Wednesday, 15 October 2008
Cystic Fibrosis Services.
Ireland has the highest rate of cystic fibrosis in the world and one of the lowest life expectancy rates for cystic fibrosis patients. While there is no official data on life expectancy of cystic fibrosis patients in Ireland, it is clear that we lag behind many other developed countries in life expectancy for cystic fibrosis patients.
In an effort to change this, family and friends of cystic fibrosis patients in Cork and Kerry founded a group called Build4Life. The aim of Build4Life is to raise awareness of cystic fibrosis in the region and to raise over €1 million for a dedicated adult cystic fibrosis treatment unit at Cork University Hospital. I am pleased to say that after an enormous amount of voluntary effort, the Build4Life campaign has already raised over €1.3 million.
A statement of need for the provision of these dedicated cystic facilities has been passed by the executive management board at Cork University Hospital, and it is now up to the Health Service Executive to progress the project. It is expected there will be 150 adult cystic fibrosis patients in Cork and Kerry alone by the end of next year. I understand the statement of need provides for an adult day centre for adult cystic fibrosis patients and 11 isolated units for patients.
I emphasise that the multidisciplinary medical team is already in place for the treatment of adult cystic fibrosis patients at Cork University Hospital. Dr. Barry Plant, a respiratory consultant with particular focus on cystic fibrosis, is driving the initiative within the hospital for the provision of dedicated facilities for cystic fibrosis patients. The team also comprises a paediatric respiratory consultant, adult and paediatric nurses, physiotherapists and dieticians. In addition, the Cystic Fibrosis Association of Ireland is funding a registrar post at Cork University Hospital this year and, hopefully, next year as well. Essentially, the multidisciplinary team is already in place and the patients are being treated, but not in a suitable and appropriate environment.
The Build4Life campaign is calling on the HSE to identify an area within the hospital campus which would be suitable for the provision of these dedicated cystic fibrosis facilities. This is absolutely essential because cystic fibrosis patients are at serious risk of cross-infection on an ongoing basis, which results in many visits to hospital. At present, cystic fibrosis patients must be admitted to hospital through the accident and emergency department, which leaves the patients exposed to infections which can be life threatening, given their condition. One in 19 people in Ireland carries the cystic fibrosis gene. If two persons with the gene have a child, that child has a one-in-four chance of having cystic fibrosis. There are many families who have more than one child with cystic fibrosis. I believe that the HSE has an obligation to respond to the extraordinary voluntary initiative taken by everyone associated in the Build4Life campaign in Cork and Kerry, and I ask the HSE as a matter of priority to identify an area within Cork University Hospital where these facilities can be provided.
The Pollock report of 2005 demonstrated clearly that the majority of adults with cystic fibrosis in Ireland are being treated in facilities that are dangerous. The report was extremely critical of the lack of segregation and isolation facilities throughout the country. The report recommended the development of a small number of dedicated cystic fibrosis centres around the country.
Life expectancy for cystic fibrosis patients in other European countries and in the United States is in the 40s and 50s, with many patients living with cystic fibrosis and leading healthy and productive lives well into their 60s. As the country with the highest incidence of cystic fibrosis in the world, we should become the world leaders in services and facilities for cystic fibrosis patients, and I hope that the Minister will have a positive response on the development of such facilities at Cork University Hospital.
Seán Haughey (Minister of State, Department of Education and Science; Minister of State, Department of Enterprise, Trade and Employment; Dublin North Central, Fianna Fail)
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I will be taking this matter on behalf of my colleague, the Minister for Health and Children, Deputy Harney.
There are currently approximately 1,100 people living with cystic fibrosis in Ireland. Approximately 45% of these people are adults and 55% are children. The Minister has identified the development of cystic fibrosis services as a policy priority in recent years. In 2006 and 2007, additional revenue funding of €6.78 million was provided to the Health Service Executive to develop cystic services. Part of this funding has facilitated the appointment of 44 staff to date to deal directly with cystic fibrosis in a number of hospitals nationally, including Cork University Hospital. In addition, the necessary funding has been made available to facilitate the recruitment of a further 37 staff nationally. The other hospitals which have benefited from this funding include five in Dublin — St. Vincent's, Crumlin, Tallaght, Beaumont and Temple Street — together with Galway, Limerick and Waterford.
Cork University Hospital currently provides both adult and paediatric cystic fibrosis services. It is one of very few hospitals that have both services on the same site. There has been a significant investment in the resource allocated to enhancing cystic fibrosis services at Cork University Hospital over the past number of years. In excess of €700,000 in additional revenue funding was provided to the hospital in 2006 and was used to recruit two new medical consultants, one to lead an adult service and the other to lead a paediatric service. The consultant for adult service took up his post in August 2007. Interviews for the second post were held but did not result in the selection of a suitable candidate for permanent appointment. The post is currently filled in a temporary capacity pending its filling on a permanent basis.
Additional nursing, allied health professional and clerical support staff have also been recruited for cystic services in Cork University Hospital. In 2007 the HSE southern hospitals group received an additional revenue allocation of €293,000. This funding will be used to recruit a medical scientist to support the provision of microbiology services and to advise on infection status and antibiotic susceptibility of people with cystic fibrosis. The funding will also help to enhance nursing and physiotherapy support services with the planned recruitment of two further nurse specialists and a physiotherapist for cystic fibrosis patients.
The HSE has informed the Minister for Health and Children that it is currently considering the provision in Cork University Hospital of a new dedicated facility for patients with cystic fibrosis. This would include inpatient beds, a dedicated day unit and a respiratory ward to accommodate the caseload of adult patients, and the necessary multidisciplinary team, and enable cystic fibrosis services to be delivered in line with best practice. A new facility would also provide a pathway for existing paediatric patients to move to adult care within the same setting and with many shared staff.
The Minister understands that Cork University Hospital has been in discussion with the Build4Life programme, a charitable organisation which is proposing to donate up to €1 million towards a dedicated cystic fibrosis unit at the hospital. The pace at which such developments can take place will, of course, depend on the availability of the capital and revenue funding, but the Minister and the HSE are committed to ensuring the best possible service for patents in the Cork area.