Dáil Éireann debate -
Wednesday, 7 Jul 2010

Vol. 715 No. 1

Cystic Fibrosis Services: Statements

Minister for Health and Children (Deputy Mary Harney)

I am delighted to have the opportunity to debate the significant progress we have made in Ireland in the development of cystic fibrosis, CF, services. As Minister, I am more than aware of the challenges faced by CF patients in managing their condition. CF is an inherited chronic disorder. We have a high incidence of the disease in Ireland relative to other European countries because of genetic factors. Now that we have funded a CF registry, we are in position to know how many people are availing of hospital services. The data suggest there are 1,159 CF patients, 48% of whom are children. The registry will allow us to review trends in the State and compare them with international data in the years ahead.

CF affects the lungs and digestive system and leads to frequent chest infections and under nutrition. That is why CF patients, in particular, are frequent users of hospital services. I am pleased that over the past number of years, on foot of the Pollock report, which was commissioned by the Cystic Fibrosis Association, and the HSE's own multidisciplinary report, we have greatly enhanced services for patients. I was happy recently to meet representatives of the association, including parents and family members of patients from the mid-west, together with their clinicians, who acknowledged the significant progress we have made.

In 2006-07, for example, we allocated an additional €6.78 million and, in 2009, €1.6 million. The initial tranche provided for the recruitment and the HSE is in the process of recruiting another 32 staff, which will bring the increased number of staff, including nurses, consultants and allied health professionals, to 84. I have also introduced the newborn screening programme under Professor Loftus, a paediatrician, from University College Hospital Galway. As well as enhancing services at tertiary level, the HSE is working with St. Vincent's Hospital, Dublin, to roll out services in Limerick, Waterford, Temple Street Hospital, Beaumont Hospital and elsewhere in order that there will be regional supports and not just services at the national tertiary centre in St. Vincent's Hospital.

The focus of this debate has been the need for additional suitable accommodation for patients at the national tertiary centre. Under phase 1 of the development at St. Vincent's hospital, the new accident and emergency department has single en suite rooms suitable for cystic fibrosis, CF, and other patients who require isolation. There is also the ambulatory care centre, which is used for patients who do not require inpatient activity.

The main project that will greatly enhance the hospital facilities for the patients is the new 100 bed block at St. Vincent's, phase 2 of the development. Last year, we approved the funding for that. It was a new innovative way of funding whereby the developer would source the bridging finance and be paid on construction. We did that for a number of reasons but mainly because of the pressure on the public capital programme in the health area. Projects are funded in this way in other areas and in other countries. Obviously, a public procurement process is required. It is not only desirable, but is necessary under EU law because of the scale and the money involved. That process led to a preferred bidder being identified but the bidder was not in a position to finance the project.

However, as part of the tendering process a letter of intent has been sent to a preferred bidder and that bidder has 30 days to respond. St. Vincent's hospital, which has been meticulous in the manner in which it has conducted this public tender process, is confident that the bidder will be in a position to finance and begin the construction. The site has been cleared and the construction period is 18 months. I look forward to the bidder being in a position to proceed with construction as quickly as possible.

Deputies will be aware that eight single rooms were provided at St. Vincent's hospital, and St. Camillus's ward was also refurbished for respiratory patients. St. Vincent's hospital now has approximately 65 beds which are used for respiratory patients, including cystic fibrosis patients, who require isolation. The new facilities at the hospital will have en suite accommodation as well as a ten-bed treatment room for treatment, which will also have sanitary en suite services.

All sides of the House wish to have this project completed as soon as possible, but everybody will acknowledge, as the Cystic Fibrosis Association of Ireland has acknowledged, that we have made great progress in the provision of additional resources since the Pollock report in 2006. The 2006, 2007 and 2009 funding for the HSE provided substantial additional funding, and a sum of €1.6 million was provided for the refurbishment of the current single rooms at St. Vincent's hospital. That is not in itself sufficient as we need the 100 beds. I am very committed to making it happen. It is a priority for funding but, unfortunately, the delay occurred due to the prevailing circumstances in the construction industry. It was not an option for St. Vincent's Hospital or the HSE not to follow meticulously the public procurement process. Failure to follow it could have led to serious legal implications. The process must be followed.

There has been much speculation as to why particular bidders might have been selected. However, the process must be followed not just in spirit, but also legally to ensure that the public procurement is an honest and appropriate evaluation. I believe the letter of intent which has been issued will deliver a developer who will construct the facility in the 18 months it is anticipated will be required.

Deputy James Reilly

I thank the Minister for coming to the House at this late hour. We again find ourselves in a situation where promises were made but were not kept. There can be all the excuses in the world but the reality for the patients is that they will continue to suffer.

In April 2009, Fine Gael brought forward a Private Members' motion seeking the construction of the cystic fibrosis unit at St. Vincent's hospital. At that time, the Minister, Deputy Mary Harney promised the building of the unit at St. Vincent's hospital would commence "within the next nine months", that a Government guarantee to pay for a project on completion was "as good as money in the bank" and would be attractive to the construction industry, and that while the project would have to be financed, notwithstanding the current banking difficulties there was "no question that a bank would not forward money on the basis of a Government guarantee". The reality now appears very different. The original preferred bidder has claimed difficulty getting finance for the development, has suggested the deferred payment nature of the tender was unusual, which did not allow them enough time to raise funds, and that the hospital took four months to respond to the original tenders.

It is sadly now the case that, far from building starting within nine months of the motion, as the Minister promised, 15 months later a contract has not even been signed. It can never be forgotten that cystic fibrosis patients are fighting for their lives and in this country they are losing that fight ten years earlier than their counterparts over the Border. They do not have time for broken promises. If the Minister, Deputy Harney, meant what she said in April 2009, why did she not make it happen? Instead she handed it over to the bureaucratic nightmare that is the HSE. Bureaucracy does not care. The Minister's litany of broken promises about this unit over the last number of years is yet further evidence that she shirks her responsibility on an ongoing basis while patients suffer the consequences. It gives me no pleasure to say that.

Deputy Mary Harney

It is unusual if the Deputy does not. He always says it.

Deputy James Reilly

I do not. I did not say it earlier today either.

Deputy Mary Harney

He said it three times today.

An Leas-Cheann Comhairle

Deputy Reilly without interruption.

Deputy James Reilly

The Minister will always fight her corner, but the people who have to suffer the consequences know the reality.

The Cystic Fibrosis Association of Ireland, CFAI, is seriously concerned about the impact the moratorium on recruitment and the HSE budget constraints are having on front line services. Key multidisciplinary cystic fibrosis staff such as physiotherapists, social workers and psychologists are not being replaced when they go on maternity or sick leave. With regard to Mid-Western Regional Hospital in Limerick, on 26 May the CFAI wrote to the hospital management to express its concern about the lack of physiotherapy cover for child CF patients at the hospital. The paediatric cystic fibrosis physiotherapist at the hospital is on sick leave at present and is unlikely to return in the near future. In the meantime, there is no CF specialist physiotherapist.

The Minister will be aware that the absence of a CF physiotherapist at the hospital will have a damaging impact on the health of the 75 CF children that attend the outpatient centre. Physiotherapists are absolutely essential for the treatment of cystic fibrosis and the removal of mucus from the lungs of CF patients. Of the 75 children, five are acutely unwell and are in immediate need of intensive physiotherapy. The physiotherapist has not been replaced and the CFAI is not satisfied with the response received to date. How could it be? Overall, the CFAI is extremely concerned about the cumulative effect the embargo on recruitment is having on the delivery CF services. When will the physiotherapist be replaced in Limerick?

Early detection and treatment of CF is essential in improving the life expectancy of CF patients. A working group, established in 1999, reported in 2004 about the extension of newborn screening to include CF, but nothing happened until 2009. In May 2009, at the CFAI annual conference in Cork, the Minister for Foreign Affairs, Deputy Micheál Martin, announced that the newborn screening of people with CF would commence in July 2010. Since the announcement the CFAI has played an active role in participating in the steering group, which was established to advise on the extension and integration of CF screening. The introduction of CF screening for newborns has been long expected and long delayed. It has been introduced practically everywhere else in Europe but not here. Given the fact that we have missed the July deadline, will the Minister reassure patients that it will be introduced in 2010? Will the moratorium on recruitment impact on the recruitment of the necessary staff for the roll-out of neo-natal screening?

The number of organ donations and transplants has grown steadily across the EU and thousands of lives are saved every year through this medical procedure. The situation, however, is very different in Ireland. Only four double lung transplants were carried out in the Mater hospital over the past two years, despite the fact that 30 CP; patients are waiting for double lung transplants in Ireland at present, with a further 20 people waiting for single lung transplants. The rate of double and single lung transplants compares very badly to that of kidney and liver transplants. The problem is not that we have insufficient organs but rather the time gap between the harvesting of organs and the way they are subsequently used.

In its 2010 national service plan, the HSE states it will establish an organ donation and transplantation unit within existing resources in 2010. Given that we are half way through 2010, can the Minister provide information on the status of this unit? Furthermore, there is no mention of the human tissue Bill, which has been languishing in the Oireachtas for some time now. At the moment it is number 65 on the Government legislative programme list. The Cystic Fibrosis Association of Ireland is actively campaigning for the rapid enactment of the human tissue Bill and to appoint two dedicated lung transplant surgeons as a matter of urgency — Mr. Freddie Wood has recently retired from the Mater hospital — and for a national transplant office and associated team of transplant co-ordinators, consistent with good international practice.

Much of the media coverage in recent times has focused on the need for the development of cystic fibrosis services within Dublin. However, we must not forget the need to improve cystic fibrosis facilities outside of Dublin. Deputy Coveney is familiar with the great fundraising efforts in the south which have funded two rooms for cystic fibrosis treatment but I question whether they are getting support from the HSE. In Waterford, a cystic fibrosis consultant for adults has been appointed but he does not have a consulting room which means he can only treat adult patients in a ward. It is clearly a terrible waste of a very expensive resource when the necessary tools to do the job are not provided. How will the reduction in the capital budget affect the development of cystic fibrosis facilities nationwide?

The reality for patients is still quite stark. Ms Orla Tinsley spoke on the radio recently and she spoke to me tonight from her hospital bed. She was admitted to a ward with five other patients for a period of five days with only one nurse, usually an agency nurse, who knew little about the ward and even less about cystic fibrosis. She was transferred to a semi-private room five days later. The other patient became quite confused at night and Ms Tinsley regularly woke to find this lady standing at her bed. I heard her interview and she certainly held no grudge against the lady sharing her room. The reality for Ms Tinsley is that as a sick person any infection further damages her lungs and reduces her life expectancy. She needs her rest and she needs to be assured she will not be exposed to infection unnecessarily. We all know that this is the primary reason we have such poor outcomes for cystic fibrosis patients while their cousins across the Border live ten years longer. After a number of nights, she was forced to ask her mother to mind her at night.

I hope this time the promise will bear fruit and no matter what the obstacles, rather than leaving it to bureaucracy to sort it out, the Minister will take a personal interest and make this a reality for the people who are struggling to prolong their lives. I inform the Minister that four friends of Orla Tinsley have died in the past 18 months.

Deputy Jan O’Sullivan

I wish to share my time with Deputy Mary Upton, with the permission of the House.

An Leas-Cheann Comhairle

Agreed.

Deputy Jan O’Sullivan

I wish to address the specific issue of St. Vincent's hospital. The second tenderer is already constructing something else on the site. We all hope that this will have a satisfactory conclusion. It is extremely important for these patients that this unit is developed as quickly as possible.

I refer to a reply we received on 18 May with regard to this issue. The estimated construction, equipping and commissioning time is still approximately 18 months. I ask the Minister to clarify if it will take that long once the tender has been accepted.

I put in a plea in the meantime for a better arrangement than the one described by Orla Tinsley so well. Some effort should be made to isolate these patients or at least to treat them in wards where they will not be open to infection. It should be arranged that they do not have to be admitted to hospital through the accident and emergency department. There has to be a system whereby they can be referred directly to hospital without having to expose themselves to infection.

I refer to a letter I received from a person in County Donegal who had a lung transplant 18 years ago and who has written a long letter in which he makes suggestions from the perspective of the patient. Some of these suggestions are very simple.

We are all aware that with cystic fibrosis when antibiotics and home treatment fail, it is normally a trip to the hospital. In many cases this will be a local general hospital and a long wait in a busy accident and emergency unit. This can be a disaster for such patients.

What needs to happen is that after the family doctor sees the patient he should be able to write out a letter of admission and on the strength of such a note, patients, especially with cystic fibrosis, should be sent straight to a ward.

That is a very simple plea from somebody who has experienced this. This person is obviously a long distance from access to centralised services. He also makes a plea that assessments should be done much earlier for those going on transplant lists. He suggests this would be a very positive development from the point of view of having successful outcomes. The isolation unit is needed but there are many other practical things that can be done to help people who are gong into hospitals around the country.

I received a detailed reply this time last year referring to proposed developments in Waterford, St. Vincent's hospital, Beaumont hospital, Temple Street hospital, Cork University Hospital, Galway and a four-bedded isolation facility for the in-patient accommodation of children with cystic fibrosis to be advanced in Our Lady's Hospital for Sick Children in Crumlin, with the support of charitable funding. Will the Minister say if this has been developed and if there is progress to report regarding the other issues around the country?

Deputy Reilly has raised the issue of the paediatric physiotherapist in Limerick who was not replaced and the 70 children who need that service in the mid-west region. It is vital that these patients receive the treatment they require as it is literally a matter of life and death. It is well recorded that the life span of patients with cystic fibrosis here is very much below par when compared with other countries. I welcome the debate as it is an opportunity for us to raise these important issues. These patients need positive and practical responses and they need isolation units and access to organ transplants. Where they are dispersed around the country, they should be afforded the best possible opportunity to have the appropriate treatment.

Deputy Mary Upton

I thank Deputy O'Sullivan for sharing her time. I welcome the opportunity to speak briefly on this debate this evening. I should declare a personal interest in this subject as I have followed the issue over many years both inside and outside the House. It is extremely disappointing that once again the provision of dedicated facilities in St. Vincent's has been put on the back burner. I hope the commitment given by the Minister this evening about the timescale for the second bidder will take place within the timeframe she has indicated. However, it seems that a personalised battle has to be fought every step of the way for the provision of services and facilities that should have been in place a long time ago. It is not good enough that CF patients, who are already fragile, should have to take to the airwaves to get recognition for their very basic rights. I acknowledge once again the commitment and very hard work of Orla Tinsley. I do not know where the CF situation would be without her commitment and her dedication. She has fought the battle for herself and for her colleagues for a long time.

It is unacceptable that by being born on one side of the Border in this small country, one's life expectancy can be reduced by up to ten years. The climate is the same, the level of skills and expertise of the various medical teams are the same but it is simply down to the provision of a service. In simple terms this means that the funding and facilities are available in one part of the country, in Northern Ireland, and not in this jurisdiction. The difference can be measured in life expectancy terms averaging ten years.

Cystic fibrosis is a genetic disease and it does not go away. Up to 30 young people are now waiting for a lung transplant as their passport to a better and longer life. They are walking a fine line between being ill enough to need a transplant and well enough to receive it. It beggars belief that only four cystic fibrosis transplants have been carried out at the Mater Hospital in a facility that has cost a small fortune to install, and which has been in place for many years. There are questions to be answered on the low level of provision of lung transplants at this unit.

Where is the human tissue Bill? I was told by the Taoiseach this morning that no date has been set for its publication. Why does Ireland not have a dedicated office of a transplant co-ordinator? There is clear evidence from other European countries, and Spain in particular where the number of transplants is substantially higher than other countries, that this is down to good co-ordination of the transplant process. We have listened endlessly to debates about cystic fibrosis and the need for the office of national co-ordination of transplants. For those on the cystic fibrosis waiting list, it must sound like they are living in a parallel universe. Has our sense of priority totally deserted us? We need that office and it would substantially alleviate the many sensitive personal and medical issues surrounding donation and transplantation of organs. The generosity and bravery of those families who decide to allow the donation of a relative's organs for transplantation must be acknowledged during what must be a traumatic time for them. That generosity must be matched by the provision of the support services required to ensure the optimum level of successful transplants take place following the donation of organs. That is not happening in this country and it is a crying shame.

Why are cystic fibrosis patients not provided with the best possible health care needed for their well being? Deputy Jan O'Sullivan indicated a number of small steps that can be taken to help. Why are cystic fibrosis patients allowed to suffer in fear of not being suitable for a transplant because of the totally unacceptable time lag before they are offered a transplant? Why is their quality of life compromised every single day because of the lack of suitable facilities?

Why are cystic fibrosis nurses not replaced as a mater of routine when, for example, one is out on maternity leave? The Limerick physiotherapy situation has already been mentioned. We are behaving like a Third World country when it comes to provision of services and facilities for cystic fibrosis patients. The time has come to put the priorities of our children and young adults ahead of trophy legislation, which is simply politically driven and has little resonance for those whose lives are put at risk every day they are in shared facilities, often with patients who suffer from chest infections, who are incontinent and who, through no fault of their own, are a vehicle for serious bugs that are putting at risk the lives of the compromised cystic fibrosis patients.

Some political promises can be broken and the consequences are not particularly significant. The promise to provide a modern, appropriate and safe environment for very vulnerable cystic fibrosis patients is not one that can be ignored or dismissed. Nor can the legislation needed to ensure transplant opportunities are optimised be sidelined and relegated to the back benches of our legislative programme. It is high time to start delivering on the promises to patients, who are often hanging by a thread, and for whom every day in a compromised environment is literally putting their lives at risk.

I do not want to be totally negative because I acknowledge the many positive developments that have taken place in the 30 years since I first became interested in this topic. We are seriously lagging behind her European and North American counterparts. It is down to the provision of facilities.

Deputy Caoimhghín Ó Caoláin

It is almost unbelievable that yet again we have to raise as a matter of urgency the desperate plight of cystic fibrosis sufferers in Ireland. It is disgraceful that we can only give voice to their urgent need some 35 minutes to midnight in the dying hours of this Dáil session. There are fewer than 2,000 cystic fibrosis sufferers in this country yet they suffer from a desperately serious condition and they have been treated appallingly by successive Governments. There is no excuse for this and the present Government should hang its head in shame.

In 2008, after a campaign by the Cystic Fibrosis Association of Ireland, the Minister for Health and Children, Deputy Harney, the Department of Health and Children and the HSE publicly committed to a 34-bed inpatient cystic fibrosis unit at St. Vincent's Hospital, Dublin and promised that the adjoining cystic fibrosis day care facility with ensuite day care bedrooms would be operational by 2010. The proposed cystic fibrosis unit was to be part of a 120 bed multi-story development, to include the 34 bed in-patient cystic fibrosis unit and a separate floor for the day care centre encompassing eight single ensuite day care bedrooms. Contracts were signed with a project manager for the development project and there were a number of meetings with the appointed architects. Management at St. Vincent's gave the project very high priority and full planning permission was granted, with an expected completion time of the end of 2010.

In the meantime the HSE and Department of Health and Children agreed to provide 14 interim ensuite rooms. In August 2008, eight of these rooms became operational. In March 2009 there was a postponement of the promised development. The HSE said it would not have funds to begin construction of the new block at St. Vincent's until 2011 at the earliest. The Minister then said developers would be asked to tender for the project on the understanding that they would not be paid any money until it was completed. In July last year, St. Vincent's confirmed a number of builders had tendered to construct the new facilities and it aimed to appoint a firm to take on the job in October or November 2009. Now the plan has been thrown into chaos again. It was revealed on 23 June that no tender has yet been awarded to any firm to construct the new €40 million unit. The lowest bidder, Michael McNamara & Company, has stated that St. Vincent's only issued it with a letter signalling its intention to award it the contract on 23 April last. The company said in a statement: "This was some four months after the tender was submitted, therefore the main delay in the process of appointing a contractor has been on the part of the client." We are told Michael McNamara & Company had difficulty getting financial backing to proceed with the project and the company was advised by the hospital that it was moving on to discuss the project with the second lowest bidder.

Delay has been piled upon delay and cystic fibrosis sufferers continue to be deprived of the single rooms and other facilities they so desperately need. It matters little who is responsible for the dispute between the hospital and the developer. Ultimate responsibility belongs at the door of the Minister for Health and Children and her Fianna Fáil-Green Party Government colleagues. The Minister made a definite commitment and it has not been fulfilled. A cohort of our fellow citizens have a limited life expectancy and a number have passed on, all too sadly.

Shameful is the only way to describe this situation. The population with cystic fibrosis is relatively small. Ireland has the highest prevalence of cystic fibrosis in the world and we have the most severe types of cystic fibrosis in the world. As the Cystic Fibrosis Association of Ireland has repeatedly pointed out, Ireland has the poorest resources for cystic fibrosis patients in Europe. In comparative terms, we are not talking about a hugely elaborate and expensive development. Many private hospitals and clinics, luxury hotels, clubs and leisure facilities of all kinds were built in this country during the Celtic tiger years with massive Government tax breaks. We are talking about many multiples of the cost of the unit at St. Vincent's expended on these tax breaks, literally untold tens of millions because the Government never properly accounted for the money lost to the Exchequer. The Government always refused to look into the question that many Members put time after time.

Against that background we have the ongoing shameful neglect of cystic fibrosis sufferers. It is a terrible judgment on the inability of the Government to make a firm commitment to these very ill and vulnerable people, to follow through on that commitment and to get the desired result. Regrettably, that failure on the part of the Government reflects very badly in the public eye on all who hold elected positions here. It places a question mark over the capacity of these institutions to serve the citizens who elect Members to this House to serve them and this must not be forgotten. I heard the Minister's latest pledge on this issue at the conclusion of her contribution here. She simply must accept that Members will remain sceptical. While it is all very well to make commitments or to state the wheels are in motion once again, delivery is required, as is the evidence that works are ready and are getting under way. Nothing else will assuage Members' fears that they are poised to see a further repeat of all the problems that too sadly have been repeated already in this sad saga.

I make no apology for once again using this opportunity to call on the Government before the Dáil rises for the summer recess tomorrow to sort out this mess and to intervene directly now. This should not be done from a distance or by checking with someone in the HSE, but by taking ministerial responsibility and collective Cabinet responsibility to ensure these facilities are built and are up and running. That is how important this issue is. There can be no contemplation of any further excuses on this matter. It is a case of the Minister simply doing it.

Deputy Finian McGrath

I wish to share time with Deputy Maureen O'Sullivan. I thank the Ceann Comhairle for the opportunity to speak on this urgent debate on cystic fibrosis and I welcome the Minister's presence in the Chamber at this late hour.

I call on the Minister for Health and Children, the HSE and the Government to move now on the cystic fibrosis unit at St. Vincent's Hospital. It is time to end the talk on stags and greyhounds and to get on with the real issues, such as cystic fibrosis and services for people with disabilities. If it is possible to deliver the new €3.6 million cystic fibrosis unit at Beaumont Hospital by 26 July 2010, there is no reason not to be able to get under way the €20 million project at St. Vincent's Hospital and to have it built by 2011. It is criminal still to have cystic fibrosis patients in wards and accident and emergency units dealing with cross-infections, when they urgently need rooms with bathroom en suite. There should be no more talk or waffle. The unit should be built.

I focus on the urgent need for a 34-bed unit with en suite bathrooms for cystic fibrosis patients. In particular, I am frustrated about the delays and cock-ups associated with this project. I am not interested in any bureaucratic nonsense between the Minister, the HSE, the Department, hospital management and the developers. My agenda is action and delivery for the cystic fibrosis patients and their families. Tonight, I urge the Minister and the Government to get on with it and to do it now. I note the original cost for this new hospital section was estimated to be approximately €30 million to €34 million, while the estimated cost now has fallen to approximately €20 million. In other words, it will be developed for €12 million less than was originally planned. This is not to state that money should ever be an issue on this important matter but that in the current economic climate, the cystic fibrosis unit is value for money. It is good for the patients, their families, the hospital, its other patients and its staff but above all, it gives cystic fibrosis patients a better chance in their lives. There has been enough talk and old guff and it now is time to build the unit.

Another important issue in this debate concerns the urgent need to retain 34 bedrooms with bathrooms en suite for a proper cystic fibrosis unit at the hospital. This always was the plan and the vision. I have raised this matter in the House many times but have concerns that certain senior people within the HSE and the Department of Health and Children may have another agenda. Consequently, I urge caution on this matter and ask that they accept the principle of a 34-bed unit. I base this on the best international practice. Approximately 340 cystic fibrosis patients use St. Vincent’s Hospital regularly of whom approximately 10%, or 34 patients, require a bed each day. This is the reason a 34-bed unit is needed at the hospital. This is about putting the patient first and trying to ensure a quality service in line with international best practice. The sad aspect of this project is that there has been too much talk and debate and not enough action. This is the reason I again urge movement soon in this regard.

It is not that people cannot do it. For example, Members should consider developments at Beaumont Hospital and the cystic fibrosis specialist centre for north Dublin. I commend Deputy Darragh O'Brien on his massive support while we fought for this centre in recent years. Beaumont Hospital will be the cystic fibrosis specialist centre for north Dublin adults and a referral point for patients with cystic fibrosis from throughout the north-eastern region. The Beaumont hospital cystic fibrosis multidisciplinary professional team will use the cystic fibrosis unit to provide long-term recurring support for ambulatory patients and their families and carers. The facility will be for the use of patients with cystic fibrosis and will have sufficient capacity, design features and specification to permit the implementation of best practices to minimise cross-infection. The project has been delivered with an allocation of €3.6 million. The cystic fibrosis unit at Beaumont Hospital is due for completion in the week commencing 12 July and the hospital is working towards a "go-live" date during the week commencing 26 July. This is an example of a project that is up and running for families. I am glad to have been associated with it for years. It is great to see it being delivered for cystic fibrosis patients on the north side of Dublin.

As for St. Vincent's Hospital, I urge the Minister to seriously push this agenda, as the cystic fibrosis patients cannot wait any longer. I urge the Minister to get on with the job, to build the cystic fibrosis unit at St. Vincent's Hospital and to roll out the other services nationwide. Cystic fibrosis patients are sick and tired of waiting. I commend great people, such as Charlie Gallagher, Gerry McElvaney and Orla Tinsley, as well as the Cystic Fibrosis Association of Ireland, for their great work, perseverance and dignity. I again urge the Minister to act on this matter.

Deputy Maureen O’Sullivan

I thank Deputy Finian McGrath for sharing time. I have no wish to repeat the obvious, which is the need for adequate and proper care for cystic fibrosis patients. Such care is long overdue and its lack has caused immense suffering to patients and their loved ones. The campaign in 2008-09 of the Cystic Fibrosis Association of Ireland, CFAI, was to ensure that the HSE lived up to its commitment to build the long-promised facility at St. Vincent's Hospital. This facility cannot be delayed any further. How can funding for life-saving services be delayed, withheld or allowed to become swamped in a dispute such as the recent one concerning a car park facility? In addition, life-saving devices and services should not be dependent on fundraising activities such as table quizzes or the CFAI's Buy a Brick fundraising venture.

There are more than 1,000 cystic fibrosis patients in Ireland. Ireland has the highest prevalence of cystic fibrosis in the world. Moreover, we have the most severe types and the largest proportion of families with more than one member with cystic fibrosis but yet, Ireland has the poorest resources for patients. I have read the graphic account of living with this illness as written, for example, by Orla Tinsley in recent years. I do not know how anyone, particularly those who work in the area or those in the HSE, can read these articles and not immediately take on board the issues and needs and then find the requisite resources. Ms Tinsley stated that people in Ireland die younger than in other countries because of the lack of proper standards of care by the HSE. Although she has won a number of awards for her campaigning, the best and most appropriate award would be to follow through on what is needed.

Members should imagine being afraid to go into hospital. Although successive reports have indicated the urgent need to provide simple single rooms with bathrooms en suite in a dedicated unit, cystic fibrosis patients still do not have this facility. Consequently, they are in a catch-22 situation wherein they need hospital care but such care is dangerous and even life-threatening because of the lack of proper facilities. I agree with Deputy Finian McGrath’s assertion that this is a national issue and not simply one for Dublin. In March 2010, Temple Street Children’s University Hospital officially opened a brand-new cystic fibrosis and respiratory outpatient unit at the hospital. The total cost was €3.2 million, €2.5 million of which was raised by donor support, corporate partnerships and intense fundraising. People with cystic fibrosis and their loved ones have enough of a battle on their hands in dealing with the illness without having to take on fundraising and media campaigns to highlight the lack of a need for proper care facilities.

I believe the Minister when she said she consistently emphasised the need to improve facilities and services to persons with cystic fibrosis. I call on the HSE to stop posturing and playing games and to do what is right and morally just and put the money where it is needed.

Minister for Health and Children (Deputy Mary Harney)

I wish to make clear — in case there is any doubt about it — my commitment to making this happen. Equally, we have a public procurement process. I say to Deputy Ó Caoláin that it is not appropriate, nor would it be lawful, for me to intervene personally. In fact, if he wants to have the issue tied up in the courts for the next number of years, then that is precisely what I should do.

Deputy Caoimhghín Ó Caoláin

That is nonsense.

Deputy Mary Harney

The tender was conducted by St. Vincent's hospital. I commended the hospital earlier on conducting that tender in a meticulous fashion. The Deputy does not need me to tell him that, because of the prevailing circumstances in the country both on the banking side and in construction, significant legal and other issues arose during the tender process. The hospital is confident that the bidder, which has been issued with a letter of intent a few days ago, and who has 30 days to respond, will give a positive response. The expected construction period is 18 months. I hope it will be shorter but that is what is anticipated. The site is clear. There are no site works to be carried out and work is ready to proceed as soon as the tender is awarded.

To be fair, I recently met with representatives of cystic fibrosis sufferers in the mid-west in my office in Dublin. They commended the fact that there had been a significant improvement in services, as the association has done. When we are discussing the issue, at least let us acknowledge that we have been able to greatly improve services in recent years. Deputy McGrath mentioned Beaumont Hospital and Deputy Maureen O'Sullivan mentioned the new facility in Temple Street. In addition, there is the interim facility in St. Vincent's which we constructed last year at a cost of €1.6 million both on the revenue side and for the eight beds, and the new ambulatory care facility at St. Vincent's which is used for patients who do not require admission.

Cystic fibrosis is an inherited chronic disorder and we have a higher incidence of it in this country than elsewhere. It is more severe here for genetic reasons. The registry which we are now funding, which was requested, will give fantastic data to be able to track improvements over time and to compare ourselves to other countries. Life expectancy for CF sufferers has increased enormously. I accept it is lower than in other countries but given the severity of the condition in this country, it will perhaps always be lower. Between 1980 and 1984 median life expectancy for men was 29.3 years and it was 22.9 years for women. In the next period, 1985 to 1994 it had increased to 42 years for men, an improvement of almost 13 years, and 37.4 years for women, an improvement of 15 years. We are making steady progress, including in terms of resources, but I accept we badly need the facility at St. Vincent's.

Unfortunately, I am not briefed at this hour of the night. I tried to use my mobile telephone to find out about the physiotherapist in Limerick. I will revert to the Deputy tomorrow. I was not aware of the case. When I met with the group recently, I do not remember that issue being mentioned. I met the consultant and parents and others. I will check the situation regarding that matter and revert to the Deputies tomorrow.

I had indicated before Deputy Reilly entered the Chamber that screening for newborns will commence this year. Professor Loftus has done a significant amount of work and the resources were provided to make that happen this year. The organ donation transplantation unit is being established this year. At the moment the clinical lead for that unit is being recruited. They are positive developments that will affect CF patients and other patients who are suitable for organ donation. Although organ donation in this country is high by international standards, the capacity to retrieve and use all the organs that are donated, other than kidneys, is not what it should be. All the advice I received and the number of conferences I have attended with interested parties would suggest that one needs key co-ordinators in emergency departments or in critical care departments around the country. It is clear that such co-ordination should be done by a national office, which is being established this year. Significant resources were invested in the establishment of the transplantation facility at the Mater hospital. Mr. Woods will be replaced. He is a key part of the surgical team in this city and in the country, working as he does in the Mater hospital and at Crumlin hospital. That process may be under way. If the recruitment process to succeed him is not under way, it will commence shortly.