Mary Harney (Dublin Mid West, Progressive Democrats)

I move amendment No. 1:

To delete all words after "That" and substitute the following:

"Dáil Éireann welcomes:

— the strong policy priority that has consistently been given by the Government in recent years to the development of services for persons with cystic fibrosis in Ireland;

— the fact that building of the ward unit at St. Vincent's Hospital, including dedicated facilities for persons with cystic fibrosis, will commence within the next nine months and will be operational as early as possible in 2011;

— the related investments made to date at St Vincent's Hospital, as the national adult tertiary centre for the provision of cystic fibrosis services, involving the recruitment of 19 additional staff and the significant improvement to the physical infrastructure of the hospital, including the provision of eight dedicated single en suite rooms and improved ambulatory care facilities;

— the provision of additional operational funding of some €8.4m since 2006 for the development of cystic fibrosis services nationally, and the additional improvements that have been put in place in other adult and paediatric hospitals;

— the recruitment of an additional 48 staff since 2006, including additional consultants, nurses and health and social care professionals, to this service;

— the expert advice being given on how best to implement a national screening programme for cystic fibrosis in newborns; and

— the cystic fibrosis register that the HSE has established to record data in relation to the incidence, treatments and outcomes for persons with cystic fibrosis which will allow, for the first time, for meaningful comparisons to be made with other jurisdictions."

I wish to share time with Deputies Grealish and Ó Fearghaíl. I do not, as a matter of course, take shots at the Opposition in these debates because they are much too important. However, I will not take a lecture of the kind Deputy Shatter, a man who had the most astounding things to say about the shocking slaughter of women and children in Palestine only a few months ago, sought to give us.

The sole reason the project we are discussing was delayed and could not go to tender during the latter part of last year was an eight month delay in the design caused by engagement with the architect for the cystic fibrosis community. It was never the case that the project would not proceed.

I do not accept the analysis that a guarantee from the Government to pay a construction firm would not be attractive to the construction industry as the information available to me is very different. A Government guarantee to pay for a project is as good as money in the bank. Clearly, the project will have to be financed but not notwithstanding the current banking difficulties, there is no question that a bank would not forward money on the basis of a Government guarantee to pay on delivery. Many projects in the private sector are delivered precisely in this manner, with payment made on delivery of the project rather than in a staged manner, which has been the approach traditionally adopted by the State.

I welcome the opportunity to respond to the Fine Gael Party motion, particularly to set out for the House the significant progress made in recent years in developing services for people with cystic fibrosis across the country. I am acutely aware of the challenges that people with cystic fibrosis and their families face in managing their condition. It is very much with this in mind that I have prioritised, not only this week but since 2006, the development of services for people with cystic fibrosis. The focus has been twofold, namely, increasing staffing levels in treatment units across the country and developing and modernising our hospital facilities in order that patients requiring admission can be treated in the best possible environment.

I accept that further improvements are required, particularly at St. Vincent's Hospital which is the adult specialist centre for the treatment of cystic fibrosis. This project was always a priority for the Government and has never ceased to be a priority. No decision was taken by the HSE at any stage to halt or delay it. When it emerged that the timing of capital payments for the project could be an issue, I took immediate steps to ensure it would proceed.

To be fair to the HSE, the organisation's capital budget was substantially cut due to the deterioration in the public finances. With a few minor exceptions, other than contractual arrangements, it did not have sufficient money in its 2010 capital programme to pay for the project. For this reason, we explored the possibility of ensuring the facility could come on-stream in the manner that has since been agreed.

I am very pleased that a focused team of people from the HSE, led by Mr. Brian Gilroy, St. Vincent's Hospital and the Department of Health and Children has come forward with a pragmatic solution to the issue which will allow the project to proceed. In the current challenging economic environment, there will be a keen interest from construction firms in every new project, particularly a valuable one such as this involving a high level of engineering and construction skills. The State is also in a position to achieve great value for money in the current circumstances, as has been acknowledged.

I am confident that the range of developments and improvements which I will outline to the House today will further demonstrate the ongoing commitment of the Government to the delivery of a safer and more appropriate service for people with cystic fibrosis. Cystic fibrosis is an inherited chronic disorder which affects the lungs and digestion of food, leading to frequent chest infections and undernutrition. As Dr. Ron Pollock pointed out in his 2005 report on the treatment of cystic fibrosis in Ireland, "it is the commonest lethal genetic condition in Caucasian populations and Ireland has the highest birth incidence of Cystic Fibrosis in the world." The condition affects many body functions and becomes more severe with age. Males and females are affected in equal measure.

The latest available data indicates that there are 1,161 people with cystic fibrosis living in the Republic of Ireland who are in receipt of hospital services. Approximately 52% of this group are adults and 48% are children. Life expectancy has increased steadily over the past 20 years and continues to improve as new and improved treatments are developed. The oldest person on the registry is 59 years of age and 35 people with cystic fibrosis in Ireland are more than 40 years of age.

Dr. Pollock's report also stated:

Comparison of survival between countries is complicated by the absence of a European Registry recording individual age and vital statistical data for all cases...However, trends in survival may be inferred from the trends in median age at death...Clearly caution has to be exhibited in interpretation...nevertheless Ireland displays a very much higher number of deaths than does England and Wales, and the same is true for the comparison with Northern Ireland.

It was unfortunate that the only information available had to be treated with caution. In effect, there has been an absence of the detailed robust statistics, such as those used in cancer, that are necessary for cross-country comparisons, not only in Ireland. I am pleased we have started to address this matter. An independent registry for cystic fibrosis, funded by the State, has been established which will help us make such international comparisons over time. The registry has been funded annually by the HSE since 2006 and is now in a position to produce relevant data on more than 85% of people with cystic fibrosis. The average enrolment of people with cystic fibrosis in other country registries is approximately 80%. The registry has advised in its most recent annual report that there are insufficient years of Irish data to generate life expectancy and survival curves and, therefore, full comparison with other countries is not yet possible. It is expected that preliminary data will however become available later this year.

The report by Dr. Pollock has been a valuable input into the development of services for people with cystic fibrosis in Ireland. The Government provided additional revenue funding to the HSE of €6.78 million in 2006 and 2007 to develop services. A further €1.6 million has been provided in 2009, including provision for the introduction of a screening programme for newborns. The investment to date has facilitated the recruitment of 48 additional staff, including consultants, nursing and allied health professionals across a number of hospitals. These are as follows: St. Vincent's Hospital; Beaumont Hospital; Temple Street Hospital; Our Lady's Children's Hospital, Crumlin; Cork University Hospital; University College Hospital, Galway; the Mid-West Regional Hospital, Limerick; Adelaide Meath and National Children's Hospital, Tallaght; Our Lady of Lourdes, Drogheda; and Waterford Regional Hospital.

St. Vincent's University Hospital is the national tertiary centre for the treatment of adults with cystic fibrosis. We have allocated additional revenue funding of more than €1.3 million to the hospital since 2006 to support the development of services for cystic fibrosis patients. This additional funding has facilitated the recruitment of 19 additional staff to date. In addition, the physical infrastructure has been significantly enhanced through a series of developments, including the refurbishment last year of accommodation to provide eight single en suite rooms for the exclusive use of people with cystic fibrosis.

Furthermore, the first phase of the overall hospital redevelopment, which has been completed, includes a new ambulatory care centre. This facility includes dedicated accommodation which is used for the care of cystic fibrosis patients who do not require admission. The unit allows for appropriate segregation of patients to ensure improved infection control.

The new accident and emergency department at St. Vincent's Hospital also includes single room accommodation which may from time to time be used for the care of cystic fibrosis patients under the specialist team. St. Camillus's ward was also fully refurbished and redesignated to provide 15 additional respiratory beds. In total, 63 beds at St. Vincent's Hospital are used for respiratory or cystic fibrosis services.

The next stage in the development of St. Vincent's Hospital will involve the building of a new ward block to replace existing accommodation. The new facility will consist exclusively of single rooms for inpatients. The facilities required for the cystic fibrosis community will be a decision for the medical team at the hospital to make from time to time. The provision of en suite, single rooms for inpatients is the hospital of the future. The new facility will include appropriate isolation facilities and accommodation for cystic fibrosis patients as required.

I am pleased we have found a way to allow the project to proceed to tender so that it can be operational as early as possible in 2011. The project will proceed on the basis that payment to the contractor will be made at the end of the construction phase. This is a different way of funding the project as it involves the construction company financing the development up to the final phase of construction. The method previously envisaged for this project would have involved staged payments throughout the construction period. This represents a genuinely innovative way to deliver the project. In the current challenging environment we need to find new solutions and devise new ways of progressing important projects such as this. This is one of them. The project has been always a priority for me. I now want to see it progressing with the urgency that is required.

The HSE is also working with St. Vincent's to identify opportunities for patients who do not require tertiary level care to be treated closer to home. Arising from the significant regional investment made since 2006, patients can increasingly avail of services at local level. This should help to reduce the level of demand at St Vincent's, and ensure the hospital can focus increasingly on the provision of highly specialised tertiary level care. The Government has also supported a range of other important measures to improve the quality of services for people with cystic fibrosis. These include screening and the establishment of the national heart and lung transplant programme at the Mater Hospital.

The HSE's expert advisory group on children and families has produced a very useful draft policy document on the introduction of a cystic fibrosis screening programme. Its recommendations include the establishment of a steering group to oversee its implementation and to ensure coherence with the development of other relevant services. The steering group is to be established later this year and will oversee the roll out of the screening programme. Funding for the introduction of the screening programme for newborns has been set aside in the 2009 service plan and will begin this year.

The national heart and lung transplant programme at the Mater Hospital has been in place for a number of years. The programme services patients with a variety of conditions, including cystic fibrosis. Ireland also has a formal agreement with Freeman Hospital in Newcastle for heart and lung transplantation procedures. Regarding organ donations, the protocol is that all heart and lung donor organs are first offered to the transplant unit at the Mater Hospital. If these organs cannot be utilised by the Mater Hospital, the national co-ordinators notify the Freeman Hospital as appropriate.

The first patient with cystic fibrosis received a transplant in the Mater Hospital in 2007. It is well documented that finding suitable donors for cystic fibrosis patients can be very challenging. There are stringent clinical criteria for the acceptability of organs for heart and lung patients, in particular for young patients. The particular challenge for Ireland and the UK is the availability of good quality double lungs. This is supported by the small number of patients with cystic fibrosis who are transplanted overall. The HSE aims to optimise donation and recovery to ensure that programmes like the national heart and lung transplant service continue to expand and meet the needs of our patient population.

The developments I described are comprehensive, important and represent tangible evidence of the commitment shown by the Government to improving services for cystic fibrosis patients right across the country. I am conscious that further improvements are required, including the need to develop community outreach services and to facilitate the treatment of patients outside the hospital setting where appropriate. Taken together, the developments that have already taken place and the developments currently at planning stage represent a significant improvement in a three year period in the quality of services for people with cystic fibrosis.

See this speech in context