A Scots woman who was forced to give up her job and use a mobility scooter due to a chronic lung condition has called for lung health to be taken more seriously after it took doctors six years to diagnose her. Vivienne Gaynor repeatedly complained about her declining health, but her shortness of breath and recurring chest infections were put down to asthma.
The 60-year-old, from Edinburgh, was eventually diagnosed with deadly lung disease chronic obstructive pulmonary disease (COPD) after years of repeated trips to her GP. She was informed of the diagnosis in 2013 over the phone and had to google what the condition was.
Vivienne is now backing calls from campaigners for better respiratory care in Scotland after a new report revealed one in five people wait more than four years to be diagnosed with COPD, whilst one in eight waited more than a decade.
She said: "I didn't have many health issues up until the time I was diagnosed with asthma at 45. My daughter has childhood asthma and my gran had asthma all her life so they thought it was hereditary condition.
"After a while my breathing started to get worse, I was wheezing and had an even worse cough. I was constantly breathless. I struggled just to get up the stairs, and was always tired.
"I kept going to the doctor and saying my inhaler wasn't working but they kept putting everything down to my asthma and told me to keep using my inhalers. They eventually sent me for a chest X-ray and I received a phone call to say I had COPD and to go to the chemist and collect an inhaler.
"It took me six years to get that diagnosis and I was relieved but I was totally unaware of what COPD was. It was scary to find out I had a degenerative condition affecting my lungs."
Vivienne immediately swapped GP surgeries and her condition is now well managed through medication. She was forced to give up her job as a mental health advocate due to the fast-paced environment while she struggled to breathe.
COPD is an umbrella term for a group of lung conditions which cause breathing difficulties, including chronic bronchitis and emphysema, and symptoms of the disease include breathlessness, a chesty cough and chest infections.
A new report from Asthma and Lung UK Scotland has revealed the average wait for COPD diagnosis in Scotland is just over four years. Almost a third of Scots surveyed said they were unable to recognise the signs of COPD and over 1 in 10 said they were misdiagnosed as their doctor thought they had a chest infection or cough.
Other key problems highlighted in the report included access to care, with more than 1 in 4 saying they couldn’t get an appointment and over 1 in 10 being unable to access diagnostic tests - including spirometry which is key a breathing test for diagnosing COPD.
People living in poorer areas of Scotland were more likely to have flare-ups than those living in wealthier areas. Those from the most deprived 20 per cent houses in Scotland were more than six times more likely to be admitted to hospital for COPD compared to someone from the least deprived 20 per cent of households.
Asthma and Lung UK Scotland is now calling for the Scottish government to roll out a public awareness campaign on key symptoms, as well calling for the urgent prioritisation of quality-assured spirometry across the healthcare system.
Vivienne said: "It still makes me angry that I was so easily dismissed, and the impact of the delayed diagnosis meant that I had to give up the job I loved as a mental health advocate, and now have to use a mobility scooter to get around.
"Lung health isn’t taken seriously enough, and nobody seems to understand what COPD is, and that it’s a very chronic condition with no cure. If I had been suffering with cancer or a heart problem, I don’t think I’d have had to wait so long for a diagnosis and would probably have received much more empathy and support.”
Joseph Carter, Head of Asthma and Lung UK Scotland, said: “Across Scotland, far too many people are waiting in limbo for a diagnosis of COPD and access to treatment and support. There also needs to be a greater awareness of the condition and the signs and symptoms to look out for. We have heard from people struggling to breathe, who, because they are left unaware of their condition, aren’t getting the right treatment and support quick enough.
“To achieve this, we are calling on the Scottish Government to ensure everyone can access spirometry in their local area. Far too many surgeries stopped providing the vital diagnostic test during COVID and we need to get it back. We welcome the Scottish Government’s commitment to the Respiratory Care Action Plan, but it is vital that health boards locally are able to fund spirometry testing and other basic services people with COPD need.
“We need better, more joined-up care for people diagnosed with COPD, and improved access to vital treatments and support. Anyone experiencing breathlessness should go to Asthma + Lung UK’s website for information and support, and if necessary, seek medical advice. No one should be left fighting for breath.”
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