Kath Byrne: Breathlessness doesn’t mean giving up on lfe

Today is World COPD Day – not a date marked in many people’s calendars. Unlike World Stroke Day, or World Heart Day, COPD isn’t a familiar disease to everyone. But more than 129,000 people in Scotland are diagnosed with Chronic Obstructive Pulmonary Disease, and many more remain undiagnosed and are missing out on the treatment they need. COPD isn’t curable, and without proper treatment and support it has a huge effect on people’s quality of life. Symptoms such as breathlessness and fatigue mean the most simple daily tasks can become difficult, leaving people trapped in their own homes.

Scotland has one of the poorest records of lung disease in the UK and Europe, with some of the worst prevalence rates, and high mortality rates. The lasting impact of heavy industry in some areas remains a significant factor, and communities with greater social deprivation have higher rates of lung disease. As a result, COPD currently accounts for the most visits to Accident and Emergency departments in Scotland, and is responsible for over 120,000 emergency bed days each year.

But one of the cheapest and most effective treatments for COPD isn’t always available in Scotland. If this was a drug there would be a national scandal about the “postcode lottery” of being able to access it. If you live in Dunbar, you can access it because you live in East Lothian, but a few miles down the road in Eyemouth, you won’t – because it’s not available in the Borders.

This treatment isn’t a drug, though – it’s a programme of support delivered by a range of health professionals called Pulmonary Rehabilitation – or PR. This combines advice, information, support and physical exercise to enable people to keep as healthy as they are able when living with a lung disease such as COPD. With PR, people are able to manage symptoms such as breathlessness, which often leave people in fear of being active, which in turn makes their COPD worse. Without breaking that cycle, people with COPD are at risk of isolation, less likely to live full lives and more likely to be readmitted to hospital.

Pulmonary Rehabilitation has been conclusively proven through many research trials to be a highly effective treatment. And it saves money when compared with the cost of repeated GP visits and time spent in hospital.

But the NHS is under so much financial pressure, and dealing with the challenges of integrating with social care, that we see resources are often prioritised towards providing acute care to people, not rehabilitation which will help them stay away from the NHS in the long-term.

Living with lifelong health conditions like COPD means people need ongoing support, not quick fixes. For those people who are able to access rehabilitation, we know the benefits can be lost if they aren’t able to keep active. Charities like Chest Heart & Stroke Scotland are a key part of providing support where it’s needed, within communities. We have volunteer-led groups affiliated to us across the whole of the country, many of which provide opportunities to be active, and more importantly, provide a social and fun element too, which means people want to keep coming back. Through these groups some 1,400 people remain active.

Lung disease, like COPD, remains the Cinderella of health conditions in Scotland – unlike heart disease and stroke there hasn’t been huge investment at a national, government and NHS level in tackling it strategically. Together with our partners the British Lung Foundation, Chest Heart Stroke Scotland is working to address this, raising its profile with our politicians. As a result, at Parliament this week there’s been both a debate on World COPD Day, and an evening reception to give MSPs the opportunity to meet people living with COPD, and experience for themselves what it’s like to live with symptoms such as severe breathlessness. We need to make sure that the voice of people living with lung disease is heard. The lucky ones tell us that Pulmonary Rehabilitation has given them their lives back, and that local community support has sustained them. We need to ensure everyone who needs it gets the same benefits, not just the fortunate few.

Chest Heart & Stroke Scotland’s vision is a Scotland where everyone living with chest, heart and stroke conditions is supported to shape their future and live the life they want to lead. Our Freephone Advice Line is available Monday-Friday for support and information on chest, heart and stroke – call 0808 801 0899 free from landlines and mobiles.

Kath Byrne, policy manager at CHSS