Joint Committee on Health and Children debate -
Thursday, 13 Dec 2012

Cystic Fibrosis Unit: Discussion

Chairman

Arising from our meeting last week, there was a proposal from Senator van Turnhout that we would discuss current practice in relation to the cystic fibrosis unit at St. Vincent's Hospital. I welcome Professor Charles Gallagher, Mr. Gerry O'Dwyer, Mr. Nicholas Jermyn, Ms Martina Queally and Ms Mary Godfrey. Mr. Ray Mitchell from the HSE is also present. I remind members and people in the Visitors Gallery that mobile telephones should be turned off for the duration of the meeting as they interfere with the broadcasting equipment even when on silent mode.

By virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of the evidence they are to give this committee. If they are directed by the committee to cease giving evidence in relation to a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise nor make charges against any person or persons or entity by name or in such a way as to make him, her or it identifiable. Members of the committee are reminded of the long-standing parliamentary practice and rulings of the Chair to the effect that members should not comment on, criticise or make charges against a person or persons outside the House or an official either by name or in such a way as to make him or her identifiable.

We are in public session and the proceedings of the meeting are being televised. This is a very sensitive and important matter. I hope we will receive a full report from Mr. O'Dwyer and the other witnesses on the circumstances surrounding admission of cystic fibrosis, CF, patients in St. Vincent's Hospital and the actions taken by management of the hospital. Also, you might present an update on any clinical programmes on cystic fibrosis across the country. I invite Mr. Gerry O'Dwyer to open proceedings.

Mr. Gerry O'Dwyer

I thank the Chairman and the committee for the opportunity to discuss this issue.

Chairman

A copy of the presentation has been circulated to members.

Mr. Gerry O'Dwyer

With your permission, Chairman, I do not propose to go through the document in full because members will wish to ask many questions and we have a very big agenda.

At the outset, it is important to acknowledge that there have been a number of issues relating to St. Vincent's Hospital over the last number of weeks. We will address those issues today. My colleague, Professor Gallagher, will provide an update on the national clinical programmes and the work that is being undertaken in conjunction with Ms Mary Godfrey. Phenomenal work has been done over the past year and that will continue. Professor Gallagher will give a comprehensive update. It is important to watch the patient care pathway, which will assist in the patient's journey from diagnosis through to the necessary care. Mr. Jermyn, chief executive officer of St. Vincent's Hospital, will outline the issues that surfaced in the media and the representations that were made to Oireachtas Members about St. Vincent's Hospital.

I wish to reaffirm the HSE's commitment to working with the Cystic Fibrosis Association of Ireland and with the clinical programmes, as well as with St. Vincent's Hospital, to ensure a comprehensive, high quality care pathway is in place. The partnership approach we have taken to address the issues surrounding admission and discharge at St. Vincent's Hospital has been ongoing for the last couple of weeks. Hopefully, we will conclude our discussions with all parties by next Monday week. I will revert to the Chairman on that.

As members are aware, cystic fibrosis is the most common life threatening inherited disease, primarily affecting the lungs and digestive system. Ireland has one of the highest reported incidences of CF in the world. One in 19 of the Irish population is a carrier of the disease, and the incidence of CF in Ireland is almost four times the average rate in other European countries. At present, there are 1,136 individuals registered with CF in Ireland, of whom 594 are adults and 477 are children under the age of 18 years. The prevalence of the disease will increase as the rate of survival improves. While the number of children born with CF every year is anticipated to remain stable, the number of adults with CF is increasing. This results in increasing numbers of adults requiring health care services each year.

I wish to refer to newborn screening before handing over to Professor Gallagher to outline the excellent work that is taking place on the programmes. Then Mr. Jermyn will contribute, because it is important that people are reassured about the work being undertaken by the management of St. Vincent's Hospital. An important and significant issue is the screening of newborns for cystic fibrosis. This is covered on page 4 of the document given to members. This was introduced on 1 July 2011 and is an integral component of the newborn blood spot screening programme called NNBSP. It is anticipated that between 40 and 50 infants with cystic fibrosis will be identified each year. The introduction of the screening will result in earlier diagnosis and there are significant benefits for children and families as a consequence. Any infant who is identified as having a high risk of cystic fibrosis is referred to one of the six specialist centres - Cork University Hospital, the Mid-Western Regional Hospital in Limerick, University College Hospital Galway, the National Children's Hospital in Tallaght, Our Lady's Hospital for Sick Children in Crumlin and the Children's University Hospital in Temple Street. Babies diagnosed through newborn screening have improved nutrition, improved lung function and fewer admissions to hospitals. They require fewer antibiotics, which is really important, and have improved surival.

The rest of the report is in the submission. At this stage I will ask Professor Gallagher to give an outline of the programme. It has been a significant work in progress and it is important that members of the committee get an overview of it.

Professor Charles Gallagher

I appear before the committee as the clinical lead for cystic fibrosis nationally. In doing so I am really appearing on behalf of the CF carers of Ireland - the nurses, physiotherapists, dieticians, psychologists and doctors who are involved in CF care. I have the role of clinical lead for the HSE, but I appear on their behalf. I will give the committee a brief overview and I will be happy to address any questions or comments from members afterwards.

Members already have a very good summary of the national issue. There are approximately 1,150 people with cystic fibrosis in the Republic of Ireland. One in 19 of us carries the CF gene and roughly one in every 1,400 live births has cystic fibrosis. Those are the bare statistics, but they do not address the issue that for each person with cystic fibrosis there is a family and community affected by it. The good news story is that CF is changing. Twenty or 25 years ago cystic fibrosis was always a severe disease in childhood and very few people lived to adulthood. Things are changing. There are now slightly more adults than children with cystic fibrosis. In childhood cystic fibrosis is generally mild, with some exceptions. Most children are treated as outpatients, with intermittent hospital stays. However, once they reach the age of 18 to 20 years, the disease becomes somewhat more severe because they have had the disease for longer. I must emphasise that there are people in their 20s, 30s, 40s and 50s with cystic fibrosis. They are in every walk of life. Our oldest patients are in their 60s, so things are changing. However, that means the need for care is changing as well.

As people have the disease longer in adult life there is a greater focus on hospital care. We really have a partnership between the CF patient community, the CF carers whom I represent, the HSE, the hospitals and the Government. Things are moving on. There are a number of CF centres throughout the country and they are working in collaboration at all times. There are major centres around the country. The national adult centre is in St. Vincent's Hospital but there are also adult centres in Cork, in Limerick which caters for the Tipperary, Limerick and Clare area, and in Galway. In Dublin there is St. Vincent's Hospital and Beaumont Hospital. There are also other smaller centres. In paediatrics we have units in Cork University Hospital, Mid-Western Regional Hospital in Limerick, University College Hospital Galway, in Drogheda, Waterford and in hospitals in Dublin. All of these hospitals and centres work together.

The spectrum of care always encompasses outpatient care and inpatient care but the focus or balance changes.

As I mentioned, most of the care in childhood is on an outpatient basis, with little need for hospitalisation. However, as children reach adult life, the need for inpatient care increases. This is an international phenomenon. Ireland is not unique in this regard.

As I stated previously, Ireland has the greatest instance of cystic fibrosis in the world. For reasons that are not yet fully clear, Irish people also have the most severe cystic fibrosis in the world. When compared with the Six Counties, Canada, the United States or Europe, CF in Ireland is on average more severe. While this is not of itself a bad news story, it tells us that the need for care here is different. As I mentioned, there are currently people in this country with CF who are in their forties and fifties. We want them to live to be pensioners. I have told our geriatricians that I want to send people with cystic fibrosis on to them in the future. While this is not yet happening, it will happen.

Organisational care revolves around the CF centres throughout the country. We now have an efficient newborn screening programme which commenced last year and allows us to diagnose children at an early stage rather than waiting for symptoms to develop. We can now intervene at an earlier stage than we would have done ten or 15 years ago. This will in time result in improved outcomes for patients. Obviously, existing patients need the care delivered by the paediatric and adult centres throughout Ireland working together. As I mentioned, we have developed a partnership with patients and the patient organisations and work with the HSE, clinicians and CF teams around the country and hospital management to provide care for people with cystic fibrosis. This is organised on a national basis and is entitled the national clinical programme. This is the encapsulation of what has happened up to now. During the past seven or eight years, all of the CF centres have come together and agreed guidelines on resourcing of CF care, the need for outpatient care and inpatient care and how this can be organised. Ultimately, it is not what I, my team or the hospitals do but what is done for each person with cystic fibrosis and their families, who are among the bravest in our society. Each person with cystic fibrosis battles with the illness from the time he or she is born. If I become ill next year, I will have enjoyed good health beforehand. There is no time of good health prior to or after cystic fibrosis diagnosis. Cystic fibrosis sufferers and their families deal with the condition on a daily basis. The average patient spends at least two hours per day receiving treatment. These people battle with cystic fibrosis with the support of the CF teams, hospitals and the HSE under the leadership of Mr. O'Dwyer.

That is a brief overview of what is happening in this area. We are seeing an improvement in people in their forties and fifties. However, there is a need for ongoing detailed care to allow people with cystic fibrosis to have an improved quality of life for them and their families now and into the future.

Chairman

Perhaps Mr. Jermyn would update the committee on the circumstances surrounding admissions to St. Vincent's University Hospital and the action being taken by the management of the hospital in this regard.

Mr. Gerry O'Dwyer

It is important that on behalf of the HSE I acknowledge the major work undertaken by Professor Gallagher on its behalf and the phenomenal support we have received from Mr. Philip Walsh and the Cystic Fibrosis Association nationally.

Chairman

We all concur with Mr. O'Dwyer's remarks in regard to the work being done in this area by Professor Gallagher, whom I thank for his presentation.

Mr. Nicholas Jermyn

On behalf of St. Vincent's University Hospital, I would like to reiterate our commitment to the statement to which we signed up with our colleagues in the HSE and the Cystic Fibrosis Association. It is important to say that the State has invested €7.7 million in the construction of the cystic fibrosis unit, the operational cost of which is €7 million per annum.

I would like to comment on recent statements in the public arena. On 23 November 2012, which was the Friday prior to the Monday and Tuesday on which the publicity occurred, there was a major outbreak of winter vomiting bug in many wards at the hospital, resulting in the closure of many areas to new admissions. Having said that, there were no patients awaiting admission on Saturday, 24 November. On Monday, all cystic fibrosis patients requiring hospital care were being cared for in the hospital. It is important to state that on the Monday there were 29 CF patients in the hospital, 24 of whom were located in the new Nutley wing. Other patients were located in other medical facilities because we could not put patients at risk of infection together. There are a group of patients who have CF who cannot be located with other patients, including on the same ward.

At 4 p.m. on Monday, 29 November, following clinic, an additional number of patients required admission. Of those six patients, three were offered beds in single rooms but not in the Nutley wing. One of the patients could not remain on that day and was taken in the following day. This was against the backdrop of the hospital and the accident and emergency department being full. On the Tuesday night, we admitted all those patients who had not been admitted on Monday night. On Tuesday at around 6 p.m. the medical team was informed that we were in difficulty with beds. Following a further clinic, an additional four patients required admission. We managed to find a bed for one of those patients. It was then decided to send the remaining patients home and to have them admitted the following day because we did not have the facilities required. At that stage, we had 29 CF inpatients. By 12.30 a.m. on the Wednesday, all patients requiring admission had been admitted. We flexed up our beds from 20 to 33. As I said, not all patients were accommodated in single en-suite rooms in the Nutley wing, but of the 33 admitted, 24 were in the Nutley wing and nine were placed in other units around the hospital. While most were in single en-suite rooms, one patient was in a single room which did not have a bathroom attached.

As we speak, there are 28 CF patients in the hospital. I am pleased to say that all but one of those patients are in the Nutley wing. The person not in the Nutley wing is located elsewhere due to infection risk, and it is hoped to have that patient accommodated in the Nutley wing by close of business today. I take this opportunity to thank Professor Gallagher and the consultants and nursing staff, who are working extremely hard. We have 45 other key specialties in the hospital. It is important we get our cystic fibrosis services right because we are the hub for the region and the country. I do not propose to say any more on that issue. I hope I have explained the situation.

We are in dialogue with the Cystic Fibrosis Association and work in partnership with it. A liaison committee meeting is due to be held tomorrow. We are considering the escalation policy in the hospital specific to cystic fibrosis and our criteria for admission and discharge. We need to communicate more effectively with the patients who do not get care as urgently as they would like. I want to reassure our population of patients that if they are critical they will be admitted. A patient who arrived at the hospital the other day in a critical state was taken care of. It is important that patients come to the hospital, as they do for all of the other specialties. I do not deny that we are challenged at times. The statement commits to our flexing our beds from ten to 34. We have not yet hit the target of 34 but we did, as I said earlier, reach 33. We have a day centre with ten individual rooms. If we cannot get a patient admitted during a particular day we will commence treatment in the day facility and will in an appropriate amount of time have him or her admitted. We admitted all patients within 24 hours and as such did flex up. However, it was not immediate and we are looking at how we can improve on that in the future.

Mr. Gerry O'Dwyer

We have been in dialogue with the hospital and the association. We hope to conclude our work with all of the parties, the clinicians, the association and the hospital management on Monday evening. As I said earlier, a phenomenal amount of work has been undertaken over the past two weeks, particularly by all the principals before the committee today.

Chairman

Thank you, Mr. O'Dwyer. I will now take questions from members.

Deputy Caoimhghín Ó Caoláin

I welcome the delegates. One of the very encouraging aspects of this engagement is the evident cohesion across all of the interests represented this morning. This is to the credit not only of Professor Gallagher and his team but also of Mr. O'Dwyer and his colleagues from the Health Service Executive. It is not always the case that there is a clear, united and determined approach to address problems within the health service. It is a great comfort to us that there is such a consensus in this instance.

There has been a tremendous focus recently on the care of cystic fibrosis patients and the Nutley wing at St. Vincent's Hospital, in particular. I am particularly interested in the care of children with cystic fibrosis which is currently provided at Our Lady's Children's Hospital in Crumlin. I understand the facility can cater for up to 140 patients. However, the number of dedicated stand-alone room facilities to provide for inpatient care is much smaller. The committee has not yet been given a profile of the component parts of the proposed national children's hospital. Do the Cystic Fibrosis Association of Ireland and all of the interested parties represented have an understanding a dedicated cystic fibrosis unit will be an integral part of that facility? Moreover, is it their expectation that such a facility will cater for an increased number of inpatients, commensurate with the response at St. Vincent's Hospital for adults?

It is hugely important that there be as early a diagnosis as possible for cystic fibrosis patients. I do not claim expertise in this area; my knowledge is based mostly on my limited exposure to cystic fibrosis sufferers on a one-to-one basis. My understanding is that because the condition is genetic it is perhaps identifiable even before symptoms present because there is a readily identifiable cohort of those at risk or at greatest risk. The earliest possible intervention, even before symptoms present, is hugely important in the treatment of cystic fibrosis in the lifetime of a sufferer. I am very interested in the delegates' observations in this regard.

Mr. Jermyn has indicated that following the meeting of 3 December, it was agreed to have a follow-up meeting in a fortnight's time. Will he confirm whether the meeting which he indicated is taking place tomorrow is the follow-up meeting signalled? In regard to the 34-bed capacity of the new Nutley ward, he suggested one or two beds would always be available. In the light of the developments that will come on stream from February next year, I can envisage a situation where the word "always" comes under at least one question. My concern is that there will always be an unexpected level of demand such that it is not always possible to ensure one or two beds will be available. In measuring this need is there a sense that the current provision is measured appropriately in terms of the response needed to cater for the numbers that do and can present? We must avoid a repeat of the situation in the recent past where there were five refusals. I do not use that word to be provocative and should perhaps say five patients could not be admitted.

We in this committee are all of one mind to lend our support to the delegates in ensuring cystic fibrosis sufferers are offered the very best support by the health system. That is our purpose as elected representatives and members of the committee. I thank the delegates once again for their attendance.

Senator Katherine Zappone

I thank Mr. O'Dwyer, Professor Gallagher, Mr. Jermyn and their colleagues for agreeing to attend this meeting at such short notice. The motion my colleague, Senator Jillian van Turnhout, and I brought forward arises in the context of recent reports in the media, our specific objective being to discover whether current practices are in line with agreements made in April 2011 and July 2012. The issue was also raised by our colleague, Senator John Crown, in the Seanad.

I very much welcome the delegates' outline of the current position and ongoing developments, the approach of the Cystic Fibrosis Association of Ireland and the general approach to the care of cystic fibrosis patients. Professor Gallagher, in particular, has offered significant grounds for hope. Before conducting my research, cystic fibrosis was not a disease with which I was very familiar. I was particularly saddened to discover that the oldest sufferer in Ireland was only 62 years of age. However, I am hopeful in terms of the vision that has been set out, the research being carried out and where we are moving towards to in terms of early diagnosis and reforming the provision of the ongoing and complex care required. All of this is very much to be welcomed. I also appreciate the delegates' acknowledgement of the bravery of patients and their families, a point on which we are all in agreement.

Mr. Jermyn outlined the latest developments and gave us the relevant figures. As I understand it, within the particular week to which reference was made, there may have been instances where it was found that aspects of the agreements and statements devised in respect of the partnership approach could not be put in place. Will Mr. Jermyn clarify whether the required one to two inpatient rooms in the Nutley wing for emergency admissions were, in fact, available? It seems there were 20 inpatient beds utilised, but the agreement indicates that this can be flexed up to 34. From what Mr. Jermyn said, however, it appears that this could not be done on one occasion during the week in question, whether for one day or some other length of time. Will he clarify whether that was the case? Have there been other occasions on which the hospital has not been able to implement the agreements and statements put in place?

In his first major public statement on the matter the Minister for Health, Deputy James Reilly, indicated that the provision of 34 beds was agreed to and should be available. In reading through the statements and agreements, however, it is not absolutely clear to me that there is a specific commitment that 34 beds - in single isolated rooms with the appropriate staff and equipment, in accordance with international standards - will always be available. Will Mr. Jermyn indicate whether it is the intention to include that absolute commitment in the agreements?

My last question has already been answered to some extent. I heard that the HSE would come back to the committee with a report on what has been agreed. I am also keen to know, however, whether in those discussions the HSE will put in place a framework for review. If so, perhaps the HSE can inform the committee what that framework for review will consist of, so that we will know how the monitoring and reporting is taking place.

Deputy Catherine Byrne

Deputy Ó Caoláin has already asked a question regarding the new national children's hospital and the connection with Crumlin hospital, and I was going to ask something similar. It is a good news story that people are living a little bit longer, but do they have the necessary services? In recent years, I have met only two people with cystic fibrosis. One is a young lad who lives beside me, and the other is a young girl whose baby was diagnosed with cystic fibrosis. Within 24 hours of the baby having been born, her life changed because she got the sad news. There was great joy when the baby was born but then the sad news came that the infant had a life-threatening illness. That child is now 11 or 12 years of age.

I do not have a lot of experience of meeting people with cystic fibrosis. I do not know why Ireland has the highest incidence of cystic fibrosis. Have studies been undertaken on why this is so? Is it genetic or is it something to do with lifestyle? It is not the normal illness that one hears about on a daily basis.

Senator John Crown

My understanding is that the international guidelines are clear on this matter. For a cohort of approximately 340 adult cystic fibrosis patients there should be 34 beds. That is what is needed and any departure from 34 beds is a departure from international guidelines. The figure of 34 beds was agreed, but 24 designated beds were delivered and an additional 14 single inpatient rooms were promised. Where are they? Do they exist? The hospital in which I work has patients with complex illnesses who have a known requirement for single rooms with isolated toilet facilities for people with MRSA, VRE, ESBL-producing bacteria and the various vomiting bugs, including the norovirus which has been prominent recently. In addition, because of general medicine, there will be a requirement for single isolation rooms for patients who are disturbed or terminally ill and whose families need to be beside them without having large numbers of other people present.

There will always be a demand for beds in single rooms in the hospital. It requires clarification, therefore, when the HSE says it is giving 20 of the 34 because it will designate 14 others. One would have thought, at a bare minimum, that if we were designating 14 additional beds from outside the specialist unit, the requirement that there would always be one or two inpatient rooms available for emergencies would be respected. Were the bed managers instructed to protect those 14 beds and then particularly to protect the one to two inpatient room beds? I would like some clarification on that. Has any attempt been made to ensure that when the 14 beds are activated they are actually segregated, and that the staff there have some facility, experience and expertise in dealing with patients with cystic fibrosis with particular needs?

Patients with cystic fibrosis are appropriately quick to point out deficiencies in their own care. That is because they are good at it. As Professor Gallagher told us, they have been going through this all their lives. They know if somebody makes a mistake or if the nurse dealing with them is inexperienced in cystic fibrosis. They also know if a doctor is not following the hygiene procedures that doctors dealing with cystic fibrosis patients must carry out.

Have we got a guarantee that if these beds are not all in what - let us face it - should be a 34-bed unit or they are not all in the 20-bed unit, there is at least an appropriate level of step-down of expertise, concentrated geographically, for the other 14 beds?

Deputy Seamus Healy

I welcome the visitors and thank them for their informed submissions. As a public representative, it comes down to this: a constituent of mine was unable to get a bed recently. As Professor Gallagher said, this particular illness affects not only the individual but also the family and the community. The level of stress and anxiety surrounding the non-availability of admission is significant. It is hugely worrying for the individuals concerned and their families.

Following on from Senator Crown's question, what assurance can we have that in future a cystic fibrosis patient will be admitted to St. Vincent's Hospital in appropriate accommodation?

Mr. Gerry O'Dwyer

I thank the Chairman and other members of the joint committee for their comments. As I mentioned, the newborn screening is really important. Deputy Catherine Byrne referred to that.

As regards Deputy Ó Caoláin's question on paediatrics, we are in discussion with the association on that matter. Yesterday morning, I met with Professor Alf Nicholson, the lead in paediatrics through the clinical care programmes, and Mr. Colm Costigan, who is the clinical director for the three paediatric hospitals in the Dublin area, with a view to putting in place a small working group to work with Professor Gallagher. The latter has also started to work on the whole question of paediatrics. Given the numbers we identified earlier, there is a need to ensure that we have a similar robust arrangement for paediatrics.

We have been working closely with Crumlin and Temple Street hospitals. There have been one or two issues but we have dealt with them. We are reviewing those in paediatrics as well. In the coming weeks, we will be having another focused meeting with the association, Professor Gallagher and Ms Godfrey concerning paediatrics. It is essential that we get it right in the new paediatric hospital from day one. The input of the experts is really important to ensure that when that hospital is completed we will have a state-of-the-art facility for our children after they have been diagnosed through our programme.

Professor Gallagher may want to say a little more on this because it is something on which we have started work.

Professor Charles Gallagher

Yes, I agree totally. Mr. O'Dwyer has worked hard on this. With the development of the new national children's hospital, it is crucial that we have the resources and staff we need for cystic fibrosis. I have been and will be working with the paediatric community to have this done in a way that fits patients' and families' needs to provide the best care that we have. As in all of these issues, however - including our meeting here today - the devil is in the detail. We are talking about bringing together a community that has been in different hospitals until now and that must be focused on the newborn child who is being screened, but also on the older child who has ongoing health issues. It will encompass that totality of outpatient day care and inpatient care. I agree totally that it is a high priority for the HSE, for me and for the CF community.

Let us be clear that getting it right in cystic fibrosis is not a matter of a one-off, it is every single day. We want to keep people as healthy as they can be in childhood, adolescence and adult life. That is why there is continuity. Over the years, before the initiation of the HSE's cystic fibrosis clinical programme, we have had a coming together of all the CF community, including doctors and nurses throughout Ireland, to come up with care guidelines. I hope that will follow on quickly. It is beginning right now.

Mr. Gerry O'Dwyer

To further answer Deputy Ó Caoláin, it is important to note that we are also working with the other centres. In Cork, for example, they deal with adults and children. Professor Gallagher has been down there. Likewise, in Limerick and Galway they are also dealing with children and adults. They, in turn, have links with some of the other regional hospitals. Professor Gallagher and Ms Godfrey have made a number of visits and the discussions are ongoing. In addition, refurbishment arrangements are taking place in those areas also.

Chairman

In the case of Cork, is the development of the facility there being prioritised and is it ongoing? Where is it on the list?

There are a number of them and Professor Gallagher will address them. The association has carried out significant fund raising and has identified the areas in which it will work in partnership with us to help us on the capital build because, as members can appreciate, we do not have as much capital as we had previously. We are prioritising those with Professor Gallagher and the association. These people have gone out and raised a substantial amount of money for a particular facility. It is my responsibility with Professor Gallagher to ensure this money is spent wisely. The unit in Cork is running very successfully and Professor Gallagher has a considerable amount of contact with it.

Professor Charles Gallagher

I totally support that. The Cork adult unit is the second largest in the country after our own. It has very efficient adult and paediatric units which work very closely together. The Cork unit has an application in for capital funding and has raised most of the funding itself through the Cystic Fibrosis Association and the related associations in Cork and Kerry. It has also sent an application for incremental funding to build this to the HSE that will get high priority. It is a high priority for us, as I mentioned previously, to have the best services for all of the CF community around Ireland.

Chairman

Are there any further questions?

Mr. Gerry O'Dwyer

I should have alluded to Dublin north. Beaumont Hospital worked very closely with Temple Street Children's Hospital on it. Again, Professor Gallagher has linked in with the leads on those two centres.

Chairman

In respect of the questions raised by Senator Zappone-----

Deputy Caoimhghín Ó Caoláin

Could I get some clarification in respect of the follow-up meeting?

Mr. Gerry O'Dwyer

There will be an in-house meeting tomorrow in St. Vincent's Hospital and on Monday night, all of us here will be meeting to agree the various steps and the protocols and procedures will be in place and, hopefully, agreed with all parties, including the Cystic Fibrosis Association.

Chairman

Could Mr. O'Dwyer address the other questions raised by members?

Mr. Gerry O'Dwyer

I will ask Mr. Jermyn to talk specifically about them because they are pertinent to St. Vincent's Hospital.

Mr. Nicholas Jermyn

The various questions are interchangeable so I will try to deal with all of them. We have a liaison committee that meets with the Cystic Fibrosis Association representatives, some of the patients and the medical and nursing staff at a local level on a regular basis. That meeting will take place tomorrow. The meeting to which Mr. O'Dwyer referred is the national meeting with the HSE, the hospital, Professor Gallagher and Dr. Edward McKone of St. Vincent's Hospital.

In respect of the ward block, St. Vincent's Hospital was opened in the 1970s and the old-type wards were in existence. The concept of the ward block was that we would create 100 single-room en-suites to cater for a number of patients. Senator Crown referred to various specialties and patients who require isolation in bathroom suites. This unit was opened and two of those floors were dedicated to CF patients. We have 45 different specialties, 550 beds and 126 single-bathroom en-suites in the hospital. There is a concentration in the Nutley wing and, obviously, CF patients have a dedicated 20-bed unit into which nobody else goes. We have not put other patients into it even if the beds are vacant. The day facility below that unit has ten en-suite single rooms and is used for day care and patients for whom we are trying to find beds.

An issue related to the statement issued and to which we are committed was the flexible use of those beds. We do not need the 34 beds all year round but there are certain times, particularly coming into the winter, when there is a need to increase the number of beds. In respect of the one to two emergency beds, we are guaranteeing and working with the Cystic Fibrosis Association to ensure that at least one of the beds in the CF unit in the Nutley wing will be made available and kept for emergencies. When certain types of CF patients are admitted, they cannot be put with other CF patients. When we refer to the one emergency bed that is guaranteed in the Nutley wing, there are situations when, although we always try to admit the most sick CF patients to the actual ward itself, we cannot always put them into that unit for clinical reasons so we must find the other most appropriate place to put them. As Senator Crown said, we want to ensure that they are placed in an area where the nurses and staff are familiar with treating these patients and that is what we have in the overall hospital situation. There are other areas where we cannot accommodate certain CF patients in the dedicated unit and we then look to the acute respiratory unit. There are one or two other areas in the hospital we have designated. We have not been able to guarantee single-room en-suites in all areas because of the design of the hospital and we are working to escalate our policies.

We are devising our current practices. We have been in the new unit since July and we have developed the day care unit. I know it was referred to as the register of patients. Over 60% of all adult CF patients attend St. Vincent's Hospital but there are other centres around the country that have been developed and have evolved. What we need to do is flex and work with the specialists. There are other cystic fibrosis consultants appointed in other centres around the country. As the hub centre, we will try to ensure we can accommodate the most sick patients and maximise the efficient use of the day centre in St. Vincent's Hospital and the other centres around the country. I understand that 315 patients are registered with us, of whom about 20% come from outside Dublin. We need to see whether we can maximise the facilities.

We are challenged at times with many of the other specialties we have. We are the lead centre for many cancers and other specialties. As indicated, we need single rooms for these patients as well. We have allocated 26% of the 126 cubicle en-suite bathrooms for dedicated use by the CF patients. The hospital admits over 100,000 patients per year and 400 of them are CF patients. We are doing our best and sometimes it does not always meet the requirements. The purpose of looking at international standards is also to look at developments in care, drugs and medicines. There have been significant developments in the way we care for CF patients, including identifying them at a younger age and treating them earlier, and we should learn from them. We have found different ways of dealing with different types of patients coming in with CF. There are different levels of emergency. Some patients need to be admitted immediately, while others need to be admitted soon. We are working on that and will discuss it with the Cystic Fibrosis Association so that when we do have-----

Chairman

Have representatives from the hospital met the association since the incident?

Mr. Nicholas Jermyn

Yes, we have and will follow up matters next Monday. We will present further development policies and guidelines. As Senator Crown noted, there are international guidelines. We need to look at our current practices to see whether we can make better use of and continue to develop all of our facilities, including our day care facilities. One of the Senators asked how we were going to move forward and review this. The point of the national programme is to link the hospitals that provide the service to the front line with the staff and the national groups. This is where we have the national clinical programme led by the lead consultant in our hospital, Professor Gallagher, who, along with Dr. Edward McKone, is a key person in our hospital. Could I leave it at that as I think I have covered the questions?

Senator John Crown

I have a quick follow-up question. I am sorry to put Professor Gallagher on the spot. Professor Gallagher and I are old friends and colleagues and I have limitless respect for what he has achieved with the CF patients and, more broadly, in upscaling the quality of respiratory medicine in this country. Does he believe, as is being billed to us, that 20 designated beds plus competitive access to the pool of single rooms in the hospital is putting us in an adequate situation to meet international guidelines or do we need to bite the bullet and have 34 designated beds? Is he happy that decisions with respect to whether he should be re-referring patients back to other centres and not letting them stay in the national centre are being followed? Is he being put under any pressure to depart from what he believes is the right way of handling these issues?

I will make a brief statement. It is very depressing that five months after the opening of a much-heralded and long-awaited unit, we are still talking about having crisis and late night meetings next week. It says something very profound about the way we run things. If there had not been such a significant burst of publicity two weeks ago, I am not sure what would happen. It is always the same. It is the politics of the last health care atrocity every time when we try to advance things in our health system.

Senator Jillian van Turnhout

One of my reasons for requesting the meeting today was because we are all very aware of the stress and distress of the patients from the media reports.

I understood that the purpose of today's meeting was to restore confidence. I do not have that confidence. I am reading the statement signed by the witnesses and the Cystic Fibrosis Association that states clearly: "1-2 in-patient rooms in the Nutley Wing will be kept available at all times for emergency admissions. In circumstances where the emergency admission rooms have already been utilised and all the other in patient rooms in the Nutley Wing are occupied, patients with Cystic Fibrosis will be accommodated elsewhere in clinically appropriate single rooms until such time as a room becomes available in the Nutley Wing and then the patient will be transferred there as a priority." I am not hearing that today. In his budget statement last week the Minister for Health, Deputy James Reilly, said 34 beds is 34 beds. That is not what we are hearing.

Chairman: I thank the Senator.

Senator Katherine Zappone: I also appreciated the response but as Senator Crown said, the agreements do not clearly state or guarantee the 34 beds. My explicit question was if there were there times when the agreements made could not be kept.

Professor Charles Gallagher: There are several interrelated questions. I emphasise that much has been done to improve things. I will try to deal with the questions in order as briefly as I can. In response to Senator Zappone there definitely were times when we did not have one or two beds available in the past month. There is no doubt about that. I have a list of those instances.

In answer to Senator Crown's two questions, the second was about people going back to other areas. We have not felt under pressure. A total of 80% of the patients in St. Vincent's Hospital CF unit are from our catchment area. The remaining 20% are patients with a very complex disease who come to us from other parts of Ireland who need to be treated here. Those patients we treated in other centres are already being treated in those centres. We audit this every month. The patients who come into St. Vincent's CF centre now all need to be there because of a catchment area or because of a disease severity and that is that.

Senator John Crown

Does Professor Gallagher feel pressurised to transfer some of those 20% back?

Professor Charles Gallagher

I personally do not feel pressurised and I do not believe that my colleague, Dr. McKone, feels pressurised because our clinical need is to have those patients there. This is the national referral centre for adult cystic fibrosis. Those patients attending our centre need to be there. Patients coming from other centres for a second opinion go back to the other centres. We are resourced for that.

The Senator's second question was as to the whereabouts of the other 14 rooms. I cannot answer that. My answer to his question about what I would recommend might not make me popular but I recommend that there be an allocation of rooms for people with cystic fibrosis. Twenty is not enough. The other ones should be allocated in one area and if they are not used by CF patients they should be used by other patients. That is the situation. I fully support responding to other patient needs but the issue now is to have the CF patients in one area where there is availability, expertise and nursing staff. If those rooms are not taken up I strongly support their use by other patient groups. There is a need for capacity of up to 34 inpatient beds, in line with all the international and Irish guidelines.

Deputy Caoimhghín Ó Caoláin

Popularity is not the issue as we in this room know because very often we are not popular, whether in government or opposition. I welcome what Professor Gallagher has rightly said. It is the shared view that the required capacity should be available. While against the backdrop of the recent crisis this meeting could have had a negative disposition we must take encouragement from the positive developments. I expect that the witnesses take this as encouragement to proceed along the path identified and working together is the way to do that. I hope that they will be in a position to report to us on progress towards the goals and objectives that Professor Gallagher has confirmed and give us a positive update early in the new year.

Senator Katherine Zappone

I asked Mr. Jermyn a question which was not answered about whether there were times when commitments in the statement could not be met.

Mr. Nicholas Jermyn

In respect of these two emergency patients there have been situations in which we have not been able to take in all patients. I emphasise that following an afternoon clinic one might have five patients who are told they need to be admitted. We are working out a process whereby patients with an urgent need do get in. Then we are able to get patients appropriate beds within 24 hours. In the two days we spoke about we admitted two patients per day whose needs were urgent. There were other patients we would like to have admitted straightaway but we took them in the next day. In the Nutley wing we try to admit all patients. Once a patient is admitted to the Nutley wing, outside the cystic fibrosis unit, in the other five ward areas we have accommodated a cepacia, cystic fibrosis patient on each of those floors. We cannot then put any other cystic fibrosis patient on those wards.

We are studying the infection control measures. As a result of the way the wards are designed, there are two sides to them, we may be able to put another patient in. That means we have further accommodation available. We can put patients with certain infections together. That is what we are studying now. I stress that there have been times when this issue has not received the same media attention. We were flexing and we took in patients on the night when five patients were waiting. We had them all in by the next day. We had four new patients the next day and we got two of them in. We have to work through this issue with the CF Association, the individual patients and their families to see how we can best use the resources available to us. It is difficult in the evening when the accident and emergency unit and other specialties are pushing for resources. We did sign an agreement with everybody that we would flex the beds up. We have run into difficulties from which we will learn. We are working with the clinicians and nurses and we are working with the other centres.

To reassure the members of the committee I emphasise that we will get patients who are really sick in. We got an emergency patient in the other night who had to come to the accident and emergency unit because of the way the patient had collapsed. There are different levels of acuity and we will work through that with the clinicians and the patients. I am sorry if we did not give committee members confidence in our work. This is a fabulous news story. We have a fantastic new state-of-the-art unit on which we have spent a lot of taxpayers' money. Let us make the maximum use of it and reassure patients who come to this unit. We should not have a situation such as that which arose last week which undermines the confidence of patients which affects staff and morale and everybody else.

Chairman

It should be acknowledged that the staff in this unit do tremendous work.

Mr. Nicholas Jermyn

Absolutely.

Chairman

The purpose of our meeting is not to score points and to create division but there was a level of anxiety which came across very palpably on the airwaves and the good news story was diluted. This unit was opened with great fanfare and suddenly there was a problem. I understand the demands and pressure. This meeting has given people confidence and I am reassured by the presentation.

Senator Jillian van Turnhout

Professor Gallagher made a very clear statement that the 14 beds should be allocated in the same place. I do not have all the clinical terms.

This is my understanding of reading an agreement about 20 beds being flexed up to 34. Everybody would know where these 14 are. I would like a commitment to work towards allocating the 14 beds and to examine structurally how to allocate them. I know the witnesses cannot state they exist now, but can we get a commitment this is what will be worked towards so the statement issued will live up to what it states?

Senator John Crown

I do not share this confidence either. We could have a severe winter, bad flu or an outbreak of the winter vomiting bug. These events happen and need to be planned for. I am not convinced we have heard any real cogent credible plan which ring-fences the number of beds needed for people with cystic fibrosis. This has been a very waffly exercise. I have not been served so much waffle since I was at the breakfast buffet at a Holiday Inn in Florida.

Mr. Gerry O'Dwyer

I reassure the Deputies and Senators that we have a partnership approach to this and it will remain in place. We will have a monitoring team in place because it is absolutely essential that people are reassured the service is excellent in St. Vincent's Hospital. We will bring away the issues raised by the Senators and Deputies and discuss them further among ourselves.

Chairman

Will action come out of it?

Mr. Gerry O'Dwyer

Absolutely because we want to get a resolution to this. We are focused on getting a resolution which ensures all of those involved, particularly the patients, are comfortable with the arrangement. We welcome the opportunity to be here and we will certainly take on board the issues raised and discuss them further. Nothing will roll us away from the agenda to support the hospital, the association and, primarily, ensure that patients are treated.

Chairman

The last thing we need, going back to Senator Crown's point, is to see a repeat of this in January or February.

Mr. Gerry O'Dwyer

There were very challenging circumstances in St. Vincent's Hospital at the time mentioned by Mr. Jermyn due to the winter vomiting bug and huge attendance at the emergency department.

Deputy Caoimhghín Ó Caoláin

Would the secretary please put into the diary a reminder to correspond in three months' time to seek an update at that point in time? What we are saying to all those representing their respective roles and responsibilities with regard to cystic fibrosis is that we hope they will be able to give us a very positive report at that point in time with regard to the matters raised here today.

Chairman

A vote has been called in Dáil. I thank the staff who do Trojan work, in particular Professor Gallagher for his lead. We are here as Members of the Oireachtas but we must also represent the voice of the patient. We are speaking about people with a need and requirement and I thank the witnesses for coming before the committee this morning. I apologise to those witnesses who did not have an opportunity to contribute. We will come back to this issue in February or March.

The joint committee adjourned at 11.15 a.m. until 9.30 a.m. on Thursday, 20 December 2012.