A woman from Swansea struggled to breathe for years before being diagnosed with COPD. Pauline Williams, 70, was diagnosed with COPD in 2014. It took a long time for her to get a diagnosis and she is telling her story ahead of world COPD day on November 16 to try and raise awareness.
Delays of this length can result in people with COPD, an incurable condition which causes severe breathlessness and affects around 76,000 people in the Wales, losing lung function. This leads to extreme breathlessness and difficulties performing everyday tasks like walking to the shops, housework, and socialising. Late diagnosis means people are living with a poorer quality of life and are much more likely to have life-threatening flare-ups of the disease.
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“I struggled to breathe for nearly eight years before being diagnosed with COPD," said Ms Williams. "It was a physical and emotional rollercoaster. One day I was struggling to take a deep breath, it frightened me so much, I went to A&E. After hours of waiting, I was finally seen by a nurse who said it was down to a chest infection. I was given antibiotics and made to feel that I was wasting their time.
“Years went by, and I struggled climbing the stairs and got out of breath doing the simplest of tasks. In 2014, I finally had enough and insisted on further checks to rule out anything serious. I was sent for x-rays and lung health checks; they all came back fine. I was so confused; it was a physical and emotional rollercoaster. It took a locum doctor to suggest a lung function test, and this changed everything. I finally got the answers I needed. I was so relieved to have a proper diagnosis."
Pauline was able to receive treatment for her condition. She added: "I was offered pulmonary rehabilitation, which is an exercise class to help you keep fit. It helped so much; I can’t recommend this enough. I am concerned about access to this service in Wales. Everyone with COPD should be offered this but feel not everyone is aware of it and it seems like it’s a postcode lottery.
“People need to be made more aware of COPD and if they have the same symptoms I did, maybe they would be diagnosed more quickly or be better prepared to deal with it. I have a wonderful supportive family and two brilliant dogs who help keep me active. To live well with COPD, you need the right information, diagnosis and treatment and receive this all at the right time.
Asthma + Lung UK Cymru is calling for lung health to become an urgent priority after a damning report released ahead of World COPD Day which reveals that one in five people surveyed with the deadly lung disease chronic obstructive pulmonary disease (COPD), waited more than four years for a diagnosis.
Asthma + Lung UK, which has published its findings in its latest report, Delayed Diagnosis and Unequal Care: The reality for people with Chronic Obstructive Pulmonary Disease (COPD) in the UK in 2022, based on a survey of 6,500 people (373 in Wales) reveals that the average wait for COPD diagnosis is four years.
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.
Asthma + Lung UK Cymru, which funds research into lung conditions, has a helpline and support groups for people with lung conditions including COPD. They want to see the government roll out a UK-wide public awareness campaign on key symptoms, such as breathlessness, like Be Clear on Cancer.
It is also calling for the urgent prioritisation of quality-assured spirometry across the healthcare system in Wales, particularly in primary care. Spirometry was halted during the pandemic due to infection concerns around COVID-19, even though guidance showed it was safe, and is still unavailable in many areas.
Delayed Diagnosis & Unequal Care reveals that there are worrying gaps in spirometry testing with Government figures showing that many thousands of people missed out on being diagnosed with COPD during the pandemic. Worryingly, even those with a COPD diagnosis were not getting adequate support, according to the research by Asthma + Lung UK Cymru with 86% of people surveyed saying they had not received the ‘five fundamentals’ of basic COPD care recommended by the National Institute for Health and Care Excellence (NICE), reflecting a 3.8% decline in care since last year.
Every patient with COPD should get a yearly flu and a regular pneumonia vaccine, have a personalised plan to help them manage their condition, be offered optimised treatment for any other medical conditions and support to stop smoking if they need it. Certain patients should also be able to get pulmonary rehab (an exercise and breathing regime that helps with COPD).
The report also highlights significant health inequalities surrounding COPD, with poorer people more likely to have flare-ups, where they struggle to breathe, than their wealthier counterparts. Someone from the poorest 10% of households is more than two and a half times more likely to have COPD than someone from the most affluent 10% of households.
Joseph Carter head of Asthma + Lung UK Cymru, said: “We are hearing shocking stories of people spending years, even a decade of their lives, sometimes struggling to breathe, unaware that they have a lung condition which could be managed with the right treatment and support. Diagnosis of COPD needs to be faster and more accurate and there needs to be greater awareness of the seriousness of lung conditions and the signs and symptoms to look out for.
“To achieve this, we are calling on the Welsh Government to ensure the NHS is equipped to restart diagnostic tests for lung conditions, like spirometry. We would like to see Public Health Wales to fund a breathlessness awareness campaign, so the public and healthcare professionals are more aware of lung conditions. Those diagnosed with COPD need better, more joined-up care, and access to vital treatments. Anyone experiencing breathlessness should go to our website for information and support, and if necessary, seek medical advice. No one should be left fighting for breath.”
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