Gran 'in extreme pain' wasn't diagnosed with heart failure for over two years

A grandmother who couldn’t walk more than six steps without being in pain has described how she had to wait for more than two years to get a diagnosis of heart failure.

It comes as a new report has revealed women have to wait almost six times longer than men to get a diagnosis – which is crucial in preventing complications and early death from heart failure.

Annette, from East Devon, was 53 years old when she was diagnosed. She waited two years and eight months from the first time she went to the GP to complain she was short of breath to being told she had heart failure.

Before this she had to endure multiple misdiagnoses while still experiencing symptoms which led to problems at work, and affected her ability to feel independent – finding herself having to sleep downstairs because she was too tired to climb the stairs.

She said: ‘I thought my symptoms were around me being unfit and my age. I was advised by my GP to lose weight because I’d put on a stone in weight for no reason. It was never even considered that it might be heart failure.

‘My heart failure symptoms went on for two and a half years. It was extremely frustrating with lots of excuses or reasons why I was feeling that way – from just fatigue to whether I had asthma. A variety of different ideas from the GP and none of them ever pointed towards heart failure.

‘My symptoms at that time were not being able to walk more than five or six steps without being in pain, being breathless and severe insomnia. I was only sleeping about two hours a night because I couldn’t lie flat. Also, extreme fatigue – if I wasn’t at work, I was asleep.’

She said she had ‘two and a half years of severe worry’ after being told she had asthma even after 18 months, and her symptoms became increasingly worse.

‘The delay in the diagnosis caused me to be unreliable at work, which I hadn’t been previously, and also to lose my independence,’ added Annette, ‘Whereas previously I was cycling 10 miles a day, now I was having to rely on other people to pick me up for work. For my family, it was extremely frustrating – I had grandchildren I couldn’t pick up.

‘I had to start sleeping downstairs; I couldn’t get upstairs because I was so tired, having to rely on other people and eventually having to give up work.’

The study, called ‘Heart failure: The hidden costs of late diagnosis’, by Roche Diagnostics and heart failure charity the Pumping Marvellous Foundation, analyses patient survey findings from Censuswide and 2018/19 Hospital Episode Statistics.

The report highlights a number of the ‘hidden victims’ of heart failure, including female patients who are 96% more likely to be misdiagnosed than men.

While 45% of women surveyed said they were initially misdiagnosed, just 23% of male patients said the same.

The most common misdiagnoses among women were asthma (30.4%), anxiety or depression (22.4%) and acid reflux (13.6%).

It also shows that while men said they waited on average 3.6 weeks for their diagnosis from their initial GP visit, women waited on average just over 20 weeks – a near-six-fold increase.

Sarah, from Hull, was 42 years old at the time of her diagnosis. She visited her GP surgery multiple times across 10 months before receiving a final diagnosis of heart failure.

During those 10 months, she received red-herring diagnoses like rheumatological concerns, despite having a family history of cardiac problems and Type 1 diabetes.

She was even told her symptoms – which included swollen ankles and fatigue – were unlikely to be related to her heart because she was ‘young and female’.

‘I think in the back of my mind I was concerned that it was to do with my heart. But I kept going to the GPs and they kept sort of saying, “We think it’s post viral fatigue,” or “We think it’s stress”,’ Sarah added.

‘The amount of time it took me to get diagnosed is something I was very angry about for a long time because I had it in my head that if I’d have been diagnosed sooner, it wouldn’t have had such a big impact on my life.

‘It made a massive impact on my life and obviously that’s affected my family. I’ve got two teenage daughters. I’ve got a husband. I’ve got a mum. I’ve got friends that worry about me. And it’s impacted on every aspect of my daily life.’

More than one in 10 women spent more than six months waiting for their heart failure diagnosis.

Women are also more likely to hold off making an appointment with their GP after first developing symptoms, with 13% of those surveyed waiting longer than four months compared with 6% of men.

About heart failure

Heart failure means that the heart is unable to pump blood around the body properly, according to the NHS website. It usually occurs because the heart has become too weak or stiff.

Heart failure does not mean your heart has stopped working. It just needs some support to help it work better. It can occur at any age, but is most common in older people.

Heart failure is a long-term condition that tends to get gradually worse over time. It cannot usually be cured, but the symptoms can often be controlled for many years.

Symptoms of heart failure:

  • Breathlessness after activity or at rest
  • Feeling tired most of the time and finding exercise exhausting
  • Swollen ankles and legs

Some people also experience other symptoms, such as a persistent cough, a fast heart rate and dizziness. Symptoms can develop quickly (acute heart failure) or gradually over weeks or months (chronic heart failure).

Experts say the stark inequalities could be down to heart problems too often being seen as ‘a man’s disease’ and heart failure not being prioritised in the same manner as other disease areas, like cancer.

Professor Martin Cowie, professor of cardiology at Imperial College London and consultant cardiologist at the Royal Brompton and Harefield NHS Foundation Trust, commented: ‘This new report highlights some major issues surrounding the diagnosis of heart failure in the NHS.

‘In particular, there is a striking gender gap in the speed and accuracy of the diagnosis for women compared with men. Too often heart problems are seen as a man’s disease – and are not even considered in a woman. This needs to change.

‘Thankfully, we have simple blood tests that can help point doctors in the right direction – with good evidence that this speeds up the time from symptoms first developing to an accurate diagnosis and the start of life-saving therapy. We have these tools – and we must start using them properly right across the country.’

Heart failure accounts for approximately 2% of the total NHS budget and 5% of unplanned admissions per year. In 2018/19, it accounted for 862,470 bed days – the equivalent of 2,362 years.

The average admission cost £3,690.17, totalling nearly £400 million while in contrast, an average GP visit costs the NHS only £37.40.

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