Monday 21st October, 2013: A new patient organisation aimed at providing support for almost half a million Irish people living with a potentially deadly respiratory condition was launched by Mr Alex White TD, Minister of State, Department of Health with responsibility for Primary Care at an event in Dublin today.
COPD Support Ireland is a charity set up to support all those living with chronic obstructive pulmonary disease (COPD), a lung condition that makes it hard for sufferers to breathe due to obstruction of the airways in their lungs. It is Ireland’s first national COPD support and advocacy body, bringing together local support groups from around the country, to help those living with, and caring for someone with, COPD.
COPD is a major cause of death and disability1 and mainly affects those over 40 years of age. While it can lead to severe debility and social isolation, it is preventable.
COPD Support Ireland’s centralised organisational structure aims to strengthen the support available to service users and advocate for those directly affected by the debilitating disease, both at a local and governmental level.
Michael McGloin, President of COPD Support Ireland, who was diagnosed with COPD 14 years ago and has worked tirelessly at a grassroots level to raise awareness of COPD, spoke at the launch of the new charity:
“COPD is destined to be the third leading cause of death globally by 2020, and with Ireland’s ageing population, it is an issue that we as a nation simply cannot ignore. This disease needs to be prioritised immediately if we are to avoid a future health time bomb.
“When I was first diagnosed with COPD in 1999 I found it hard to learn more about the disease and what I could expect from it. This led me to set up a support group in Sligo to help others with this condition. I hope that the development of this national organisation will provide much needed support and comfort for those currently living with the disease, and also those recently diagnosed.”
Commenting on the launch of the new national group Damien Peelo, CEO, COPD Support Ireland said that there was a significant need for more awareness and action to tackle this devastating condition:
“Recent research has highlighted the general lack of understanding and awareness of COPD as a disease across society, so the establishment of COPD Support Ireland will provide not only a valuable education and support resource for those living with the disease, but also a mechanism to advocate on behalf of the COPD community.
“Ultimately, we’re aiming to bring COPD out of the shadows and give those affected by this disease not only a national voice, but hope for the future.”
It is estimated that there are more than 440,000 people with COPD in Ireland1, and the disease is destined to be the third leading cause of death in the world by 20201. Recent research found that over a third of people (36%) with COPD said that the lung disease had a detrimental effect on their careers, with almost a fifth (19%) indicating that it forced them to retire early2. The vast majority of those surveyed (82%) were not familiar with its symptoms2. The main risk factor for COPD is smoking, which causes 85-90% of COPD deaths3.
A new COPD app has also been developed to assist healthcare professionals to diagnose a patient’s symptoms and keep track of their treatment progression. It is supported by the Irish Thoracic Society and available for free download from the app store.
According to Professor Tim Mc Donnell, National HSE Clinical Lead, HSE COPD Programme and speaker at the event:
“COPD is major contributor to hospitalisations and has a detrimental impact on quality of life. Worryingly, Irish mortality rates for COPD are amongst the highest in Europe – higher than the former Eastern Bloc countries of Kazakhstan and Romania – and our ageing population means that the prevalence of COPD is set to increase.
“A recent European COPD audit indicated that 50% of all patients admitted to hospital are either dead or back in hospital within three months of admission, so there is a massive incentive for all those in the COPD community to tackle this disease head-on and reduce the amount of unnecessary deaths associated with the disease.
“Early diagnosis is essential for the effective treatment of COPD, but even severe cases can be improved with treatment including pulmonary rehabilitation programmes. The new COPD app will be a useful tool for healthcare professionals to track and identify the symptoms, helping them to manage the disease more effectively.”
COPD Support Ireland’s first major step as a new national organisation was the announcement of a unique week-long series of free screening events that will be taking place across the country next month to coincide with World COPD Day. A dedicated COPD screening bus will travel to a number of cities nationwide from Monday 18th to Friday 22nd of November.
The screening programme is supported by Novartis Ireland in partnership with the Irish Thoracic Society. Specialist nurses will be available to screen patients for COPD and COPD Support Ireland will have local members on hand to provide practical advice and support for those looking for information on the disease. World COPD Day information packs will also be sent to hospitals throughout the country.
The COPD screening bus will visit the following locations;
• Dublin, Monday 18th November
• Sligo, Tuesday 19th November
• Mayo, Wednesday 20th November (World COPD Day)
• Waterford, Thursday 21St November
• Cork, Friday 22nd November
Dr Eva Lingren, Medical Director, Novartis and speaker at the event, said:
“Novartis Ireland is delighted to be supporting the establishment and launch of COPD Support Ireland, and with the positive impact that this will have on driving appropriate diagnosis for people with COPD. We hope that the free screening programme will spread further awareness and understanding of this misunderstood condition. Given the high and growing prevalence, the earlier COPD is diagnosed the better, as it means improved quality of life and improved symptom control, so the upcoming screening programme is a significant step in this direction.”
To learn more about COPD, its symptoms, treatment, the COPD screening bus route and World COPD Day, please visit http://www.copd.ie.
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For further information please contact:
Andrew Shaw/ Serena Leyden
First Medical Communications
01 6650300 / 087 7525445 (Andrew)/087 1379138 (Serena)
ashaw@firstmedical.ie/ sleyden@firstmedical.ie
Notes to Editors:
What services COPD Support Ireland intends to offer:
• Provide information, support and advice to those affected by COPD
• Develop a national network of local groups who understand what it is like to live with COPD
• Advocate for all members by educating the public, the Government and the media about COPD and the subsequent needs of patients/carers and their families
• Highlight the signs and symptoms of COPD
• Raise awareness of the profound link between dangers of smoking and the development of COPD
• Assist members of COPD Support Ireland in accessing educational and healthcare resources
• Promote and support research and educational initiatives on COPD
• Act as a liaison on behalf of patients with the National COPD Programme and other relevant sections of the HSE
• Enhance the provision of information to patients and carers through our website and social media
COPD Fast Facts:
• COPD includes two main conditions: emphysema and chronic bronchitis. The disease gets worse over time and has a major impact on the lives of patients and their families.
• Over 440,000 people have COPD in Ireland3 and by 2020 it is estimated that COPD will be the third leading cause of death worldwide4
• Smoking is the leading cause of COPD—about 85 to 90% of COPD deaths are caused by smoking5
• COPD is also sometimes caused by other factors, such as over-exposure to smoke, dust or other fumes, so some people who have COPD may have never smoked before
• Symptoms of COPD include: frequent coughing or wheezing; breathlessness; difficulty breathing; and tiring easily from everyday tasks, such as climbing stairs or household chores.
• Those at high risk of developing COPD include:
– Any current or former smoker over age 40
– Someone who never smoked but has a family history of COPD, emphysema or chronic bronchitis
– Those with exposure to occupational or environmental pollutants
– Those with a chronic cough, sputum (matter discharged from air passages) production or breathlessness.
Anyone with one of these risk factors should go to their GP and be tested for COPD.
• Early diagnosis is very important. COPD is diagnosed by a doctor through spirometry testing, a simple and painless test that takes just a few minutes. The earlier COPD is diagnosed the better, as it means improved quality of life and improved symptom control.
• Many people mistake the symptoms of COPD with getting old, and don’t visit their GP until the symptoms are very far along, which can lead to more severe cases of the condition.
• Recent attitudinal research has highlighted the devastating impact that COPD can have on those living with the disease with 83% saying that it had a negative impact on their quality of life2.
• Research has also shown that when asked about the potentially deadly disease almost half of those surveyed had never heard of COPD and the vast majority (82%) were not familiar with its symptoms – this is despite the fact that almost 10% of the population are directly affected by the disease2.
How is COPD treated?
Although COPD cannot be cured, it can be treated and managed effectively. Smoking cessation is the single most effective intervention to reduce the risk of developing COPD and slow its progression.
There are different kinds of medications for treating COPD. The most common are bronchodilators and inhaled steroids.
Bronchodilators are central to managing symptoms of COPD and are inhaled medications that help to open the airways. They are the basis for on-going therapy and for controlling the symptoms of COPD. Bronchodilators can improve lung function, general well-being, the ability to exercise and exacerbations (when COPD symptoms suddenly worsen).
If COPD worsens, doctors may combine different types of medications. Treatment with inhaled steroids is for patients with more severe COPD and who may have frequent exacerbations. Regular treatment with inhaled steroids may reduce serious exacerbations and improve health status.
People living with COPD can manage their condition by following their doctor’s advice and sticking to their treatment plan. Pulmonary rehabilitation has also been shown to greatly improve patients’ condition and overall well-being. Pulmonary Rehabilitation is a multidisciplinary programme which involves doctors, nurses, physiotherapists, dieticians, occupational therapists, social workers and clinical psychologists. The programme covers exercise training, nutritional advice, education about your condition and offers counselling.
Good nutrition and exercise can also help those living with COPD to improve their health and well-being. Exercise can help to strengthen the breathing muscles that allow air to move more easily through the lungs.
More about exacerbations
Some people with COPD may experience episodes where symptoms get much worse. These episodes are called exacerbations. There is a greater sense of breathlessness, more coughing, and more mucus produced. This is usually caused by an infection or inhaling some form of pollution. Sometimes the cause of an exacerbation is not found, however.
http://www.erswhitebook.org/chapters/the-burden-of-lung-disease/ [Accessed 17 October 2013]
2 Empathy Research: COPD Awareness and Patient Research 2012
2 The Irish Thoracic Society data http://www.livingwithcopd.ie/ [accessed 17 October 2013]
4 Global Initiative for Chronic Obstructive Lung Disease (GOLD). Global Strategy for the Diagnosis, Management, and Prevention of Chronic Obstructive Pulmonary Disease. Updated 2013. http://www.goldcopd.org/guidelines-global-strategy-for-diagnosis-management.html. [Accessed 18 September 2013].
5 Celli BR, MacNee W, et al. Standards for the Diagnosis and Treatment of Patients with COPD: A Summary of the ATS/ERS Position Paper. European Respiratory Journal. 2004; 23:932-46.