Breathless in Ireland: New planning booklet launched for those living with COPD

Categories: Community Engagement.

Chronic Obstructive Pulmonary Disease (COPD) is the fourth deadliest disease in Ireland. COPD is an umbrella term used to describe progressive lung diseases including chronic bronchitis or emphysema. It is a long-term illness that cannot be cured. Over 500,000 people in Ireland have the condition. Within the European Union Ireland has the highest rate of COPD admissions to hospital.

The Irish Hospice Foundation in partnership with the COPD Support Ireland ( has developed an information booklet written by patients for patients with CPD.  This publication is the first of its kind in Europe and it has been developed to help those with COPD plan for all aspects of their future.

On March 26th 2018 the booklet was launched at the headquarters of the Irish Hospice Foundation by   Dr Marcus Butler, Consultant in Respiratory Medicine at St Vincent’s University Hospital. At the launch Dr Butler said:  “COPD is not one of those instantly recognisable conditions in the public’s mind, so introducing this literature, which focuses on managing COPD as well as opening up conversations around a more palliative care approach, is very welcome. There is no cure for COPD, but symptoms can be better controlled with early diagnosis.”

The booklet was crucially developed by people living with COPD, family carers, a respiratory healthcare professional, COPD Support Ireland and the IHF. It contains information on advance healthcare directives, planning legal affairs, talking to others about your wishes, palliative care needs and a list of other resources which people with COPD might find helpful.

Patient advocates presented about their experiences and involvement at with the development of the booklet.  Their reflections emphasised the importance of being able to talk about the condition and to plan for their care and managing their illness.

CEO of COPD Support Ireland Bernie Murphy said: “COPD is often overlooked in the national health agenda because lung disease is not the most comfortable topic to discuss. However, we cannot ignore the large numbers of people in Ireland who have this condition and deserve to be looked after, informed and helped to manage the illness the best way they can.”
Marie Lynch, Head of Healthcare Programmes at the IHF: “We are very proud to be working with COPD Support Ireland and the rest of the working group to deliver this booklet. Through our own advance planning booklet Think Ahead, we have seen the powerful impact of people being in control of their wishes at the end of life. Giving people this platform to stay informed so they can make such difficult decisions not only gives people the gift of peace of mind, but their families too.”

COPD: The Facts

  • The condition affects around 500,000 people in Ireland, of whom only 200,000 have been diagnosed (2011 Census figures)
  • It is the fourth most common cause of death in Ireland after lung cancer, heart disease and stroke
  • Symptoms include a chronic cough, breathlessness, pressure on the chest and a wheeze.
  • The condition can be managed better with an early diagnosis
  • Exercise really helps with living with the condition even if it’s just one short walk each day
  • 10-15% of people with COPD have NEVER smoked
  • Ireland has the highest rate of COPD admissions to hospitals in the EU and 60% more admissions than the UK
  •  Pulmonary rehabilitation is one of the most effective treatment methods, yet the health system only has a capacity to cater for 10% of COPD patients.

You can download Planning for the Future with COPD Booklet from the Irish Hospice Foundations website here

if you would like more information about the IHF Think Ahead programme click here

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