Medical experts urge cystic fibrosis patients not to cancel or delay visits to hospital
There have been comments in the media lately regarding cystic fibrosis (CF) and it is important that we clarify some issues in the interest of patient care.
The Republic has the highest incidence of CF in the world. While the severity varies from person to person, the average here is greater than that in other places such as Northern Ireland, the US and Canada.
The care of people with CF includes outpatient and homecare, daycare treatment in hospital and inpatient hospital care. People with CF have intermittent exacerbations (worsening) of their condition and these become more frequent and usually more severe with increasing age.
Effective treatment of these exacerbations improves health and quality of life and is very important in preventing or slowing the decline in health that otherwise occurs.
Some people with exacerbations may be treated at home or as outpatients. However, many will not recover from their exacerbation with outpatient treatment and these must be treated in hospital without delay; this is especially so for adults and those with severe disease.
Therefore there is an ongoing need for dedicated inpatient beds for people with CF throughout Ireland and this need increases as people grow older.
In keeping with international standards, we have repeatedly pointed out that inpatients with CF should all be treated in single rooms and we have previously outlined the number of rooms that are needed.
We acknowledge that the care of people with CF in Ireland has improved since the Pollock report due to investment by the HSE and the Department of Health and Children.
However, present hospital facilities are not ideal in all centres and the number of single inpatient rooms for people with CF remains inadequate. We are very concerned that some people with CF do not come to hospital for necessary treatment, or delay doing so, because of their concerns about hospital facilities. Therefore we want to make it clear that the health benefits of hospitalisation far exceed any possible risks for people with CF in Ireland. Hospital care improves the health of people with CF. Delays in the treatment of CF exacerbations may lead to permanent damage to health.
People with CF and their families battle with the disease every day of their lives from the time they are born. They are among the bravest people in our society.
We have lobbied, and will continue to lobby, for the resources needed to treat people with CF and we will be pleased to work with the HSE and the Department of Health and Children to achieve this.
Prof Charles Gallagher
Dr Dubhfeasa Slattery
Prof Billy Bourke
Dr Gerry Canny
Dr Brian Casserly
Dr Animitra Das
Prof Jim Egan
Dr Basil Elnazir
Dr Peter Greally
Dr Cyril Gunaratnam
Dr James Hayes
Dr Michael Henry
Dr Mary Herzig
Dr Ann Leahy
Dr Fergus Leahy
Ms Geraldine Leen
Dr Barry Linnane
Dr Michael Mahony
Prof Gerry McElvaney
Dr Ed McKone
Dr Paul McNally
Dr Eithne Mulloy
Dr Philip Murphy
Dr Muireann Ní Chroinín
Dr Michael O’Neill
Dr Barry Plant
Dr Mark Rogan
Dr Rohininath Tummaluru
Dr David Vaughan
Mr Philip Watt
Medical and Scientific Council of the Cystic Fibrosis Association of Ireland
24 Lr Rathmines Road
Dublin 6
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