Madam, – The Medical and Scientific Council of the Cystic Fibrosis Association of Ireland is made up of healthcare professionals and scientists who look after children and adults with cystic fibrosis in the Republic.
There have been a number of recent comments in the media regarding cystic fibrosis. It is important that we clarify some issues regarding cystic fibrosis in the interest of patient care. This is especially important because the Republic has the highest incidence of cystic fibrosis (CF) in the world. While the severity varies from person to person, the average disease severity of CF in the Republic is greater than that in other areas such as Northern Ireland, the US and Canada.
The care of those with CF includes outpatient and home care, day care treatment in hospital, and inpatient hospital care. People with CF have intermittent exacerbations (worsening) of their condition and these exacerbations become more frequent and usually more severe with increasing age. Effective treatment 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 they 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 outlined the number of rooms that are needed. We acknowledge 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. 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 in to hospital for necessary treatment, or delay coming to hospital, 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 those with CF. Delays in the treatment of CF exacerbations may lead to permanent damage to the individual’s health.
People with CF and their families battle with CF every day 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 those with CF and we will be pleased to work with the HSE and the Department of Health to achieve this. – Yours, etc,