Mary White (Fianna Fail)
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I welcome the Minister of State at the Department of Health and Children, Deputy Moloney.

Cystic Fibrosis is Ireland's most common life threatening inherited disease. Ireland has the highest incidence of cystic fibrosis in the world and the worst strain. Ireland has the highest mortality rate for cystic fibrosis sufferers in the world and the worst adult treatment for the condition. It also has the largest proportion of families with more than one child suffering from the condition. There are an estimated 1,135 sufferers in the country. Every year approximately 30 to 40 children are born with cystic fibrosis in Ireland and one in 19 Irish people is a carrier of the gene. There is no cure for cystic fibrosis.

It has been shown that the overall condition of cystic fibrosis patients improves when their care is concentrated among specialists who are well aware of all the systems that must be treated. The future looks uncertain for cystic fibrosis patients as treatment, services and facilities in Ireland remain well below acceptable international standards.

The Pollack report of 2005 brought the crisis to the public's attention. It highlighted the serious situation existing at St. Vincent's University Hospital, the national adult referral centre. The exposure of immune-suppressed patients to cross-infection is a critical issue in the management of the health of a cystic fibrosis patient. In his report Dr. Pollack described the lack of segregation and isolation facilities at St. Vincent's University Hospital in Dublin as dangerous and creating significant risks of cross-infection by virulent organisms. The hospital treats almost 60% of the country's adult cystic fibrosis population.

Patients are treated and staff are working in totally unacceptable, overcrowded conditions. It is critical that cystic fibrosis patients be treated in single rooms with en-suite facilities and that they are not admitted through accident and emergency departments Younger patients are being exposed to the frightening reality of the disease's progression by sharing wards with older patients. The death rate among people with cystic fibrosis is intrinsically linked to facilities and specialist staff. Ireland displays a much higher death rate than England, Wales and Northern Ireland, showing an average life expectancy of 35. Respiratory infections are the main cause of clinical problems and the leading cause of death for people with cystic fibrosis because constant infections lead to deterioration of the lungs.

When asked about the funding issue in the Dáil last night, the Minster for Health and Children, Deputy Mary Harney, said that although the 120 bed unit in St. Vincent's Hospital which was promised and due to open in 2010 was a priority, the HSE cannot build it if it does not have the money. The Cystic Fibrosis Association of Ireland claims that the HSE was inundated with offers of private funding to build and furnish the unit and that the cost to the HSE would be that of staffing the unit. I remember hearing on a television or radio programme that a private donor was going to put up the money.

Will the Minister of State please clarify the matter for the House and the people of Ireland? On a human level, when one talks to parents who have children with cystic fibrosis, one realises it is a harrowing disease. The Minister of State is a parent with beautiful children. Any parent will know what it means to see a child suffering from the day it is born. I am familiar with one lady who is saving up money for her child to have a lung transplant. I cannot imagine what it is like to have to deal with this, only that it is brutal. I plead with the Minister of State to progress this matter and to consider having alternative funding.

John Moloney (Laois-Offaly, Fianna Fail)
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I thank Senator White. I apologise that the Minister, Deputy Harney, cannot be in the House and I take the Adjournment on her behalf. I accept totally the bona fides of the case made by the Senator. Last night in the Dáil, I took the Adjournment debate, not the Minister. I made it clear on her behalf that while the HSE states that it does not have the funding at present this situation will be reviewed after the budget of next week. I will rely on the script prepared for the Minister to outline her position.

The Minister has consistently emphasised the need to improve facilities and services to persons with cystic fibrosis. It is worth noting that 48 additional staff, 19 at St. Vincent's Hospital, including consultant, nursing and allied health professionals, have been appointed across the hospital system in recent years in order to enhance the level of services provided for persons with cystic fibrosis.

St. Vincent's Hospital in Dublin is the national adult tertiary referral centre for patients with cystic fibrosis. A number of capital projects to improve the quality of accommodation have been completed at the hospital recently. These include the refurbishment last year of accommodation to provide eight single en-suite rooms for the exclusive use of people with cystic fibrosis. The eight single rooms have improved the quality of service for people with cystic fibrosis. The hospital's management works closely with doctors caring for cystic fibrosis patients to ensure the needs of those patients requiring treatment are met within the overall bed complement at the hospital.

It is intended that a proposed 120 bed development will include dedicated facilities for patients with cystic fibrosis. These facilities will include appropriate isolation facilities, as mentioned by the Senator. Design work and preparation of tender documents continue in respect of the development. This is a significant capital project in the acute hospitals area. The HSE's draft capital programme of 2009-13 is currently the subject of consideration. The Minister has confirmed she will discuss this matter and the overall capital plan with the Health Service Executive after the budget of 7 April. This is far from being a closed case but it involves seeing what is available in the capital plan which will become obvious to all of us after next Tuesday. At this point, the Minister has stated she will encourage innovative solutions to implement high priority projects, so that services, including for patients with cystic fibrosis, can continue to be developed.

A number of other significant capital projects are being progressed for cystic fibrosis patients throughout the country, including in Beaumont Hospital. The HSE's expert advisory group on children and families produced a draft policy document on the implementation of a cystic fibrosis screening programme for newborns. A steering group will be established in 2009 to oversee the roll out of the screening programme. An independent register for cystic fibrosis has been established. It is expected that preliminary data offering full analysis relating to median survival here will be available by the third quarter of 2009.

The Minister is conscious that further improvements are required, including the need to develop community outreach services to facilitate the treatment of patients outside of a hospital setting, where appropriate. Taken together, the planned developments represent a tangible improvement in the quality of services for people with cystic fibrosis.

I emphasise that the capital programme, as promised, is still on the agenda and further clarity will be available after Tuesday next.

Mary White (Fianna Fail)
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I thank the Minister of State. We shall wait optimistically and hope there will be funding to continue.