“I struggle most mornings to get up and about, though not in silence. My hacking cough would wake the dead. I try desperately to hide how hard it is for me to breathe. I am so glad I can still get to work even though my movement is limited. It requires a massive effort for me to get around the office. People think I’m lazy. They can be very unkind. They really have no idea.”

People living with chronic obstructive pulmonary disease, or COPD, can relate to this experience as told by Ellen*, a woman in her 50s, not long after her diagnosis, at a recent local support group meeting of COPD Support Ireland.

She had disclosed her illness to colleagues, but felt that it had only added to the stigma of having the disease. As a former smoker, she is blamed for her illness by her doctor, her family and, now, by her colleagues. Indeed, perhaps unsurprisingly, she now quite unfairly blames herself. But is this stigma really justified?

Ellen started smoking in the late 1970s and was never a heavy smoker. People smoked everywhere. We were not as enlightened back then about the damage caused by smoking as we are now. Her parents smoked, her siblings smoked and when she socialised in pubs, restaurants and, even in the cinema, people around her smoked.

She finally managed to quit in her 40s and thought she had given up before the damage was done. Unfortunately, for Ellen, this was not to be. COPD is an insidious disease that can creep up on the best of us. The breathlessness and persistent coughs were dismissed by Ellen at first as just an ex-smoker’s cough and getting that little bit older. But, after five chest infections in three years, a diagnosis of COPD was ultimately made.

The facts

The term COPD is used to describe chronic bronchitis, emphysema or a combination of both conditions. It’s estimated that there are up to 380,000 people in Ireland living with COPD, however, many remain undiagnosed.

In Ireland, COPD is the fourth most common cause of death after heart disease, lung cancer and stroke, with one person dying on average every six hours.

To say that Ireland is not managing this illness well is an understatement. Mortality rates for COPD are higher in Ireland than our nearest neighbours in the UK. We have the highest rates of hospitalisation for COPD in 31 countries of the Organisation for Economic Co-operation and Development (OECD).

We know that COPD can affect people from the age of 35 but is often not diagnosed until later in life. Early detection is critical so that management of the disease can happen much sooner and minimise damage to the lungs. Yet, resources for COPD pale in significance to other illnesses. For example, where are the screening programmes or centres of excellence or the rehabilitation programmes that we see with other diseases?

Access to treatment

People with COPD feel they have been left behind when it comes to access to the best possible treatment, care and support. Is it because they are generally older and deemed, quite wrongly, to be less important? Is it because they have what some describe as the “smoker’s disease” and, in the minds of some, bear a certain amount of responsibility for their predicament? This notwithstanding the fact that some will have never smoked, let alone the fact that for those who did, there was precious little of the knowledge that we have today of the ill effects of smoking when they first started. That’s certainly a view frequently expressed by people with COPD at the local support group meetings I attend.

While there is, as yet, no cure for COPD, people are dying unnecessarily from a disease that can be managed far better. We rightly protest about our older people having to spend many undignified hours on hospital trollies. Yet many of these people are our COPD patients, whose hospitalisation could potentially be avoided.

Investment in primary care, including simple diagnostics such as the spirometry breathing test, is paramount if we are going to try to stem the tide of late diagnosis. Investment in the necessary staffing expertise and pulmonary rehabilitation programmes in hospitals, and greater community supports such as COPD outreach programmes, which would enable early discharge and treatment at home, would make a huge impact.

World COPD Day takes place on Wednesday, November 16th. For more information on COPD and the work of COPD Support Ireland, visit copd.ie

Damien Peelo is executive director, COPD Support Ireland.