Michael Moynihan (Cork North West, Fianna Fail)
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Apologies have been received from Senators O'Loughlin, Seery Kearney and Clonan. The purpose of today's meeting is to discuss the UNCRPD Article 26 on habilitation and rehabilitation. On behalf of the committee I welcome representatives of the Neurological Alliance of Ireland, NAI, and Multiple Sclerosis Ireland, MS Ireland, Ms Magdalen Rogers, executive director of NAI, and Alison Cotter, research and advocacy officer of MS Ireland and vice chair of the NAI. From An Saol Foundation I welcome Mr. Reinhard Schäler, chief executive officer, Mr. Odhrán Ó hUallacháin, senior physiotherapist and interim clinical lead, and Mr. Joe Grogan, board member.

Before we begin, I will read a note on privilege. Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person or entity outside the Houses in such a way as to make him or her identifiable. Therefore, if witnesses' statements are potentially defamatory and they are directed to discontinue their remarks, it is imperative that they do so immediately.

Members are reminded of the same parliamentary practice that they should not comment on, criticise or make charges against any person or official outside the Houses in such a way as to make him or her identifiable. I also remind members of the constitutional requirement that members must be physically present within the confines of the Leinster House complex to participate in public meetings.

Without further ado, I invite Ms Rogers to open proceedings.

Ms Magdalen Rogers:

On behalf of the Neurological Alliance of Ireland, the national umbrella for more than 30 neurological charities throughout Ireland, I thank the Chair and members of the committee for the joint invitation to the NAI and MS Ireland, together with NAI members, An Saol Foundation, to discuss Ireland’s response to the rehabilitation needs of people living with neurological conditions in the context of the commitment to rehabilitation as a right under Article 26 of the UNCRPD.

Neurorehabilitation refers to the treatment provided to individuals after experiencing a neurological injury, illness or diagnosis of a neurological condition. This description, however, does not adequately convey the fundamental hope and potential that neurorehabilitation gives to people with neurological conditions. It can be the difference that enables people to return to employment, live independently, retain or recover the ability to do everyday tasks and live a full life after a neurological diagnosis. Unfortunately in Ireland, access to neurorehabilitation can be a lottery. Neurorehabilitation services are not available equally across the country. Many parts of Ireland remain significantly underserved with neurorehabilitation services, and the findings of a HSE report on inpatient rehabilitation published just last week further highlights the stark gaps in neurorehabilitation services.

Article 26 of the UNCRPD is about putting people living with a disability at the centre of their rehabilitative and habilitative care. It means offering a choice to prevent crises and to support people living with a disability in the way they want to be supported.

The gold standard of this implementation is already being put in place by our voluntary sector providers through the 2019 neurorehabilitation strategy commitment to develop long-term neurorehabilitation services in the community. As an example, services provided by NAI member MS Ireland include community worker services, wellness and symptom management programmes, exercise and physiotherapy programmes open to people with a range of neurological conditions, and respite care through the MS Care Centre. We will highlight many other examples throughout our presentation where NAI member organisations, including our members An Saol Foundation, which is present, are providing critical services in line with the long-term needs identified in the neurorehabilitation strategy in a range of areas such as residential care, vocational rehabilitation, day services and family and carer supports.

The well-publicised challenges facing section 39 voluntary providers including funding shortfalls, staff recruitment and retention difficulties, and the increasing cost of delivering services, represent a serious ongoing threat to the continuation of these services. Much more needs to be done to properly invest in, sustain and develop these vital community supports in order that they are available to everyone who needs them. The National Strategy and Policy for the Provision of Neuro-Rehabilitation: Implementation Framework 2019 to 2021 focused on three key deliverables. They are the development of community neurorehabilitation teams, the delivery of long-term community neurorehabilitation services and the development of inpatient neurorehabilitation services.

There is no doubt that welcome progress has been made in recent years in delivering on some aspects of the strategy. In particular, the Minister of State with responsibility for disability, Deputy Rabbitte, has invested significantly in the roll-out of community neurorehabilitation teams in line with the programme for Government commitment to implement the neurorehabilitation strategy. She has, in addition, commissioned pioneering research to understand the challenges facing service users and service providers in accessing and delivering neurorehabilitation services in the community. This neuromapping project, a joint collaboration between the NAI, Disability Federation Ireland and the HSE, will issue a report to be launched by the Minister in the coming weeks.

It is clear however that much still remains to be done if Ireland is to meet its obligations to people with neurological conditions under Article 26 through the full implementation of the national neurorehabilitation strategy. The strategy provides a much-needed framework and impetus for developing neurorehabilitation services. We know what needs to be done to make Article 26 a lived reality for people with neurological conditions and their families throughout Ireland. We have acknowledged the meaningful progress that has been made, through the commitment of the Minister of State, Deputy Rabbitte, and through the work of our fellow members of the national steering group responsible for implementing the neurorehabilitation strategy. It is only by ensuring everyone who needs neurorehabilitation, regardless of age, condition or where they live, gets it that we can meet our obligations under the UNCRPD to the thousands of people throughout Ireland living with a neurological condition.

Our presentation today focused on the neurorehabilitation needs of adults over 18, the age cohort for the national neurorehabilitation strategy. We are aware that services for children with acquired neurological conditions are, if anything, in even more critical need of development. That issue warrants a discussion beyond the time we have available today, but NAI would be happy to provide support and information to the committee in convening a future meeting given its importance to children and families all across Ireland.

We thank the committee for its interest in the issue of access to neurorehabilitation services and request it to support the NAI and its members in their call for full implementation of the neurorehabilitation strategy, including seeking sustainable provision of the long-term services and supports they provide in the community and ensuring these supports are available to everyone who needs them.

Mr. Reinhard Schäler:

I thank members of the Committee on Disability Matters for the invitation to speak.

I am the CEO and founder of An Saol Foundation: Life and Living with a Severe Acquired Brain Injury, SABI. I am accompanied by Mr. Odhrán Ó hUallacháin, senior physiotherapist and interim clinical lead at An Saol Foundation, and Mr. Joe Grogan from Galway, who is a trustee of An Saol Foundation and father of Shane Grogan, who suffered a SABI in an unprovoked attack in 2012 when he was 22 years old. We will be speaking on behalf of a group of people who, because of their injuries, can no longer speak for themselves. They have been left behind as hopeless cases, not curable and not worth the effort, but they have a passion for life, a passion to be active, to seek new experiences and for healthy living. They would rather live. This is why we established An Saol Foundation.

The foundation was inspired by our son Pádraig Schäler who was hit by a truck in 2013 when he was cycling to work on Cape Cod. Nobody was ever prosecuted. An Saol Foundation centre opened its doors in January 2020 for its three-year pilot demonstrator phase. In January 2022, we presented a mid-term review of the pilot demonstrator phase and proposed to the HSE a fully specified and costed implementation phase from 2023 to 2027 with a national centre and country-wide satellite centres. The HSE commissioned a review by three independent international experts who published their report and recommendations in February 2023. This report found that the service was necessary, that it was effectively delivered by An Saol Foundation, that its scope and geography should be expanded and that it could position Ireland internationally as a leader in the delivery of this kind of disability services.

In its Santry centre, An Saol Foundation offers an holistic service for the body, mind and soul of its clients. The total funding for the three-year pilot demonstrator project, which was aimed at three to five families, was €1.5 million.

In 2023, the total running costs were €570,000 for 28 clients, with a current weekly delivery of a total of just over 140 hours - this year it will be 160 hours - by just under five whole-time equivalent, WTE, practitioners and about two WTE support staff. The foundation requested a budget of €880,000 for 2024 to allow it to start implementing some of the recommendations of the 2023 HSE report. It was offered just €600,000 by the HSE, in effect a decrease in funding. To date, the 2024 service arrangement has not been signed as discussions about the budget allocation have been ongoing since May 2023.

In our first discussion about the lack of services for people with a severe acquired brain injury on RTÉ Radio One’s "Late Debate" in March 2014, one of Ireland’s leading neurologists said to us: "I understand your personal tragedy, but you need to understand that a health system with limited resources has to invest these resources in patients who have a reasonable chance of a meaningful recovery". A rehabilitation nurse who asked about our son’s accident concluded, while standing right beside his bed, that it might have been better had he died. The first question asked by one neuro nurse was, which nursing home he would be going to. When Pádraig started to move his legs more actively but with little control in October 2018, we brought him to the emergency department as we suspected that he was pushing the ball at the end of his femur out of the socket. In 2019, he was suffering so much pain that he could not sleep and was rapidly losing weight. He was referred to an orthopaedic consultant. This appointment finally came through in May 2022, two and a half or three years later.

In the meantime, fearing for his life, we desperately pleaded for help. No help was offered. Eventually, at the height of the first Covid-19 lockdown, in June 2020, we drove to Germany, where Pádraig was admitted to and successfully treated in an orthopaedic clinic in Munich using a minimally invasive procedure called percutaneous myofasciotomy. This was followed by a period in a specialised therapy centre. The consultants who treated Pádraig in 2020 are now philanthropically involved in developing our services. They have seen and helped several of our clients both in Germany and in Ireland.

It is national policy to cease admission of under-65s to nursing homes. In continuing to admit them, Ireland is failing in its obligations under Article 26 of the UNCRPD to “maintain maximum independence” and to “support participation and inclusion in the community and all aspects of society...as close as possible to their own communities, including in rural areas”. An Saol Foundation, as a day service, provides the supports and services to enable Ireland to fulfil these human rights obligations. Services should start with the most in need, not end before they get to them.

Encouraged by the HSE, we proposed Teach An Saol, the national centre for life and living with a severe acquired brain injury, and submitted the proposal to the HSE and the Minister of State with responsibility for disability in June 2023. We proposed six regional services and a national hub to support them. The sustainable development goals call on governments to leave no one behind. We can fulfil this obligation for people with an SABI through An Saol services. To date, we have received - we are very proud of this - enthusiastic support from the Minister of State, Deputy Rabbitte, a letter of comfort from Dublin City Council for land in Ballymun and expressions of support for two hubs of the centre from the chief officer of CHO 9, with qualified support for the remaining two hubs, if no satellite centres. We have established a strong philanthropic planning and design group with six of Ireland’s largest architectural, planning, engineering and legal firms which aim to submit planning permission applications and tenders for the design and build of the proposed development at the beginning of December. We have also established a high-profile international clinical governance committee to guarantee regulatory compliance of Teach An Saol’s current and planned services, temporary assisted living and especially respite.

This project offers a golden opportunity to the HSE and the nation to create a long overdue national centre with international visibility for people who have so far been left behind. Current national, EU and international legislation and conventions, including Article 26 of the UNCRPD, as well as new and emerging scientific and medical evidence, and, not least, plain human decency demand that they grasp it. Ireland can fulfil its obligations under Article 26 of the UNCRPD by providing An Saol Foundation with an adequate 2024 budget in support of its expanding services, as recommended in the 2023 HSE report, funding for Teach An Saol in the HSE 2025 capital plan and new revenue funding for the delivery of additional services, including respite, transitional living and social, clinical, and regional satellite centres.

In summary, the HSE supported us to pilot An Saol Foundation service. Through difficult times, including the Covid-19 pandemic, we provided a service addressing an unmet need for perhaps the most marginalised group of people in the country. The HSE commissioned an independent evaluation of the service and subsequently recommended expansion. Committee members have heard our plans for expansion. I ask them to support us now by adding their strong voices to those of the independent evaluators. I ask them to please support our request for the necessary funding to do what is necessary and what Article 26 of the UNCRPD calls for. This is the time for Deputies, especially Ministers and the Taoiseach, to take decisive leadership and act. We cannot allow this opportunity to lose momentum and die a slow death because, for our injured family members, this is literally a matter of life and death.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank the witnesses for their testimony. I welcome those in the Public Gallery to the meeting. We appreciate their taking the time to be with us this evening.

Simon Coveney (Cork South Central, Fine Gael)
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I, too, welcome everyone to the meeting and thank them for being here. It is timely for them to be here the day after the budget announcement in a year when the Government has committed almost €25.5 billion to healthcare and in advance of the detail of a HSE service delivery plan being outlined and agreed. Now is the right time to have this discussion.

It would be helpful for me to ask some questions that the witnesses might regard as obvious, but it is important we get the answers on the record. The State's plans under the neurorehabilitation strategy have not yet been implemented to the extent they need to be. Everyone accepts, and it has been shown in the reports that have been done, that there is a serious deficit. In different parts of the country, dramatically different supports are available to individuals and families. Are the witnesses happy with the strategy? Should it be fully implemented or are there things the State is missing under the strategy, which is now a few years old? Within the strategy, what areas would they like to see prioritised for delivery next year? It would be useful for us to know in order to be able to have a conversation with the relevant Ministers. The Minister of State, Deputy Rabbitte, is listening. I think, from my conversations with her, that she has a real interest in this area, but she needs the backup and support from a committee like this one to fight for resources. It would be good if the witnesses could outline in practical terms what priorities they would like us to push for.

I am aware of the document they published just before the budget announcement, which most of us received. It shows the disparity between different parts of the country and where we need to see new infrastructure put in place as well as the therapists and support teams that are needed in those rehabilitation centres to improve community and clinical care.

I thank Mr. Schäler for talking about his personal story as well as the challenges that many families like his face. I would be interested to get his request crystalised about the budget An Saol Foundation needs for next year.

I know An Saol effectively looked at what it has for this year, €600,000, as a reduction. Is €800,000 the figure it needs? Is the organisation a section 39 voluntary organisation? What frustrations does it experience in getting the staff and the skills it needs while competing with section 38 and other State-funded organisations? I am very familiar with the section 38 versus section 39 issue, particularly in relation to hospice care. We spent many years trying to change the status of a number of hospices, such as Marymount Hospice in my own constituency but others as well, regarding their inability to manage budgets while effectively doing the same work as many HSE facilities. Is that the same issue in this sector in terms of the capacity to get the staffing and skills needed and the cost of that? Obviously, that relates to the financial support it gets from the State to be able to do that.

An Saol goes into quite a lot of detail in terms of what it is actually asking for, which is very helpful. The way it is presented to the committee is helpful and it effectively asks us to take a look at it and question the Minister and the Department as to why that approach should or should not be supported. I am interested to know the consistency of that action plan that was outlined to us today in the call for action with the neurorehabilitation strategy that is in place and in need of full implementation. Are we doing what we need to do in a way that is consistent with what is being asked for today or does that plan or strategy need to be adapted further in the context of the pilot project that has been supported and what An Saol want to do beyond that?

I was quite moved by what Mr. Schäler had to say about his experience of the commentary on the approach to people who have been severely impacted by an acquired brain injury or similar. Of course, we have to approach this as a healthcare response where people who are most severely impacted get the most help as opposed to measuring the response on the basis of some other metric. That is an extraordinary thing to say in terms of some of the quotes he has outlined and I understand his deep frustration as a father in responding to that. I hope we can be helpful as a committee but it would be useful for me anyway if some of the questions I have asked are answered.

Ms Magdalen Rogers:

I will give my initial remarks and then I will bring in the two member organisations here today: MS Ireland and An Saol. On the question about whether this is a good strategy overall, the answer is yes. Is some of it being implemented? Yes. Are there gaps? Yes. The main gaps at the moment are in in-patient neurorehabilitation beds but also, very significantly, and my two member organisations here today would speak in detail to this, we have a gap in long-term rehabilitation which comes under the national neurorehabilitation strategy, but rehabilitation does not end at the hospital door. Rehabilitation does not end after 12 weeks of a community neurorehabilitation team.

While those services are absolutely vital and the community teams the Minister of State, Anne Rabbitte, has put in place are a game changer in terms of community neurorehabilitation, there is a life lived, as Mr. Schäler said, with these conditions. I would like my colleagues from An Saol and MS Ireland to outline for the committee what the long-term rehabilitation piece is and the gaps that exist because that is where we see a significant gap and a commitment in the strategy that still remains to be implemented.

Mr. Reinhard Schäler:

The main ask is to allow us take up the opportunity we are presented with and start building the national centre for life and living with a severe acquired brain injury next year. We have extraordinary support for this. In my mind, that is a unique opportunity and it might just go away if we do not take it up. Dublin City Council has identified a site and has given us a letter saying it is holding this for us. The HSE is supportive of phase 1 and the two first hubs, which is basically a reflection of what we do at the moment. There is a social hub and therapy hub and it says it is happy to finance and support it. There have been meetings with the chief valuer of Dublin City Council and I believe the HSE has received a proposal this week for the transfer of the land to the HSE.

We have an incredible design and planning committee group that represents some of the biggest companies in Ireland. The group helps us from a planning, design, engineering, architectural and legal point of view. They all do that for free. I do not really want to say this but if you look at what it has cost just to plan some of the sheds and huts around here, to get a whole campus for free and to be presented with this on a plate is great. Having an organisation behind this that has a proven track record to deliver on what it promises is fantastic. This is a service, and the HSE itself has said this in its report which the committee has, that has been repeatedly demonstrated is needed and is a service An Saol Foundation effectively delivers and is a service that needs to be expanded. It could position Ireland internationally as a leading provider of these kinds of services. There is a unique opportunity and that is the main ask we have.

Deputy Coveney referred to the budget and that is the other ask. It is surprising to see the HSE make recommendations for the development of our service and then not allow us to do that because it says we can only do what we get the money for. It asked us what we need to start implementing some of the recommendations in May 2023 and we told it we needed €880,000. It asked us again and we said we told the HSE that before. I then received an email saying we were getting €600,000. We spent €570,000 last year, but with the increase in costs, that is not really an increase at all. It is in fact a reduction in funding. That is the second ask.

The third ask is more medium to long term and will require not just capital funding for the remaining two hubs, the respite and transitional living ones, but also revenue funding to run the service. That is an issue and a point CHO 9 has a problem with because it says if it pays us to run that service, it has to take that money away from somewhere else so it has to be additional funding.

Simon Coveney (Cork South Central, Fine Gael)
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What is the capital cost?

Mr. Reinhard Schäler:

The HSE estimates the capital cost to be €25 million for the whole development.

Dessie Ellis (Dublin North West, Sinn Fein)
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There is great work done by An Saol, the Neurological Alliance of Ireland and Multiple Sclerosis Ireland. We have heard all the issues in the Dáil about multiple sclerosis. The urgent need for early intervention constantly comes up. That applies to all the services once there is a serious incident and someone gets a brain injury or otherwise. Early intervention is so important.

Deputy Dessie Ellis: The, work done by Teach an Saol, the Neurological Alliance of Ireland and Multiple Sclerosis Ireland. and we have heard all the issues in the Dáil about multiple sclerosis which constantly comes up about early intervention which is urgently needed. That applies to all the services. Once there is a serious incident and someone gets a brain injury or otherwise, early intervention is so important.

I know the programme for Government included a commitment to implement the neurorehabilitation strategy. There are delays in the full implementation and that was mentioned.

CHO 9 is an area with a large number of medical centres - Beaumont Hospital, the Mater, the national neuroscience centre, and the national trauma centre. Given the roles these centres play, it is crucial to ensure that they are bolstered by long-term community neurorehabilitation, which is needed to address the growing demand for care. As the witnesses have said, there has been progress with the team being funded, but how can we ensure there will be recruitment? From what I can gather, it seems to be a big problem. It is important to have the expertise necessary to operate these centres.

I looked through the table that has been provided on the gaps in service in the CHOs for inpatient neurorehabilitation services and community neurorehabilitation teams across the country. It is recommended that there should be six persons for every 100,000 of population. CHO 5 has none. CHO 2 has none. My own area, CHO 9, which includes Dublin North-West, Dublin Central and Dublin North-Central, has 3.3 for 675,000. It just shows the work that must be done and the funding that is required. That seems to be a significant problem. I recently had a person in with me who needs two carers. The person had a fall, got badly hurt and was in a wheelchair, but only one person could be supplied to them. That seems to happen a great deal. The new centre was mentioned. It is very important to have a centre of excellence where different groups are located. It makes it easier to gather all the statistics needed to find out what the problems are. I do not know where we are in that regard, but from what has been said, we are a good bit away from that.

I wish to raise the neuromapping project involving the Neurological Alliance of Ireland, the Disability Federation of Ireland and the HSE. The Minister is to launch a report. What is the status of the report? Will it be launched shortly?

The witnesses spoke about over-18s in regard to the policy of admitting people to nursing homes. A person of 65 can go into a nursing home but it is a different situation if a person who is 18 is stuck for a place. The gap must be filled in some way if that is what is required. There is much to be done in that regard, and it requires funding. The witnesses will have our support in whatever they want us to do in terms of chasing a Minister or Department. I will do that and I will raise issues. Deputy Tully is also on the committee. I will also raise the needs of the witnesses with our health spokesperson.

Ms Alison Cotter:

I thank Deputy Ellis for raising those important points. They touch on what Deputy Coveney asked about gaps and bolstering the services that are in place. Mr. Schäler mentioned there being a proven track record. We can see that in the delivery by the HSE and the Minister of the CDRTs. There is progress being made in that regard - there are no two ways about it.

In terms of the next step, the voluntary sector providers that make up the NAI, such as me in MS Ireland and An Saol Foundation, are providing the vitally needed services that support step 2, after the CNRTs. These services must be sustained and expanded to enable people to keep living well within their communities. The neurorehabilitation strategy itself refers to the crucial role of voluntary sector providers in the rehabilitation and long-term management of neurological conditions. The specialist nature of the services that we as voluntary sector organisations provide in bolstering the services that are in place cannot be overstated.

Ms Rogers picked up on the point earlier that the teams are one step in a rehabilitation journey. Neurorehabilitation needs to go on long beyond the 12 weeks. The CNRTs are only meant to provide a short burst of rehabilitation. There is a need for people to transition from a medically unwell phase and for those who are living with progressive and acquired neurological conditions to reintegrate back into society – to get back to work, for example, if that is something they want to do. It is all about person-centred care. We are not starting from ground zero in terms of those services. They are in place and they are being funded on the ground in regard to the longer term piece.

Deputy Ellis mentioned neuromapping. The report that was published in April 2023 found that nearly 100 unique services and supports were provided across the country, including supported living, respite, and vocational services. From our perspective, the value of those community-based services and their specialist nature for people living with neurological conditions is a lifespan piece. I will call out a couple of pieces where that is happening in practice, not only in MS Ireland but across the NAI. For example, the implementation framework outlines long-term rehabilitation services in the community as encompassing residential. As Ms Rogers outlined in regard to our national MS respite centres, we have had some wins in those areas. We are seeing investment there. We received an investment of €250,000 to keep us open seven days a week to the end of this year. The Minister of State, Deputy Rabbitte, acknowledged the importance of a good respite service being adequately funded and used to full capacity, especially in light of the difficulties we face in the sector. The gap is in the sustained support of those services, which really make a difference in the lives of people living with MS, but also other neurological conditions.

Acquired Brain Injury Ireland has transitional rehabilitation units. One property, for example, is in Sligo. It provides structured rehabilitation with one-to-one skilled rehabilitation assistance. It is person-centred, which goes to the heart of what the UNCRPD is all about. People who have used the centre argue that no two brain injuries are the same, so it is individualised. No two neurological conditions are the same, and the impacts on the person are not the same for any two individuals, even though they may have the same neurological condition. I know this is happening with our organisation in the physiotherapy programmes we provide to people with a range of neurological conditions. There is no good in these services existing in a silo. It is all about preventing crises and keeping people living well in the community should they wish to do so. An Saol Foundation has discussed the services it has.

On the vocational piece, Headway has been in touch as well about the extremely effective programmes it has in place, in pockets. Deputy Ellis mentioned bolstering services in CHO 9. Services are being bolstered in certain areas, but it is not happening across the country. Depending on where they live, people living with neurological conditions are not receiving the same standard of long-term rehabilitation. It is a postcode lottery at the moment. Even our own organisation has pockets where we do not have a service. That must change in order to enable people living with neurological conditions, including multiple sclerosis, to live well in their community and to get back into society.

Dessie Ellis (Dublin North West, Sinn Fein)
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I thank Ms Cotter.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Cotter. Does Mr. Schäler want to comment?

Mr. Reinhard Schäler:

We are members of the Neurological Alliance of Ireland and we work together and support each other's work. Perhaps Mr. Ó hUallacháin could say a little bit about the kind of clients that we have and talk a little about his own personal experience. We set up An Saol Foundation. When our son was in hospital I thought there must be something for a 23-year old who had a very severe accident. We thought there must be a service somewhere to look after him and help him. For months, I thought I was not looking hard enough. I met Ms Rogers at the time. She might remember that. I spent two or three days with Acquired Brain Injury Ireland in different centres. I talked to Headway on several occasions. They all told me they were very sorry but that no service is available for that level of injury.

We did not do it on our own as a family. It is hard to believe that there was nothing for somebody affected by a tragedy like that. Pádraig is over there. It was he who really inspired the whole thing. He showed us that he wanted to continue to live. It was like that. The families of most of our core clients were asked if they would donate their organs, because their life was going to be unbearable and they could increase the quality of somebody else's life.

There is a paragraph in the briefing document about the experience of other parents.

That is an outstanding example because we got it in writing this time. Most conversations happen as conversations and it is kind of hard to say afterwards whether something really was what was said. There is a mother who wanted to bring her son to a swimming pool and she needed a referral. Rather than getting the referral, she got a letter back from the head of the brain injury programme. We have the letter and the mother is happy to share it. Basically it said that there was no point in any further interventions and that the only thing her son needed was to be kept comfortable, which is another word for palliative care. It was not only the mother who received that letter; the consultant also sent the letter to all nine treating centres so that everybody who had been in touch with that patient knew to not touch him as it was not worth it, to forget about it. That same patient is in our centre now, is getting better and is putting bets on horses. There is fun. Tragedies are not all and only tragedies. This is something about which clinicians have a different view from families and the people who look at human rights, even if someone has a very severe injury and even if the clinicians have tried everything and say that someone cannot be cured.

In many people's minds, rehabilitation means that we get the person back to where he or she was before. That is not going to happen with most of our clients. In some cases. that has happened but with most of our clients, it does not happen. When we talk about the habilitation piece of the rehabilitation, we are trying to help people to live a life with severe acquired brain injury. It is not about getting rid of the severe acquired brain injury; it is about life and living with it. We are trying to help the people directly affected by it and their families to live as good a life as possible. Is that response okay for the Cathaoirleach?

Michael Moynihan (Cork North West, Fianna Fail)
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Yes. Absolutely.

Mr. Odhrán Ó hUallacháin:

A severe acquired brain injury is usually defined as being a condition where a person has been in an unconscious state for six hours or more or post-traumatic amnesia of 24 hours or more. These patients are likely to be hospitalised and receive rehabilitation once the acute phase has finished. That definition is taken very much at the time of injury whereas we look at the people when they come to us. We focus more on how they are now. We assess them objectively using outcome measures that measure how dependent they are on other people and how much assistance they need for their daily activities. That is one section of it. We also look at their cognitive status. For example, do they need assistance making decisions under the Assisted Decision-Making (Capacity) Act? We also look at their social setting. Are they living at home? Do they have support at home or are they living in a care home? These are the kinds of people we work with on a day-to-day basis. They are the most vulnerable people we have. As Mr. Schäler said, there are services for them. We take them and we look at what their goals are along with what their needs are. At the same time, we consider the physical activity guidelines set out by the WHO and by the clinical practice guidelines. We try to apply them to the clients. There are physical activity guidelines and we consider the body, mind and soul concept. There are physical activity guidelines for people without disability and the same guidelines exist for people with disabilities. They might have to do it a little bit differently but we still do it. We use a mixed model of robotic gait therapy and we use conventional gym equipment that has been modified to the person's abilities. We manage to get them to do the activities that everybody needs to stay healthy. With the mind and soul element of what we try to do, our clients are brought into a big open clinic with people working on different things at different times of the day. There is a big open space where people get to interact with each other. It is a community where everyone is rowing in the same boat. There is a sense of fun, there are jokes and horses are talked about. It is an opportunity for the clients to share their experiences with each other and it is the same thing for the families. They get to share tips and share stories. They get to live this together as we go forward.

We try to adapt this holistic approach to our setting under the HSE's New Directions framework of 2015. We look at the principles of the patient-centred approach, community inclusion, independence, quality of life and promoting equal rights for people with disabilities. Article 26 speaks about habilitation and rehabilitation and our success can be measured. Yes, certain people are improving and there are people who have gone back to work and gone back to university, and they are back driving, but that will not be the case for everybody, as Mr. Schäler said. Other people might get to go on a trip away with their family. They might get to spend some time with their friends. Other successes are that people are not getting sick, not having to spend time in hospitals or going to the GP, and not having antibiotics. There are different ways of measuring our success and the effectiveness of what we are doing. We are just looking for the support to continue to do that.

Mr. Joe Grogan:

I will give a brief history of Shane and our life for the past 12 years. Shane suffered a severe acquired brain injury 12 years ago when he was assaulted and attacked on his way home after a night out. He was brought to University Hospital Galway, UHG, and subsequently into Beaumont Hospital where he spent six weeks getting treatment. He was subsequently transferred back to UHG where he spent a further six months. He was transferred from there to the National Rehabilitation Hospital, NRH, in Dún Laoghaire for three months of rehabilitation. Like Mr. Schäler the first question we were asked when we went in the door of the NRH was, "What nursing home is he going to?" Unfortunately, given where we live we could not bring Shane home but we had planned to build a house and get him home. We were told that maybe we should take the other line and maybe the nursing home was the best avenue. After the three months, it was back to hospital and, subsequently, he was removed to a nursing home in Tuam. For the past 12 years, Shane's life has been in a nursing home. It has been very difficult for us as a family. My wife Joan spends possibly six to eight hours of the day with him. Even though he is being cared for in the nursing home, Joan is with him all the time. I go down in the evening when I can after work.

Going back to what happened to Pádraig, some years ago when Covid hit the nursing home, Shane's oxygen levels dropped so severely he was rushed to hospital. We followed them in and Joan went in with him to the accident and emergency department. She was allowed stay with him and stayed in a room with him for the week just so he would have someone with him who was not a stranger to him. It was not until three weeks afterwards that Joan sat down with me and said, "I have to tell you something and don't get mad". I asked, "What is it, love?". She said that when she went into the accident and emergency department, she was brought into a room and sat down and told that if Shane's condition did not improve, there would be no intervention and they would make him comfortable. He was a 31-year-old man. What did they mean by "make him comfortable"? I would not leave it at that. I contacted the hospital and made a complaint. I got a letter back, which I have here. Basically, it was the HSE's directive that with Shane's pre-existing condition, which was a brain injury and there was nothing else wrong with him physically, they would let him die if things did not improve. Thankfully, things did improve and Shane is still with us.

It is hard going into a nursing home to see him. As Deputy Ellis said, it is no place for a 30-year-old or an 18-year-old. Shane has been there since he was 22 or 23. The care is okay. It is basic care but we have to pay for our own therapists to come in. We pay for our own rehab physiotherapist, occupational therapist and music therapy. Anyone we get in we have to pay for. We are lucky that we set up a charitable trust ten or 12 years ago and we were able to fund it from those funds. There are simple things, however. For example, Shane has had a problem with his teeth for five years and it is only next week we are getting him in. We have to bring him to Dublin to the dental clinic. We have to hire a private ambulance to get him there for an assessment. If anyone had a pain in their tooth five years ago, they would get it seen to within a week.

It is five years, and we have no guarantee as to when Shane will get treated. Our life is like that.

It was between five and seven years ago that Mr. Schäler contacted me, and we met and discussed An Saol. It is a fantastic organisation. Shane unfortunately has not been able to get to Dublin yet. In the meantime, I successfully found a unit in Tuam that will be used as a satellite centre for An Saol. It is HSE run and newly opened. I was in contact with the staff about two months ago and they were delighted to facilitate us. Again, it is all about getting staff and people to work with us. Shane needs this. We bring him out as much as we can. We make life as normal for him as we can. However, the Government and everyone else need to come and see what is needed. Shane is a functioning adult. He has two fantastic nephews. He has a sister and a family unit around him. We go in to him every day and play his music and he responds at times. He has minimal consciousness, so he is on the severe end, but other than that he is still our son. No one has the right to say to us that he should not be here with us. It is only decency. It is only something that any member of the committee would ask for a sick child. That is what we are looking for.

We hope that when Mr. Schäler's Teach An Saol project is up and running we will be able to bring Shane up there. He will be able to stay up there and have treatments for a month. We cannot go up and down in a day or two days. There is no place in Dublin that will cater for Shane with an overnight stay because of his condition. With Teach An Saol that future is unbelievable, and I again congratulate Mr. Schäler on what he has done and achieved so far. We can get people from all over the country to go up and find this other way out. Shane's three-month stay in Dún Laoghaire was a basic three months. They did little for him other than what they had to do and sent us home.

We do not have a consultant. There is no one in charge of Shane's medical issues at the moment. It is all up to my wife, Joan, as regards what is wrong if Shane is feeling off form. She has to guess. She is at a stage now where she knows what it might be. If Shane has to go into a hospital, he has to go into the emergency department and lie on a trolley or in a bed. He is 6 ft 4 in. The bed is usually too short for him. We have to go through all this. My wife spends all the time in hospital with him. She sits in a chair with him because he has to go through so many tests. Then, after a week, they send him back to the nursing home with an antibiotic or something. That is our life, and it is difficult. It is a short synopsis of what we have been through for 12 years. There is light at the end of the tunnel, and it is Teach An Saol and the satellite centres, which can be developed right across the country with a bit of help. A bit of money is needed if course. Mr. Schäler said it is about securing the finance for next year, and not to be worrying about it and wondering if we are running out of funds to keep what we have in place when we are coming into October or November. We need it to be there and maybe have a bit extra for the Christmas party at the end of the year, so we are not always panicking about finance. I am self-employed. Business is tough, but it is nice to know you have enough there to get you through the year and that your family will be looked after.

Michael Moynihan (Cork North West, Fianna Fail)
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Thank you very much, Mr. Grogan. It is not easy for people to come before the committee to tell their personal stories, but it is hugely important both for our committee and the Government to hear the stories and the challenges being met daily by families. I appreciate you giving your personal story today. It takes bravery and guts to do it, but it is also for the greater good. I sincerely thank you for that. Deputy Feighan is here for Senator Seery Kearney.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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I thank the witnesses for giving a powerful presentation. It has been informative and upsetting. They have taken the time to effectively come in as an alliance to inform us of what is needed. They are people who are prepared to roll up their sleeves. That is what the Government, the HSE and other people should do. They should be able to help people to roll up their sleeves. I understand that some meaningful progress has been made with the Minister of State, Deputy Rabbitte. I appreciate that the witnesses acknowledged that, but we need to do an awful lot more.

I live in Sligo, so I am familiar with the transitional living unit, which was a collaboration between Acquired Brain Injury Ireland and the HSE. We need a lot more of that. I will not say I am happy, but I am very aware that the witnesses are prepared to work with all the stakeholders to achieve this. I will not go over what other people have said, but I am aware that there are gaps in the services and certainly in neurorehabilitation care in the north west. It is a critical issue, and we need to address those gaps. We also need to address those issues around the country, but I am speaking as somebody who lives in the north west. I understand it is currently the only region without MS case worker support. We should note and pass on from the committee that this leaves many individuals with multiple sclerosis without the necessary advocacy and assistance. The full delay in the implementation of the strategy was discussed, but is there anything more we can do?

I was in the Department of Health, which can be an unusual place at the best of times, but it likes good governance, and it likes data. That is one thing I always say. Ms Cotter's organisation and the others also have good governance. However, they need data as well. We are here to assist and help and I thank them for coming in today. On a lighter note, I hope they have been a lot more successful in the horses than I have, but it is nice to see people are able to get on with life. My colleagues have outlined measures and Mr. Grogan and Mr. Schäler have summed up the difficulties they face. Our job is to try to assist and help. This meeting has been informative for me and the committee. I thank the witnesses for coming in.

Michael Moynihan (Cork North West, Fianna Fail)
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We will start with Ms Cotter followed by anyone else who wants to make a comment.

Ms Alison Cotter:

I thank Deputy Feighan for acknowledging the good work that is going on. He mentioned the transitional living unit in his own backyard, Sligo. That is the gold standard of partnership between the HSE, the Government and voluntary sector organisations. It is what we need to see across the board. We are seeing it in our MS respite centre. It is worth acknowledging there are gaps in service in terms of the non-existence of our casework service in Sligo, which we will take outside of this committee. Before I pass over to my colleague, Ms Rogers, I acknowledge the progress to date and the gaps that are still in existence in the north west. There is no arguing with that.

Ms Magdalen Rogers:

Absolutely. The Deputy spoke about data and information being so important. In the neurorehabilitation strategy we are seeing that information and data coming onstream. Last week, the HSE published a report on inpatient beds around the country for a range of clinical areas, including orthopaedic rehabilitations but neurorehabilitation was in there as well. We now have specific figures on the number of dedicated neurorehabilitation beds around the country and there is a stark gap in the north west as regards the number of those beds. I see in CHO 1 just 13 of those dedicated neurorehabilitation beds. That is a huge gap that still exists. We have seen progress on the strategy, but in two particular areas in the north west there is that gap with inpatient neurorehabilitation beds. The community neurorehabilitation team in CHO 1 does not reach out to the Deputy's county of Sligo. It is only a team of three, so it is only serving people in County Donegal.

That is a vital service that is not available outside Donegal for the CHO 1 area. As Ms Cotter said, we have the gap in the long-term rehabilitation piece, with services of MS Ireland and other NAI member groups. In the north west, very good work has been done on implementing the neurorehabilitation strategy and we have a very good framework. We know what is needed and we have the data so we just need to put it in place.

Mr. Reinhard Schäler:

I want to go back to the question of whether we are a section 39 organisation. I would say that we are. Every year, section 39 organisations have to go through service arrangements with the HSE. It is year-to-year funding. The question is this: how can we develop a brand new service that has no template to follow? We are doing something for a group of people who have literally been left to die. They have been left to rot in nursing homes, with minimal services. One parent was told to face the facts and that what their son needed was hydration, nutrition and medication. That person is actively engaged with our service now.

There was not a service there, so we are developing something but how can we do it on a shoestring? We are delivering a service now for 28 clients. When we started, we proposed something for three to five clients and now we have 28. The demand is growing. How can we hire and pay staff on an annual budget when we do not know what we are going to get next year? We do not need people who are just coming out of university and who have the title to be a physiotherapist, an occupational therapist, a speech and language therapist or a neuropsychologist. We need people with experience. These people are in their 30s. They are not people who are going to work on a six-month or annual contract. They are people with families who have or are about to apply for a mortgage. They are looking for permanent contracts. How can anybody be given a permanent contract if we do not know what our funding will be for next year? If we are being told to expand our service and then six months later we are being told to forget about all of the recommendations and that we are not getting the money, there is no way we can grow.

There is an issue of competition. The people who work with us do not do so because they are looking for job security, long holidays and short working hours. They are people who believe that what they are doing really makes sense and has meaning. These people are really hard to find. Sometimes, I wish we could give those people the same job security and all the benefits that one gets in the public service. We would like to be able to give that to the people who work so enthusiastically with us. Unfortunately, we cannot and this is a big issue.

To go back to the ask, we have developed a service for people for whom there was no waiting list, because they were written off. There were no gaps because there was no service where you could have a gap. It is for people who were literally written off. We have one letter which says these people were written off. It speaks about them being no-hopers and people who were not worth the money, because they did not offer a return on the investment. Clinicians are trained to heal people or rehabilitate them, to get them back to where they were. What we are doing cannot be measured in the same way. We help people to live the life they have been given. We give them joy, fun and an environment where they can live a healthy life. We had another example where someone was going to get some medication to help them with their osteoporosis. It turned out that they did not have osteoporosis. After ten years of being in a wheelchair, they were healthy. They are people who are not taking any medication. We have been told by doctors to continue doing what we are doing, because it really seems to work. People were surprised by this. We see secondary injuries with clients; contractures, foot drop, etc. There is nothing we can do about the event itself, but whatever happens afterwards is our responsibility. We have to take on this responsibility. We are not calling for someone to do this for us. We are doing it and have been for the past four years, very successfully. The only thing we are asking for is that this is recognised and that we be allowed to develop the service for the people who need it. There are not even statistics about them. When we have been asked for numbers and figures, we have extrapolated from some of the experts who reviewed our service. They extrapolated figures from the UK. It is estimated that 25 people per year in Ireland require those services. In the past ten or 11 years since Pádraig's accident there are probably 300 people who have a similar injury. Where are they? Have they died or are they somewhere in a nursing home being turned once or twice a day with a TV as background noise? We do not know. This is also something we are addressing with researchers in UCD who have experience in epidemiology and have done similar studies for cystic fibrosis. We want to find out where those people are, how many of them there are and how can we help them.

The committee has heard from Mr. Grogan about what it means to be living far away from Dublin and what the service could do for his family and his son. Mr. Ó hUallacháin is a professional who has probably been taught how much better people can get through physiotherapy but has recognised now that what we are doing is not just about getting better. It is about prevention and helping people to live their lives with their injury.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank all the witnesses for appearing here today. I thank Mr. Grogan and Mr. Schäler for sharing their personal stories. I know it is difficult to do and it should not have to be done but I can understand why they would do so. I thank everyone for the fantastic work they do. I have had contact from constituents who have an acquired brain injury due to a stroke or other injury. They tell me that they got excellent acute care and had a good experience in the National Rehabilitation Hospital and were lucky enough to be able to go home, not to a nursing home. However, then there was nothing. This lack of follow-up leads to regression. It has led to family breakdown and mental health issues because the supports are not available in the community. People might need physiotherapy. Mr. Schäler spoke about people being abandoned in nursing homes over the years and being turned once or twice a day. That is a living hell for people. It is outrageous that this could happen in Ireland.

I presume the neuromapping project seeks to locate exactly where people are and what services they need. This needs to be done to ensure that the service being provided is adequate. The strategy, which has been praised by the witnesses, has been in place for a while. Why has it not been effective? Is it all about funding or is it because of a lack of staff? It has been four or five years since the framework for implementation was put in place. The witnesses have said that things are improving but will they give us an overview of where it is at now, where it needs to get to and what is required to get it there?

If rehabilitation is not available, there can be costs for hospital or nursing home care. Has anyone done any research on the costs of not having rehabilitation available? It would be interesting to know how much could be saved by having the proper services. People have a right to dignity and the UNCRPD is all about that. We should be ensuring that people are able to live their best lives. If the strategy were to be implemented tomorrow, what would the priorities be to make things better immediately? I know it is going to take time to build on those things.

Mr. Odhrán Ó hUallacháin:

In regard to the costs, on a rough search this morning before we came in, according to an article in The Irish Times the average rate for a public nursing home in 2018 was €1,564 a week. The cost for one person for 52 weeks would be €81,328. For 26 of our clients who are not able to live at home and have to be in a nursing home, the cost would be €2.1 million a year. If we consider what Mr. Schäler has said our asking price is, I would say it is a saving. What is not taken into account is that if these people were not in a nursing home, they would have to be in an acute hospital. At a committee meeting in 2019, the Taoiseach, Deputy Harris, who was Minister for Health at the time, said the average running cost of an inpatient hospital bed across acute hospitals is €878 per night. Members might do some maths on that and calculate the cost of a week's stay or a month's stay for someone who was not getting these interventions. Looking at the health economics of it, what we are trying to implement is a short-term investment for long-term gain.

Ms Alison Cotter:

Deputy Tully referenced some our own research within MS Ireland. For example, we have a piece of research that stated that delaying and reducing disability to people living with MS, not with any other neurological condition, can save the State up to €19 million per year. One of the programmes we are trying to implement at the moment and for which we have submitted a business case is our new physiotherapy programme. We have pilot projects called Active Neuro running in the midwest. Thank God, reduction of healthcare utilisation after this project is 43%. We have a 49% reduction in the number of people falling. As the average cost of a hip fracture is between €12,000 and €22,000, prevention of hip replacements could pay for a senior physical therapist in one CHO. For an investment of €880,000 per year, the State is saving about €18 million.

Another piece of research that we carried out in 2022 is on the societal cost of MS, in terms of the direct, indirect and intangible costs to society as a whole. That figure was €483 million per annum. I will hand over to my colleague, Ms Rogers, to answer the rest of the Deputy's questions.

Ms Magdalen Rogers:

The cost of the rehabilitation piece is very important in the context of what Deputy Tully said. My colleagues here from An Saol Foundation and MS Ireland have addressed the longer-term costs but there are also the immediate costs, such as the bed days lost when people are not being transferred out of acute hospitals because there are no rehabilitation places. There is actually a recent report issued by the HSE on the issue of delayed transfer of care because of not having rehabilitation services. I will ensure the Deputy gets a copy of that report. That work has been done and it highlighted a really important point, which is that neuro rehabilitation needs to be put in place for many reasons, including for the effective running of our health services. There is a need for that transfer to be available in order that people can move from acute care that is really very good onto the longer-term support services.

The Deputy asked a very good question on what has been done and what needs to happen. We have seen the progress from the outset and we have all said from the outset that there needs to be nine community neuro rehabilitation teams around the country. We still have gaps in that regard. We have two major gaps in the neuro rehabilitation strategy at the moment. A HSE report issued just last week showed for the first time the extent of the gap when it comes to inpatient beds. We always knew there was a very significant deficit in neuro rehabilitation beds. The HSE report last week is stark. On the overall deficit, we have a 58% shortfall in the number of neuro rehabilitation beds in the country. What is that doing? It means that people in the regions are not getting access to neuro rehabilitation in a rehabilitation setting. It also means that the National Rehabilitation Hospital, NRH, in Dún Laoghaire is becoming a funnel for all neuro rehabilitation referrals, which it was never meant to be. It is a complex specialist centre for a particular type of rehabilitation. However, there is now such pressure on the NRH that we see waiting lists of three to six months. We have almost become used to long waiting lists in the NRH. We almost do not question them anymore. As a result of that lack of beds around the country, everything is funnelling into the NRH.

Finally, we have a major gap in long-term rehabilitation services. Organisations such as MS Ireland and An Saol Foundation provide pockets of service, but we do not have them throughout the country. We do not have equal access to them. Those are the two pieces where the neuro rehabilitation strategy still has a lot to do.

Mr. Reinhard Schäler:

It is right to look at the cost of patients or clients, beds and care, but there are additional costs around that. Mr. Grogan said what his wife is doing. I could say the same about Pat. Pat is running a company that provides carers for Pádraig. That is a full-time job. Both Pat and I gave up our day jobs, in which we were doing productive work that we could still be doing. We cannot do that work, however, because there are no services to help us to look after our son. It is not just our case; it is everybody else's cases, including those in the Gallery. It is not just the person directly affected by the incident; it is the whole family - the partners, parents, daughters and sisters. It is everybody. There is a huge cost to society in that regard that is sometimes overlooked.

Our personal experience is that the waiting list at the NRH is not three to six months. We went to Germany. When Pádraig had the accident on Cape Cod, he came back to Dublin and eventually was seen by consultants. We were told there would be a waiting time of a year. We have heard that from other clients in An Saol Foundation as well. They are waiting for over a year. The time at the NRH was predetermined. It was not dependent on the condition of the person. Everybody who was severely affected was going to get three months. Those three months were not so much about getting the people better. They were getting some clinical interventions but it was not to get them better; it was to assess them. They wrote two books that explained it. They basically planned the rest of their lives, so that when they were going to the nursing home, the nursing home would know how to feed them, how to position and transfer them and all that kind of stuff. That took just three months. In some cases, a home care package was arranged. That was what the three months were for. After that - there has been scientific research on this - these people fall off a cliff. That is it. Once you get out of there, forget about it.

There is a need for an ongoing service in the community. There are stacks of reports metres high. A review that looked at our service in detail probably cost the best part of €100,000 to produce. That review made recommendations and we are ready to deliver them. Why are we not allowed to do this? It is difficult to understand that. We have many people to help us to do what is needed, what people have told us is needed and what the families are looking for. What they have experienced is a really good service. Let us do it. What we need is the funding for next year to start building this centre that will co-ordinate centres throughout the country, not just in Dublin.

It is not just a clinical approach. We are talking here about human rights. We are talking about the convention. I have before me a full page of laws that are potentially being breached. You could look at the Constitution, European legislation or international legislation. They all demand that people with disability, whatever the level of disability, have the same rights as the people who are sitting here. Imagine your husband, wife, son or daughter was in a situation like that and you were told, "If he does not get better, we will just keep him comfortable." That breaks your heart. It is hard to imagine anything worse. Of course, interventions have to be paid for, but people have a right to those interventions.

We talk about equality, integration, participation and all of these things. It is possible to do it; we have shown it is possible. Pádraig goes to concerts and to Germany to visit family there. We go swimming. People can do all of that but they need the right support to do so. We have them but they need a push over the line. Hopefully, the committee can help us with that.

Seán Canney (Galway East, Independent)
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First, I welcome everybody in the Gallery. It is great to see people in here listening to what is going on. I would like to say to the participants here that it is not easy. I feel the frustration that is building up but I also feel the energy they have to do something that needs to be done.

On the overall strategy on neurology services, Galway is a black hole. That needs to be fixed. Mr. Grogan spoke about having to pay for an ambulance to bring Shane to Dublin. It cost him €1,000 just to get an X-ray to see if somebody would do something with Shane's teeth. We have to get beyond this.

I am concerned about the spread of the services across the country. It is not equal. Some places have some services, although not enough, and other places have none at all. We need to make sure we get that right, and that is going to take time. There also needs to be more encouragement from Government for the HSE to make sure it happens.

Coming back to An Saol Foundation, I have looked at the drawings and the design team. I come from a construction background and it has the elite of the elite doing work for it. I understand they have offered to do this for it. I just hope the HSE does not come along and say it is going to do it its way. If it does, we are in trouble, as are the witnesses' sons and daughters because it will go the way other projects go. I am not being critical; I am being factual. As a committee, if we are to do a report on this, we have to make sure we say that this is a project that we can do differently and show how things should be done right. That is important.

If we keep going the way we are going in terms of delivery, we will end up in a situation where Shane will still be in Green Park nursing home or in the new nursing home, if opened. Other people will be frustrated by the whole thing.

Our witnesses are here telling their personal stories. I know first hand what Joe, Joan, Sarah and the family go through everyday as normal. People listening to this for the first time may find this shocking. I said when I came to the committee first that there are things that happen that we, as politicians, should not be proud of. Listening to the witnesses' stories today, we should not be proud of where we have left a lot of these people. They are our citizens and who need their rights to be upheld. It is up to us to do that. We heard as powerful a presentation today as I ever heard and it is important that we take it on board rather than paying lip service to it.

As Deputy Coveney said, we had the budget yesterday. We will now see the HSE’s delivery programme. We have an opportunity, as a committee, to maybe funnel into that and to see what we can do to progress this rather than just putting it in a report.

Mr. Reinhard Schäler:

Our proposal is to deliver a design build. We will have it costed. It will be squeaky clean. The Department and CHO 9 have indicated that they would be happier if we did it.

Michael Moynihan (Cork North West, Fianna Fail)
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Thank God.

Mr. Reinhard Schäler:

They said that if they do it, it will take much longer. We are in a position to do this. We are in position to start next year, if it gets into the capital plan for the HSE for 2025. That is the one thing that has to happen. The rest must happen too, but the one thing that has to happen is that we start next year and do not wait another year. We were going to do it later year or this year but it did not happen. It must happen next year. There is a time for it to be done and the time is now, not next year or the following year. That national centre will not just help people in Dublin; it will also help people around the country.

Ms Alison Cotter:

Very important points are being raised here today. To link back to something Mr. Schäler said and Deputy Canney raised, for the families affected by brain injuries, neurological conditions and progressive neurological conditions, it is the difference between someone being able to go to Mass in the morning, to pick up their children, to stay at home if they wish to do so or to access appropriate care when they need it. It is really about including them in the discussion. We have some of the families in the room today and they are at the centre of this discussion.

Another member organisation, Muscular Dystrophy Ireland, has highlighted the lack of special psychological support in the community for people living with muscular dystrophy and other neurological conditions. There is a dearth of service there in terms of psychological for the person but also the family affected by the condition. Mr. Grogan mentioned that his wife has willingly and wholeheartedly devoted her life to their child, as any mother would. It is about supporting the entire family unit to enable that person to live well with their family and in their community.

Violet-Anne Wynne (Clare, Independent)
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I missed a lot of the contributions but I came in while Mr. Grogan was talking about his son Shane. I thank him for what I heard. It was quite shocking to hear about the experience he outlined and how much it has impacted him and, in particular, his wife. Another measure we do not have is the personal cost to the families when the services are not there, and they are very much not there. I refer to waiting five years to get an assessment for an issue with a tooth.

It was pointed out that a number of laws are being breached here, and there is a list of them. Maybe the committee could get a copy of the list as that would be very interesting to have it to hand. I thank the witness for referring to that. It is about the personal cost.

In CHO 3, the community neuro-rehabilitative team has a number of vacancies. I think only half the vacancies have been filled so far. How does that impact that team in being able to deliver for the patients they are about to take on? Are people being left behind in some respects as a result of this?

In model 3 hospitals, patients should have access to a neurologist. We do not have a model 3 hospital in County Clare, which means we must travel to University Hospital Limerick, UHL, or to Galway, although I am unsure if there is an issue with taking patients from our region. People spend two to three hours travelling one way and then back again. We know that the cost of fuel is going to increase for those making those journeys. There are a number of costs being incurred here. Ms Cotter referred to research MS Ireland has done on costs in response to Deputy Tully. I did not catch all of it but perhaps she could mention the document and I could look it up.

Regarding the number of inpatient beds, if the witnesses have any idea how many we have in our region, that would be great. I know that when it comes to inpatient beds for those with eating disorders, it is a massive issue nationally. I want to get a picture for my region.

I thank the witnesses for their personal stories and I apologise for missing what they said about the great work they are doing. I picked up little bits from what they said.

Michael Moynihan (Cork North West, Fianna Fail)
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Mr. Schäler might comment first and then I will call Ms Rogers or Ms Cotter.

Mr. Reinhard Schäler:

I do not have much information to add in response to the questions asked, but I emphasise that neither myself nor Mr. Grogan are the only ones. There are 28 people in our centre and most of them have very similar stories. The story of one family, the Muldoons from Limerick, is that their son was brought to a place in north Dublin. They complained about the service. Members might remember a "Prime Time Investigates" programme about Patrick Fitzgerald. His wife had a brain injury and she was placed in a home. When he complained, he was subsequently prevented from seeing his wife. When he was allowed to visit, it was for an hour and a security guard knocked on the door and told him when it was time for him to leave. A similar issue arose in relation to a woman who had a son in Dublin. She complained about the services and her son was swiftly made a ward of court, which wrote her out of the equation altogether. She had to visit him in Dublin but she did not have the money to go there. The whole family was broken up.

They are heartbreaking stories. This is not something that should happen in 21st century Ireland. It sounds medieval. I am German by origin and I have been living here for 34 years, longer than I ever lived in Germany, but I know my German history. People closed their eyes when terrible things happened. To my mind, the comparisons are difficult to make, but you know when something is fundamentally wrong. People are forgotten about. They are locked up somewhere and not seen. Some of our clients have issues going out because they are afraid to be looked at and seen. They are not integrated into society. That is still happening. We know it is happening. We cannot say we do not know about it. People are left behind, ignored, and literally written off. That is happening in front of our eyes. We cannot allow it to happen. We have an opportunity to change it. It is up to us to do something about it. It is similar for people with other conditions, but the service must reach the people who need it first and not stop when it gets to them because they are not worth it. People have rights. It is not just clinical considerations; it is also human rights issues that must be looked at.

Ms Magdalen Rogers:

I want to come back to Deputy Wynne on the situation in her region, as she had specific queries around it. I will mention two points: the first relates to the community neurorehabilitation team. We talked earlier about how the teams provide specialist rehabilitation for 12 weeks. It is a vital service. We have seen teams rolled out around the country. She mentioned the vacancies in her region, CHO 3. It is just half the team that needs to be in place. It is not that there are vacant posts. It is that they have not been funded for a full team. There is less than half of the full neurorehabilitation team of 12 whole-time equivalents in CHO 3.

The theme of our pre-budget submission this year was "right place". We zoned in on the Sláintecare motto of right care, right time, right place. We zoned in on the right place because the regional inequity is something that has been brought up by committee members throughout the meeting. It is unacceptable to us that care should depend on where you live in the country.

Deputy Wynne also inquired about the number of dedicated inpatient neurorehabilitation beds. This is a report that was just published last week by the HSE. We now have the stark, clear data on the number of neurorehabilitation beds around the country. There is no getting away from it. In Deputy Wynne's region, CHO 3, there are just six dedicated neurorehabilitation beds. There should be six per 100,000, but CHO 3 is down to 1.5 per 100,000. It is another area of the country where we see a stark deficit of inpatient neurorehabilitation beds. What does that mean? It means people outside Dublin are not getting neurorehabilitation at the critical stage when they need it, both at the inpatient stage in the community and then, as we highlighted, in the long-term piece as well.

I will ask my colleague, Ms Cotter, to speak about the impact that has on people.

Violet-Anne Wynne (Clare, Independent)
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I thank Ms Rogers for taking the time to pop into us.

Ms Alison Cotter:

Deputy Wynne mentioned the figures I raised about costs. MS Ireland has research that states delaying or reducing disability due to MS could reduce costs to the Irish health system by up to €19 million per annum. We also published a document in 2022, A Societal Cost of MS, which came to the conclusion that the direct, indirect, and intangible costs associated with MS cost Irish society €483 million per year. Figures are one thing and the impact on a person is another.

Deputy Wynne mentioned the disparity in regional neurologists. People living with MS and other neurological conditions across the country must travel 100 km or 120 km to see their neurologist. There is a financial cost associated with that given the cost of fuel, but there is a cost to the person as well. Fatigue is a very common symptom experienced by someone living with multiple sclerosis. People with MS must visit a neurologist at least once a year, if not more, and after a visit, a mother, perhaps might not be able to get out of bed for a couple of days. She has to face her children and explain why they cannot do something today. It is because of the fatigue caused by having to travel so far to access vital services that should be on their doorstep.

Violet-Anne Wynne (Clare, Independent)
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I thank Ms Cotter.

Michael Moynihan (Cork North West, Fianna Fail)
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Did Deputy Coveney indicate that he wants to come in with a supplementary question?

Simon Coveney (Cork South Central, Fine Gael)
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I want to try to crystallise the ask as much as we can, so that we can be as helpful as we can. There are many understandable asks here, such as having full regional community-based teams equally across the country.

There are asks in terms of community care beyond the 12-week programmes that might be available. There is obviously a big ask in terms of the new project the witnesses want to lead. It is totally understandable that the State would like the NAI, as an organisation, to lead. The State relies on section 39 organisations in lots of areas. They do an amazing job, in many cases, more efficiently than the State could do it because of the kind of resourcefulness the witnesses have spoken about today in putting together a coalition of very smart, experienced people, many of whom are doing it for nothing in terms of financial reward. It would be helpful for me to understand whether the centre they want to create is very much consistent with what we need in terms of the overall strategy? Should it be prioritised as a big capital expenditure for next year? The sum is €25 million. If an extra €100 million is to be spent in this area, is a quarter of that to go to the project? Is that the best way we can spend the money? I do not know what the figure will be, but we have pushed for an increased spend, certainly on the capital side, because there is a lot of capital available. With that capital comes a significant current spend in terms of staffing, which the witnesses have outlined will save the State money, rather than cost it money in the medium term and ensure that people are in an appropriate residential setting, as opposed to a nursing home or a hospital.

What the witnesses say makes an awful lot of sense to me, but I want to try to understand what the key priority areas are in terms of current and capital expenditure that they want to see us pushing for in 2025. The HSE will be putting together its service delivery plan now that it knows how much money it will have to spend, both for the end of this year and into next year. Trying to crystallise those asks would be helpful for us because there is such a strong case for all of this to be done. It would be helpful for us to try to prioritise the asks, in particular on the capital side because there will be money available.

Michael Moynihan (Cork North West, Fianna Fail)
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Do the witnesses wish to comment or perhaps come back to the committee with a specific ask in writing?

Ms Alison Cotter:

I would be happy to comment. From an MS Ireland perspective, we have crystal-clear asks in terms of the budget and the spend for next year. As I said, we have seen significant progress in 2024 with regard to our MS respite centre, where €40 million was invested, but we need to see that on a sustained basis. Our ask for budget 2025 was €627,000 per annum on a sustainable basis to keep that respite centre open, keep people living well at home and prevent crises in families. Families living with MS tell us that if it was not for our respite centre, their loved one would have had to enter a nursing home, which is not where the family want them to be or where the person wants to be. The critical nature of these services cannot be overstated. Our other ask for budget 2025 was around the physiotherapy programme and the €880,000 investment that we referenced earlier, which could save the State up to €19 million a year by delaying and reducing the disability caused by MS.

I know my other colleagues in the Neurological Alliance of Ireland, including An Saol and other member organisations, will speak to their own projects, which are of phenomenal value. I know there are also asks from other NAI organisations dealing with Parkinson's and muscular dystrophy, such as ABI and Headway. I do not want to understate the value that these services are providing on the ground to people with a range of neurological conditions. I am representing MS Ireland today and An Saol is also present, but there are 30 member organisations behind us that all have key asks. We cannot understate the value of those services for people living with the conditions on the ground.

Mr. Reinhard Schäler:

We have three asks. The main ask is that we are allowed to start building that centre next year. That does not mean the full capital cost has to be allocated for next year but enough to allow us to start doing that. It will probably take two or three years to finish it. As to whether it is a priority for the NAI, it is probably not. As my colleague said, there are more than 30 organisations represented by the NAI, so what do we prioritise? We can only highlight our own organisation’s needs. I am very pragmatic. I still have a lot of energy and I am trying to preserve that and invest it in a service that is really needed but has not been there to date.

When I first got involved, I did not have any idea of what I was facing because I was doing something completely different. I started to read all of the strategies, papers, reports and plans. What I saw was that they were all saying what we were doing, but what was lacking was the filtering through to the practice. That is what we are demonstrating. We have proposed something that will go way beyond the services that we offer to people with severe acquired brain injuries. It is a model that can be duplicated not just in that area but in many other areas where similar services are required. I am obviously a bit biased but we have the backup of international experts to support that. It is a model that other people will be able to replicate and we can all learn from it. There is an opportunity to kick that off and if we let it pass, we will all be sorry in a year or two.

Seán Canney (Galway East, Independent)
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What is on the ongoing cost for An Saol? Is it looking for a commitment of €800,000 per annum?

Mr. Reinhard Schäler:

In the middle of last year, the HSE asked what we would need to start implementing some of the recommendations. We sent a proposal to the HSE that outlined what we needed and it came to a sum of €880,000. That is to start developing the service that we deliver at the moment. The HSE has proposed that Teach An Saol should be built in two phases. The first phase would cover services that we already deliver, so there would not be a big increase in annual funding. We would then work on the respite and transitional living parts, which are services that are badly needed. We are all getting older and we do not know what is going to happen to our children in a few years’ time, and we do not want them to end up in a nursing home. We need this integrated centre. There is a reason that it has those four hubs and four elements. We would be happy to stage that in two phases and take a little bit of time to make sure it is sustainable.

Ms Magdalen Rogers:

I want to come back in on the prioritisation piece. Sitting where the committee members are sitting, I would be asking the same questions. I point out that neurorehabilitation in Ireland is starting from a very low base. While we have seen great progress in community neurorehabilitation teams, we are still at the bottom of Europe with regard to rehabilitation consultants and services that people take for granted in other countries throughout Europe. We really have to look at this. The neurorehabilitation strategy was published in 2019 and five years on, there is still so much to do. We are not just looking at next year but at planning beyond that to continue that investment in neurorehabilitation services.

We have highlighted today that great work is being done in the community neurorehabilitation teams and there is definitely a piece around inpatient beds and the long-term neurorehabilitation that the organisations provide. However, one really important message that we would like the committee to take away today is that the voluntary sector needs to see itself in the neurorehabilitation strategy. We are part of the implementation of that strategy. The committee has heard today how the organisations are stepping up to the mark in so many parts of the country. This is not starting from scratch. Organisations are already providing the services but what we need is consistency. If an organisation is providing a service in one part of the country, why is it not being facilitated when there is a clear need to provide that in another part of the country? It is not just about year-on-year prioritisation and is very much about looking at the infrastructure of neurorehabilitation and how we build that up to get to where we need to be.

Michael Moynihan (Cork North West, Fianna Fail)
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I sincerely thank the witnesses for their presentations, particularly Reinhard and Joe for their personal testimony. It is a difficult thing to talk publicly about your own family but it is greatly appreciated that they have the courage to do that in trying to inform public thinking and get the best possible, not just for their families but for everybody affected by acquired brain injury. I thank them for attending and for their sincerity in the work they are trying to do.

Deputy Coveney mentioned that the HSE will have its funding allocated for next year. The HSE really needs to have that plan in place for 1 January 2025. My experience is that it would come out sometime in the middle of May and it would not be spent again. One project was costing €50,000 and, this morning, we got confirmation of something that was supposed to be sanctioned last January. That is totally unacceptable.

We will continue to work with the organisations. I thank them for their presentations. I thank the members who joined us in the Visitors Gallery, as well as the families who attended. I know there are people watching us at home who keep a very close eye on the proceedings of the disability committee and we appreciate their help as well.