COPD
EFA Book on COPD in Europe - Sharing and Caring
How is Europe Doing? EFA was prompted to try to bring Chronic Obstructive Pulmonary Disease out of the shadows by collecting information about the disease from patients associations and to showcase the role of patient associations in sharing and caring COPD.
The book sheds light on an “underdiagnosed, undertreated and neglected disease”. It stresses that the misclassification and different definitions of COPD throughout Europe lead to underestimations of the actual impact of the disease.
All 12 national patient associations surveyed reported that access to early diagnosis of COPD is ‘difficult’ or ‘very difficult’ in their countries. An alarming message, considering that an early and accurate diagnosis of COPD would allow for lifestyle changes and timely treatment that can prevent the progression of the disease. Also, COPD has a significant social impact such as disability and poor quality of life for people with the disease, their families and carers. Anxiety, depression and stress are common and further negatively affect the COPD prognosis. But even once diagnosed, access to programmes, treatments, support services and rehabilitation in most countries is reported to be “difficult” to “very difficult”. In Austria for example, only hospitalised patients undergo rehabilitation and there is a long waiting list
COPD
There is an Urgent Need For Change and A Comprehensive European Strategy to Fight Chronic Obstructive Pulmonary Disease
The Book shows that urgent actions need to be taken in order to improve the rate of diagnosis, access to comprehensive care and healthy environment. “COPD is sometimes considered as part of the discussions on various related EU policy initiatives including outdoor and indoor air pollution, climate change, product regulations, and tobacco control. However, no dedicated EU strategy has been adopted on respiratory diseases yet and the topic needs to be tackled directly,” urged Marianella Salapatas, EFA President. “We are calling on the EU Commission to establish a EU framework for sharing best practices on COPD management by the end of 2010”
The book advocates a coordinated and comprehensive EU-wide strategy on COPD, rather than disperse initiatives at European and national levels, taking into consideration local situations and involving the EU and national policy makers, healthcare professionals, and patient associations.
EFA's Book is a challenge to You. Take it and be part of positive outlook for COPD.
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COPD IN PATIENTS' OWN WORDS
‘The term COPD [BPCO] remains
unknown to most people and is
difficult to explain’. France and Italy
‘Diagnosis is generally made too
late.’ Germany
‘When I heard I had COPD in 2002, I had no clue what it was.’ European patient with COPD
‘It’s frustrating – you don’t look sick, I can get up and put make-up on but I can’t walk 10 yards without being out of breath." Patient from Ireland
I still remember the day: 2nd of June 1995, and I was diagnosed with COPD. It was at that very
moment that I understood the disease and the implications for my daily life. Patient from Portugal
speak up for the patient
The mission of COPD patients associations is to improve the health condition, quality of life and overall survival of patients and to advocate for the rights of patients, their families and carers.
‘Eleven years ago I got a cold which did not go away, it turned out to be COPD. I decided to become a volunteer for the Asthma Foundation. Since then I have met so many new people, opening up a new world. Sometimes I joke that, in that respect, COPD is the best thing to ever happen to me.' Patient from the Netherlands