Deputy John Deasy asked the Minister for Health the steps being taken to ensure adequate service provision across Irish hospitals for Cystic Fibrosis patients, both children and adults, including specialist isolated treatment facilities, in view of the fact that Ireland has the highest CF rates in the world, with one in nineteen people here carrying the gene.
Reply from Minister James Reilly: Cystic Fibrosis is Ireland's most common life-threatening inherited disease. This Government is acutely aware of the challenges that people with cystic fibrosis and their families face in managing their condition and fully acknowledges the need for and supports the provision of dedicated accommodation in an environment which allows appropriate isolation for improved infection control. Given the need to avoid the exposure of CF patients to possible sources of infection, the aim is to minimise wherever possible the need to admit such patients to hospital and instead to provide treatment on an ambulatory daycare basis, as close as possible to home.
There has been significant investment in services for people with cystic fibrosis in the past few years including a new dedicated CF unit opened in 2012 at St Vincent's University Hospital, the National Adult Referral Centre; a new purpose-built dedicated Ambulatory Outpatient facility at Beaumont Hospital for patients with CF; a new outpatient facility at CUH which was completed with local philanthropic support from Build4Life as well as Exchequer funding. Other capital projects currently underway include a dedicated paediatric out-patient CF unit at Galway University Hospital which is expected to be completed during 2014; and the development of a CF unit in CUH, for which funding has been raised by Build4Life. As the Deputy will be aware, Build4Life has raised the issue of ringfencing of these beds for patients with CF. I understand that the HSE and Build4Life are now in a process which I hope will bring about a resolution shortly.
A further key initiative in recent years has been the introduction of newborn screening for cystic fibrosis in July 2011. This test is included as part of the National Newborn Bloodspot Screening Programme. Early identification and care will enhance the outcomes for children with CF. Last year, the new CF drug ivacaftor (Kalydeco) was made available and it is estimated that approximately 120 patients will be suitable for treatment with this new drug.
A Cystic Fibrosis Clinical Programme has now been established as one of the HSE's National Clinical Programmes. Its aim is to provide the framework to ensure that patients with CF receive optimal care to preserve/enhance their quality of life and improve health outcomes and wellbeing within the context of the three key objectives of all of the National Clinical Programmes - to improve the quality of care provided, to improve access to specialist services and to improve cost-effectiveness and efficiency.
Deputy John Deasy asked the Minister for Health if his attention has been drawn to the developing crisis regarding cystic fibrosis beds in Cork University Hospital; and the position regarding the supposed ringfencing of agreed beds for CF patients in the context of substantial fundraising by the Build4life voluntary charity.
Reply from Minister James Reilly: At the outset, I want to commend Build4Life on its achievement in raising €2.3m to fund this unit in Cork University Hospital. The situation that has now arisen in relation to this development is regrettable. I understand that the HSE and Build4Life are now in a process which I hope will bring about a resolution shortly.
I understand that the proposed Unit will have 20 beds, 10 of which will be designated for patients with CF, eight within the unit with two additional isolation beds provided in the Renal Unit. I have been assured that patients with CF will have priority access to these ten beds at all times. The ring fencing of beds for CF patients has been an issue in other hospitals around the country but has been resolved through written agreements and good operational procedures. I am confident that a similar agreement can be reached in this instance.
The key issue is that patients with CF are assured that sufficient beds will be available when they are needed, but at the same time, when beds are not needed for CF patients, they can be freed up for other very ill patients with respiratory and other conditions. I note that Cystic Fibrosis Ireland has expressed its confidence that, following discussions, an agreement can be drawn up that will allow building to commence.