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Dáil Éireann debate -
Tuesday, 23 Sep 2025

Vol. 1072 No. 3

Saincheisteanna Tráthúla - Topical Issue Debate

Flexible Work Practices

Ireland is a leader in remote working, and that is not by accident. Approximately 15% of people in Ireland work remotely on a full-time basis. That compares with an average of just 10% across Europe. Access to any form of hybrid or remote work stands at 37%, which is also higher than the European average. I want to speak specifically about the benefits of fully remote and locationless work, distinct from hybrid models. Hybrid arrangements, while highly valuable, still require proximity to the office and, therefore, have limitations on where employees can live. Fully remote work, however, opens up opportunities to every corner of the country, bringing the same high-quality job to Boyle in Roscommon as it does to Blanchardstown in Dublin West. It means that where you live no longer limits the work you do.

According to Grow Remote, the average salary of remote workers in Ireland is €63,000, which is significantly higher than the €43,000 average in the five lowest income counties. For every remote job, there is an additional 0.7 jobs created indirectly in the local economy. Securing more of these remote roles locally not only strengthens the local economy of towns and villages but also plays a vital role in driving balanced regional development across the country.

Of course, it is not just about regional balance and renewal. On a personal note, as a mum of two children who lives in Dublin, I do not know how I would have managed to get elected or to keep up with the always-on nature of political life if my husband did not work remotely. Remote work has given us the flexibility to juggle school drop-offs and pick-ups and still be present when it matters. It has allowed us to be the parents and professionals we want to be. Flexible and remote work arrangements have contributed to record levels of labour force participation. A recent Department of Finance report credited these arrangements with increasing the number of women in the workforce despite the ongoing challenges in childcare provision.

Our success has not happened by chance. It has been driven by targeted policy. Our Rural Future rolled out nearly 400 connected hubs across the country. We had the making remote work strategy, which included Europe's largest State-funded remote work training scheme through Grow Remote, equipping workers and SMEs with the skills they need. Of course, Ireland's digital connectivity strategy will deliver high-speed fibre broadband to over 1 million homes, farms and businesses by 2026, which is ahead of schedule. We need to protect and grow that success. Remote work needs to continue to be supported by targeted policy.

There seems to be a global rowing back on remote work, often driven by hunches rather than evidence. Some argue that remote workers are less productive but studies, both at home and abroad, simply do not support that claim. For every remote job posting, there are more than twice as many applications compared with office-based roles. Workers want it and employers who want to attract top talent will continue to offer remote options. What comes next?

The four-year-old making remote work framework has been successful but we now need a new national strategy that treats remote work as a pillar of job creation alongside foreign direct investment, FDI, and indigenous enterprise. That strategy should embed remote work into national job targets. We should create a unit within our enterprise ecosystem to attract international locationless jobs to Ireland. We must improve data collection so we know which jobs are truly remote, who is benefiting and how we can spread that. We should deliver a national remote work skills training plan for workers and SMEs to ensure that remote work is as accessible as possible. We need to continue investment in digital infrastructure and community hubs. If we secured just 10% of the 100,000 fully remote jobs currently advertised across Europe on a monthly basis, it would generate an additional €100 million annually to the Exchequer.

I thank Deputy Currie for raising this important issue, which I am taking on behalf of the Minister, Deputy Burke. As the Deputy is aware, there has been a significant long-term shift in attitudes to remote and flexible working among both employers and workers throughout the country since the pandemic in particular. Acceptance of remote and flexible working is high and the evidence suggests that they are here to stay. The most recent data from the Central Statistics Office shows that in the second quarter of this year, over 1 million people were reported to be working from home at least some of the time. Within this, over 500,000 people were usually working from home, down from peak levels of close to 775,000 in 2021. These are extraordinary numbers.

The Government is committed to facilitating remote and flexible working in a way that maximises their economic, social and environmental benefits, and the Department has worked with colleagues across government to develop and deliver all 15 actions outlined in the strategy to which the Deputy referred. Actions delivered under the strategy include legislating for the right of all workers to request a remote working arrangement through the Work Life Balance and Miscellaneous Provisions Act, publication of the code of practice on the right to disconnect, and significant investment in Ireland’s national hub network and broadband infrastructure.

In 2022, research undertaken by the Department found that remote working was likely to have a positive impact on the Irish economy and society. The research examined the impact of remote working on several key policy areas, finding positive effects on the economy and society, including enhanced labour and employment opportunities for cohorts traditionally more distant from the labour market. The Minister, Deputy Burke, would highlight, for example, the contribution of flexible and remote working arrangements to achieving Ireland's record levels of female labour force participation, as the Deputy mentioned, and, in turn, record employment rates overall. For context and to emphasise this point, the most recent labour force survey data confirms that our policies are working, with record numbers of people in employment. There were 2.8 million people at work in the second quarter of the year, an annual gain of 63,900 jobs. Since 2020, we have added approximately 660,000 extra jobs. These are exceptional numbers and remote and hybrid working has helped.

The programme for Government recognises the contribution of remote and flexible working to achieving our strong and inclusive labour market and reaffirms our commitment to promoting flexible working arrangements that benefit both workers and employers.

The Minister of State has confirmed what I had set out, that Ireland is a leader in remote work.

We cannot take that for granted, however, particularly when we see announcements about companies rowing back on hybrid arrangements. There are great benefits to diversifying the tax base while revitalising local economies and communities. There are 100,000 remote jobs advertised on job sites across Europe monthly. We can continue to position Ireland as a leader in remote work, but we have to actively target the jobs. We can do that by creating this pillar as part of our job creation strategy. We have FDI, Enterprise Ireland and IDA Ireland but we can focus on landing more remote-work jobs in Ireland because of all the benefits that brings to local economies and communities.

Grow Remote has published its pre-budget submission for 2026. It is actually more of a policy document. It goes into the detail required to bring our remote-working policy to the next level, and it does include enhancing skills. It covers continued investment in digital infrastructure and community hubs. London School of Economics recently said that to make remote work more inclusive, governments and employers should focus on reskilling, promoting remote-capable sectors outside cities and improving digital infrastructure. Ireland is already leading the way. Let us keep going and capture the opportunities others are leaving behind.

The Minister has mentioned the upcoming Working in Ireland survey, which the Department has funded. About 5,000 people, north and south of the Border, have been surveyed. The Minister understands the survey has been completed and we can expect the research output in the coming months. We anticipate that there will be a lot of information on a range of labour market issues in this area, and this will be a useful input into the debate on where policy needs to focus. Certainly, the Minister will come back to the Deputy on that, taking into account the matters she has raised in the context of the forthcoming budget.

Air Services

I have lost count of how many times Waterford Airport has been raised over the last number of years in the Dáil Chamber. I have certainly raised it dozens of times. A meeting took place between Government representatives, the Minister for Transport and members of the board of Waterford Airport a number of months ago. There was a lot of frustration in Waterford following that meeting because, after years of business cases, more information being sought, further information and clarification, the people of Waterford saw funding going to other airports, in Cork, Donegal, Kerry, Shannon and, obviously, Dublin. Waterford seems left behind again. The frustration was over the fact that more information and another business case were sought for Waterford Airport. The situation has become ridiculous in that it was 2019 when a previous Minister for Transport, Shane Ross, actually signed off in principle that the State would fund the airport. A lot of work has been done since to provide the Department with countless clarifications to a previous business case that was submitted, and the people of Waterford are asking themselves what is going on and why the airport in Waterford cannot get a fighting chance. Everybody knows that either the runway happens and different types of aircraft can take off, which means we have a chance to have commercial activity at the airport again, or it does not happen and the airport closes. That is the stark reality facing us.

We want to have the same opportunities as any other region. Three local authorities – Kilkenny, Wexford and Waterford – are putting very serious money on the table. We also have private sector consortia putting money on the table. Those who have so far come empty-handed in terms of money, albeit with many promises, are the Department and Government. I ask the Minister of State again whether he can set out whether the Government is going to support the airport. When will he deliver the funding?

As my colleague Deputy Cullinane has laid out, this is not the first time the two of us, as Sinn Féin representatives for Waterford in this Chamber, have raised this. I believe the Minister of State was here the last time we raised it as a Topical Issue, just a short few months ago. We did so because of the demand and the urgent need for the Government to come to a decision on this.

We have the vista of Waterford – the economic engine of the south east, a region that has been left behind, neglected and left short of funding, investment and IDA Ireland visits for far too long – being without an airport that can actually cater for scheduled services. The solution is to build the runway and for the State to invest in the same way it invests in airports in other regions. The indignity or insult added to the injury of the decades of neglect is to see Cork Airport, a fine airport with good rationale for investment, getting a huge amount of public money for a new VIP lounge and additional retail space when we in Waterford do not have a runway that can cater for the commercial aircraft and scheduled services we need.

In South East Technological University, SETU, and the Walton Institute in Waterford last week, I was at meetings with ambassadors and diplomatic staff from six embassies – namely those of the United Arab Emirates, the People’s Republic of China, Britain, Belgium, Switzerland and Canada – to consider international innovation and best practice, including in academia, business development, and research and development. One of the core components we are missing in Waterford is transport connectivity through the airport. I implore the Minister of State, in the name of fairness for the south east, regional balance, economic development and jobs, to make the decision. He should bring this message back to the Minister, Deputy O'Brien. Let us make a decision to invest in Waterford Airport now.

The Government does support Waterford Airport. I assure the Deputies that the Government is committed to working with all stakeholders to see the Waterford Airport project to lengthen and widen the runway progress. In line with this commitment and the requirements under the Government’s infrastructure guidelines, Waterford Airport was invited earlier this summer to submit a preliminary business case to the Department of Transport. As the Deputies will be aware, the infrastructure guidelines set out the value-for-money guidelines for the evaluation, planning and management of public investment projects. These arrangements apply to all public bodies and all bodies in receipt of Exchequer capital funding of this nature.

In relation to the timeline around the development proposal, it was in fact 2018 when Waterford Airport brought forward its proposal for an expanded runway and related services. I understand this proposal was in the form of a letter to the Department of Transport with a one-page overview of the projects proposed, which included high-level indicative costings. Following this, as mentioned, in June 2019 the Government gave approval in principle to an expression of support for the expansion proposal and to providing Exchequer funding of €5 million towards the project, which was then estimated to cost €12 million.

Government support at that time was contingent not only on €2 million in local authority funding and €5 million in private investment funding, necessary to complete the project, being committed and any risks relating to cost escalation being borne by the non-State investors, but also on full details of the project being provided to the Department of Transport for appraisal. Despite engagement with the airport over the intervening period, this detail remained outstanding from Waterford Airport until 13 December 2023. I understand the Department prioritised the necessary assessment of the detail provided in line with the requirements under the Department of Transport’s transport appraisal framework. This framework provides guidance to ensure investment schemes in the transport sector can comply with the Government’s infrastructure guidelines. The Deputies will be aware that this detail outlined that the project costings have increased substantially above the original estimated cost of €12 million, to €27 million, deviating significantly from the original proposal. The Exchequer contribution sought has risen from €5 million to €12 million.

It needs to be recognised that certain conditions attached to the Government decision of 2019 have not been fulfilled. However, the Government is committed to working with all stakeholders to see this proposal progress and, as such, Waterford Airport has been invited to submit a preliminary business case for consideration.

This was all discussed in detail when the Minister, Deputy Darragh O’Brien, met with his Government colleagues the Ministers of State, Deputies Mary Butler and John Cummins, and the CEO of the local authority on 2 July last.

Given the Exchequer funding being sought by the airport to support this proposal, the Department of Transport's role is as an approving authority. It will be the airport's role, as the sponsoring agency, to ensure that the necessary detail and evidence are provided in its business case to demonstrate that sufficient demand and industry commitment exist to facilitate regular scheduled passenger services. The Department of Transport will work with the airport in its development of the business case and is available at all times to engage with the airport. Any business case will be assessed as a matter of priority once it is received.

The Minister of State might be familiar with the phrases "Build it and they will come" and "Show us the money". He stated that it is up to the airport "to demonstrate that sufficient demand and industry commitment [should] exist to facilitate regular scheduled passenger services". That can only be determined when there is a runway. If there is no runway, no airline will come in. At the moment, jets cannot take off from Waterford Airport. It is turboprop planes only. That is the difficulty. If we get a runway extension, we have a fighting chance. The Minister of State talked about sponsoring agencies. There are three local authorities, not just Waterford. Kilkenny and Wexford are putting serious money on the table. This is needed.

Games are being played here for far too long. I said a number of months ago this was a case of sending a fool further. Every time we come in, a Minister stands up and the first words out of that Minister's mouth are that the Government is supportive of Waterford Airport and the runway extension. Again, as I said, show me the money. Show the people of Waterford the money. Give us the opportunity to have a fighting chance to be able to get that commercial activity. It is the Government that is holding up progress, not private sector sponsors, or the airport or local authorities. It is the Government that has, so far, refused to put any money on the table. I still hear nothing tonight from the Minister of State that tells me that will change any time soon.

From listening to the Minister of State and scanning his speech as he read it, it strikes me as a bad mash-up between "Yes Minister" and "Computer says no". It is shifting the goalposts every single time. It is putting unfair demands on Waterford and the south east that simply are not placed on other regional airports around the State. No other regional airport is forced to jump through these hoops one after another. The Minister of State is quite right to point out that the costs have risen at an alarming pace in the time that has been wasted because the Government will not invest. It will not do what is needed here, which is to invest in an airport runway extension that means this airport can actually stand up and take the kinds of flights we need into the south east.

I said it before and will say it again: this is about regional development. We need the investment. We need the Government to make the decision, and stop prevaricating and wasting time, because the costs are only going one way. The longer this is let go, the higher the costs will ultimately be. Let us invest now and invest well in Waterford.

If the Government broke the public spending code, or the infrastructure guidelines in this case, or decided to spend money without doing a proper analysis and proper business case, you guys would rightly be down at the public accounts committee castigating the Government. The Government is committed to working with all stakeholders to progress this project when the business case is received and reviewed.

We recognise we are an island nation. We have a dispersed population and an open economy. We need good connectivity with the rest of the world within and outside the country. We are an exporting country. We know that we need all this, but the infrastructure guidelines set out the value-for-money guidelines for the evaluation, planning and management of public investment projects. This applies to all public bodies. This is not just a Waterford thing. All public bodies and everybody in receipt of Exchequer capital funding are required to comply with this. That is why the public accounts committee is there, to hold the Government to account on items such as this. Some may say private investment is there so the State does not need to look as closely, but the State has a different role from that of private investors. We are happy to work with them but we have different functions and different objectives. The State wants its investment protected also. There are also state aid rules from the European Union.

At the meeting on 2 July I mentioned, the airport authorities were advised that the Department of Transport will continue to work with them on the development of the business case, which will be prioritised within the Department once it is received. Any potential support will be considered then, when the necessary appraisal is done under the infrastructure guidelines.

Mental Health Services

The waiting list for children needing psychological treatment in County Kerry, and in the Cork-Kerry region, as recently outlined by the HSE for the period 2022 to 2025, shows a growth pattern that only be described as highly horrendous. The list grew by 470%. These figures appear to have spiralled out of control during that timeframe. There is widespread fear and frustration in the families of those affected.

It is of the utmost importance that the Minister of State outlines to us the valid reasons why we find our healthcare community in this horrendous position and for the emergency solutions that are being implemented, along with timeframes for drastic improvements. Do the Minister of State and the Minister have concrete plans for the employment of sufficient additional professionals suitable for the roles that are lacking in Cork and Kerry? Will provision be made in the upcoming budget for the very significant increase in funding for this obviously under-resourced health service in Kerry and Cork? Is the Minister of State satisfied that the steps being taken will show big improvements very quickly? How quickly? Is he satisfied that the steps being taken will show major improvements in this area?

The shocking figures for Kerry show that at year end 2020, the number of children in Kerry registered as waiting was 217. The figure for 2025 is 1,022. Yes, 1,022, which is an astronomical rise of 470%. Does the Minister of State agree that it is indefensible that the HSE allowed this trend to continue unchecked for over four and a half years? Is this down to bad management on the part of the HSE? Is the option of replacing the management team responsible being considered? We have already witnessed the CAMHS fiasco in both south and north Kerry and in other parts of the country. Our vulnerable children who are suffering from psychological issues need to be seen, diagnosed and treated with speed, professionalism and efficiency. This does not appear to have been the case over this five-year span.

I trust that as the Minister of State is taking on tonight's session, he will make his views strongly known to Cabinet in the budget formation talks as the voice of these children, who are the responsibility of all of us. I trust that his colleagues in Cabinet will see, understand and heed the most dangerous position these children have been allowed to fall into through no fault of their own. This situation has the potential to damage an awful lot of these children, who await somebody to simply see what is wrong and what has to be done to make it right. Patients and their families will endure an extreme amount to see their loved ones getting better, but waiting lists should be avoidable.

I thank the Deputy for raising this important issue. I am taking this Topical Issue on behalf of my colleague the Minister for Health, Deputy Jennifer Carroll MacNeill.

Primary care psychology plays a central role in providing care and treatment to both children and adults in the community and, particularly, in offering the opportunity for early intervention for children and young people. The increased pressure and demand on primary care services, and on primary care psychology for children and young people in particular, are related to the increase in referrals and the increasing complexity of presentations requiring longer intervention times, as well as staff shortages and ongoing recruitment challenges in the community. These factors all contribute to an increase in waiting lists for primary care services, including primary care psychology services across the country, including in Cork and Kerry.

To address long waiting times at a national level, the Department of Health is working with the HSE on a focused programmatic approach to primary care waiting list management to put in place considerable standardised infrastructure to support systematic responses to primary care waiting lists.

This will facilitate a greater understanding of the scale and drivers of demand; allow for improved planning, interventions and investment considerations; and support the most efficient use of capacity. As well as looking at the long-term changes that are needed, the programme of work will also examine what can be done to address those waiting over a year on access to primary care therapies. This approach involves three main workstreams that aim to improve access to primary care therapy services by analysing activity and maximising capacity, developing national measures to reduce long wait times and creating a consistent management protocol for referrals and waiting lists to these services.

At a regional level, HSE South West has highlighted significant work that is currently under way to enhance access to primary care psychology in Kerry. In June 2025, the regional executive officer appointed a regional director of psychology with a specific focus on reviewing psychological services, including workforce planning, reviewing the service provision model and considering other psychological support services that can meet the needs of the population.

Progress has also been made in relation to advancing recruitment to fill allocated vacancies in the Kerry primary care psychology service. National primary care funding was allocated to HSE South West mid-2025 to initiate waiting list initiatives to increase access to psychological intervention for children and young people on existing primary care waiting lists.

In terms of increasing capacity, there has also been a significant increase in 2025 for doctoral training places for psychology - clinical and educational programmes - in the region, with a total of 18 trainees funded by HSE South West who commenced in September 2025. This is part of a sustained trainee programme that now has 45 trainees in the system over a three-year cycle. All graduates will be offered a permanent post in the region on completion of training, capitalising on the investment and thereby improving staff to population ratios and reducing waiting lists. HSE South West has also highlighted several key initiatives currently in process and aimed at improving access to services.

The establishment of the new single point of access working group is supporting a more efficient triage of children to ensure that they access the most suitable service in a timely manner and is reducing waiting list duplication across primary care psychology, CAMHS and CDNTs. The HSE South West child psychology service waiting list improvement initiative working group has also just been established under the regional director of psychology. Its three main priorities regarding aiming to improve access to psychological services for children in the region are workforce planning and development, waiting list and capacity solutions, referral pathways and demand management and clinical service model innovation. I will bring the points raised by the Deputy to the attention of the Minister and the Department.

As I outlined earlier, the figure for 2025 is 1,022. The list grew by a massive 470% from 2022 to 2025. These figures appear to have spiralled completely out of control during that period and there is widespread fear and frustration within the families of those affected. This cannot be allowed to continue. As I stated earlier with regard to CAMHS, we have already witnessed the fiasco in north and south Kerry. We cannot allow a repeat of this disaster. I believe the Minister of State will make every effort to ensure that these issues will be addressed in the upcoming budget, with proper staffing levels and adequate resourcing. I plead on behalf of the children of County Kerry, their parents and the children of Cork and the rest of Ireland that everything possible be done to address this very serious matter. I believe it is in the interests of all of us here in this Parliament to address this most serious issue.

The Minister recognises fully the frustration of people in the local area with long waiting times for certain services and realises that much more needs to be done to fill local vacancies, address waiting lists and ensure consistent, equitable and timely access to primary care services. Since 2021, the primary care psychology waiting list initiative, which targets removals from the waiting list of those under the age of 18 waiting longer than 52 weeks to access services, has been operational. To date, the initiative has successfully removed 12,000 clients from primary care psychology waiting lists nationally. Funding for the continuation of this initiative will be allocated as part of the Estimates 2026 process. Outside this, a joint Department-HSE programmatic approach to primary care waiting lists is also under way to develop short-term and long-term solutions to long waiting lists for primary care services.

The Minister wishes to again assure the Deputy that this Government remains committed to the further development of primary care and community healthcare services as part of the programme for Government. HSE South West is also working to reducing the waiting lists for primary care psychology as evidenced by the initiatives to which I previously referred, including advanced recruitment efforts, building capacity for the future and the introduction of bespoke waiting list initiatives targeted at children and young people who need to avail of this very important service. I will bring the matter raised by the Deputy in terms of the upcoming budget to the attention of the Minister and the Department.

Nursing Homes

I am glad to see the Minister of State back in here because we spoke about this in March so I am sure he is fully on top of it and has some good news for me. This issue is very personal for me. I have said here before that I fought for this. St. Conlon's Nursing Home was very personal for me. Many members of my family had their last days there. It provided an incredible service and the staff were amazing. However, HIQA wanted to close it because it was not meeting requirements. We had to fight to get funding and a site. I had to work with the HSE, in particular Joe Hoare. We found the site. I got the funding when I was a Minister. Construction started in May 2021, €24 million was spent and it was ready in early 2024. All that is positive.

This is where the problems start. I have visited the site. Nobody was being transferred. We were waiting for 18 or 19 people to be transferred from St. Conlon's to a 50-bed state-of-the-art facility. A total of €24 million of taxpayers has been spent and it is lying idle. As the Minister of State is aware, the HSE took it over. It is a step-down facility. I, along with Councillors Louise Morgan Walsh and Fiona Bonfield and Independent Councillor Seamus Morris, marched with thousands of people through the streets of Nenagh protesting about the fact that so many elderly people could not get access to that home. Some of those who protested have now passed. Those who were there have lost out on using this facility despite paying their taxes all their years. There are now quite a number of people in locations around north Tipperary, particularly next door in the actual hospital, who are high dependency - people who need three attendants to lift them out of a bed - who have been there for months and need to get into this nursing home.

Following on from what the Minister of State said to me last March and in light of the fact that Bartra has left the actual facility it was running with the HSE for UHL, when will this open? I do not want to know when the 18 residents in St. Conlon's will come across. I want to know that only as a component of this answer because the regional executive officer told me and others that this would come back in a year. I was also assured at a meeting attended by his colleagues and about which the Minister of State would have been informed when we have our regional meetings in Catherine Street in Limerick that they had the whole year to get the resources in place to make sure staffing was available, so I do not want to hear anything about staffing not being available. They had a whole bloody year to get the people. There are queues of people on panels to fill this nursing home. Bartra, which was wrongly put in there to run a step-down facility, has now finished.

This building is empty. HIQA takes weeks. It would probably take minutes to sign off on this as a nursing home again because it is state-of-the-art. It is incredible. We are very proud of it.

I need to know when the 50 beds so many families and so many people need opened will open. We have suffered so much in Nenagh and north Tipperary when it comes to health services. When will this state-of-the-art nursing home, which should have been opened 18 months ago, be fully opened and fully staffed, given the commitments by the HSE and by the Minister of State here previously in March that it would happen in the third quarter of this year? It is now September. I want to know not just when the 18 residents of St. Conlon’s will transfer and the staff will transfer but also when it will fully open, and I do not want to hear any issues about staffing or HIQA or anything else.

I thank Deputy Kelly. I know of his keen and genuine interest in this particular subject. I will deal with the questions he actually raises. I have an answer there for him. I am going straight to the capital programme. As part of this capital programme, older persons' services in north Tipperary are being enhanced by the opening of a new state-of-the-art 50-bed community nursing unit in Nenagh to replace St. Conlon’s Community Nursing Unit. As the Deputy said, there was a €24 million investment. The new Nenagh community nursing unit will provide a high-quality living environment which will be in line with all regulatory requirements.

On the issues the Deputy particularly raises, as he is aware the HSE has vacant possession now of the new nursing home. It has applied to HIQA for registration as a designated facility for older people. HIQA is currently assessing the application. It would be expected that will be processed quickly. As part of the process, which I want to work with, the first element is that the residents who are currently in St. Conlon's will be moved to the new nursing home. They will be facilitated in this regard once HIQA has done the inspection and obviously issued the licence to operate as a nursing home. These people will then be able to pick the rooms they wish to pick. They will have first choice from what is there, which is only appropriate. The staff who are currently in St. Conlon's will move over with the residents to the new nursing home. I am advised by the HSE that it has the requisite staff and will have the requisite staff to scale up to the full complement of 50 residents in the nursing home.

The process at the moment is the HSE has taken vacant possession of the new nursing home, it has applied to HIQA in the past week for a licence and HIQA is currently assessing the application. Once HIQA grants the application - I hope that will be relatively soon but obviously the Deputy will appreciate it is independent in the way it assesses applications - then the residents currently in St. Conlon's will move to the nursing home along with the staff. Then the HSE will proceed to scale up to the 50 beds. It advises me it has the requisite staff to ensure that can happen. I hope that will happen relatively quickly.

As Deputy Kelly mentioned, to alleviate the significant pressures at UHL the decision was taken to use the new Nenagh community nursing home building on an interim basis as a step-down sub-acute and rehabilitation facility for UHL, run by a private provider with expertise in such services. The Deputy will appreciate one of the reasons was to dovetail that with the opening of the new 96-bed unit. That will happen relatively quickly, so the intention is the new 50-bed nursing home will be up and running relatively soon after HIQA has granted the registration. The first step will be to get the existing residents in St. Conlon's over and then to scale it up to 50 beds. The HSE has the requisite staff in place to do that. The HSE is advising me of that.

The Minister of State is one of the more diligent Ministers of State when it comes to trying to be genuine in his answers. I have been asking parliamentary questions for months looking for a date for when this is to be opened. The Minister has not provided me with that and it is the Minister who is responsible, not the HSE. The Minister is answerable to this Dáil in this Chamber and has refused to answer that question. I want that stated on the floor of this House. I have had to chase the Ceann Comhairle.

The Minister of State was not able to provide a date, or a month, when the 50 beds will be open. Everything he has said there I know. It might be extra information to him, and I appreciate that, but I know it. I know the HSE has gone to HIQA. By the way, this was the same HIQA which was meant to have the review into acute services in the mid-west out this month, which we still have not seen. The review by HIQA of turning this into a nursing home should take as long as it does to snap my fingers. It is the most modern building in Ireland when it comes to nursing homes. At €24 million it would want to be. The issue is when the 50 beds will be available to the 30 or more people from around the locality who desperately need it, because they are stuck in hospitals for months at €2,000 per night to the taxpayer. When will it be open? I need to know that.

I understand the staff will transfer from St. Conlon’s. I understand the staff will come from the panels. I understand there are the people who were working for Bartra - local people and people who have come from all over the world - who have been treated absolutely disgracefully by Bartra. It was put out that they would in some way be able to do this way of the transfer of undertakings and protection of employment, TUPE, regulations. They will have to apply to the HSE now to get on a panel to get in there. Bartra should be looked into by the Minister of State’s Department and the HSE to see how that happened, but that is another issue. I want to know when this will open. That is all I want to know. Give me a date, give me a month. That is all I want to know. Please do that, because I have been here twice now with the Minister of State and I have not got that answer. I really need to know it because there are so many people in the locality who need this open because not every nursing home will take people who are high-dependency.

I appreciate the frustration of people, including the residents of St. Conlon's and the people in the area. I have gone through this intensively and there is a process. There is an application before HIQA. It takes an average of about ten working days to assess an application. The application has gone in within the past week. I cannot pre-empt the outcome of the registration by HIQA, but it is normally a ten-day working cycle, and once that is complete, the residents who are in St. Conlon's will be brought to the new nursing home to pick out the rooms they wish. I regard them as a priority.

I am not in any way questioning the Deputy, but on the process, they have been waiting a long time. Once they are moved over along with the staff, the HSE has assured me locally, and I have made very up-to-date inquiries, that it has the resources staff-wise to be able to move and scale up to the 50-bed unit very quickly. Looking at the cycle of it, we are in the month of September and certainly it will not happen before the end of September. I think that is reasonable to say. We are looking, I hope, at it happening in the month of October. However, once again, I have to work within the parameters that are set down. The key element at the moment is for HIQA to give registration. Once the registration is granted, everything else will move along at pace. We will then have the new 50-bed community nursing home unit in Nenagh up and running.

I expect that will happen.

I hope the Minister of State is right about October.

I am saying it will not happen in September. I think that is reasonable. While I cannot give a firm date, we would be looking at the period from October on.

Disease Management

I wish to raise the issue of funding for rare diseases. Rare diseases are not all that rare, given that 300,000 people are affected by one rare disease or another in Ireland, involving over 8,000 different diseases. While each individual disease is very rare, as a total they are quite common and have a big impact on people's lives. Often they suffer from a lack of research into their condition which then impacts treatment and the assistance they are able to get.

I want in particular to raise Okur-Chung neurodevelopmental syndrome, which is a rare disease that causes gene deletion. It is associated with a range of clinical features but especially developmental delay affecting language and motor skills. In the data only 300 cases have been identified worldwide with seven people in Ireland affected. It is likely that there are more cases that have not been accurately diagnosed as yet. We have seen that to be the case with other rare diseases with initiatives such as the 100,000 Genomes Project helping to identify a number of previously unidentified cases in the UK. Between the difficulty in diagnosing cases of Okur-Chung and the wide range of symptoms associated with the condition, what parents of children affected by Okur-Chung and patients both need is more research and more information. Many more cases of Okur-Chung and other rare genetic conditions could be identified with more funding for research projects based on whole-genome sequencing along the lines of the 100,000 Genomes Project. With more cases to observe, clinicians could offer better advice and more certainty to parents. With luck, researchers might be able to uncover new approaches to the treatment and management of the condition.

This came to my attention because of a case in my constituency. The mother of a young boy, Leo, came to me. He suffers from Okur-Chung syndrome which has caused him a number of challenges, such as learning disabilities, speech delay, a heart murmur and underdeveloped muscles which only allow him to walk for five to ten minutes at a time. He requires help when using the bathroom. He is also at risk of developing scoliosis. He has hearing difficulties and other conditions. His mother is concerned that her son's health will deteriorate further.

The worst part is that she simply does not know due to the lack of research into rare diseases like this. His doctor did not even know about the disease until it was diagnosed. We know that some of the common symptoms of Okur-Chung are well characterised and can even be treated, but other features of the condition are less well understood and at present there are no treatment or management plans.

There is a fundamental gap in the scientific literature on Okur-Chung as with many other rare diseases, which can only be addressed by funding from the State for fundamental research projects into human development in general and particular rare conditions such as Okur-Chung. There is not a sufficient market here to invite in the pharmaceutical companies on a profit basis; it is too niche to be worth the investment. Instead, we need a people-first approach to researching rare diseases with more appropriate funding for other research into this condition among others so that we can better characterise other features of Okur-Chung in order that individuals and their families can better understand their situation and plan for their lives ahead.

I thank the Deputy for raising this important issue. I am responding on behalf of my colleague, the Minister for Health, Jennifer Carroll MacNeill.

As the Deputy will be aware, Okur-Chung is an ultra-rare neurodevelopmental syndrome with an estimated 160 individuals living with this syndrome globally. Okur-Chung was first identified in 2016 and, as such there is still much we do not know about this syndrome. However, ongoing international research seeks to provide a better understanding of Okur-Chung syndrome and explore possible treatment options.

The recently published national rare disease strategy acknowledges the important role research plays in developing a better understanding of the mechanisms of disease which can enable early diagnosis, earlier treatment and overall better health outcomes for people. Greater knowledge of rare diseases is important for the development of novel therapeutics, treatment strategies and facilitation of more responsive and appropriate services for people living with a rare disease, their families and circle of support. Research is also important for supporting the recruitment, retention and motivation of healthcare personnel who will drive the development of quality services.

Substantial advancements have been made to embed research within Ireland’s healthcare system, and the Department of Health has ensured that research is a key aspect of strategies and frameworks, such as the national rare disease strategy. In Ireland, several organisations have their own specific roles in contributing towards the advancement of rare diseases research.

Organisations such as Health Research Charities Ireland and Taighde Éireann - Research Ireland, have a central role to play in funding and supporting research initiatives related to rare diseases through the provision of grant schemes, co-funding of research projects and programmes and partnerships that prioritise rare diseases.

Research in Ireland is further supported by the involvement of patient advocacy groups such as the Irish Platform for Patients Organisations, Science and Industry, IPPOSI, and Rare Diseases Ireland, RDI, which, through ensuring that research is aligned with patient priorities, advocate and provide a voice for the needs of people with rare diseases and ensure their perspectives are included in research agendas.

Recognising that improved engagement, collaboration and partnership both nationally and internationally with industry, Government, representative organisations, healthcare professionals and academic partners will help to drive strong research and innovation for all aspects of living with rare diseases, the new rare disease strategy recommends that a national rare disease research group be established to provide a structured, co-ordinated, multi-actor and strategic approach to ensuring more high-quality rare diseases research in Ireland. The strategy also recommends that opportunities for rare disease-specific funded research calls, targeting both indigenous research and greater participation in international consortia, be increased, as well as ensuring that healthcare professionals are supported and encouraged to pursue research in rare diseases and provided with the dedicated time to do so.

By streamlining collaboration and establishing stronger relationships between stakeholders through the development of a clear and co-ordinated approach, research efforts can be better integrated into the health system and have greater impact on patient outcomes.

I might just quote from Elizabeth who was in touch with me to let the Minister of State hear her voice.

... I would like you to explain to [the Minister] Leo's everyday struggles (he has autism, a heart murmur, a learning disability, and muscle weakness) these are all due to his ocnds [Okur-Chung neurodevelopmental syndrome] diagnosis I would like you to explain that though deteriorating isn't a noted symptom this is likely due to the lack of research on the small numbers of 300 people worldwide! That I've spoken to other mothers and they are noticing the same deteriorating! One of those mothers is also from Ireland and her son is now in a wheelchair. That we need research on this condition to know what the future holds for our son, having no answers as parents is hard enough without having no answers to give him! We can't tell him if his legs will just keep getting more tired and less able to support him. (This week he has started to fall like his legs have just started going from under him).

Obviously, the Government has announced increased funding for rare disease initiatives, which is welcome. However, on the basis of the current funding the Government talks about nine rare diseases which are being screened for. Obviously, that is a drop in the ocean when we consider the over 8,000 rare diseases affecting 300,000 people in this country. Therefore, we need more funding for research, which is not going to come from the private sector. Research will enable people to be less isolated in their own condition and enable them to see some light at the end of the tunnel to say, "Okay, this is what is likely to happen and this is the treatment and management that can be used to assist me."

I appeal to the Minister of State, in the context of the budget discussions and so on, to ensure that the most possible is provided.

I acknowledge the story the Deputy tells about Elizabeth. Is it her son Leo?

It is called Okur-Chung neurodevelopmental syndrome, OCNDS. Is that the norm?

I appreciate how difficult it is for Elizabeth, Leo and his family. Once again, I thank the Deputy for providing the opportunity to discuss this important matter. As previously stated, it is hoped that through the implementation of the recently launched national rare disease strategy, we can increase rare disease research opportunity in Ireland. Knowing that meaningful research is being undertaken offers hope for the future as well as possibly leading to treatment options.

By building on the work already undertaken through the rare disease clinical trial network, the rare diseases research and innovation catalyst award and through participation in the European Rare Disease Research Alliance, we can foster a cohesive research environment that responds to the needs of people living with rare diseases and clinicians.

Improved engagement, collaboration and partnership nationally and internationally will help to drive strong research innovation for all aspects associated with living with rare diseases. The established national rare disease research group has outlined that a new rare disease strategy will be an important step forward in providing a structured, co-ordinated, multi-actor and strategic approach to rare diseases research in Ireland.

I will bring the case of Elizabeth, and more particularly that of her son, Leo, to the attention of the Minister. I will put that in the context of the upcoming budget as well.

Cuireadh an Dáil ar athló ar 11.32 p.m. go dtí 9 a.m., Dé Céadaoin, an 24 Meán Fómhair 2025.
The Dáil adjourned at 11.32 p.m. until 9 a.m. on Wednesday, 24 September 2025.
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