I thank the Minister for Further and Higher Education, Research, Innovation and Science, Deputy Harris, for coming to the House to deal with this matter. This is about having a national strategy for dealing with haemochromatosis. It is about having equal access to testing, diagnosis, and treatment. I understand that there is a proposal to the National Screening Advisory Committee as regards having a national screening programme. It is something of which we need to be conscious in the sense that, if the illness is not identified and people do not get treatment, they can suffer from organ damage. One in 83 people in this country have haemochromatosis; one in five carry the gene. The problem is that if it is not treated and not identified, it can cause problems to the liver, heart, lungs, and body tissue. Some of the symptoms are chronic tiredness, joint pain and abdominal pain. Those are some, but not all, of the symptoms. There is a simple way of dealing with this, which is by having a national screening programme that would require a simple blood test. I know the Minister was involved back in 2019, when an agreement was reached with the Irish Medical Organisation, IMO, at the time as regards moving the care out of the hospital system. However, that has not worked everywhere and we do not have a comprehensive programme for dealing with it. It is now time to put in place a national screening programme and that we have a national strategy for dealing with it. This is about saving lives in the first instance but it is also about saving the time that is taken up in hospitals where people end up having to be admitted when, had the issue been identified at an earlier stage, they would not need to be in hospital. There is also still the problem where an awful lot of people are still attending outpatient departments in hospitals, which is not necessary because we should be able to deal with this at a local level with GPs. We need to get that done whereby people will not be required to attend outpatient clinics to have the treatment. Obviously, part of the treatment for people with excess iron in their blood is that they have to donate blood. We need to have co-ordination between the GPs, the HSE, and the blood bank and I ask that a national strategy be put in place.
Saincheisteanna Tráthúla - Topical Issue Debate
Health Strategies
I thank my colleague, Deputy Colm Burke, for raising this important matter. I am pleased to respond here today on behalf of my colleague, the Minister for Health.
Hereditary haemochromatosis is a common recessive disease resulting in over-absorption of iron from the gastrointestinal tract. Over time, excess iron accumulates in the cells of organs including the liver, pancreas and heart, causing damage. Research into the condition by the HSE found that one in 83 people are genetically predisposed to develop the disease in this country. The diagnosis, treatment and management of patients living with hereditary haemochromatosis is guided by the 2015 HSE model of care reviews on the disease. The Irish College of General Practitioners has also produced its own guidance document for the treatment and management of hereditary haemochromatosis and it is specifically referenced in the 2020 curriculum for GP training. Early diagnosis and subsequent management are essential to prevent organ damage and to normalise life expectancy.
GPs play a central role in the diagnosis of haemochromatosis, given the symptoms a patient may present with. Typically, a patient with a known family history of the disease may be diagnosed via their GP as families are advised to screen children when they reach the age of 16. Raised iron levels may also be picked up via routine blood monitoring. The upcoming appointment of nine new advanced nurse practitioners for liver services nationally is also expected to help with the diagnosis and management of patients. It is seen as a positive development in this area.
The treatment for the management of haemochromatosis is regular venesection, which involves the patient having their blood taken. This can happen in several settings including acute hospitals, GP surgeries or at an Irish Blood Transfusion Service, IBTS, facility. The Department of Health and the HSE agree that such services should be provided at the lowest level of complexity that is clinically and operationally feasible. Measures introduced in recent years have positively impacted treatment for hereditary haemochromatosis patients.
As Deputy Burke referenced, part of the 2019 agreement on GP contractual reforms and service developments ensures GPs are paid by the HSE to provide venesection for General Medical Services, GMS, patients with haemochromatosis. In 2022, 845 GPs provided 6,864 venesections to GMS patients. This service has improved patient experience as eligible patients can now be managed locally by their GP and no longer have to attend hospitals. Not having to trek backwards and forwards to hospital makes a positive difference to patients.
The Minister for Health is aware that treatment for many patients is still provided in hospital as an outpatient or day case. The Health (Amendment) Act 2023, which came into effect on 17 April, removes the acute public inpatient charge of €80 per day for people. This benefits patients who still have to attend hospital for this treatment. The IBTS also accepts haemochromatosis patients who are eligible to donate blood at its fixed and mobile donation clinics nationwide, subject to certain criteria. This service is provided free of charge to the patient.
The current model of care in Ireland recommends that genetic testing should only be performed in those cases where patients have a raised transferrin saturation or a family history of the disease. Any decisions about changes to our national screening programmes, or the introduction of new programmes, such as screening for haemochromatosis, will be made on the advice of our National Screening Advisory Committee, NSAC. The NSAC is an independent expert committee which I was pleased to found. It makes recommendations to the Minister and the Department of Health on population screening in Ireland. In 2022, the committee's annual for proposals for new screening programmes or changes to our existing programmes included a submission on genetic haemochromatosis. This proposal, along with others relating to other conditions, is currently under consideration by the NSAC. The committee, as Deputy Burke may know, has published its work programme on its website to set out the status of proposals currently being considered. In light of this debate, I will ask my colleague the Minister for Health to keep the Deputy updated and to respond to the suggestion about the need for a national strategy in the context of the work the NSAC is doing.
My concern is that the Irish Haemochromatosis Association's figures indicate that at any one time up to 20,000 people have not been diagnosed. That is why we have the ongoing problem of people developing health problems and suffering organ damage, as the Minister and I have mentioned. Accordingly, why not have a national strategy and a screening programme that would identify people where an immediate family member has already been diagnosed? Much work could be done. There is a benefit to the person who has haemochromatosis but may not have symptoms. Protection is also provided to them in the form of ensuring people do not suffer long-term damage to organs like their heart or lungs. There would also be a huge saving to the health service itself.
As I understand it, the system set up in 2019 is not fully functioning across the country and we need more co-ordination between GPs, the HSE and especially the IBTS. There is a benefit for the IBTS, as part of the treatment involves taking blood from people and that blood is then available to be provided to our hospitals when they need it. That is an important part of this. While there is a cost factor in providing the service, there is also a benefit for the IBTS in getting access to blood, which is something that is required.
I ask that this matter be given priority. I am aware the proposal has gone into the NSAC. I hope it will come forward in the not too distant future with a proposal to adopt what is being suggested here. The Department should also become more involved in developing this strategy.
I thank Deputy Burke for raising this important matter, which affects so many people and to which so many others are predisposed as well. We have objectively seen service improvements for patients with haemochromatosis in recent years. The 2019 GP contractual improvements involved moving services. People sometimes had to go to hospital for services that can now be accessed from the local GP. The plan this year is to hire more advanced nurse practitioners. That, through liver treatment and the management of liver disease, could identify more patients at an earlier stage. From a practical, cost-of-living point of view, my colleague the Minister for Health decided to abolish acute outpatient charges. All these are positive developments.
On screening strategies and where to go next, we took an important collective decision a number of years ago to establish the NSAC to bring in a level of expertise to examine, critique and decide what areas and diseases we should and should not screen for. I am sure the Deputy will be encouraged to hear it is proposed that genetic haemochromatosis will be considered by the NSAC. When that will happen in the committee's work programme is something it will keep updated on its website. The Deputy can receive updates from the NSAC in that regard. The outcome of this process will inform any further steps the Government may take.
I thank the Minister. Is he dealing with the second matter?
I am doing them all.
You are doing them all. Fair play to you.
Public Transport
I thank the Ceann Comhairle for selecting this matter for debate. I thank the Minister, Deputy Harris, for being here in the Chamber in the absence of the Minister for Transport, Deputy Eamon Ryan. I raise this matter to bring attention to the critical issue of public transport in rural areas, especially in my constituency of Mayo. It is imperative that the Government continues to invest not only in urban transport but also in connecting our regions and providing adequate transport facilities in rural areas. While Government has made progress through initiatives like Local Link, which connects our rural areas to local towns, there is still much work to be done. The Connecting Ireland plan from the National Transport Authority, NTA, aims to improve mobility in rural towns and villages, but our focus must extend to improving connectivity in our regions and establishing inter-city links.
There is currently no direct bus service from Mayo to Dublin Airport, or from Castlebar or Claremorris, and the Expressway bus service travels from Ballina only. It serves parts of east Mayo with a connection at Swinford. At this stage, it is deplorable in terms of what we require in order to provide high-frequency public transport to a county like Mayo, which is the third largest in the country. This is a significant inconvenience for constituents who rely on these types of services. I therefore call on the NTA to establish additional bus services to and from Dublin city and the airport to cater for the needs of those in Mayo who wish to avail of these essential services.
Furthermore, the Government's climate action plan includes a commitment to reduce the number of kilometres driven by private cars by 20% and also seeks a 20% reduction in fossil fuel usage by 2030. Achieving these goals in our rural towns and villages is impossible without proper public transport facilities. While there has been a commendable uptake in electric vehicles, EVs, people outside Dublin often need to travel long distances where EVs are not viable.
The provision of public transport is of critical importance to our climate ambitions as it enables sustainable transportation through our public transport system. It connects counties like Mayo to Dublin more efficiently. We need a more ambitious approach around this. There is no reason we cannot increase investment in luxury coach lines with modern facilities such as USB ports, Wi-Fi and toilet facilities similar to those we avail of on rail services. Currently in both rail transport and bus services, there is a serious deficiency for students attending colleges in our cities and towns. It is completely inadequate. While there are plans in place for additional carriages for Irish Rail up to 2025, we cannot wait years for improved services. I call again on the Department of Transport and the NTA for an immediate increase in bus service capacity for our students, the elderly and everyone travelling to and from Dublin city and its airport. The recent acquisition of GoBus by Citylink presents an opportunity to enhance connectivity to Mayo given that GoBus has established excellent services between Ballina, Galway and Dublin. We can leverage this acquisition to provide additional connections for our constituents. I urge the Minister to take this message back to the Minister, Deputy Eamon Ryan, and the NTA to allow the Department to take swift action in addressing the delivery of rural transport provision in areas like Mayo. By investing in improved bus services, facilitating convenient connections and adapting a more ambitious approach, we can ensure our rural communities have the necessary transport facilities. This can also contribute to our climate objectives.
I thank my colleague for raising this very important matter and for his impassioned plea on behalf of his own constituents in County Mayo in terms of the need for improved public transport services, particularly improved bus capacity and airport access. In my own ministerial role, I am also very taken with the points he makes about the importance of capacity for college students. We are doing more in the north west in terms of access to university with ATU in Castlebar, which is now a university town. Indeed we are working collectively on plans for the development of a major college of further education in Castlebar. Of course, there will always be people from County Mayo who are going for education in other places too and we need to make sure they have proper public transport facilities. I will certainly feed this back to my colleague, the Minister, Deputy Eamon Ryan. I know he shares this view on the importance of investment in public transport. I will also work with Deputy Dillon on making sure we can continue to make progress. Objectively, the Government has placed an unprecedented focus on investment in rural and regional Ireland. I am very conscious of the fact that rural transport and transport links are a very big part of making sure that social and economic life and well-being are sustainable and thrive in rural Ireland.
I thank Deputy Dillon for raising the important topic. As he knows, the Minister for Transport has responsibility for policy and overall funding. He is strongly committed to improving public transport services in rural Ireland, as is the Government, and to piloting new transport initiatives for people of all ages and abilities living there. The National Transport Authority, NTA, has statutory responsibility for securing the provision of public passenger transport services nationally. One of the key plans for enhancing the existing transport network across Ireland falls under what the Deputy referred to already, the NTA's Connecting Ireland rural mobility plan. This plan aims to develop an integrated, accessible and sustainable network of public transport offerings across the country. Connecting Ireland is a major national public transport initiative with the aim of increasing public transport connectivity, particularly for people living outside the major cities and towns. Over 100 rural villages will benefit from frequent public transport service, in other words at least three return trips daily, for the first time. The plan will also see a 25% overall increase in rural bus services, and over 60 new connections to regional cities from the surrounding hinterlands. Collectively, these measures will not only further improve connectivity in the area but will provide viable alternatives to the private car for those living in the region.
The first year of implementation of Connecting Ireland was only last year, which saw 38 new and enhanced services launched. The 2023 implementation distribution has been developed by the NTA through discussions with the Local Link transport co-ordination units, Bus Éireann and other stakeholders. Under phase 2 of the plan, 69 new and enhanced services nationwide are proposed for 2023. We have gone from 38 new ones last year to 69 this year. The rural transport programme, now operating under the TFI Local Link brand which Deputy Dillon referenced, has been providing scheduled and demand-responsive public transport services with success in rural counties across Ireland for many years. Local Link services are an integral part of the public transport offering and connecting communities throughout rural Ireland. In recognition of the vital role these services play, there has been a substantial increase in funding for Local Link services over recent years, going from €12 million in 2016 to over €42 million this year. The additional funding has enabled the introduction of 100 new rural regular service routes, as well as improvements to demand-responsive door-to-door services and the piloting of evening and night-time services in certain rural areas.
Specifically in respect of Mayo and in the context of those expanding budgets these organisations are receiving, I want to assure the Deputy that I will certainly take his concerns and views back to the Minister for Transport and the NTA.
I thank the Minister for his response. I acknowledge the work the Minister, Deputy Eamon Ryan, and his officials in the Department of Transport are doing and the commitment they have to delivering public transport that is fit for purpose. As the Minister, Deputy Harris, has acknowledged, we have seen nearly a fourfold increase since 2016 to over €42 million this year in terms of the provision of public transport. That is very welcome. Certainly the Government needs to continue on that trajectory and we need to seize the opportunity to enhance regional accessibility and stimulate economic growth. That will certainly contribute to our overall climate objectives. I trust the Minister and his Cabinet colleagues will prioritise that also for rural communities. It is really important.
I also want to take the opportunity to place on record the critical need for action on our key road infrastructure projects. One specifically is the N17 between Knock and Collooney. This project holds immense strategic importance for the west and the Atlantic economic corridor. Upgrading the N17 is not a luxury but an absolute necessity for our region. That is not just for redirecting heavy goods vehicle transport away from our villages. It will also promote the integration of active travel facilities, which is an important point. The current state of the N17 poses significant safety concerns. I urge the Minister to take the message back to the Minister, Deputy Eamon Ryan, to ensure we have swift progress on this project without any unnecessary delays. While I understand there are funding considerations involved, we cannot afford to overlook the pressing need of our rural areas and the transformational impact that this well designed, safe and efficient road network will have for the west and for counties Mayo and Sligo in particular.
The Deputy resisted the urge to burst into song there when he mentioned the N17.
I certainly will resist the urge, too. I thank Deputy Dillon for taking the opportunity to highlight, alongside the need for improved public transport links for rural Ireland and County Mayo, the strong concerns and views in his own community and constituency in respect of the N17 from Knock to Collooney and the importance of that project to the west and particularly to counties Mayo and Sligo. I will certainly feed those comments back to my Cabinet colleague, the Minister, Deputy Eamon Ryan, and indeed to my other Cabinet colleagues as well. We will keep in touch with Deputy Dillon. I know the importance of that project to him and his advocacy for him.
On the issue of public transport, it is a welcome development that the Government, through the Department of Transport's sustainable mobility policy, recognises that transport needs are not uniform across the country. We have to be truthful about this. The needs of those living in my town, just south of County Dublin in north Wicklow, are very different from the needs of Deputy Dillon's constituents in Mayo. We have to make sure we have plans and funding streams that are flexible and responding to those different needs. The roll-out of Connecting Ireland and the expansion of the Local Link services are two fundamental parts of that solution, in recognition of the need for diversity when it comes to solutions in public transport. The fact that we are now significantly increasing funding to Connecting Ireland and Local Link, and we are seeing new and expanded routes and increased intensity of service provision, means there is a real opportunity for the NTA to reflect in all seriousness on the points the Deputy has made today about his community. In the months and years ahead, we will look to continue to make further progress.
I assure the Deputy that the Government will continue to provide additional investment in public transport. It is important that rural Ireland sees the benefit of that, and I believe it will.
Road Network
The Minister is a man of many talents. Many people will not be aware that along the west coast, including a place in Deputy Dillon's constituency called An Ceann Ramhar, there are places where the tides come in, particularly at spring tides, or as they call them in Irish, rabharta. Nuair a bhíonn rabhartaí ann, they come in and the road becomes impassable. This could go on for three days at a time. At every high tide - morning or evening or whatever time the high tide comes - the road becomes impassible. It happens regularly in a place in my constituency called Cuan na Loinge, where 14 houses are virtually on an island when this happens. It does not happen every day of the year because as Members know, the tide varies, but obviously with rising sea levels it is going to happen more and more into the future.
In the case of Cuan na Loinge there are 14 houses, and in the case near Westport there are three houses and a business. The reality is you either do these road projects or you do not. I remember one time funding a pier in Deputy Dillon's constituency for a family of three generations who were living on an island. At the time I think it cost €160,000. There was big headline in a British newspaper about the money that was spent. My counter-argument was that if I had to relocate that family onto the mainland, which would involve taking them off the island, giving them land and all the rest, I would have no change out of the money that was spent and I would have dislocated them. They still live there, many years later. Sometimes things have to be done that economists will advise against, but human common sense will bid us to do.
I see this as forming part of the role of the Department of Rural and Community Development, although it could come out of roads money under the Department of Transport. There are some places along the coast - for example, in Clew Bay - that are recognised as islands because this phenomenon happens every day, but other areas do not have this recognition. In my view, the roads need to be raised in all coastal communities where there is a problem of access and egress during certain high tides. A special fund should be put in place in the Department of Rural and Community Development to provide annual funding until this problem is resolved. It could be done under the CLÁR scheme. It is one of these things that once it is done, it is done forever. In the greater scheme of national money, the cost is very small. I accept that the cost per house or the cost per individual looks big, but we need to do something about these areas. When we made these improvements in the past, once they were done we never heard complaints about them.
Maybe my colleague is aware of Clynish Island, where the new pier was a lifeline to a small community. Nobody ever begrudged what they got. I grew up in the city. How much is spent on a city street over 50 years or 100 years to provide water, to take away the sewage, to provide street lights, to clean and sweep the street and to do all the rest? Nobody ever sees that as a cost or a big cost per house. When it is done in a rural area, however, for some reason the costs always seem to be big.
Words of wisdom, Deputy Ó Cuív.
Indeed, that is a prescient point about how some people, not the Ceann Comhairle, view the expenditure of money in urban Ireland versus rural Ireland. I thank Deputy Ó Cuív for raising the matter. I am happy to respond on behalf of my colleague, the Minister for Rural and Community Development. The Deputy raised an interesting point about where the responsibility falls. That is not to shirk the broader issue. However, it is the view of the Department of Rural and Community Development that it has no remit in regard to funding for public roads and that this is an operational matter for the local authority. Further, it considers that each local authority is mandated to determine its own spending priorities, while having regard to locally identified needs. I am not taking that as shirking the issue but more to provide the Deputy with the response of officialdom. The CLÁR scheme to which the Deputy refers was originally launched in 2001. It provides funding for small-scale capital projects in rural areas that have experienced significant levels of depopulation. The scheme was closed in 2010 and was reopened in 2016. CLÁR, as originally constituted, leveraged existing funding streams across a wide variety of developments including group water schemes, roads and sports capital projects. The Deputy knows this well, obviously. CLÁR was restructured and reopened in 2016. The scheme now has an increased focus on collaboration between communities and local authorities. The leveraging aspect to which I referred has been discontinued. At present, the Department of Rural and Community Development has no plans to refocus the CLÁR scheme on leveraging funding or to open a specific strand for roads. That aside, the point the Deputy makes is a reality for communities in certain parts of the country including those he referenced in his own constituency in Connemara.
I am aware that the Government has established an interdepartmental group on managing coastal change to scope out an approach for the development of a national co-ordinated strategy to manage the projected impact of coastal change to our coastal communities, economy, heritage, culture and environment. The interdepartmental group is jointly chaired by the Department of Housing, Local Government and Heritage and the Office of Public Works, OPW, and is due to bring forward options and recommendations for the Government to consider. Coastal protection and localised flooding issues are matters, in the first instance, for the local authorities to investigate. In order to assist them, the OPW has undertaken a national assessment of coastal erosion, including erosion rates, under the Irish coastal protection strategy study. The results of this study have been published on the OPW website. These data now enable the country and its local authorities to develop appropriate plans to try to mitigate the issues that Deputy Ó Cuív has raised .
Local authorities can, of course, carry out coastal protection works using their own resources. They can also put forward proposals to relevant Departments to fund appropriate measures. I understand that interventions or hard defences have the potential to cause problems further along the coast. From my time as Minister of State with responsibility for the OPW, I remember it is always a concern that by fixing a problem on one part of the coast, it moves along to another part. What I am saying to Deputy Ó Cuív is that an interdepartmental group is looking at how to protect our coastal communities, how to protect from coastal erosion and how to address issues related to that. Obviously, access is a really big part of it. I will take back his suggestion to the Government in regard to CLÁR and how he believes that has potential to be of assistance here. I just wanted to share with him the view of the Department. Most appropriately, perhaps, I will take back to the Minister for Housing, Local Government and Heritage, and the Minister of State at the Department of Public Expenditure, National Development Plan Delivery and Reform with responsibility for the OPW the suggestion, in the context of their work on that interdepartmental group, that consideration would be given to the issues the Deputy has raised around that access and the challenges it poses for local communities.
I thank the Minister for the answer. In regard to the leveraging of funding, I am broken-hearted that the Government does not see the merit in it. The biggest argument against investing in small, isolated pockets of rural Ireland is the cost-benefit analysis which dictates that if there is a certain amount of money, it will go to where the people are. The logic is that such an approach gives a better bang for the buck. A leveraged fund specifically for areas of low population - that is what CLÁR was founded on - could make it affordable for the mainline Department to provide its part of the funding. It would make up the difference and narrow the gap. I ask the Government to reconsider the merits of this type of co-funding because it certainly delivered in the past.
There is some misunderstanding in this regard. Perhaps I did not put the question correctly. In these cases it is not a matter of coastal erosion. The roads that are there work perfectly other than during a high tide. However, the tides can differ in height by metres between the spring tides of March and September and ordinary tides. They are also affected hugely by the wind. In the cases of which I speak, there is a serviceable road and everything is fine until a high tide causes the water to rise so that you cannot drive across it. It gets flooded. It is about flooding rather than having to build big coastal defences. In one case there is a half a mile of flat road with a wall on the side that needs to be raised by about a metre. It is as simple as that but I was told it would cost €500,000. If that is what it takes, that is what it takes. There is a good business in the area as well as a few houses. In another case there are 14 houses with the same problem on a much shorter stretch of road that passes through a hollow and up again.
I certainly will take on board what the Minister said. He has given me a good lead today. I am interested to hear about the interdepartmental group. Perhaps it will consider including access as one of the issues it will tackle around the coast. One can only imagine what it is like living in a house and getting up in the morning to find the tide is in and the children cannot go to school. I would have loved that to happen when I was in school. Nowadays, however, the children want to go to school and the parents want to get them there. They are all very serious about it. The situation for people affected is just not workable and liveable. I thank the Minister for his words of wisdom. I will listen carefully to his supplementary reply.
The Deputy makes an important point about cost-benefit analyses. This has been a bugbear of mine in my constituency for a long time. There are parts of certain rural communities, including some in County Wicklow, that will never measure up to a cost-benefit analysis that is based on an urban area. The Deputy poses an interesting challenge, to the system and to the Government, as to how we can have a more nuanced understanding of cost versus benefit, with the need sometimes to have the emphasis as much on the word "benefit" as on the word "cost". It should go without saying that the Government absolutely appreciates how important access, including access roads, is in enabling people able to go about their lives and pursue their livelihood. The Deputy spoke about people trying to get to school, college, work and everywhere else. This is a particular issue for farm families and others in rural areas.
The interdepartmental group I referenced is the best vehicle to take this issue forward. There is a commitment under the action plan for rural Ireland, Our Rural Future, that the group, officially called the interdepartmental group on managing coastal change, will finalise and submit its report, with options and recommendations for managing coastal change, to the Government this year. As the Deputy noted, the issue he raised is not, strictly speaking, about coastal erosion, but it does relate to coastal activity. We will see whether it can find a home within the interdepartmental group's exploration of issues. Another avenue for addressing the matter is the minor works schemes operated by the OPW. Colleagues in the Department who prepared this note have reminded me that this is a useful funding source for local authorities.
I undertake to take this issue back to the Minister for Rural and Community Development, under whose remit lies Our Rural Future, and the Minister of State with responsibility for the OPW. I will ask them both to keep it in mind in the context of the work of the interdepartmental group and to keep in close contact on the matter with Deputy Ó Cuív.