Tuesday, 13 October 2009
Cystic Fibrosis Services.
I thank the Leas-Cheann Comhairle for allowing me to raise an important national issue, namely, the provision of dedicated facilities at Cork University Hospital for patients with cystic fibrosis. When I checked the Official Report, it is almost a year to the day, 15 October 2008, when I last raised this matter on the Adjournment. I acknowledge the progress that has been made since in the provision of services and facilities for people with cystic fibrosis. I also acknowledge the additional funding provided for staffing levels with the roll-out of multidisciplinary support teams across the country. Significant improvements have been made in services infrastructure, particularly in St. Vincent's Hospital, Dublin and elsewhere. I am glad there has been some improvement in life expectancy for people with cystic fibrosis. The Health Service Executive provides direct funding for maintaining a cystic fibrosis registry which now can provide relevant data for 90% of those with cystic fibrosis.
This Adjournment debate is also timely with the publication today of the HSE report on services for people with cystic fibrosis. The report was completed in 2006 but has only now been published. It followed on from the Pollock report, commissioned by the Cystic Fibrosis Association of Ireland, which was presented to the HSE. Many of that report's recommendations have been implemented in the past few years.
A statement of need was finalised some time ago for the provision of dedicated cystic fibrosis facilities at Cork University Hospital, to include a dedicated day care unit, with the scope and scale of inpatient beds in a respiratory ward outlined. Anyone with knowledge of cystic fibrosis will be aware that the risk of cross-infection for sufferers in an acute hospital environment is significant. Independent access to cystic fibrosis facilities in a hospital environment is important for sufferers to prevent exposing them to a significant risk of cross-infection which can have fatal consequences. Some progress has been made in the provision of such facilities at Cork University Hospital. The most recent correspondence I received from the HSE indicates plans are being advanced for an interim day care facility in the hospital which will include a dedicated day care space for adult patients until the overall site development plan is advanced for the permanent provision of facilities for children and adult cystic fibrosis patients.
I acknowledge the work of the voluntary group, Build4life, in counties Cork and Kerry which to date has raised in excess €1.5 million. I also acknowledge the work of the Cork 65 Roses Ball committee which held a charity ball last Saturday night to highlight the need to improve the facilities available at Cork University Hospital for both adult and children cystic fibrosis sufferers.
I hope the Minister of State will be able to outline the national position and that in Cork University Hospital in the provision and improvement of services outlined in today's report from the HSE. I welcome the statement the Cystic Fibrosis Association of Ireland has published in response to the HSE report, particularly that new-born screening for cystic fibrosis will begin in 2010. I look forward to the Minister of State's response and hope we can provide as soon as possible across the country and at Cork University Hospital the facilities cystic fibrosis sufferers need and badly deserve.
John Moloney (Minister of State, Department of Education and Science; Minister of State, Department of Health and Children; Minister of State, Department of Enterprise, Trade and Employment; Minister of State, Department of Justice, Equality and Law Reform; Laois-Offaly, Fianna Fail)
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I apologise for the absence of the Minister for Health and Children, Deputy Harney.
The Government is acutely aware of the tremendous challenges the 1,174 people living with cystic fibrosis face every day. The Minister for Health and Children has prioritised the development of services for people suffering with cystic fibrosis and, since 2006, funding of €6.78 million has been provided for the HSE to develop services. It is particularly important to develop efficient and equitable cystic fibrosis services, as evidence shows that not only are people with cystic fibrosis living longer, but the number of children born with cystic fibrosis is also increasing. It is vital, therefore, that these services are enhanced to cope with the anticipated increase in demand.
To date, the HSE has primarily focused on increasing staffing levels in treatment units across the country and developing and modernising hospital facilities to ensure patients requiring admission can be treated in the best environment possible. The approach in developing services for persons with cystic fibrosis has been informed by two significant reports. The first, the Pollock report, was commissioned by the Cystic Fibrosis Association of Ireland and involved a review of existing hospital services for cystic fibrosis in the context of accepted international standards. This report identified the need to develop services and improve the physical infrastructure in hospitals which treat cystic fibrosis patients.
A multidisciplinary working group, established by the HSE in 2005, undertook a detailed review of cystic fibrosis services. The group identified a range of necessary service improvements, including the need to increase the levels of consultant, nursing and allied professional staffing in cystic fibrosis units nationally. The group's report will be made available shortly by the HSE.
Since 2006, many programmes and developments have been initiated and many are completed or near completion. In Cork the situation is improving significantly for the 110 adult and 80 paediatric patients for whom Cork University Hospital cares. Two new medical consultants, additional nursing staff, allied health professional staff and support staff have been recruited, ensuring patients can receive prompt and appropriate care. Plans are also being developed to provide a cystic fibrosis day care facility in the hospital. This is being advanced in conjunction with the Build4life Association, the adult cystic fibrosis multidisciplinary team and the executive management board of Cork University Hospital.
At St. Vincent's Hospital, the national adult tertiary referral centre, several capital projects have been completed. The enhanced facilities provided include a new ambulatory care centre and a new emergency department which includes single-room accommodation. The refurbishment of accommodation to provide eight single en-suite rooms for patients with cystic fibrosis has also been completed and the beds are now operational. The next phase in the development of St. Vincent's Hospital's facilities will involve the building of a new ward block to replace existing accommodation. The new ward block will provide single room en-suite accommodation, 100 rooms, with a dedicated day unit for people with cystic fibrosis, including single day treatment rooms with en-suite sanitary facilities. It is hoped the development will become operational as early as possible in 2011.
Another initiative which will contribute to the improvement of care for people with cystic fibrosis is the creation of data registries which gather information from individual patients and provide a pool of accurate data that can be used for research purposes. An independent registry for cystic fibrosis, funded by the State, has been established. This will help to make international comparisons over time regarding the incidence of cystic fibrosis treatment and outcomes for patients. An epidemiological survival analysis has recently been completed by the registry. The final report is expected to be published shortly. Among the many elements of the report is the welcome finding that the average life expectancy of people with cystic fibrosis has increased significantly in recent years. Progress is also being made by the HSE on the introduction of a national screening programme for newborns. A steering group has been established to oversee its implementation and to ensure co-ordination with the development of other relevant services. I look forward to the early introduction of this important service. Overall, this package of measures demonstrates the Government's strong commitment to improving the level of services available to people with cystic fibrosis, not alone in Cork but throughout the country.