story of Kirstie Campbell’s mum, Sue, epitomises the tragedy of the lives lost needlessly through delayed diagnosis and treatment.
Kirstie, 49, says: ‘Mum requalified as a nurse in 2018 after leaving the NHS in 1972 to have children. She was 68 and had to do a three-month refresher course, but she was fit and healthy and determined to do it.
‘Unfortunately, shortly after gaining her nursing pin back, her health started to deteriorate – she started to feel breathless and tired. She was eventually diagnosed with asthma, which she’d never suffered from in her life.’
It took a call to 111 and going into A&E before Sue was finally seen by a cardiologist – three years after the symptoms first appeared.
‘It was only then that she was diagnosed with severe aortic stenosis and at that point she was critically ill and had quit her job,’ says Kirstie, a dressage rider and coach from Hampshire.
‘Yet even then there was no date for her operation.’
By now, she found even the simplest tasks, such as carrying a laundry basket or even just getting dressed, increasingly difficult.
Kirstie adds: ‘Mum was admitted to hospital one more time – yet another opportunity missed for her to have had a lifesaving operation.
‘On this occasion, she had critically low iron levels which we believe, based on the coroner’s report, was due to something called Heyde syndrome. This is frequently linked to late-stage aortic stenosis.
‘Yet a doctor had told her it was probably her diet and she needed to eat better – there was no mention of her damaged heart valve.’
After being discharged and told to await her surgery appointment, Sue died in September 2021, just one month after finally being correctly diagnosed.
‘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,’ says Kirstie, who has one son, Marcus, 14.
Knowing the importance of an early diagnosis – and how hers wasn’t – Julia is very aware of how lucky she is.
‘My symptoms rapidly worsened in the weeks after seeing the cardiologist,’ she recalls. ‘If I walked up the stairs at home, I’d have to stop halfway to rest.’ But, while she was told she’d have to stop working until the operation, there was no indication of when that would be.
She says: ‘Of course Keith kept any worry to himself to protect me but we were a salary down as a family. Thank goodness I work for the NHS and was eligible for six months’ pay and six months’ half-pay. That helped ease the stress but I know others wouldn’t be as fortunate.’
However, the delay turned into months. And when she had another cardiologist appointment in October 2019 and was told the operation would be ‘at some point in the next three months’, she didn’t know if she could wait.
‘Just brushing my teeth was by then tiring,’ says Julia. ‘I was sleeping up to 16 hours a day, couldn’t drive or go anywhere without someone with me. I even found it difficult to talk without feeling breathless.’
At one point it was so bad she was taken by ambulance to A&E. ‘It wasn’t much of a life, to be honest,’ she adds.
Fearful of not getting the surgery in time, Julia looked into going private. ‘The operation costs around £35,000 – a vast amount of money – but I was desperate and was privileged to have relatives who could have helped me.’
But then, a few weeks later, ‘I received a phone call to say the operation would be the next day – it was such a relief’, she says.
The operation to replace the aortic valve took five hours.
She had learned she had been born with a bicuspid valve, meaning the aortic valve has just two flaps instead of the typical three.
Over time, this makes the heart work harder and, while some people may never know they’ve been born with it, in other cases it can lead to complications later in life.
‘I chose an artificial replacement valve [made from carbon or titanium],’ she says. This won’t need replacing, unlike a pig’s valve, which lasts around 25 years.
She now has a scar ‘from the base of my neck down to the middle of my stomach’, but was up and walking three days later and back home after a week.
She felt the improvement in her breathing within days.
‘Pushing yourself with exercise is a bit nerve-racking to start with but it’s also exhilarating; from being breathless from just speaking to being able to do star jumps is a miracle,’ she says.
Indeed, within four months of the surgery, Julia felt back to normal, so much so that a month later she went back to nursing.
‘I now take warfarin, the beta-blocker bisoprolol and ramipril, to also help with high blood pressure, and I visit my cardiologist once a year,’ says Julia, who retired two years ago.
‘I still work part-time as a pastoral assistant at a secondary school, but also love cycling, gardening and travelling.
‘Simple pleasures like walking the dog take on a whole new meaning when you first struggled to do it, and were genuinely unsure whether it was something you’d ever be able to do again.’
Julia is now supporting Heart Valve Voice to push for prompt diagnosis and faster access to treatment for women.
She’s also keen for women to recognise the symptoms themselves – and to push doctors to do a simple stethoscope exam.
She says: ‘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. Not everyone is as fortunate.’
heartvalvevoice.com
