Rebecca Boyle from Antrim lost her father in 2018 to chronic obstructive pulmonary disease (COPD), a debilitating lung disease that affects over 43,000 people in Northern Ireland1. She’s now campaigning for change as new analysis from leading lung charity Asthma + Lung UK Northern Ireland reveals that over a quarter of people surveyed with a lung condition said their symptoms were dismissed and nearly a third had to give up work.
Asthma + Lung UK Northern Ireland is calling for Stormont to restart and for lung health to become an urgent priority after their annual Life with a Lung Condition revealed that over a quarter (26%) of people surveyed said the main barrier to getting a diagnosed was that their symptoms were dismissed as a cough or chest infection.2 It also revealed that nearly a third (30%) of people surveyed said they had to give up work because they we experiencing breathlessness.3
The charity is now warning people not to dismiss frequent breathlessness as a normal part of getting older, and to see their GP if they have any symptoms of COPD, such as getting short of breath easily when doing everyday things like going for a walk or doing housework, having a cough that lasts a long time, wheezing or coughing up more phlegm (mucus) than usual. The warning comes amid growing concerns that those living with undiagnosed and untreated lung conditions are at increased risk of becoming seriously ill if cases of respiratory infections, like COVID and flu, spiral this winter.
COPD is an umbrella term for a group of incurable lung conditions, including chronic bronchitis and emphysema that make it difficult to breathe air out from the lungs4. More than 43,000 people in the Northern Ireland have the condition, and most of them are over fifty.
Rebecca Boyle, from Antrim lost her dad to COPD in 2018, she said “Watching someone you love gasping desperately for air every minute of the day was traumatic. It made you feel powerless.”
“My dad was my best friend; we did a lot together such as going to the cinema and out for dinner. He was a caretaker at a primary school and lived in Lisburn.
“He was diagnosed around ten years before he passed from COPD. Initially, we weren’t bothered by it. We had no idea what it was and because the doctor didn’t seem too concerned or didn’t send him home with lots of medication or information, we just didn’t think about it.
“It wasn’t until several years after my dad was diagnosed that he started going to have his lungs checked at his GP on a yearly basis. He was called for pulmonary rehabilitation around 8 years after he was diagnosed but by that point it was too late, and he wasn’t able for it.
“As a family, it was extremely hard to see my dad suffer. It got to the point where he found it difficult to shower and dress as it took too much energy and eventually even when sitting he found breathing difficult.
“No one ever explained to us that my dad was terminal or how the disease would progress. There needs to be a lot more awareness of COPD. We had no idea that the disease would kill my dad. We had no idea how we could help him, and it was only in his final years when I did my own research that I would tell him to take Vitamin D and turmeric or do other things that might help.
“Watching someone you love gasping desperately for air every minute of the day was traumatic. It made you feel powerless, and we didn’t understand how difficult it was for him and only realised in hindsight which leaves us with a lot of guilt.
“I hope sharing my dad’s story will help other families and raise awareness of the disease. More needs to be done to support people with lung conditions, there must be a better way.
Joseph Carter, Head of Asthma + Lung UK Northern Ireland said:
“Sadly, Rebecca isn’t alone as lung disease remains the third leading cause of death in Northern Ireland. It’s shocking that people’s symptoms are being dismissed as just a cough and many are having to give up work because they are struggling to breathe.
“Nearly half (46%) of the respondents of our survey said they are short of breath when hurrying on level ground or walking up a slight hill.5 Yet they are being left behind without any offer of Pulmonary rehab6, which can improve symptoms and quality of life.
“Our survey shows that basic care is dropping year on year and only 8% of people surveyed are receiving recommended levels of care.7 We urgently need a Lung Health Strategy to help tackle lung disease head on and improve livelihoods, especially during the cost-of-living crisis. More people with lung conditions are struggling, having to give up work and at risk of their condition worsening. We need urgent action”.
References
- https://www.asthmaandlung.org.uk/northern-ireland
- Our annual Life with a Lung condition survey was completed between January 2023 and March 2023 by 323 people in Northern Ireland including 88 people who had been diagnosed with COPD in the previous 2 years. 33/88 or 26% of people said the main barrier to getting a diagnosed was that their symptoms were dismissed as a cough or chest infection or something else.
- 94/315 or 30% of people surveyed (see above for survey details) said they had to give up work because they were experiencing breathlessness.
- What is Chronic Obstructive Pulmonary Disease (COPD)? | Asthma + Lung UK (asthmaandlung.org.uk)
- 84% of respondents in NI told us they are on steps 2-5 of the MRC breathlessness scale.
- 77% of survey respondents (see above for survey details) answered ‘NO’ to the question: Have you ever been offered the chance to do PR?
- Our survey shows that basic care for COPD is dropping year on year and only 8% of people surveyed are receiving recommended levels of care. In 2022 it was 12.1% and 2021 13.5%: COPD survey 2022 (asthmaandlung.org.uk)
The five fundamentals of COPD care are:
- Offer treatment and support to stop smoking
- Offer pneumococcal and influenza vaccinations
- Offer pulmonary rehabilitation if indicated
- Co-develop a personalised self-management plan
- Optimise treatment for comorbidities