Dáil Éireann díospóireacht -
Wednesday, 15 Nov 2023

Vol. 1045 No. 5

Saincheisteanna Tráthúla - Topical Issue Debate

School Meals Programme

Deputy Violet-Anne Wynne

The Minister for Social Protection, Deputy Humphreys, outlined to me yesterday evening that she would not be in a position to take this question here this morning. Nonetheless, I am very grateful to the Minister for her engagement on the matter and for ensuring that the Minister of State, Deputy Browne, is present in order for the question to be taken today. It is vitally important for me, as a public representative, to highlight this matter today. It is of huge importance to my constituents in north Clare and it involves more than 700 students. On Friday last I received an influx of emails, predominantly from parents but also from others in the school community, who have been impacted by this issue. The emails informed me that in September this year the new Ennistymon Community School opened in north Clare - not in a new building - as an amalgamation of three schools: the former Scoil Mhuire, Meánscoil na mBráithre CBS, and Ennistymon Vocational School. The new school operates across the three buildings of the former schools and will continue to do so until quarter 1 of 2024 due to building delays.

Students from the three former schools are mixed across the three sites. Ennistymon Vocational School was a DEIS school and the principal of the new Ennistymon Community School has told me they were advised the new school would hold that DEIS status for six years. There is quite a bit of confusion at play here. In June 2023 the school completion project, SCP, co-ordinator, was verbally assured by the social inclusion section of the Department that the new Ennistymon Community School would receive full school meals funding from 1 September. The SCP co-ordinator was told that a note was placed in the file and a letter would issue in August to confirm same. It was outlined to the principal that it is common practice for letters to issue from the Department at the end of August. However, confirmation from the social inclusion unit in relation to the Ennistymon school meals budget was not in any way confirmed. At the end of October it was outlined that the school meals would only be provided based on the numbers previously held by the vocational school, which is approximately of one third of the new school. I do not believe it is workable that some students in a new amalgamation setting would receive hot meals and others would not. I am unsure how this was an option and why that would be the case.

On foot of the verbal assurance given that all students would get the full school meals provision in June, the School Food Company hired two additional staff and purchased a van to transport food to all three campuses. The Ennis school completion project and the school provided a full school meals provision across all three campuses. The school found itself in an impossible situation when the newly sanctioned school meals budget was withdrawn abruptly. The School Food Company has been forced to let three staff go without any notice, just a few weeks before Christmas. One of the staff got in touch at the weekend to make the point that not only has a fantastic service been taken away from the school, but jobs have been taken as well. Those who were in a job that they loved since day one are now left without a wage with Christmas coming up. They are angry and upset because they have no money coming in to pay all their bills.

This school has students mixed across all three sites due to the building delay. They will be forced to pick and choose from each year group as to who qualifies for a subsidised lunch over others. One can imagine that this would cause great difficulty. As of now, all students have benefited from this service since 1 September. The sudden withdrawal has caused massive distress and upset to these students and their families. I was incredibly pleased to be informed yesterday evening by the Minister, Deputy Humphreys, that in light of the circumstances an exception has been made and that school meals will continue to be funded for all children going forward. This was the correct action to take and will go some way to alleviate the stress that has unfolded in the past week for everyone involved.

Minister of State at the Department of Justice (Deputy James Browne)

I thank the Deputy for raising the very important issue of the hot school meals programme in Ennistymon Community School in County Clare. The school meals programme funds the provision of food to some 1,700 schools and organisations, benefiting some 300,000 children. The objective of the programme is to provide regular, nutritious food to children to enable them to take full advantage of the education provided to them. Funding under the school meals programme can be provided for breakfasts, snacks, cold lunches, dinners, hot school meals and after-school clubs, and is based on a maximum rate per child per day, depending on the type of meal being provided.

The hot school meal option of the programme was introduced in 2019 and is currently only available in primary schools. Ennistymon Vocational School, which was a DEIS secondary school, amalgamated with two non-DEIS secondary schools - Meánscoil na mBráithre and Scoil Mhuire - to form Ennistymon Community School at the end of August 2023. The new amalgamated school was designated with non-DEIS status by the Department of Education. In line with Department of Education policy, the pupils from the former DEIS school hold the DEIS supports, including school meals funding, for a period of six years until the pupils from the former DEIS school have transitioned out of the school. In other words, the students who had been in the DEIS school before the amalgamation can retain their entitlement to school meals until they have completed secondary school.

It is important to say that Meánscoil na mBráithre and Scoil Mhuire had not been in the school meals programme prior to the amalgamation. In light of the circumstances that have arisen at this school, which is in no way the fault of the pupils, the Minister, Deputy Humphreys, has instructed her officials to continue funding for school meals for all students until the end of the school year. This will allow time for officials from the Departments of Social Protection and Education to engage with the principal and the board of management of Ennistymon Community School on these very important matters.

Deputy Violet-Anne Wynne

I thank the Minister of State. I appreciate all the information outlined in his response. The ideal outcome is that the school gets the hot meals programme reinstated as a matter of urgency because its withdrawal has caused considerable distress for the pupils and staff. The situation arising in the first instance indicates that there is a wider picture issue here around the amalgamation supports the school is receiving from the Department. I believe that Ennistymon Community School should qualify for full DEIS status in its own right. The principal has told me that the school has an exceptionally high level of need, with more than 100 students who are under the protection of the State, and yet has not got near the provision of DEIS that is required to meet the needs of the Ennistymon Community School community. I ask the Minister of State, Deputy Browne, to speak with his colleague, the Minister for Education, Deputy Foley - as I will - to urgently review the DEIS status of this school which, due to building delays, is spread across the town on three different campuses.

The school community has enough issues to contend with, especially as the harsh weather picks up and as they move from building to building. I find it incredibly difficult even to find the phone number of this new school in its new form and that is massively concerning.

I must remind the Government that we are in the grips of a cost-of-living crisis that is not going away anytime soon. There are food banks being operated by the fantastic family resource centres across my constituency, but they simply cannot keep up with the demand. The vast majority of families in Clare are barely keeping their heads above water. We cannot turn our backs on our vulnerable children. I sincerely hope the Minister for Social Protection, Deputy Humphreys, and the Minister for Education, Deputy Foley, and I can work together to ensure that going forward these students and this school community have as much support as possible as they navigate this tricky journey to full amalgamation.

Deputy James Browne

I again thank the Deputy for raising the important matter of the hot school meals programme in Ennistymon Community School in County Clare. The school meals programme is a very important component of policies to provide regular nutritious food to children to help them to improve their daily diet, to encourage school attendance and to encourage extra educational achievement by children, particularly those from disadvantaged backgrounds. The level of interest in the school meals programme is a clear sign of the need for its expansion. The Minister is committed to continuing to grow the school meals programme and, in particular, the hot school meals element, building further on the significant extensions announced in last year's budget. In fairness, it has to be recognised across the House that the Minister, Deputy Humphreys, has done significant work to expand the school meals programme in recent years.

In relation to Ennistymon itself, the position is essentially that three schools amalgamated. One of these was a DEIS school and so the pupils were already in receipt of school meals, but the other two schools were not DEIS schools and so were not in receipt of school meals. The school is now classified by the Department of Education as a non-DEIS school, but the positive news is that the Minister, Deputy Humphreys, has taken a proactive approach here and has instructed her officials to continue funding for school meals for all students at the school until the end of the school year. This will allow time for the officials from the Departments of Social Protection and Education to engage with the principal and the board of management of Ennistymon Community School on these matters. I again thank the Deputy for raising this matter.

Flood Risk Management

Deputy David Stanton

I thank the office of the Leas-Cheann Comhairle for selecting this Topical Issue today. I thank the Minister of State, Deputy James Browne, for being here. It has been four weeks now since Storm Babet hit east Cork and Midleton. We have all seen the devastation that was caused, and we have all seen the pictures from the town. We are extraordinarily lucky that nobody died. Some people were washed away during that storm. Many people had their livelihoods and homes destroyed. It will take a long time to pick up the pieces.

There is a concern that this might happen again. One of the issues that local people who have lived in the area all their lives have brought to my attention is the need to dredge the local rivers. I am not sure if it would have made a massive impact on the day, given that there were reports of 130 mm of rainfall in 24 hours. The River Owenacurra has not been dredged in my memory. It is all silted up, it is narrow in places and it cannot take the water that flows into it from the hills around it. I know there are concerns about it. I understand that councillors are doing some work on interim measures to be put in place before the major flood relief scheme gets under way. That scheme has to be done as well and it has to be moved on very quickly. It has been planned since 2015. A huge amount of work has been done, but we need to see action on the ground. In the interim, locals tell me that dredging the river would help to prevent flooding in Midleton. I appreciate that some people have concerns about dredging, but it has to be done. The Minister of State may want to visit the river at some stage. The Minister of State, Deputy O’Donovan, visited, as did the Taoiseach, the Tánaiste, the Minister, Deputy Eamon Ryan, and the Minister of State, Deputy O’Donnell. They were all down to visit very soon after the impact. The rivers really need to be dredged. As I said, they have not been dredged for years. A decision has to be taken very soon because there is a concern that this might happen again.

I am told that Castlemartyr, a village halfway between Midleton and Youghal, is in the second tranche of the Office of Public Works, OPW, flood risk management programme. However, the second tranche has not been approved for funding to date. I am told that a minor application was submitted to the OPW in 2018 for river cleaning works upstream and downstream of Castlemartyr bridge. However, the OPW indicated that the application would not be successful for funding at that time. That is a shame because if the river had been dredged then, a lot of flooding may not have happened in Castlemartyr in the recent past and indeed in the intervening period. When I walked the bank of the river last week, I could see the need for dredging. It is very obvious. There is also the need to raise up the riverbanks on each side and build walls and flood defences there too. I understand that the council may submit another application for funding in light of what happened on 18 October. I urge the OPW to make funding available now to allow the River Kiltha in Castlemartyr to be dredged and also for the River Owenacurra in Midleton. There are other rivers in the area that need that kind of attention. The River Womanagh, which goes through Ladysbridge and Ballymacoda, needs attention. We have waited long enough now. Funding is the issue here. Let us get it done and let us prepare in order to prevent the flooding and the devastation that we have seen from occurring again.

Deputy James Browne

I thank Deputy Stanton for raising the important matter of the dredging of River Owenacurra in Midleton and the River Kiltha in Castlemartyr in light of recent flooding in east Cork. Flooding has a devastating impact on homes, businesses, people and entire communities. The causes, extent and impacts of flooding are varied and complex. This has been witnessed recently by the community of Midleton during Storm Babet and more recently in County Galway during Storm Debi.

The catchment flood risk assessment and management, CFRAM, programme, the largest study of flood risk, was completed by the OPW in 2018. It studied the flood risk for two thirds of the population against their risk of flooding from rivers and the sea. The outputs from this study were the flood risk management plans. These 2018 plans are providing the evidence for a proactive approach for designing and constructing flood relief schemes for the most at-risk communities. Cork County Council is leading the design of the Midleton flood relief scheme. In 2017 it appointed engineering and environmental consultants. Major flood relief schemes involve complex engineering and construction operations that can impact people's living, built and natural environments. The process follows a number of stages from feasibility through design, planning, detailed design and construction. It is important that the work is done correctly and achieves its objectives. Extensive and detailed technical analysis is required to establish the most appropriate solution, technically and environmentally, from a range of possible mitigation options. The solution has also to be adaptable to the increased risk from climate change.

When all possible options to manage the flood risk at Midleton were examined, one of the options included the dredging of River Owenacurra. The engineering analysis of this option highlighted how the dredging of the bed of the River Owenacurra is not technically viable in the tidally dominated reach. This is because the maximum water level of the tide will still be reached regardless of how much the elevation of the bed may be reduced by dredging. However, the engineering analysis did highlight how dredging in the fluvially dominated reach is deemed viable but only in combination with other flood mitigation measures. This dredging option has been brought forward to the optioneering stage for this scheme design. On its own, dredging in the fluvially dominated reach is not considered viable as it would have significant negative environmental impacts and would require extensive underpinning of the existing bridges.

In relation to Castlemartyr, Midleton is just one of some 100 flood relief schemes that are at design and construction stages at this time. This is a threefold increase since 2018 and is supported by €1.3 billion for flood relief measures through the national development plan. It is not possible to progress all 150 flood relief schemes identified by the flood risk management plans due to the constraint of the availability of the professional and specialised engineering skills that are required to design and construct flood relief schemes. While the prioritised approach to delivering schemes means that work is complete or under way to protect 80% of all at-risk properties nationally, the flood relief project for Castlemartyr is not in the first phase of projects being progressed nationally. However, the funding for this scheme is available. The OPW is currently trialling a new delivery model towards a more efficient means of delivering all 50 schemes in the second tranche of schemes. The proposed flood relief scheme at Castlemartyr consists of the diversion of River Kiltha around the town via an existing bypass channel through the grounds of the hotel and the construction of flood walls to protect vulnerable properties at the confluence of the River Kiltha and the bypass channel. Once consultants are appointed to progress this scheme, consultation with statutory and non-statutory bodies as well as with the general public will take place at the appropriate stages to ensure that all parties have the opportunity to make an input into the development of the scheme.

Deputy David Stanton

I thank the Minister of State and the Minister of State with responsibility for the OPW, Deputy O'Donovan, for this response. There is some new and very interesting information in there. The harbour at Ballinacurra near Midleton was navigated by tall ships up until not that long ago, but now it is all silted up. The local people on the ground tell me dredging of the river is important and would make a big difference. The engineers, as the Minister of State said, do not really agree with all that, but I will take this away and study it and maybe come back at a later time.

On Castlemartyr, the council looked for funding to do some dredging there around the bridge in 2018, but that money was not available at the time. I ask the Minister of State to look at that again to see whether the funding can be made available now to get that work done. Diverting the Kiltha River is something I have not heard of before. It is an interesting idea and would certainly solve a lot of problems, if it can be done. However, I am concerned about the time involved. Given that we are talking about the appointment of consultants, consultation with statutory bodies, public consultation and so on, it could be years before anything happens. It is important, given what we experienced just four weeks ago, that this work be progressed much faster than is envisaged in what the Minister of State has said. There is huge concern this could happen again. We have heard reports from the Met Office that the Gulf Stream is positioned such that it is going to be diverting and directing many more storms our way. We certainly do not want to see that sort of flooding happen again. I put it to the Minister of State and the OPW that emergency works are needed. We really need to get people on the ground now to get some works done and prevent this happening. As the Minister of State put it so well at the start of his reply, this must be done so homes and businesses are not devastated again. We must do all we can in the interim to prevent that. Dredging of the rivers and raising the banks can have a big impact. I put it to the Minister of State that we need to get this done sooner rather than later. There is a long winter ahead of us yet.

Deputy James Browne

It is open to Cork County Council to apply for funding under the OPW minor flood mitigation works and coastal protection scheme to provide mitigation measures for Castlemartyr ahead of the main scheme. Under this scheme, applications are considered for projects that are estimated to cost not more than €750,000. Funding from the OPW is up to 90% of the cost of available approved projects and applications are assessed by the OPW, having regard to the specific economic, social and environmental criteria of this scheme, including the benefit-to-cost ratio and the availability of funding for flood risk management. I have heard the Deputy's concerns and will bring them to the attention of the Minister of State.

Hospital Facilities

Deputy Alan Dillon

I express my gratitude to the Ceann Comhairle for selecting this crucial topic for discussion. It certainly holds significant importance for the people of Mayo. There is an urgent need to extend the emergency department and advanced medical assessment unit, MAU, at Mayo University Hospital, MUH. I emphasise the increasing need for action to support the capital investment programme for healthcare services at MUH. The people I represent deserve improved healthcare services that meet their needs in a timely and efficient manner. The current emergency department at the hospital is running at full capacity and the rising number of patients seeking care is straining its resources. This has resulted in extended wait times, overcrowding and a decline in the quality of service.

Within the HSE's capital plan, the executive has outlined provisions to facilitate the expansion of the existing emergency department. This includes a ground-floor extension aimed at introducing seven essential new assessment and treatment spaces. In addition, there are plans for a first-floor MAU. This will go a long way by providing ten additional assessment spaces dedicated to unscheduled care and auxiliary services. At present, we are informed the HSE design team is advancing through the stage 2b design report. Despite these plans, the timeline is not aligned to the urgency of our situation. The Taoiseach visited the hospital in June. There was a commitment to submit the extension plans to the planning authority by September, yet we are in mid-November and these vital plans have not materialised. This is unacceptable. I appreciate the Minister of State, Deputy Butler, is taking this on behalf of the Minister, Deputy Stephen Donnelly, but the people of Mayo certainly deserve better. I strongly appeal to the Minister for Health to take immediate and decisive action to ensure we have a prompt submission on these critical plans to the planning authority.

The proposed emergency department goes beyond physical space; it represents a lifeline for people who need access to critical healthcare. The seven new assessment and treatment spaces and the advanced MAU will be crucial in addressing the capacity challenges the emergency department currently faces. While I accept the approval process must adhere to the public spending code, it is really important that we look at expediting the submission. It is really important. The Government must look not just at MUH, but all hospitals that are facing similar challenges. We must prioritise projects as a matter of utmost importance and hold the HSE to account in relation to them. The health and well-being of the people of County Mayo must not be jeopardised any longer and this situation cannot be overstated. Will the Minister of State provide a more specific timeline for the submission of essential plans to the planning authority?

Minister of State at the Department of Health (Deputy Mary Butler)

I thank the Deputy for his question. The annual capital plan sets out the planned health infrastructure investment within a given year throughout the country. Capital investment has a critical role to play in enabling and enhancing service provision and in driving the reforms set out in Sláintecare. A number of projects for MUH are included in the 2023 capital plan. Funding has been allocated in 2023 to progress these projects. I do not like having to say this, but it is fact that management and administrative grade staff in the Fórsa trade union in the HSE commenced industrial action on Friday, 6 October. As a consequence of this industrial action, members in these grades are not engaging with political forums or processes, so the information provided in this response is the most up-to-date the Department can provide. The Deputy might therefore be further advanced with respect to the answer than what I have to tell him, given he lives locally and will have on-the-ground information.

The projects include building works associated with the replacement of the existing CT scanner. Proposed works include the construction of an extension to house the new CT scanner and construction work is under way. Electrical upgrades are to be delivered under multiple phases. Phase 1c is under construction and submissions are to follow for phases 2 and 3. The hospital sterile services department reconfiguration and upgrade is currently under construction and is expected to be completed by the end of 2023 or early 2024. The projects the Deputy is most concerned about are a new ground-floor extension to the emergency department, the reconfiguration of the existing emergency department and a new MAU. It is proposed that these projects will lead to seven new assessment and treatment spaces in the emergency department. A new first-floor medical assessment unit will also be constructed to provide an additional ten assessment spaces for unscheduled care and ancillary services. This project is at the design feasibility stage. I contacted the office of the Minister, Deputy Stephen Donnelly, last night to see whether any further information on timelines could be provided, but it just was not available.

In conjunction with the capital projects in MUH, there are other significant projects in County Mayo that will assist with capacity issues. One is the development of a new community nursing unit, CNU, in Ballina. The Ballina CNU capital proposal was completed by the service area and submitted to HSE estates. The submission is going through a process of further validation around projected costs and ensuring it meets population requirements. This will be submitted to the next national capital and property steering committee for review in quarter 1 of 2024. A new CNU is also proposed for Belmullet. A capital submission is being prepared by the service area to follow the same process as in Ballina. Both of these projects are currently at appraisal stage. The Deputy will understand this is part of the 2016 plan to reconfigure 90 CNUs across the country. I understand 43 are complete, with 47 more to be completed. The delivery of capital projects is a dynamic process and is subject to the successful completion of the various approval stages.

The Department is working in conjunction with the HSE to finalise the capital plan for 2024. Once finalised, it will be submitted to the Minister for Health for approval prior to publication, in line with established procedures.

The number and cost of projects competing for inclusion in the annual capital plan invariably exceeds the funding available. The HSE has developed detailed and robust systems and procedures to appraise, manage and deliver infrastructure projects that are aligned to the public spending code.

Deputy Alan Dillon

I thank the Minister of State for the response. I want to acknowledge all of the work she has been doing within her portfolio in supporting older people and mental health. I accept that she was given a script today but the background to me raising this matter in the Dáil is the lack of a progress report from the HSE up to 6 October. We are now in mid-November and still there is no update on this. It is disappointing that the Department of Health could not have furnished a more up-to-date outline of the situation with regard to these capital projects.

The HSE is aware of the necessity of facility upgrades at Mayo University Hospital, MUH, but yet again it has failed to take the required steps to expedite construction. For me and for Members of this House, holding the HSE to account is really important. The executive's inaction is, at times, unjustifiable. The urgency of this matter is stark when one looks at the alarming number of patients who spend more than 24 hours on trolleys at MUH and that was underscored in 2023 when the latest figures were released. There is a pressing need for a new ward block within MUH and we must vigorously campaign for the realisation of that. A recent HIQA report outlined deficiencies within the facilities and held that the need for a 75-bed ward block at the Mayo site was unquestionable. This is one of the long-term actions that the management within MUH presented as a valid solution, particularly in the context of addressing the shortage of single, en-suite rooms in MUH.

Mayo deserves access to quality healthcare services in a timely and efficient manner. I ask the Minister of State to relay to the Minister for Health the need for immediate action to address this issue.

Deputy Mary Butler

I certainly will go back to the Minister and relay to him the concerns raised by Deputy Dillon. Departmental officials are considering all available opportunities to improve on the pace of delivery of capital health projects. This process is currently underway and includes consideration of the use of modern methods of construction to deliver rapid build.

In March this year changes to the public spending code aimed at enhancing National Development Plan, NDP, delivery were introduced. These changes seek to streamline the appraisal and approval of major projects, with infrastructural guidelines due to issue shortly.

As Deputy Dillon will be aware, a five-year allocation out to 2025 of €5.65 billion has been provided to the Department of Health as part of the review of the NDP to support projects and programmes throughout the country. As everyone here understands, the early stages of all capital projects are the slowest. Once construction starts, it generally happens very quickly. That said, I will certainly bring Deputy Dillon's concerns back to the Minister. We are facing into the winter again now and the last thing we want to see is patients, particularly older people, on trolleys.

Disease Management

Deputy Pauline Tully

I thank the Ceann Comhairle for selecting this Topical Issue. Epidermolysis bullosa, EB, is an extremely painful and rare skin disease, unknown to many people. People living with EB are missing proteins that bind the layers of their skin together so any minor friction causes it to break and blister. It is a debilitating and excruciating disease, with no known cure. There are four forms of EB that can vary in severity but all carry their own life-limiting symptoms and life-long pain. EB can effect not only the skin but also a person's internal organs. It is an extremely complex condition that requires specialised care in many cases.

On average we have 300 people in Ireland with EB. Recently Members of this House heard from two powerful EB advocates during a briefing in the audiovisual room, Ms Emma Fogarty and Ms Liz Collins. Ms Fogarty spoke about her experience of being born with a severe form of EB. She provided a searingly honest and moving account of the ways in which her life has been affected by EB and of the pain and challenges she faces on a daily basis. Ms Collins gave a powerful and open account of what it is like to care for her daughter who has severe EB. She explained how this disease can have a profound effect on the physical and mental health not only of the person living with the condition but also on his or her family members.

During the same briefing we heard about a new report from University of Limerick, UL, and Debra Ireland, the patient group supporting people affected by EB. This report reviews the impact of EB on the quality of life and examines access to services and supports across five countries, including Ireland. The study shows that people with EB in Ireland have access to care through specialist clinics in Children's Health Ireland, CHI, at Crumlin and St. James's Hospital and through community health teams and while I wish to commend the work of all the dedicated teams, many families continue to face significant challenges in managing this difficult condition. In particular, the report from UL and Debra Ireland found that Ireland is lagging behind other countries by failing to provide a dedicated EB bandage scheme. It also found that challenges remain in the provision of home nursing care for people with EB, including the lack of contingency plans where nursing staff are unavailable and a lack of nurses trained in treating EB to replace those who move on. The report highlights the significant impact of EB on mental health and shows that people caring for a loved one with EB have a lower quality of life than the general population. It also found that the economic burden of EB is approximately €130,000 per year per person in direct and indirect costs.

In its 2024 pre-budget submission Debra Ireland called for an investment of €810,000 in mental health supports, outreach care and home care for people with EB. In relation to home nursing care, Debra Ireland is seeking ring-fenced funding as this would enable the provision of support that reflects the prevalence and impact of the disease, with resources being made available where a person lives. A ring-fenced fund would ensure that people with severe EB can access the essential and complex home nursing care they need, as those needs change over time. In addition, Debra Ireland estimates that €400,000 in annual funding would be required to run an EB-specific bandaging and dressing materials scheme in Ireland, similar to the one that exists in Australia.

Given the significant impact of this disease, will the Minister for Health commit to providing the additional funding required to meet the needs of people living with EB in Ireland?

Deputy Mary Butler

I thank Deputy Tully for raising this really important issue. All of us in the House fully appreciate how devastating a diagnosis of a rare disease can be for patients, their families and carers. There is cross-party support for doing everything we possibly can to help patients who live with this awful condition on a daily basis. As Deputy Tully said, EB is a rare, life-long genetic condition which causes fragile, blistering skin. I fully recognise and appreciate the difficulties experienced by patients suffering from this painful condition.

There are approximately 300 patients in Ireland with EB, with around 60 new patients annually. Children with EB are cared for in the multidisciplinary clinics in CHI, Crumlin, while adult patients are treated at a multidisciplinary clinic in St. James's Hospital. Care for EB requires the involvement of many different clinical specialists to extend lifespan and improve quality of life. A considerable amount of work has been undertaken to enhance the availability of treatments for those suffering with EB. For example, in recent weeks the HSE published a rare disease care pathway for the diagnosis and multidisciplinary care of inherited EB.

This Government is fully committed to doing everything possible to assist people living with a rare disease. Significant progress has been achieved under the National Rare Disease Plan 2014 to 2018, including the establishment of the HSE national clinical programme for rare diseases and a national rare disease office. In February, the Minister for Health announced a plan to develop a revised national rare disease plan in line with commitments in the programme for Government. Initial work on the new plan has commenced and a steering group to progress the new plan is expected to be convened in the coming weeks. Furthermore, as part of the development of a new plan, a patient forum will be established to ensure that the plan meets the needs of patients and families affected by rare diseases.

On funding, following the announcement of the budget allocation for the Department, the Minister for Health, Deputy Stephen Donnelly, will shortly be issuing a letter of determination to the HSE outlining my priorities and funding levels for 2024. This will be the basis on which the HSE will draw up the national service plan. It is not until the conclusion of the process that a detailed breakdown of new development will be available.

I would also like, as Deputy Tully has done, to acknowledge the brilliant work done by Debra Ireland on behalf of patients and families impacted by EB. I take on board what Deputy Tully said about home nursing care - not so much the lack of training but where if one nurses moves on to another job, the continuation may not be there. As it is a rare disease, with 300 patients in Ireland suffering from it, I can understand the point Deputy Tully made about not everyone having up-to-date information on how to deal with. However, I will certainly bring her concerns back to the Minister. I am familiar with both EB and with briefings that Debra Ireland has given previously. It is great that we have people like Emma and Liz coming forward and talking out about how difficult it is with EB.

Deputy Pauline Tully

I thank the Minister of State. Debra Ireland is an excellent charity. It provides brilliant support to people with EB and their families. As the Minister of State has responsibility for mental health, I want to focus for on mental health issues, a subject I mentioned in my opening remarks.

In a survey conducted by Debra Ireland in 2019, people living with or caring for someone with EB spoke about experiencing feelings of isolation, despair, loneliness, an inability to cope and helplessness when a child is in pain. The pain is excruciating. When Emma was in that day in the audiovisual room, when Debra Ireland was giving a briefing, she talked about how every day she goes through excruciating pain. It can take three to four hours for her bandages to be changed. When the bandages are removed, blisters must be burst, and then ointment and new bandages put on. Obviously, how long it takes to change the bandages depends on the severity of the disease, but it is pain every day. There is bound to be an impact on mental health. A number of international studies have also examined the psychological impact of EB. One such study found prevalence rates of 63.6% for depression, 45.5% for anxiety and a lower quality of life generally for all of those affected by EB.

Debra Ireland provides a grant for counselling and therapy to fill the gaps in the context of what is not provided by the mental health services. It said that the demand for the grant increased by 73% between 2021 and 2022. It is looking for an investment of €80,000 per annum towards a clinical psychologist based at St. James's Hospital. That would have such an impact because there would be a person dedicated to people with EB. I wonder if that is something that could be considered, when it is decided where budget allocations are going?

There was also an EB outreach nurse appointed to Children's Health Ireland at Crumlin but none has been appointed to St. James's Hospital for people who move into adulthood. That would make such a difference because an EB outreach nurse can deliver early intervention, for example, in the case of problem wounds, and therefore reduce the need for hospital visits to access treatment for wounds and possible infections. Again, even an investment in an EB outreach nurse would make such a difference to the people living with the disease.

I have already talked about the bandage scheme. Some of the people say that sometimes when they go to collect their bandages, they are the wrong size or they are not available, and they have to travel then to one of the hospitals to get them. These are small things that could make such a difference to the lives of people with EB and their families.

Deputy Mary Butler

The Deputy has summed it up there. When one has a child living in pain every day, it is very difficult for parents. As stated, the care needs of people affected by EB are currently being treated on the basis of a two-centre approach delivered through Children's Health Ireland and St. James's Hospital. I take on board what the Deputy said in that the outreach nurse is available for Children's Health Ireland, but not for the adults. On the request for funding for a clinical psychologist, which is really important, the HSE service plan is currently being configured. We support various NGOs with over €100 million from the mental health budget, and I will certainly take a look at this. Young people and adults who are living with this difficult, lifelong genetic condition, which causes fragile and blistering skins, have it really difficult on a daily basis. They are dealing with it every day of the week, and it can be very difficult. I will bring the Deputy's concerns back to the Minister, and I will also look at the issues she has raised myself.

Cuireadh an Dáil ar fionraí ar 9.55 a.m. agus cuireadh tús leis arís ar 9.58 a.m.

Sitting suspended at 9.55 a.m. and resumed at 9.58 a.m.