Dáil Éireann debate -
Wednesday, 1 Jul 2015

Vol. 885 No. 2

Topical Issue Debate

Hospital Facilities

Deputy Martin Ferris

I am raising the issue of the respiratory unit for cystic fibrosis patients in Cork University Hospital for several reasons, not least of which is the current crisis. I knew personally several people who passed away as a consequence of that terrible illness, including Billy Burke who passed away a number of years ago, Mary Hand from Dingle and Kieran Treacy who was a great friend of mine. I am concerned that the proposed 20 bed adult respiratory ward in Cork University Hospital has not yet been activated. Mr. Joe Browne, a Kerryman whose 14 year old son Pádraig has cystic fibrosis, started a fantastic campaign, Build4Life, which raised €2.3 million to fund a ten bed ward at the hospital. Construction of the ward commenced in January 2014 and was completed by January this year, but I am told the ward has not been opened owing to staff shortages.

I am sure the Minister of State at the Department of Health, Deputy Kathleen Lynch, has visited cystic fibrosis patients. I am a regular visitor to cystic fibrosis patients in the Mater hospital. Given their vulnerability to infection, the importance of a specialised ward cannot be overstated. When will sufficient staff be made available to open the unit? I hope the Minister of State can give this matter her immediate attention.

Deputy Tom Fleming

I am glad that the Minister of State, Deputy Kathleen Lynch, is responding to this issue because I do not think there is anyone better acquainted with the various obstacles and snags that affect health services. She has been very helpful at various stages in addressing the anomalies and issues that arise in dealing with this matter. There is an undue delay in opening the 20 bed adult respiratory ward 5B which includes ten designated single inpatient rooms for cystic fibrosis patients. Cork University Hospital was not in a position financially to provide a larger unit to replace the original ward 3A where for several years doctors and staff had been struggling to accommodate cystic fibrosis patients in 11 beds. Fortunately, Mr. Joe Browne and his fundraising group in County Kerry, Build4Life, stepped in to fund the unit. All members of the group were either adults with cystic fibrosis or parents of children with the illness which gave them first-hand experience of the inadequacies of the facilities at Cork University Hospital. Through its endeavours, the group raised more than €2.3 million as a catalyst to get the project off the ground. Following the initial discussions on the number of beds to be designated for cystic fibrosis patients, the Minister of State intervened to find a satisfactory solution. However, there has been a delay of four or five months since the unit was completed. It needs to be opened at the earliest opportunity because these patients need to be treated in isolation, given that exposure to infection can be fatal for them. It is shameful that the unit continues to lie idle. I am sure the Minister of State is willing to make one more strong endeavour to progress the matter. I also note that her senior colleague, the Minister for Health, has stepped in with national funding.

Deputy Michael Healy-Rae

I welcome the opportunity to join my colleagues in raising this important matter. I have close personal friends who are cystic fibrosis sufferers and their families have lived with this problem for many years. I commend Mr. Joe Browne and the other individuals who started Build4Life for their massive fundraising efforts for many years. They stepped in when Governments, past and present, let cystic fibrosis patients down. It is a shame that the beds and this much-needed unit cannot be opened because of an insufficient number of staff. What are we saying to Mr. Browne and those who work with him? Are we to tell them that not only must they provide the money to develop and build the unit but they will also have to fundraise to hire nurses privately to staff it? Is that what the Government wants?

Deputy Kathleen Lynch

This is not an occasion on which to be critical.

Deputy Michael Healy-Rae

I am not criticising anyone; I am saying we want the unit to open. That is the bottom line. All we ask is that the unit receive the staff required to open it. That is what cystic fibrosis patients need and deserve. The facility was provided by people like Mr. Browne and those who supported the Build4Life charity. We will be forever in their debt for the work they have done for many years. I hope the Minister of State will have a positive response to our plea.

Deputy Billy Kelleher

It is extraordinary that we are still debating this issue six months after completion of the building project. Mr. Joe Browne and Build4Life went about organising a fundraising project. They lightened the obligation and burden on the State by developing an infrastructure that was required for cystic fibrosis patients. It is unacceptable that the HSE cannot bring itself to recruit the additional numbers required to staff the respiratory ward and ensure there would be complementary staff in the wards from which they would be taken. Is it beyond the wit of the HSE to do so? It knew for a number of years that this facility was going to be completed and opened at some stage. It is unacceptable, therefore, that it cannot provide a complement of staff to facilitate transition to the new ward. This is not the first time this has happened. The HSE seems to be incapable of anticipating staff requirements in the context of new builds and the completion of infrastructure. We have had the same issues across the country in many areas where emergency departments have been opened, yet the required staffing complements have not been put in place. In addition, there have been theatre and ward closures owing to the HSE's inability to manage staff. In this situation, members of the public came together in a fundraising exercise to negate the State's obligation to provide a service. All they asked for was a staffing complement, yet they now find six months after construction was completed that the requisite staff are not available. This fine facility has potential life-saving implications for cystic fibrosis patients. We all know the history of why Mr. Joe Browne and others became involved. It stemmed from the tragic outcomes for some people, including as a result of cross infections, because of which some died. We now find six months on that four Deputies have had to raise the matter. It is time for the HSE to get its act together and address the staffing issue immediately.

Minister of State at the Department of Health (Deputy Kathleen Lynch)

I thank the Deputies for raising this issue. Deputy Tom Fleming, in particular, has always had an interest in it and this is not the only forum in which we have discussed it.

Cystic fibrosis is the most common life-threatening inherited disease in Ireland. I am acutely aware of the challenges facing people with cystic fibrosis and their families in managing their condition. I fully acknowledge the need for dedicated accommodation for appropriate isolation and better infection control. Where inpatient treatment is required for people with cystic fibrosis, it should be in single en suite rooms, as these patients need to avoid possible sources of infection. At the same time, however, we must aim to minimise hospital admissions and instead treat patients on a day-care basis as close to home as possible.

There has been significant investment in treatment and services in the past few years. It includes the €29 million unit at St. Vincent's University Hospital, a new outpatient unit at Beaumont hospital, a paediatric outpatient unit in Galway and a paediatric day unit in County Mayo. In addition, we have developed newborn screening services and provide the cystic fibrosis drug ivacaftor, Kalydeco.

The Government welcomes the completion of the new 20 bed cystic fibrosis and respiratory unit at Cork University Hospital. This unit, with single bedrooms and state-of-the-art infection controls, will be a great boost for cystic fibrosis patients and their families in the region. I commend Build4Life and Mr. Joe Browne for raising €2.3 million for the project. It is a tremendous achievement and I am pleased that the Department of Health was able to support it through the provision of national lottery funding of €300,000.

I also welcome the start of construction of new paediatric cystic fibrosis facilities at Cork University Hospital. I understand the current unit moved temporarily in June to allow work to begin. I am, of course, aware of concerns about delays in opening the new inpatient unit at the hospital. I am advised that while it has been completed and fitted out, there are difficulties in staffing the unit. Recruitment of nurses is an issue not just for Cork University Hospital but also nationally and internationally. I have been assured that Cork University Hospital is actively recruiting nursing staff and will open the unit as soon as it can be safely and effectively staffed. The National Recruitment Service has been asked to prioritise the issue. Unfortunately, it is not possible simply to move staff from other areas of the hospital. Cystic fibrosis units have a higher nursing requirement and require dedicated staff. Consequently, to open the new unit in Cork University Hospital would require staff reductions in other areas and this would necessitate bed closures. I am sure none of the Deputies would like this to happen, as it would affect patient flow and access and would have a serious impact on the emergency department.

I fully recognise the disappointment of Build4Life, as this is a personal and heartfelt project for it. The Government fully acknowledges the work it has put in and its frustration at the delay in opening the unit. Nobody wants the opening of this upgraded service to be delayed. However, the House must accept that patient safety cannot be compromised and, therefore, the unit cannot open until it is safe to do so. I have asked the CEO of the South/South-West Hospital Group to keep me informed of progress in the opening of the unit and have urged that the issue be resolved as a priority.

As Deputy Tom Fleming and others will know, I have taken a personal interest in this issue. When there was an impasse, we managed with cool heads and dedication to ensure the project would proceed. We managed to have the ward reconfigured. Its state-of-the-art status is incredible. I have been told that there are approximately 40 nursing vacancies in Cork University Hospital. If any nurse was to walk in the door of the hospital today, he or she would be offered a contract and a job. It is not an issue of financial resources but of an inability to recruit. The difficult is not ours alone; it is also an issue across a range of areas. I am hopeful, however, that the unit will be opened as soon as possible. It is a priority not just for me but also for those charged with recruiting nurses to ensure it this will happen.

Deputy Tom Fleming

There is no doubting the Minister of State's commitment to the project from the very start, but the HSE's ad hoc arrangements are unfortunate. It appears that a staff member within the hospital was seconded to oversee the issue of staffing levels. It is mindboggling that, at this late stage, they have fallen down disastrously in failing to put the necessary team together. I understand there have been some statements on the multi-disciplinary aspect, including the specialist consultant side. At this stage, however, it is not a reasonable or justifiable answer to come up with. Efforts should be redoubled immediately. Perhaps the Minister of State might revert to hospital management to see if we can come to a resolution as quickly as possible.

Deputy Michael Healy-Rae

I thank the Minister of State for her response. I take what she said as fact - that if a nurse was to walk into the hospital tomorrow morning, he or she would be given a job. However, she is saying nurses are not taking up the jobs available. Has she examined why our young nurses are going abroad and do not want to take up offers of employment here? We cherish and adore our young people and want them to stay in Ireland, if at all possible. If young, qualified nurses choose to go abroad rather than work in Ireland, is it because of the packages being offered? The Minister of State says money is not the issue; why, therefore, can we not recruit nurses?

I understand what the Minister of State is saying and accept her bona fides, but we have the same issue in places such as Kenmare Hospital where the upstairs section is not fully open. In Dingle Hospital the HSE located offices where there should be beds to cater for patients. It is simply not good enough.

The cystic fibrosis unit in Cork University Hospital did not suddenly fall out of the sky. Management and everybody else knew that it would have to be staffed and managed. I cannot get my head around the fact that we are in this situation so long after the building was completed.

I compliment the manager of Cork University Hospital and the staff working there, as well as the staff in Kerry General Hospital. We really appreciate the work they do in tough conditions, be they surgical, nursing, catering or cleaning staff. We thank them for their efforts in dealing with sick people every day.

Deputy Martin Ferris

The HSE has been aware of this issue since 2011 and Joe Browne himself said there was no other project on the ground. He said that, since 2011, they knew they had to plan for staffing requirements and staffing has been on the agenda of the project group's monthly meetings since January 2012. How can it be that the HSE was aware of it, the staffing project was aware of it and it was on the agenda since 2012 but they still have not started? It is either total incompetence or total neglect. Mr. Browne also says he may as well have had crayons and colouring books and that no staff numbers were even given. This is the man who was the driving force behind this project to save the State €2.3 million yet, from 2011 to 1 July 2015, the staff have not been available. The HSE has totally lost focus on what this is all about.

Deputy Billy Kelleher

I reiterate everything previous Deputies have said. Catherine Shanahan's article in the Irish Examiner, her correspondence with Joe Browne and Build4Life and the correspondence of Mr. Browne, Catherine Shanahan and the HSE all go to show that the HSE is footdragging at the very least, and that is being polite. At worst it is incompetent. Since 2012 it knew this building would be completed and it knew the staff complements it would require. There were difficulties in bed allocations, which we accept, though one could argue the HSE even handled that badly. Since the resolution of the designation of the beds and the completion of the project in January 2015 the HSE, six months on, has still not had the wit or the ability to staff the unit. I accept that the Minister is trying to explain it from the HSE's point of view but the HSE is ultimately culpable here and is failing people who need the service.

Deputy Kathleen Lynch

This Government has been in position for only four years but, for the first time ever in this country, we are now developing workforce planning to look at what our staff needs will be in the future and what skill-mix we will need. This should have been done a number of years ago because one cannot plan for the future without knowing exactly what one's requirements will be. I was centrally involved in the negotiations on the unit and it would have been impractical and unreasonable to say in 2012 that we were going to need a certain complement of staff for the unit but that it should be held in abeyance until the unit was opened. That would not have been a very good use of resources.

As Deputy Healy-Rae rightly pointed out, we have a difficulty in recruitment, not just in CUH but across a range of areas, and we are now targeting the very people about whom Deputy Healy-Rae spoke, namely, our young graduates who are ready to go. They will need a degree of supervision, as all new entrants to any profession do, but we are targeting the two groups coming out this year for recruitment. We sometimes forget, however, what it is like to be young. Young people like to travel and we cannot stop them doing that. They gain experience and worthwhile accreditation in other countries. They learn how to do things differently but they do come home and we are targeting that group. Not all of them will want to travel back but we are now targeting those who wish to work for us with a recruitment drive. We are now going to England to target our nurses and to try to bring them back home to work for us.

Deputies must remember that the economy did collapse in a crash. The cystic fibrosis unit we are now discussing should have been built when this country was experiencing a boom, something Deputy Fleming and I have discussed many times. It was not built then but it is there now with the help of Build4Life and we are determined that it will open. We are doing our very best to recruit staff and, on foot of this important debate, we hope that people will hear what we are saying. If they are available and wish to have a job as nurses, male or female, in our service we would love them to work for us. This is not something I dismiss. I have taken an active interest in developments and will continue to do so.

Registration of Nurses

Deputy Jerry Buttimer

As the Minister knows, there is an issue with recruitment and registration of nurses and this has to be changed quickly. The process should take just 90 days but it can, in some cases, now take up to a year. It is affecting all sectors of the health system, be it public or private, the voluntary sector, nursing homes or acute hospitals. As the Minister said earlier, there are vacancies waiting to be filled, particularly in the nursing home sector and in our acute hospitals. This is affecting the patients, their families and the delivery of services. I contend that it should not take beyond 90 days to complete the process of registering a nurse with the Nursing and Midwifery Board of Ireland.

Senator Colm Burke and I have raised this in the Seanad and the Joint Committee on Health and Children, respectively, and we are bringing the Nursing and Midwifery Board of Ireland, NMBI, into the committee for the recess because this is a huge issue, especially in the nursing home sector. It is also having an impact on other acute services. I raised the issue with the HSE at the quarterly meeting of the committee, of which I am Chair, and it seems like little or no progress has been made since then. At the same time, I brought up the impact on the HSE of recruiting nurses from nursing homes and asked for interaction with the Nursing and Midwifery Board of Ireland to reduce the inordinate delays in registration. In response to my question the HSE said the main difficulty with expediting timely applications, as reported by the NMBI, arose partly from a failure by the applicant and third parties to furnish the necessary documentation required to assess eligibility for registration and partly from the overall volume.

It is all too easy to blame the applicant but I do not believe for one moment that every applicant can take such time as to create the delays we are now witnessing. I have met people from private hospitals, nursing homes and nursing organisations and I cannot comprehend it. Is it a matter of administration? Does the NMBI have the proper resources to do the job? If it does not, let us make sure it does because it is supposed to facilitate health services, not impede them. It is in nobody's interest for the current situation to continue as delays in the registration of nurses are having a domino effect. As we discussed with the Minister, in Cork University Hospital there are jobs waiting to be filled and I am told they need to be filled quickly because of capacity and vacancies and the effect on the delivery of services. The current situation means nursing homes and hospitals will not be able to provide services; therefore it is imperative the NMBI progresses registrations as speedily as possible. Administrative procedures should be put in place so that capacity in our health care system is not reduced. We need active engagement to deliver a solution that will solve the problem.

The chief executive of the NMBI, Dr. Maura Pidgeon, has agreed to come before our committee to discuss the issue and I hope the Minister of State's reply will give us some further hope that we can expedite the resolution of an issue which is becoming problematic. I hate using the word "crisis" but it is becoming a real crisis when hospitals cannot get nurses because of a situation which we in this House have the power to address.

Deputy Kathleen Lynch

I will be brief. It is fortunate this Topical Issue comes on the foot of the previous one because they are significantly linked. I will not read out the written reply because Deputy Buttimer has addressed most of the points in it, but there are answers in it which may be of interest. Deputy Buttimer knows the difficulty is that nurses who train outside of the country have to register here. I think everyone agrees this should be the case. Their qualifications must be scrutinised to ensure public safety. We are all agreed on that but there are difficulties.

The reply notes that each and every application will be assessed within a maximum of 90 days. Deputy Buttimer has pointed out that is not the case so I am not going to reiterate that fact. What is in the reply that might be of interest to Deputy Buttimer, however, is that there are two remaining HSE adaptation courses available in June and August of this year. These courses are for people who have registered and need to complete an adaptation course. They are six to 12 weeks in duration and facilitate the integration of nurses from elsewhere to nursing in an Irish context. It may be of interest to the Deputy to learn that since the nationally co-ordinated pilot adaptation programme commenced in June 2014, which is just one year ago, 151 candidates have completed the programme, 58 candidates are currently undergoing assessment and 126 candidates are due for assessment up to the final programme in August 2015.

Outside of the current provision for placements in 2015, there are 293 requests for placements by employers and many of them, as the Deputy rightly states, are in the nursing home sector and our own hospital. These numbers are not reflective of a national total as some hospital sites have also run independent adaptation programmes. As the Deputy can see, there are many people who wish to work in this country but simply have not completed the required adaptation course. I advise Deputy Buttimer that the Nursing and Midwifery Board of Ireland has been allocated additional resources to address the issue and I note that having the chairman or the CEO come before the committee is a wise move by it.

Deputy Jerry Buttimer

I thank the Minister of State for her reply. I am glad she did not read out the written reply; she was quite right not to. I commend her on her engagement with this issue and the previous one. I will stray for one second. The Minister of State, to be fair, intervened in the cystic fibrosis issue in Cork University Hospital and I commend her on that intervention. She did not have to intervene but she did and she got people together, and for that I praise her. I hope she does the same with this matter.

In her reply, the Minister of State speaks common sense. Notwithstanding issues in terms of completion of documentation, which I accept exist, it is becoming too commonplace for this to be trotted out as an excuse. I have met people from the private hospital, acute hospital and nursing home sectors. I have met nurses themselves. Today I met a ward sister in Cork University Hospital who told me of the issue she faced. People are losing out on promotions because of the registration process. We need to resolve this issue and much of it is in our own hands. We can easily solve some of the challenges in the health care sector and I contend this is one of them.

This is about ensuring people are compliant and registered properly. While I accept that, I have a concern about the adaptation courses, particularly in the nursing home sector. I hope we can expedite the application process and that it can be done in a more timely manner. I am acutely aware of the issues and the hurdles to be overcome but if we want to see groundhog day, we need only sit back and do nothing, which is why the committee is bringing in the chief executive. It is not to have an adversarial engagement but rather a meaningful one through which we can find a resolution. This is otherwise a good news story in the health system - we are recruiting people - but as a result of some type of bureaucracy and red tape, we cannot recruit them and get them into jobs. That is surely what we must be about. I hope we can bring a resolution to this issue. I thank the Minister of State for her common-sense reply and praise her for her involvement in the process.

Deputy Kathleen Lynch

When agencies work for the common good, although I think we have lost that concept of the common good, and we have a great need on one side and people prepared to work on the other but there are barriers in their way, there must be a flexible approach in order that we can do things in a more timely and speedy manner while still maintaining public safety. To build up resources to meet demand, we must create that type of flexibility within our systems.

Deputy David Stanton

I thank the Ceann Comhairle for allowing me to raise this Topical Issue matter, and I thank the Minister of State for being present. Millions of doses of the vaccine Pandemrix were administered across Europe in 2009 and 2010 as a result of the response to the global H1N1 swine flu pandemic at the time. Studies have since demonstrated that this vaccine causes narcolepsy at a rate of between 1:16,000 and 1:50,000 doses. The disorder is also known as hypnolepsy. It is a chronic neurological disorder involving the loss of the brain's ability to regulate sleep and wake cycles normally. Another common symptom of narcolepsy is cataplexy which is a sudden and transient episode of muscle weakness accompanied by full conscious awareness typically, though not necessarily, triggered by laughing or crying and emotions such as terror.

This is a serious, lifelong and incurable neurological condition. The resultant sleep deprivation triggers the desire for irresistible sleep during the day. The Minister of State might confirm the figure but I understand approximately 70 people are believed to have been affected by the vaccine in Ireland. SOUND, a support group for sufferers of unique narcolepsy disorder, holds regular meetings. One of its concerns is the need for increased co-ordination between Government and State bodies when dealing with sufferers of the condition.

The reason I raise this matter is to ask the Minister of State to do some work on this area. A particular concern is the difficulty in accessing health and education supports. SOUND has suggested the establishment of a working group comprising representatives of relevant Departments, SOUND itself and possibly others who have experience of the condition. The working group would examine how supports and services could best be delivered to victims from early age into adulthood. The issue seems to be that the people who suffer from this disorder have to fight for everything. An expertise or understanding among many as to what goes on is required. It is a serious condition and one which has a huge impact on people's lives, many of whom are young. Will the Minister of State examine the possibility of drawing together the agencies? Supports are available in the HSE and these people are doing a lot of good work. There are four co-ordinators. However, as I understand it, they have no authority outside of the health system although such is required.

There is also a need for support for people over 18 years of age. People may have left secondary school and are going on to third level education. They also need continuous support. Getting the points to access third level is an issue as well. It is very difficult for people with this condition, who may have been grade A students prior to getting it, to study because they are chronically tired and always falling asleep. They need extra supports when studying and doing exams. Supports for travel are also required. The Minister of State mentioned young people wanting to travel.

There is also the issue of medication. Certain drugs, called orphan drugs, are available but not necessarily in pharmacies. Work needs to be done in this area too. I am interested to hear what the Minister of State has to say on this matter. I am seeking that awareness would be raised as well as seeking more support and, most important of all, co-ordination of the agencies under the aegis of Departments in order that these people can live the best lives possible.

Deputy Kathleen Lynch

I thank Deputy Stanton for raising this issue as it provides me with an opportunity to update the House on the matter. It is a serious issue. I acknowledge the impact on those diagnosed with narcolepsy who had previously received a pandemic influenza vaccine as well as the impact on their families. As Deputies are aware, immunisation is a simple and effective way of protecting children against certain diseases. It has saved more lives than any other public health intervention, apart from providing clean water. In spite of the obvious benefits that come from vaccination I acknowledge that there can be serious adverse outcomes for a small number of people arising out of vaccination.

More than 1 million doses of pandemic influenza vaccine were administered in Ireland during the pandemic. The Health Products Regulatory Authority is the statutory authority for licensing and safety of all medicines. As of 25 May the HPRA had received 74 reports confirming a diagnosis of narcolepsy in people who had previously received pandemic influenza vaccination. The priority of the Minister for Health and the HSE is that the individuals and families affected receive appropriate health care and supports. Therefore, the Department engaged with the HSE and the Department of Education and Skills along the lines suggested by the Deputy to ensure the provision of a range of services and supports on an ex gratia basis. The ex gratia health supports provided include clinical care pathways to ensure access to rapid diagnostic treatment and ongoing clinical review; multidisciplinary assessment led by clinical experts which allows for the appropriate individualised health and educational supports to be put in place; counselling services for the individuals and their families; discretionary medical cards to allow unlimited access to general practitioner care and any prescribed medication; and ex gratia reimbursement of vouched expenses incurred in the process of diagnosis and treatment, physiotherapy, occupational therapy and dental assessments.

The HSE's advocacy unit liaises with service and support providers and other Departments to facilitate access to required services. Staff from the unit are in regular contact with individuals affected and regularly meet representatives of Sufferers Of Unique Narcolepsy Disorder, SOUND.

Regional co-ordinators have been appointed to assist individuals by providing advice, information and access to local services. It is acknowledged that treatment and individual medical needs may have to be reassessed over time. Consequently, the services and supports provided are reassessed on an ongoing basis to take account of any changes in the individuals' conditions and circumstances. As Deputies may be aware, legal action has been initiated by 28 families alleging personal injury in which they are claiming the development of narcolepsy resulted from the administration of the pandemic vaccination. It would be inappropriate for me to comment on any of these cases. I acknowledge the impact on the lives of the people affected by narcolepsy and on their families and reiterate my commitment to the ongoing provision of appropriate services and support.

Deputy David Stanton

I thank the Minister of State for her response and for acknowledging the fact that this is a terrible condition brought on by the vaccine. I acknowledge the fact that vaccines are important and save many lives. This is an unintended side-effect of what happened.

A total of 74 people have been affected in Ireland. I understand a centre of excellence was supposed to be established in Temple Street. Can the Minister of State advise on the position and what progress, if any, has been made?

This was brought to my attention initially by parents of a student who has been affected and impacted by this particular condition. The student's life chances have been severely impacted in a negative way because of it. The student may not be able to attend university now because of the difficulty in studying and getting the points. Perhaps the Minister of State might have a discussion with her colleague in the Department of Education and Skills to review the matter and consider whether the students who are suffering from this condition through no fault of their own may be given some provision whereby they could attend university. Going to university was the dream of the student in question. This student wanted to attend university but is now concerned that this might not happen only because this condition was brought about by the vaccine administered at the time of the pandemic in the country.

It is a serious condition with a serious impact on people. Will the Minister of State comment on the need for more co-ordination - this is the main thrust of what I am raising - across Departments and agencies with respect to this condition as well as more information and access to international expertise? The number affected is small but the impact on these people, as the Minister of State has acknowledged, has been absolutely vast. Lives have been changed radically. Whole families have been impacted. Some people cannot be left on their own because of the condition. There is also the fear and concern of getting cataplexy and other conditions that go with this. I look forward to the final response of the Minister of State.

Deputy Kathleen Lynch

This condition has a wide-ranging impact in terms of the ability to drive, travel alone and live independently. It has a major impact which is unimaginable. Higher education access and supports are available. Students with narcolepsy can access the disability access route to education, a college and university scheme which allows enhanced access to third level education for pupils with disabilities. Further details are available and I will make these available to the Deputy. Examples of some of the supports at third level include priority registration. Students with disabilities can be allowed to register earlier than general registration in each academic year. They can access recordings of lectures on audiotapes and transcriptions of recorded audiotapes of lectures. A range of supports is available.

Deputy Stanton's point is well taken in terms of the co-ordination because this is a lifespan issue. Not alone is it a lifespan issue but it is across all the areas of society that we expect to access and live through.

I will set out the arrangements for reimbursement on an ex gratia basis, including those for vouched expenses incurred, because they are important. General practitioner visits are covered by the medical card. Consultant visits, hospital charges, prescription costs, opticians visits, dental costs, some costs associated with occupational therapy assessment and complementary therapies - in some instances these can be of help - travel costs to and from hospital and finally consultant appointments are included. Subsistence expenses have to be accompanied by receipts as do accommodation costs. A range of supports are in place to support people but only because it is such an overwhelming condition when it occurs unexpectedly, as it has in this instance. I will furnish the Deputy with the background briefing note. It may be of interest for those affected.