Joint Committee on Health díospóireacht -
Wednesday, 15 May 2024

Neurology and Neurorehabilitation Healthcare Strategies: Discussion

An Cathaoirleach

We will now commence in public session. I apologise for the technical issues we are having. Apologies have been received from Senator Annie Hoey. Before we get to the main item on today's agenda, the minutes of the committee meetings of 8 May 2024 have been circulated to members for consideration. Is that agreed? Agreed.

The purpose of today's meeting is for the joint committee to consider the implementation of healthcare strategies for neurology and neurorehabilitation with representatives of the Neurological Alliance of Ireland and the Multiple Sclerosis Society of Ireland. I am pleased to welcome from the Neurological Alliance of Ireland Ms Magdalen Rogers, executive director. Professor Sinéad Murphy, national clinical lead for neurology, was also due to be in attendance. From the Multiple Sclerosis Society of Ireland I welcome Ms Alison Cotter, research and advocacy officer; and Ms Richelle Flanagan, patient advocate.

I remind witnesses of the long-standing parliamentary practice that you should not criticise or make charges against any person or entity, by name or in such a way as to make him, her, or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if your statements are potentially defamatory in relation to an identifiable person or entity, you will be directed to discontinue your remarks. It is imperative that you comply with any such direction.

Members are also reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable.

I remind members of the constitutional requirement that they must be physically present within the confines of the Leinster House complex in order to participate in public meetings. I will not permit a member to participate where they are not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside of the precincts will be asked to leave the meeting. In this regard, I ask any member taking part via MS Teams that they confirm they are on the grounds of the Leinster House complex prior to making a contribution.

To commence our consideration of the implementation of the healthcare strategies for neurology and neurorehabilitation, I invite Ms Rogers to make her opening remarks on behalf of the Neurological Alliance of Ireland.

Ms Magdalen Rogers

I apologise; unfortunately, we do not have representation from the neurology clinical programme this morning. On behalf of the Neurological Alliance of Ireland, NAI, the national umbrella for more 30 neurological charities, I thank the Chair and members of the committee for their invitation today to consider the implementation of healthcare strategies for neurology and neurorehabilitation services. Members of the committee attended our briefing in the AV room on 24 April, when we outlined the challenge for our health system in responding to the needs of the 50,000 people diagnosed with a neurological condition each year. More 860,000 people throughout Ireland are currently living with a neurological condition and that number is set to increase significantly with our growing and ageing population. Following on from the NAI's presentation in May of last year, we welcome this further opportunity to outline to members of this committee the progress that has been made and challenges that remain.

Unfortunately, while we have seen significant investment over the past three years to implement national strategies for neurology and neurorehabilitation, this legacy of progress is at serious risk of being undermined by the ongoing recruitment moratorium and delays in delivering on commitments that have been made to people with neurological conditions, their families and communities. On neurology services, we thank the committee for its support in response to our 2022 call for action to tackle the shortage of 100 specialist neurology nurses. Thanks to its support and representation, and the interest and commitment of Minister of State for disabilities, Deputy Rabbitte, funding for 21 specialist nursing posts was announced in October 2022. Unfortunately, the benefits of this significant investment have yet to be fully realised in hospitals throughout the country in Cork, Waterford, Sligo, Limerick, Galway and Dublin because 13 of these vital nursing posts are held up within the current recruitment moratorium. We are also going to highlight the issue of regional inequities that exist in access to outpatient neurology services. The NAI is calling for funding in this year’s budget to begin to tackle this inequity by investing in five consultant neurology posts to support hospitals in Portlaoise, Bantry, Wexford, Letterkenny and Mayo.

On neurorehabilitation services, we have engaged regularly with this committee over the past two years in relation to the delays in implementing the 2019-21 implementation framework for the national neurorehabilitation strategy. Again, we recognise some positive Government progress towards its commitments in the Sláintecare action plan and the current programme for Government on the neurorehabilitation strategy. Our call to expedite the roll-out of nine community neurorehabilitation teams across the country saw funding allocated by Minister of State with responsibility for disabilities, Deputy Rabbitte, for four teams across two successive budgets in 2022 and 2023. Unfortunately, as we will highlight today, the delivery of this important commitment to communities is also being impacted by delays. The promise to this committee last May to see teams in CHO 2, CHO 4, CHO 6 and CHO 7 fully functional by early 2024 has not been realised. A full year on, we still have the same situation we outlined to the committee this time last year, where only two of nine teams are up and running nationwide.

Community neurorehabilitation teams represent one of three key deliverables from the national neurorehabilitation strategy. The other two key commitments from the strategy are the delivery of long-term community neurorehabilitation services and inpatient neurorehabilitation beds. We need further investment to support the delivery of longer-term community neurorehabilitation services beyond the maximum 12 weeks of intensive rehabilitation provided by the community neurorehabilitation teams. It makes little sense to invest in intensive short-term rehabilitation if we cannot support individuals in the longer term to return to or retain their employment, maintain their independence and to live well with their neurological condition. The majority of these services are delivered by the voluntary sector, as will be outlined by my colleague, Ms Cotter. Research published in 2023 by the NAI, the Disability Federation of Ireland and the HSE showed that nearly 100 unique supports are being delivered on the ground in communities by voluntary providers to people with neurological conditions and their families. This Government has made some important investments in long-term community neurorehabilitation services in the 2024 HSE service plan, but it is May 2024 and funds still have not been released to enable these vital services to be delivered on the ground by voluntary providers.

The third deliverable from the national neurorehabilitation strategy is a commitment to tackle the shortage of specialist inpatient neurorehabilitation beds throughout the country, especially outside of Dublin. We know that we need 300 beds for the Irish population and that we fall far short of this. The most recent major trauma audit report in 2021 highlighted that the proportion of major trauma patients who received rehabilitation in an inpatient setting declined from 10% in 2020 to 7% in 2021. We thank the committee for the opportunity to highlight these issues and ask for its support for our key asks today as follows: to enable the funds that have already been committed to specialist neurology nurses and community neurorehabilitation services to be actively translated into actual services on the ground; to request that the HSE deliver an immediate action plan within a timely timeframe to tackle the shortage of inpatient specialist rehabilitation beds; and to begin to tackle the regional inequity in access to consultant neurology services by providing funding in this year’s budget to support the development of dedicated outpatient neurology services for Portlaoise, Bantry, Mayo, Letterkenny and Wexford hospitals.

An Cathaoirleach

I thank Ms Rogers. If she could indicate who she is bringing in for some of the questions, it would be very helpful for the Chair. It is unfortunate that Professor Murphy is not available but we realise the pressure on clinicians. I thank her for indicating that she would not be able to be here.

Senator Seán Kyne

I thank the Chair. I welcome the witnesses here this morning. I acknowledge their continued advocacy in this important area. Ms Rogers mentioned that only two of the nine teams are open running nationwide. What areas are they working in? What is the make-up of 13 teams?

Ms Magdalen Rogers

The teams up and running at the moment precede the 2019 implementation plan. Those teams are in CHO 1 and CHO 3. It is important to say that they are not full teams. The team in CHO 1 in the north west has a whole-time equivalent of just three, whereas the recommended whole-time equivalent is 12. The team in CHO 3 in the mid-west has been up and running for over a decade. It has a whole-time equivalent of seven; it should have a team of 12. A submission was made to the Estimates process in 2023 for an uplift of the CHO 3 team. That was not funded in the service plan. Our understanding is that this will go forward to the Estimates this year. In response to the Senator's question, those are the only two teams up and running. A commitment was given to this committee in May last year that the teams in CHO 2, CHO 4, CHO 6 and CHO 7 would be up and running by early 2024. Parliamentary questions we received recently have stated it will be late 2024 before those teams are up and running. We understand that the primary notifications have not gone out yet to get those teams up and running. On the composition of those teams, I will defer to my colleague, Ms Flanagan.

Ms Richelle Flanagan

I thank the committee for the opportunity to speak. I am a dietitian but I also live with young-onset Parkinson's disease. The neurorehabilitation teams are made up of health professionals such as an occupational therapist, a speech and language therapist, a physiotherapist, a neurorehabilitation consultant and a neuropsychologist, I think. Unfortunately, there is no dietitian as part of that team. That is a gap there in the team. It is important to have multidisciplinary care to keep people as well as possible, as close to their homes as possible.

It is sorely missing for people with neurological conditions. I can obviously speak from the perspective of Parkinson's where there is a huge gap in care. If you look at OECD figures on chronic disease, we are doing well with reducing the number of deaths from diabetes, heart disease and cancer, but we are seeing an increase in the number deaths involving people with neurological conditions. We can tie that back to the fact they are not getting the same multidisciplinary care as the other chronic diseases.

Senator Seán Kyne

On neurological services in Mayo, or the unfortunate lack thereof, is there outreach from UHG to Mayo at present?

Ms Magdalen Rogers

There is not. Our information from the neurology services in Galway is that one in four of their referrals is from Mayo hospital, but they do not have the resources in Galway hospital to provide outreach services. They are keen to provide them. There are significant issues for patients travelling from Mayo to Galway, but also for clinicians in Mayo and local GPs who do not have the opportunity for the services and expertise of a consultant neurologist. There is an entire catchment area that would benefit from having a dedicated neurologist in Mayo hospital. According to the 2016 model of care for neurology services, all model 3 hospitals should have dedicated outpatient neurology services. We will speak to this issue again this morning, but Mayo is an outlier in that regard along with a number of other hospitals. There are smaller hospitals with neurology outreach while Mayo does not. It is one of the things we are calling for investment of resources in, so that service can be in Mayo hospital too.

Senator Seán Kyne

What do patients in Mayo who need neurology services in Mayo have to do to see a neurologist?

Ms Magdalen Rogers

To put it simply, they have to travel. We have had a number of meetings with patient advocates who have described that experience. There are parents of young families and people having to take a day off work to accompany someone to a hospital appointment. It is important to remember that, with neurological conditions, it is not just six months or a year and treatment is over. We have people who have been travelling for neurology appointments a couple of times a year for 20 or 30 years. That is a significant period of their lives, and those of the carers who have to accompany them. It may involve people taking a day off work, people getting up extremely early and facing the Galway traffic, which, I believe, is another significant issue. Some people have to travel for specialist care, but a lot of these people have a confirmed neurological diagnosis. There is no reason they could not be seen by an outreach neurology service once they have their diagnosis.

Senator Seán Kyne

Neurology services in Mayo are effectively non-existent. Would it be a case that marginal cases, who maybe in a hospital with a full service would be referred and seen, are now just being left without even a referral because there is deemed to be no point because of the waiting lists elsewhere? I am talking in particular about the elderly who have neurological conditions. I assume that for significant trauma cases there would be a full transfer to Dublin or wherever. However, elderly patients who may have had the onset of a neurological issue might just be left there unattended by a neurologist.

Ms Magdalen Rogers

I am conscious that we unfortunately do not have the national clinical programme in neurology here to respond to that. I can only speak to what patients have told us. We do not speak for neurologists. We are aware the neurology services make every effort to ensure safe care and that people are seen when they need to be seen. We have spoken to patients and clinicians on the ground who would be aware of this issue and of the travel and stress involved for people. As the Senator says, if it is a choice between having a patient travel a long journey for regular care, that of course has to come into the clinician's decision. Again, I am not speaking for neurologists or the neurology clinical programme, but it makes sense that if you have a patient travelling a long journey you will try to minimise that journey. Having a service closer to home would be better practice and more in line with the model of care for neurology that recommends that service in all model 3 hospitals, and also Sláintecare with having the right care in the right place at the right time.

Senator Seán Kyne

This is probably also a question for specialists. What is the nature of the illnesses and conditions presented for referral? If a patient has head trauma, unexplained seizures, severe headaches or other neurological symptoms, would they be referred as a matter of urgency? I am trying to find out if people of a certain age, for example, are being left unattended?

Ms Magdalen Rogers

As the Senator says, we do not have that expertise from the neurology programme with us this morning. We can certainly bring back any questions to those involved and follow up with the committee afterwards. I know from experience of working for many years in the NAI that there is a strong commitment among neurologists to ensure safe care. They will always prioritise people with urgent cases. The Senator mentioned headache, which is a significant part of referrals to neurology services. As he can imagine, all cases of headache have to be investigated as to whether there is a more serious issue. The issue we are looking at is certainly one of safety, but it also an issue of the burden on patients and families of having to travel for those services and the regularity of care. My colleague Ms Flanagan wants to come in with an example. She works as a dietitian.

Ms Richelle Flanagan

I will follow up on access to care. I do a dietician call-back service for the Parkinson's association, so I talk to patients weekly. Lack of access to neurologists is a severe problem. We have the worst neurology to patient ratio in Europe at 1.3. The average in Europe is nine. We have 1.3. I spoke to a woman last week in Letterkenny, County Donegal, who was diagnosed seven years ago and that is the last time she saw a neurologist - seven years ago. That is regardless of her husband contacting to try to get her to see a neurologist. Seven years. She has declined. She has lost weight. Her symptoms have got worse. People with Parkinson's are accelerating through their condition because they are not getting access to the services they need. We also know that the nurse in the Parkinson's Association of Ireland has said recently that a lot of people in the northern counties are travelling into Northern Ireland to get access to neurology care. I have come across this.

We also know that many people are going to private neurologists because they cannot get access. You are dealing with a condition that, in older people, is very severe in its physical and mental impacts. There is also late onset of dementia - Lewy body dementia and psychosis. We know that only 10% of people with Parkinson's get access to mental health services. Only 15% have access to dieticians. Only 30% have access to speech and language and OTs. These are all lifesaving interventions they are not getting access too. On travelling, there is the example of an 80-year-old lady in Bantry, County Cork, who has seen a consultant once in the year. She has to get a referral to Cork city and travel a 160 km round trip. She is 80. Many of these people can be affected so they cannot drive because they are on medications that might impact their safe driving. Neglect of patients with Parkinson’s is happening, and I am sure it is also happening with other conditions. There are other things like progressive supranuclear palsy, MSA and Huntington's. These people are also left without care and are progressing because they lack access to that care.

Deputy David Cullinane

Looking at all of the figures in the opening statement, I reminded myself that there are real people behind them who need access to services. Whether that is the neurological teams in the community or the specialist beds, or the neurological nurses across the counties mentioned, there are people depending on these services. The first issue I raise is the specialist nurse positions. It strikes me as bizarre that, on one hand, the Government would make an announcement to fund these posts but then, on the other, put in place a recruitment embargo and block the implementation of the very posts they funded.

We have been told that the reason for the recruitment embargo is to manage and rein in spending. It is being spun in terms of there being runaway spending, as opposed to money having been allocated. In budgets, money is allocated to certain posts, but hiring is then held up because of an embargo. It makes no sense. We have to call out the madness of the recruitment embargo generally and the impact it is having on patients. We need to follow up on this with Bernard Gloster. When we challenged him on the recruitment embargo, he said that the HSE is still hiring and that some posts were not being held up. We need to get information on that and see whether it can be dealt with because those posts need to be implemented. Do we have a breakdown on the number of posts that have not been filled, in terms of locations?

Ms Magdalen Rogers

We do indeed. I thank the Deputy for asking the question. I will recap where this investment came from. I acknowledge the Minister of State, Deputy Rabbitte, for recognising this. When we launched our campaign in October 2021, we had a shortfall of 100 specialist neurology nurses. I will give context for that. In respect of multiple sclerosis, 32 nurses are required for the Irish population. We currently have 18. For Parkinson's disease, 50 nurses would be required for the Irish population. We have just 10.5 whole-time equivalent nurses, a fifth of what is required. As I said, headache is an issue that needs to be investigated in order to rule out serious causes and there is also the issue of the maintenance of people with long-term migraine. We should have 37 headache nurses, but we have just nine. We should have 37 epilepsy nurses, and we have just 26. The commitment to 21 nurses was given in view of that critical shortage and the crucial importance of those nurse specialists to the ongoing care of people with neurological conditions.

As Ms Flanagan outlined, the nurse specialist is critical for people with Parkinson's disease, but just one in five people with Parkinson's disease have any access to a specialist nurse. On the Deputy's question on the location of the 13 posts in the recruitment freeze, they are in Cork University Hospital, Tallaght University Hospital, Galway University Hospital, Waterford University Hospital, Sligo, Limerick and the Mater. A total of four nursing posts have been held up in the recruitment process in Waterford University Hospital. They are vital nurses for conditions such as epilepsy, multiple sclerosis and Parkinson's disease. Those nurses were expected in those hospitals. The hospitals made plans to expand and develop their services on the basis of those nurses being in place. It leaves a huge gap in what were already overstretched neurology services.

Deputy David Cullinane

There is a shortage of at least 100 specialist nursing posts. There was funding for 21, which is only a fifth of what is needed. Even at that, 13 of those posts have not been delivered and have been held up behind because of the embargo. That is the situation as of today.

Ms Magdalen Rogers

Exactly.

Deputy David Cullinane

That is not acceptable. We need to follow that up with the HSE. Bernard Gloster came before the committee to discuss this issue, as well that relating to neurorehabilitation teams. Commitments were given. I pulled out the briefing note we received from the HSE last April in April 2023. On community neurorehabilitation teams, has there been progress in CHO 2 and CHO 4? Have those teams been delivered?

Ms Magdalen Rogers

They have not been delivered on the ground. As the Deputy knows, there was a commitment given last May to the committee, shortly after we appeared before it, that the teams in CHO 6, CHO 7, CHO 2 and CHO 4, would be up and running by early 2024.

Deputy David Cullinane

I have the note here. Regarding the commitment, it states that in relation to the teams in CHO 2 and CHO 4 in the 2023 budget, funding has been provided for two larger community neurorehabilitation teams. The note refers to 12 to 13 team members and that it was planned to have the teams operational in quarter 4 of 2023. That was the commitment given to us in good faith when we dealt with this issue. Clearly, it has not happened. Has the alliance been given any satisfactory answer as to why that has not happened? Further to that, has it been given any indication as to when the teams will be operational?

Ms Magdalen Rogers

The responses we are receiving to parliamentary questions now indicate that it will be late 2024. We understand that this is an administrative issue; at least that is how it has been outlined to us. The commitment is there, but we have not seen the button pressed in order to have teams up and running.

Deputy David Cullinane

I fail to see how, even with administrative issues, that could be the case. That is a matter for the HSE to sort out. Tens of thousands of people work in the HSE. I do not see how it cannot sort out whatever issues exist. If a commitment has been given that something will be operational by the end of 2023 and we are now told it might be as late as the end of 2024, that makes no sense to me. We need to follow this up because it was the head of the HSE who came before the committee and wanted to deal with this. He gave commitments to the committee that it would be done, and it has not happened. Whatever the issues are, they need to be sorted out. I do not think that we can accept a deadline of the end of 2024 in light of the commitment that was given. I do not see it as satisfactory that the HSE can refer to administrative issues.

The alliance has asked three things of the committee, namely that we raise the issue of specialist neurology nurses and neurological community teams, which we have dealt with. The third matter is beds. What progress has been made on specialist rehabilitation beds in recent years? What is the shortfall in that area?

Ms Magdalen Rogers

We should have 300 specialist post-acute neurorehabilitation beds for the Irish population across conditions, including people who have sustained acquired brain injuries and need specialist neurorehabilitation and those with progressive conditions such as Parkinson's or multiple sclerosis. There are a range of conditions involved. I would highlight the critical nature of that rehabilitation.

Deputy David Cullinane

How many do we have?

Ms Magdalen Rogers

We have less than a third of the beds that we require for our population. Unfortunately, we have not seen much progress in that area since the implementation plan was published in 2019.

Deputy David Cullinane

I want to ask about the source of the figure of 300. Is that a HSE figure from its analysis or is it the alliance's analysis?

Ms Magdalen Rogers

That is from the model of care for specialist rehabilitation.

Deputy David Cullinane

The HSE model.

Ms Magdalen Rogers

Exactly.

Deputy David Cullinane

It has identified the need for 300 beds, but only about one third of those are in place. That is a common pattern. It is the same with specialist nurses, where we have one third, or perhaps even less, of what is needed. It is the same for the teams. The whole area is under-resourced. I go back to what I said at the start of the meeting, namely that there are real people behind that who need access to services they are not getting. Could the witnesses outline for us the importance of having those specialist beds for patients, particularly in view of the fact that we only have one third of the number required? Why is it important that those beds are delivered? What would the mean for those with neurological conditions?

Ms Richelle Flanagan

In terms of specialist beds, care needs are extensive. People with progressive supranuclear palsy can fall up to 20 times a day, which is a huge fracture risk. It is important to have those beds in order to get on top of that and ensure that people do better in the community. Beaumont Hospital carried out a service pilot of early support discharge, which showed that the hospital could save up to €850,000 per year if patients had access to rehabilitation care before they went out into the community. Ultimately, people end up back into hospitals. Neurological patients are the biggest blockers in terms of beds. In CHO 6 and CHO 7, patients with Parkinson's can be in hospital for 27 days. They leave in a worse state than when they go in because they do not get access to trained multidisciplinary care professionals.

Deputy David Cullinane

I thank the witnesses.

Deputy Róisín Shortall

The witnesses are very welcome. I thank them for their presentations. Why is nobody here from the clinical programme? Were apologies received from those representatives?

Ms Magdalen Rogers

Unfortunately, they were not in a position to attend.

Deputy Róisín Shortall

Did the Cathaoirleach receive a letter from them?

An Cathaoirleach

No, I did not. I believe it is down to the clinicians having difficulties in their job.

Deputy Róisín Shortall

It is quite unsatisfactory, if that arrangement had been made. The other thing, of course, is that we will have to have the HSE and the CEO back before the committee because very clear commitments were given to us this time last year. We took those commitments in good faith and they are not happening now. It is really disappointing. Apart from the rights of people with neurological conditions, this is a no-brainer in terms of investment and the return the HSE would get on investment and, indeed, the return society would get too, which would enable people to go back to work and live fuller lives and so on. We will pursue that very soon.

I will start with the specialist nurses. I was recently at a presentation by the Parkinson's society. It outlined the enormous difference it makes for people living with Parkinson's disease to have access to a specialist nurse. It transforms their lives. It is very hard to see any excuse for not going ahead with the recommendation of 100 specialist nurses. The recommendation for 100 comes from the model of care, is that right? Yes. Twenty-one were recommended and funded in budget 2022. We are now in the middle of 2024. Those posts were funded long before the recruitment embargo. How did they get caught up in the recruitment embargo? Why were the posts not filled? Was there a particular reason? Will the witnesses talk about that?

Ms Magdalen Rogers

I can talk about it a little bit. I had hoped that the lead would be here to answer that in more detail. In our understanding, there was a delay in notifying the hospitals to go ahead and recruit those nurses. While the funding was delivered in budget 2022, by the time the letters went to the hospitals it was May 2023. That gave an extremely tight window for hospitals to recruit to a specialism as specialised as neurology nursing.

Deputy Róisín Shortall

Was that the go-ahead from the HSE, from HR?

Ms Magdalen Rogers

That was the go-ahead from HSE HR. That is our understanding. We can clarify that with the clinical programme. It is my understanding that it was late April or May by the time those letters went out to hospitals. Understanding the specialist nature of neurology nurse specialists, there is a limited pool so it takes time to get that turnaround to have those nursing posts advertised and to select suitable candidates. We know the nurses are there but it takes time to recruit to these posts. It was an impossibly tight window to try to get those nurses recruited. It is really important that when this current recruitment freeze is lifted, those posts will be recognised and protected.

Deputy Róisín Shortall

It strikes me that those posts should have been exempted because they were already funded and it was because of delays on the part of the HSE HR department that recruitment did not start. It was not a question of a lack of availability of nurse specialists.

Ms Magdalen Rogers

That is as we understand.

Deputy Róisín Shortall

It was because of its administrative delays. We need to tackle that very urgently. Looking through the ones that were not filled, there were five specialist nurses for MS, for example. Other positions were not filled in respect of Parkinson's disease, other neuromuscular conditions and Huntington's disease. Two are missing for epilepsy. The number of people impacted by the failure of the HSE is enormous and the quality of their lives is massively impacted.

Ms Magdalen Rogers

Absolutely. As well as that, we are conscious that we led a very public awareness initiative around those nurses. We had expectations and commitments from patient advocates all around the country that knew and understood those nurses were coming and they are still waiting. I can say, and my colleagues would say as well, it is a very difficult conversation to have with those people as to why those nurses are not in place. To give an example, regarding the nurse for Huntington's disease in Galway, there was a huge expectation. So many services for these conditions are based in Dublin and there was huge excitement that there was going to be a nurse in Galway for Huntington's disease. Unfortunately, we are not seeing that yet. It is critical that those nurses are protected and recruited as soon as possible.

Deputy Róisín Shortall

On the neurological teams, it is very disappointing. We were given a commitment that recruitment would take place in early 2024. Now, late 2024 is being said. Is that actually going to happen? Does Ms Rogers know what stage that recruitment is at?

Ms Magdalen Rogers

This is just our understanding. We can clarify and urge the committee to seek clarity on this directly from the HSE. Our understanding is that recruitment has not commenced for those teams because the primary notifications have not been sent to enable those teams to move forward. That is frustrating in view of that commitment and special interest by the Minister of State, Deputy Rabbitte, who in good faith got the funding for those community neurorehabilitation teams. There is a lot of frustration across the board that those teams are not up and running at this stage.

Deputy Róisín Shortall

It is mid-May 2024. If recruitment has not started - there is a lot riding on this - people need to answer for their failure to deliver on the promises that were given.

Ms Magdalen Rogers

We had a long dialogue on the neurorehabilitation strategy. Deputy Shortall has been extremely supportive. She has a long memory for some of the issues we highlighted. We came to the committee at a point four or five years ago when the neurorehabilitation strategy group was not meeting and there was a lack of energy and drive. We are happy to say that has transformed. There is commitment in that neurorehabilitation strategy group, which is led by the two chairs of that group. There are good relationships and commitment but there is a lot of frustration that the administrative issue has not been addressed.

Deputy Róisín Shortall

That is very understandable. Earlier, Ms Rogers spoke about one of the two teams in existence, in which there should be 12 members across different disciplines but there are only five.

Ms Magdalen Rogers

In CHO 1, there are only three members. In CHO 3, there are only seven when there should be 12. Those teams cover huge catchment areas.

Deputy Róisín Shortall

Should there be 12 members in each of the teams? It is 12 members across nine CHOs.

Ms Magdalen Rogers

Exactly.

Deputy Róisín Shortall

There should be 108 multidisciplinary therapists in those teams. How many members of those teams are there at the moment? There are two teams in existence. It is hugely understaffed.

Ms Magdalen Rogers

There are ten whole-time equivalents across both of those teams. A submission was made during the Estimates process regarding CHO 3 last year, in 2023, for that team to be uplifted. We did not see that in the service plan this year, unfortunately. I hope we will see it in the Estimates this year. It is an important message from this committee that we want to see all of those teams uplifted and implemented in the 2025 budget.

Deputy Róisín Shortall

To go back to Ms Rogers's point about the implementation strategy and the lack of energy, the implementation framework was established in February 2019. That is five years ago. How does that operate at the moment? Who is responsible for driving it?

Ms Magdalen Rogers

The neurorehabilitation strategy comes under disability services in the HSE. It has two joint chairs. They are responsible for the planning of the service. Administratively, it is up to the HSE to implement the teams.

Deputy Róisín Shortall

Who are the two joint chairs?

Ms Magdalen Rogers

They are the clinical lead for rehabilitation medicine and the head of disability.

Deputy Róisín Shortall

Is the NAI involved in that?

Ms Magdalen Rogers

Yes, the NAI sits on that group.

Deputy Róisín Shortall

How often does that body meet?

Ms Magdalen Rogers

The group now meets at least every eight weeks. As I said, there is very positive energy, commitment and drive to catch up on the strategy. It can only do that if it has funding and the administrative support and framework within the HSE to progress those teams.

Deputy Róisín Shortall

Is the head of disability in the Department or the HSE?

Ms Magdalen Rogers

In the HSE.

Deputy Róisín Shortall

I thank the witnesses for all they do.

Deputy Neasa Hourigan

To stay on the issue of the group's meetings, have there been discussions around the impact of the recruitment embargo?

Ms Magdalen Rogers

I think so, yes. In every platform we are involved in, the recruitment freeze is a hot topic.

Technically, as one of the Deputies said earlier, those teams should be exempt. They are disability services and should be exempt from the recruitment freeze. It is frustrating as to why there is a delay in getting those teams up and running.

Deputy Neasa Hourigan

Ms Rogers is absolutely correct. For clarity, there is an acceptance at those meetings that the recruitment embargo should not apply and yet it is repeatedly coming up in those meetings for discussion around the impact it might be having on the service.

Ms Magdalen Rogers

The recruitment embargo directly impacts the specialist nurses, who fall under neurology services. For neurological rehabilitation, it does not seem to be a recruitment freeze issue, but rather a delay. For some reason, there is an administrative delay in getting the primary notifications to the CHOs for those teams to be put in place.

Deputy Neasa Hourigan

Let us stay on the issue of delay. As Ms Rogers has mentioned a few times, we were expecting to see some of those teams in place in early 2024 but now it will be late 2024, hopefully. Ms Rogers can tell there is a lot of frustration in the room. We had all thought we were moving forward and it seems now that we have delayed. It is worth contextualising that the teams that are already existing are only at 30% and 60% of staffing. How long have those teams been in place? Has it been more than a decade?

Ms Magdalen Rogers

Exactly. They were in place well before the 2019 framework.

Deputy Neasa Hourigan

Were there years in which both of those teams had higher levels of staffing?

Ms Magdalen Rogers

I will need to check that. From what I recall, the team in CHO 1 has been pretty much static at that level of staffing. As for the CHO 3 team, I will need to check that. As I understand it, that uplift to 12 is critically needed within those teams because of the large catchment area they serve.

Deputy Neasa Hourigan

To stay on that catchment area issue, while I am not looking for an exact number, in broad terms, what population are each of those teams servicing?

Ms Magdalen Rogers

I do not have exact numbers but it is the population of a CHO. We are looking at-----

Deputy Neasa Hourigan

300,000 to 500,000 people.

Ms Magdalen Rogers

Yes.

Deputy Neasa Hourigan

Okay. The reason I asked is because I am aware that CHO 4, CHO 6 and CHO 7 are the next branch or rung. Given what we know about staffing and putting those teams in place more than a decade ago - at the last session we talked about how this is not about capital investment or accommodation necessarily, but rather hours and staffing - how long does Ms Rogers expect the kind of transition period for getting the next four up and running to take? I ask Ms Rogers to outline a timeline.

Ms Magdalen Rogers

If the recruitment can happen, there is no reason it cannot proceed quickly. When we presented to this committee last year, we were joined by Dr. Susan Coote from MS Ireland. She made the point that there is a lot of interest. We have not had this recruitment of neurological specialists. We have been in the wilderness for so many years. There is a lot of interest in specialist neurological posts among allied health professionals. Therefore, we do not believe there would be difficulty in recruiting to those teams quite quickly if we could just get over that administrative hurdle and start recruitment for the teams.

Deputy Neasa Hourigan

Will it take a quarter, or maybe two quarters, to do it? Will it take three months or six months? I am thinking in terms of the practicalities of letting the CHOs know that it is moving forward and the funding is in place, advertising and then people taking up those roles. Are we talking six months?

Ms Magdalen Rogers

I am reluctant to give a timeframe given that I do not have that level of expertise.

Ms Richelle Flanagan

I have experience in this regard with the Parkinson's disease nurses. There has been some difficulty recruiting because it is a specialist area but there is now a masters course for nurses in one of the colleges, which is good news. I cannot remember if the course is in Trinity College Dublin or UCC. That will definitely help in terms of upskilling nurses to be able to take on these posts. The timeline would be between six and nine months, from my experience of the Parkinson's Association of Ireland trying to get a Parkinson's disease nurse.

Deputy Neasa Hourigan

Six to nine months, okay. If we are starting in late 2024, we are talking about mid-2025. While I do not like to be too parochial about these matters at committees, I will ask for a selfish reason about CHO 9, which is an area I represent. We are not even talking about CHO 9. When we talk about the catchment areas of these CHOs, we are often talking about populations between 300,000 to 500,000, but the population of CHO 9, which covers Dublin north, north-central and north-west, is way over that. It has nearly double the population of some CHOs. We are talking about 600,000 people, perhaps. We are last on the rung. Certainly, this CHO area experiences high levels of deprivation in some areas and all the clinical complexity that comes with that. Can the witnesses speak to this? To me, an enormous population - well in excess of half a million people - are not going to be served and will not have those teams in place possibly even by 2026. I ask the witnesses to speak to that. It seems fairly galling.

Ms Magdalen Rogers

Before I bring Ms Flanagan in, I wish to point out briefly that I remember having this discussion with Deputy Hourigan in May last year. I wish to point out that the national trauma centre in the Mater Hospital, Beaumont Hospital and the national surgical centre are in that CHO 9 area. We do not have a community neurological rehabilitation team to back up those acute services.

Deputy Neasa Hourigan

Yes. We have a huge concentration of acute services and yet this area, which has a high population and a lot of clinical complexity and clinical needs, seems to be very much last on the list. It is the reason I am asking about timelines and how possible it is to staff. If all the funding was right and the wind was in our favour, would it be possible to have a provision for that in the next budget if we see sufficient funding for it?

Ms Magdalen Rogers

We are certainly calling for funding for the remaining teams in this year's budget. CHO 9 is a particular case that needs to be funded. We hear so much about bed blockages and longer hospital stays. Certainly, we have that concentration of acute services and no follow through. I will bring Ms Flanagan in as she has specific figures.

Ms Richelle Flanagan

I know Parkinson's disease best. The average length of stay in CHO 9 is 25 days. It is second after CHOs 6 and 7, which are the two most deprived areas. Speaking to my data experience, I was talking to someone in St. James' Hospital with regard to a malnutrition survey that was done. It showed that malnutrition among those aged 70 and over has risen from 31% to 39% and the average length of stay is actually 46 days. That all can be managed in the community to stop those older people ending up in hospital. That is in general, not just neurology. There will be an even worse impact with people who have neurological conditions. Imagine how people feel at the end of having the flu for two weeks after being in bed for that time. They find it hard to walk and think and their world becomes smaller and they feel anxious to get back out in the world. Imagine putting that onto a 70-year-old who has problems walking and is not given his or her medication on time; the bed stay gets worse and that person will go out of the hospital worse than he or she went in because there is no access to neurological rehabilitation teams in the hospital. They are then discharged back into services that are not there for them. It is just this complete circle.

Deputy Neasa Hourigan

I should mention that CHO 5 and CHO 8 are also on that last rung. Are the witnesses hearing from the acute hospitals and settings that having no services to refer out to is an exasperating issue for them, particularly in CHO 9 where there is a concentration of acute settings?

Ms Richelle Flanagan

Beaumont Hospital did a pilot clinic showing that it could really make a difference in the area of Parkinson's disease and could save €850,000 to the health service by actually having a neurological rehabilitation team that has an early discharge capability and helps patients to improve their functionality to do better in the community when they go out. It has not been given the funding to actually continue with the pilot clinic.

Deputy Neasa Hourigan

Do we know how much funding it was requesting?

Ms Richelle Flanagan

I do not have those figures.

Deputy Neasa Hourigan

I presume that an elongation of stay has an impact on the acute services being provided.

Ms Richelle Flanagan

Yes, absolutely. A lot of the people who end up in hospital with neurological conditions have many things, such as bone health and fracture risk, which can be dealt with by a community neurological rehabilitation team. Obviously, if someone ends up in hospital with a fracture, that will take much longer. It is much better to deal with these things out of the hospital. Things like orthostatic hypotension blood pressure problems can be dealt with in the community.

Things like dysphasia, swallow issues and constipation can be dealt with in the community. These are low-hanging fruit that should be dealt with in the community but we do not have the service in the community so they end up blocking the acute services and putting huge pressure on the neurologists. They are totally overrun and burned out because of the demands that are put on them, and then they do not have nurses to unlock that.

Ms Magdalen Rogers

The average bed saving from a community neurorehabilitation team is three days, but that is just across the average. There are higher bed savings.

Deputy Neasa Hourigan

Even three days, when it ticks up, is a huge saving.

Ms Magdalen Rogers

Exactly.

Deputy Gino Kenny

I want to drill down into some of the figures in the statement. It says that 50,000 people are diagnosed with a neurological condition each year. Will the witnesses give a breakdown of the conditions in that figure, if that is possible?

Ms Magdalen Rogers

The most common neurological condition is migraine. This affects more than 300,000 people throughout Ireland. In levels of commonality there are conditions like multiple sclerosis and Parkinson's. My colleagues can speak about numbers relating to those. We have the range of strokes, acquired brain injury, dementia and, very importantly, the rare neurological conditions such as Huntington's and motor neurone disease that would have smaller numbers but are extremely disabling conditions.

Deputy Gino Kenny

How many people are diagnosed with MND each year?

Ms Magdalen Rogers

I would need to check that.

Ms Richelle Flanagan

The number affected is 450. For Huntington's it is 700. For PSPMSA and CBS, it is 900. Lewy body dementia is between 7,000 and 10,000 and Parkinson's is between 12,000 and 18,000. That is another issue-----

Deputy Gino Kenny

Is that per year?

Ms Richelle Flanagan

No, those are the total figures for sufferers.

Deputy Gino Kenny

Okay.

Ms Richelle Flanagan

One of the problems is we do not have a registry, so it is hard to give specific numbers. That is part of the problem in terms of the-----

Deputy Gino Kenny

This seems to be a common thread in the health service, that there is no collection of data, which is bizarre.

Ms Richelle Flanagan

Yes, and that is why cancer patients get very good multidisciplinary care because there is a registry. The cancer clinical trials programme works really well. We need the same for neurological conditions. The recently created Dementia Trials Ireland is a step in the right direction. Collecting data would be a big help.

An Cathaoirleach

We are talking about 50,000 new diagnoses every year of neurological conditions.

Deputy Gino Kenny

Okay, and 860,000 people are living with some form of neurological condition. On the issue of early onset Parkinson's, and I raised this at the presentation in the audiovisual room, we have a better understanding of this condition in recent years, but most people would still have that connotation that Parkinson's is an older person's condition, whereas that is not true. It is generally a broad spectrum of age. How prevalent is early onset Parkinson's in the population?

Ms Richelle Flanagan

I live with it myself so I agree with the Deputy. The concept is that it is an older, white man's disease, but actually 40% of people who live with Parkinson's are women and up to 30% who are diagnosed are under the age of 60. That is a large proportion. In fact, it is actually more than the total number of people with MS worldwide, but because it is not known and there is a huge stigma associated with Parkinson's, a lot of young onset people are afraid to talk about it because they might lose their job. We know that people who are diagnosed with young onset - under the age of 40 - tend to lose 20 years of life employment. If you are diagnosed with early onset, which is under the age of 60, you lose ten years of employment. There is a huge impact of informal costs for the person living with the condition. It is the same with other neurological conditions. There is a huge cost in terms of losing your job but also we must not forget the carers. There is a huge impact on carers of people with neurological conditions because, as they progress and get more advanced, the care need is huge. In fact, in the UK recently, research showed that, with advanced Parkinson's disease, carers spend, on average, eight hours a day looking after their loved ones. It is a huge cost to society, the informal as well as the direct costs of healthcare.

Deputy Gino Kenny

Is the evolution of Parkinson's different in each individual?

Ms Richelle Flanagan

Yes. Not unlike MS having different types of presentation, Parkinson's has different progressions and symptoms. There are more than 100 different motor and non-motor symptoms. There is a big area in terms of mental health symptoms. They are a symptom of Parkinson's as well as people being depressed because they have Parkinson's. These have huge impacts on people. People think of the shuffle and the tremor but a huge part are things like constipation, blood pressure problems and swallow problems. There are a huge range of issues that are very debilitating for people.

Deputy Gino Kenny

Is there a standard medical intervention in terms of drugs?

Ms Richelle Flanagan

Unfortunately, the drug used for Parkinson's, which is called levodopa, is 60 years old and has not really advanced hugely, and partly that is to do with a lack of funding for research. However, we do have what we call device-aided assisted therapy. One is deep brain stimulation, which is open brain surgery and which can be very successful. I am delighted to say we can now access this treatment in Ireland. However, it is limited by the fact we only have one neurosurgeon who can do it, so a lot of people still travel to the UK and Northern Ireland to get that surgery done. There is a new therapy called Produodopa, which a subcutaneous medication which has just been signed off by the HSE. That has promise but will probably be limited initially. There are some signs of some therapies but-----

Deputy Gino Kenny

Are surgical interventions rare?

Ms Richelle Flanagan

They are rare enough. I think only 12 people a year get DBS, so it is pretty limited.

Deputy Gino Kenny

What are the outcomes for those people?

Ms Richelle Flanagan

The outcomes can be life changing. A person who cannot walk or talk gets a small implant in their brain and it is like Power Rangers or something. You literally can turn yourself on or off. It is absolutely life changing for some people who get it, but not everybody has access to it. Unfortunately, there is no cure for Parkinson's and there are no drugs to slow progression. Coming back to the point of the multidisciplinary teams, it is very important to get access. We know that exercise therapy and dietary therapy have the potential to slow the progression of Parkinson's. They certainly help to improve the symptoms. In Holland, which is at the forefront of the multidisciplinary approach to care for people with Parkinson's, speech therapists have reduced inpatients presenting with dysphasia and chest infections, which are the biggest killer. Pneumonia is the biggest killer of people with Parkinson's.

Deputy Gino Kenny

Why is that?

Ms Richelle Flanagan

With Parkinson's, the lack of dopamine affects your muscles being able to work properly and that affects your swallow. People cannot swallow properly and if they get a chest infection, they cannot cough it up because their muscles are not working properly. This is where it is really important to get intervention by a speech therapist to keep those muscles strong for as long as possible to prevent people getting an infection, it going down into their lungs and them ending up in hospital. We know from the services in Holland that physiotherapist intervention has been shown to avoid people going to hospital with fractures. It keeps them safe in terms of falls, etc. There is a lot of Europe-wide research to show the benefit of multidisciplinary care for people with Parkinson's. It would be the same with MS, PSPMSA and Huntington's. All neurological conditions need that input.

Deputy Gino Kenny

Obviously these services pretty arbitrary in terms of their accessibility in the State?

Ms Richelle Flanagan

Yes, absolutely. As we have outlined, it is very hit and miss and it is particularly bad outside of Dublin. I do call backs for the Parkinson's Association and I come off quite angry and depressed when I hear, time after time, about the lack of care for many people.

We also have to think of the likes of diabetes and cancer. Those diagnosed with diabetes are given access to a diabetes nurse and diabetes programmes. The same is true for heart disease and cardiac rehab. This does not happen for people with neurological conditions.

Ms Magdalen Rogers

We have been talking so much today about those specialist nurses stuck in the recruitment freeze. Just one in five people with Parkinson's gets any access to a specialist nurse in Ireland at the moment.

Deputy Gino Kenny

One in five?

Ms Magdalen Rogers

One in five has access, and that means any access. That could be just one appointment with a specialist nurse.

Deputy Gino Kenny

That is terrible.

Ms Magdalen Rogers

A number of those 13 nurses who are stuck in the recruitment freeze, particularly as Ms Flanagan said, those outside Dublin, were dedicated Parkinson's disease nurses in recognition of that shortfall. As I say, they are held up in that recruitment freeze at the moment.

Deputy Gino Kenny

At the moment, of the recommended 100 specialist nurses, only eight have now been employed, which is way off the target.

Ms Magdalen Rogers

Exactly.

Deputy Gino Kenny

I think I have run out of time. I will probably have more questions later on.

Deputy Bernard J. Durkan

I welcome our guests and thank them for their submissions. Much is made of the embargo as a reason for the cessation or the lack of services at the moment but there was quite a considerable extension of spending before the embargo came in, to the extent that a number of Ministers called out the fact that there was a danger of runaway spending that could become very threatening to the entire services at a later stage. What was the priority rating of the requirements that Ms Rogers mentioned in terms of their importance to be dealt with as a matter of urgency in the course of the pre-budgetary discussions and the post-budgetary situation? How important were the requirements and the impact they would have on the general health service by virtue of arresting or attending to the symptoms of the various patients?

Ms Magdalen Rogers

We would not have been privy to those conversations-----

Deputy Bernard J. Durkan

Who was privy to them?

Ms Magdalen Rogers

The clinical programme may have an insight into the relative weighting of different areas. I do not wish to comment beyond our scope but the recruitment freeze has been described as a blunt instrument and certainly we feel it hit just at the wrong time for neurological conditions. We had this incredible commitment from the Minister of State, Deputy Rabbitte-----

Deputy Bernard J. Durkan

That is correct but, given the importance of the lack of services already outlined, should that not be at the top of the list for all people involved in the negotiations regarding the availability of funding and specialist places and so on, and in particular the areas where CHOs 1 to 7 have been funded but no team as yet has been funded in CHOs 5, 8 and 9? Surely those things should have been foremost in the minds of the people seeking the services at the time. It should not come after everybody else has made their requests for expenditure. It should be in earlier. The priority rating comes in again. That was raised by Deputy Shortall as well. It is hugely important because if we cannot back that, we cannot impact sufficiently on the points Ms Rogers has raised, which are all good points.

Ms Magdalen Rogers

We are certainly heartened by the support of the committee this morning and that recognition of the importance of those 13 specialist nurses and the community teams that have been funded. We are looking at an area where the funds have actually been committed but unfortunately we are not seeing the progress. Anything the committee can do in that regard, we would certainly appreciate.

Deputy Bernard J. Durkan

The only problem is that we do not attend the meetings where these goodies, these necessities, are handed out. Who is the person we need to talk to? I know the head of the HSE is one of the people we need to talk to and we will talk to him, but it is very easy to say "Look, it is the embargo. We cannot do anything." It is not the embargo. It is the order of importance along with all the other demands that have to be faced at a given time. What I am trying to do is to get at who we need to talk to, where that person is now and what action was taken. The Neurological Alliance of Ireland obviously made its case well in advance and then action took place. However, the position now emerging is that there has been a lot of unanticipated spending on other areas. How did they get by?

Ms Magdalen Rogers

As Deputy Hourigan pointed out, the community neurorehabilitation teams do not even come under the recruitment freeze so we are at a loss as to why they have not been progressed. I certainly agree with Deputy Durkan that there is an issue there of the priority that is given to neurological conditions. We saw very welcome commitment being made by Ministers, but we need to see the follow-through at this stage.

Deputy Bernard J. Durkan

One Minister is actively pursuing the issues to which Ms Rogers has referred, to her frustration, I would say, at this stage. Again, it comes down to the same issue. It is not the embargo. It is something else. There is something else that needs to be addressed and that is in the overall situation whereby everyone lines up to make their case. That is the natural thing and it has to be done. We accept all that. However, because of the fundamental nature of the services to which Ms Rogers refers, there is a need to have something really sufficient brought forward for two reasons. The first is to give hope to those who are waiting for such services, and the second, from the point of view of the alliance and the people who are suffering, to let them know that someone is listening to their case and to tell them this is how we intend to deal with it. Then we can go back again to all the other services. I have no doubt they are all vital services. I have also no doubt that there are some services which got a response in line with their expectations and others which did not, but it is the patients who suffer in the long run, and in the short term sometimes as well. If Ms Rogers were to tell us now the most important thing from her point of view, we will highlight this and pursue it. I realise not everybody is in the committee room but I am sure people are looking in and listening. We need to know what we have to do specifically at this stage, in recognising the point that Ms Rogers has made and the fact that some areas have reasonably good service while others have poor service or none at all. We need to address that as a matter of urgency. Anything more Ms. Rogers can say on that is important to us.

Ms Magdalen Rogers

Absolutely. I will come in there briefly. We have reiterated a number of asks this morning relating to freeing up the funds that have been invested to get those services up and running. I refer to the neurology nurses and the community neurorehabilitation teams. In this year's budget, we would prioritise the remaining community neurorehabilitation teams, those neurologists in the five regional hospitals we spoke about, including Letterkenny, Mayo, Portlaoise and Bantry, again in view of that geographical inequity for people trying to access services. Senator Kyne spoke about Mayo University Hospital earlier. In the longer term, it is about having a timely action plan on the inpatient neurorehabilitation beds. That is critical at this stage.

Deputy Bernard J. Durkan

Does Ms Rogers think that at this stage, coming late to the table, as it were, that we are going to be successful given that we were not successful in the past? What do we need to do to unlock the cupboard door before making this a vital issue, which it is?

Ms Magdalen Rogers

We were over the first hurdle in that after a long time of underinvestment in neurological care, we saw significant investment in the community neurorehabilitation teams in the past two successive budgets in acknowledgement of the Minister of State with responsibility for disability there. We saw that funding for 21 specialist nurses at one go and we saw the funding for the four dedicated specialist community neurorehabilitation teams. That was our first hurdle and it was a very significant investment. It is now about getting follow-through on that.

It was a really important milestone that we got that investment. One of the critical issues for us is having that translated into direct services on the ground.

Deputy Bernard J. Durkan

I again thank our guests for their very logical presentation which sets out the goals and requirements. Nothing is worse than setting out the goals and requirements and then nothing happening afterwards. Given the sensitivity and importance of this area, I do not accept the notion that other areas went forward and received what they sought at the time but other areas received less and some none at all. We have referred to areas with massive populations which are growing all the time and that is obviously not being taken into account. From the past, I know that people sometimes take decisions to suit the occasion rather than the need. This is one particular need that has to be addressed in the very near future. We will be taking that up - I know the Chairman will also - with the responsible authorities when they next appear on the scene.

An Cathaoirleach

I call Senator Black. When she is finished, we will take a comfort break for five minutes.

Senator Frances Black

I thank the witnesses most sincerely for appearing before the committee. I thank them for their time and dedication in their work, including the preparation they put in for this session. Their opening statement has shone a light on the shocking systemic challenges facing the sector.

I hope that Ms Flanagan might be able to provide some insight into her personal experience of those living with neurological conditions. Perhaps she could speak specifically about the impact of long waiting lists and service gaps on individuals with neurological conditions and their family members. As a family member of somebody who has a neurological issue, I know the kind of anxiety and stress that family members often feel.

Ms Richelle Flanagan

I can give the perspective in respect of Parkinson's disease because that is what I know best. The lack of access to care probably impacts on all people with neurological conditions. Parkinson's disease has many symptoms. People may be on medication five times a day. One woman in Letterkenny has not seen a neurologist since she was diagnosed seven years ago. She has declined in the past year. She has been seen by a geriatrician. To a certain extent, geriatricians can manage people with Parkinson's disease but ultimately she needs to be seen by the expert in her condition, which is the neurologist. There are issues with her medication. She is starting to have falls and has issues with her blood pressure. She needs to have a tilt test. There is a whole gamut of things that she needs to have but she will not get them anytime soon. She will possibly have a fall and end up in hospital. There will likely not be a neuro rehab team there. She will not be given her medications on time and will end up being frozen in the bed. She will not be able to swallow properly which will lead to other issues. It is a vicious circle.

Many people know of motor neurone disease. Progressive supranuclear palsy, PSP, is very similar to ALS but twice as many people in Ireland suffer from it. They do not get access to specialist care either. They may fall up to 20 times a day but do not get access to therapists to help manage that or to neurologists to adjust their medication.

Regarding carers, a nurse in the Parkinson's association told me of the sad case of a lady caring for her husband who has Lewy body dementia, which is another neurological condition. She felt like committing suicide because there was so much pressure on her. Carers have told me there is no access to palliative services when it reaches that advanced stage. There is nobody to guide them in how to manage that. They are trying to do it in their homes. That is a big pressure on the carers. As I have said, 90% do not have access to dieticians. They do not have access to mental health services, occupational therapy or speech and language therapy, all of which could really help not only the person with the condition but also the carers who are struggling to look after their loved ones.

Senator Frances Black

I ask Ms Flanagan to expand on the importance of diet and how people might be helped with that.

Ms Richelle Flanagan

People with Parkinson's disease have a lack of levodopa which affects their muscle movement. It also means there are bowels do not move as well and therefore constipation is a big issue. In the pilot study at Beaumont Hospital, 70% of the patients with Parkinson's disease who were admitted had constipation. For patients with constipation, their medication does not get absorbed well, which means they do not turn on. Basically, people are frozen. In the movie "Awakenings", people wake up. That is basically what levodopa does; it allows us to switch on our muscles. Some people are unable to get out of the chair. They cannot swallow or talk very well. It is very important that this medication gets from their intestines to their brain. Naturally, for somebody with constipation that does not happen. It is very simple to get on top of that constipation, meaning that suddenly people turn on more and they can function better. In those cases, it is important that people see a dietitian to get on top of that constipation.

Orthostatic hypotension is where the blood pressure drops. Again, it relates to Parkinson's disease symptoms. It requires very simple interventions from a diet point of view in terms of fluid and salt with exercise alongside that. Postprandial, after they eat a meal, they get a blood pressure drop which creates a big risk of falling. Education on that helps people avoid that happening. People with a Mediterranean-style diet have better control of their symptoms. It simply needs a healthy diet. Many people do not have access to a dietitian to give them personalised advice on what types of foods they should be taking in.

Malnutrition is a big issue for people with Parkinson's disease and other neurological conditions. A high level of patients admitted to St. James's Hospital are suffering from malnutrition. People who lose weight in the first year after their diagnosis of Parkinson's disease have worse outcomes and die earlier. We need to ensure that they do not lose weight and maintain their weight. That is also important for their muscle strength, which stops them from falling and getting fractures. With dysphasia, people with Parkinson's disease and other neurological conditions cannot swallow well. As a result, they are put on a modified diet which needs to be analysed by a dietitian to make sure it contains enough calories and nutrition so that they do not lose weight on these modified diets. Dieticians can make many interventions for people with Parkinson's disease and other neurological conditions. From a physio point of view if people with neurological conditions have lost weight, it is very hard to do those exercises right. It is important to get the baseline right so that people have enough energy to do the therapies they have been prescribed.

Senator Frances Black

Ms Flanagan has a wealth of knowledge on this area and could probably be a consultant because of her own experience.

Ms Richelle Flanagan

In my own experience, I looked for a multidisciplinary team and information about access to dieticians who had knowledge in this area. Those services were severely lacking when I was diagnosed seven years ago so I travelled to a non-profit multidisciplinary centre in Italy, which made a huge difference in terms of me being able to take control of my condition. When I counsel other patients, whether they have cancer or diabetes, about getting access to services to help them self-manage their condition I find that most people do not have the luxury of the knowledge that I had, as a clinician, to go and find that, nor the funds to do so. Many people do not have that.

Senator Frances Black

It is so important.

Ms Richelle Flanagan

Yes.

Senator Frances Black

That is what is key here.

I wish to ask one more question before my time is up. I was very happy to hear Ms Rogers mention the Sláintecare action plan in the NAI's opening statement. I understand that the integrated models of care and community-based supports form the backdrop to Sláintecare reforms. Ms Rogers has touched on the issue already and I ask her to please expand on how mental health is incorporated into these new models of care, specifically around neurological issues.

Ms Magdalen Rogers

The role of a neuropsychologist on community neurorehabilitation teams is critical. They would be psychologists with a specific expertise in understanding the brain. They have an expertise in understanding the synthesis between the neurological condition and, as Ms Flanagan has said, what is due to the condition and what is due to a very normal reaction to having a long-term neurological condition. Neuropsychologists understand the interplay. It is a very rare expertise in Ireland and very hard to access at the moment. Again, we need community neurorehabilitation teams to have that specialist expertise in mental health and cognitive support. Yesterday, I spoke to the Senator's researcher about this aspect and she was fantastic. She understood that those on the teams need to understand the conditions that they are dealing with. It is not just a generic counsellor or psychologist.

Senator Frances Black

Yes.

Ms Richelle Flanagan

In terms of Parkinson's disease, there is no neuropsychologist or neuropsychiatrist for a condition that has a number of issues in terms of cognition and things like psychosis. It is very distressing for patients and their carers dealing with a psychotic patient or episode in their home.

Senator Frances Black

I thank the witnesses.

An Cathaoirleach

Yes, thanks very much. I suggest that we take a short break.

Sitting suspended at 11.02 a.m. and resumed at 11.12 a.m.

An Cathaoirleach

I invite Senator Conway to make his contribution.

Senator Martin Conway

The witnesses are very welcome. Obviously, they are no strangers to Leinster House because they give a briefing in the audiovisual room every year. We are coming from a low base but we have seen some incremental improvements, albeit they may be limited and not on target. When was the committee which is co-chaired by the clinical lead and the head of disability services established?

Ms Magdalen Rogers

That was established as far back as 2018. That committee published the implementation framework in February 2019.

Senator Martin Conway

How many members are on the committee?

Ms Magdalen Rogers

We would have upwards of 10 members.

Senator Martin Conway

What is the breakdown between representatives from bodies such as the Neurological Alliance of Ireland and the HSE? What is the make-up of the committee?

Ms Magdalen Rogers

There is a representative from the Neurological Alliance of Ireland and one from the National Clinical Programme for Rehabilitation Medicine. There are therapy leads across the different therapies.

Senator Martin Conway

Are those people nominated by the HSE?

Ms Magdalen Rogers

They would be nominated by the different therapy representative organisations.

Senator Martin Conway

Ms Rogers has said there is a vibrancy about that group and a sense of purpose and a positivity. However, it has far from met its targets. Deputies Shortall and Hourigan asked about this earlier. We are told that the embargo is not a problem, but the embargo comes up for discussion regularly. Is it or is it not an issue?

Ms Magdalen Rogers

The recruitment does not impact the community neurorehabilitation teams. What comes up for regular discussion is the issue of the administrative delay in the primary notifications for the community neurorehabilitation teams. That is a source of frustration for that group.

Senator Martin Conway

Has that group had any engagement with the Department of Health or is it specifically a HSE outfit? Have there been meetings with the Secretary General or anyone else in the Department of Health to try to resolve the delays?

Ms Magdalen Rogers

I do not have that information. That has not been reported back to us as members of the group. I am sure a communication to that group would provide that information.

Senator Martin Conway

Are the minutes of that group's meetings available publicly? Can they be obtained through freedom of information request?

Ms Magdalen Rogers

I am sure that information could be obtained even by writing to the chairs of that committee for a report on progress. That committee, as a planning group, is making every effort going forward. We have had a great deal of commitment in respect of and support for that group. It seems to be a wider administrative issue in getting those teams up and running.

Senator Martin Conway

I have no doubt about the bona fides and the commitment of the people on that committee. Clearly, in a positive way, they all have a vested interest to get it over the line. It would be interesting to see where the blockages are. Administrative blockages is a very broad term. What exactly are the administrative blockages? I had to leave the room earlier but I was following proceedings on my phone. As Deputy Durkan said earlier, we need to drill down into this and find out what the administrative blockages are. As opposed to a macro-examination and discussion, we need to do it at a micro level. At the next meeting, Ms Rogers might get us specifics as to where the administrative blockages are so that this committee can challenge the Minister to deal with those blockages.

As our new Taoiseach said a few times on these things, we need common sense. The common sense is that these positions need to be filled. The Minister of State, Deputy Rabbitte, committed to doing so in 2022. The Oireachtas, this committee and the Neurological Alliance of Ireland were given a timeline that has not been met. I do not blame the Minister of State, Deputy Rabbitte, for that; I blame the system. However, we need to find out what the problem is. Do we not have people with expertise? Are people not applying for the positions? This committee wants to assist and can assist. We have been well briefed on the issues and understand them. We speak to the advocates. What we need from the witnesses are micro specifics on the questions we should be asking. Much of the time we are given a broad-brush outline of the issue. However, we are not equipped with the information to ask the specific questions to elicit an answer because it is so specific. We need either a "Yes" or a "No" or as near to a "Yes" or a "No" as we can get. That would be my suggestion. Perhaps Ms Rogers could come back to the clerk with those specifics so we can assist the Neurological Alliance of Ireland.

Ms Rogers spoke about the 12-week programme for community neurorehabilitation teams. Clearly, follow-up and aftercare are extremely important. When somebody is treated formally, sometimes the informal aftercare can be an issue. Ms Cotter might outline her experience with MS Ireland.

Ms Alison Cotter

I thank the Senator for the question and I thank the committee for inviting us here to discuss this important issue. I acknowledge the work of the Minister of State, Deputy Rabbitte, on this matter. We have had her support and commitment particularly for our own MS Ireland vital services. To use her own works in reference to the work of An Saol, we need to see such vital services become more accessible nationwide. I also acknowledge the work and commitment of the national neurorehabilitation strategy implementation group, which has great vibrancy and energy.

I am speaking here today with two hats on. I am the vice chair of NAI, but I am also representing a member organisation. We are very conscious of the issues facing section 39 providers of health and disability services. It is part of a much wider discussion outside the scope of what we are discussing today. However, I take the opportunity to highlight that it has direct bearing on the implementation of the neurorehabilitation strategy. There is major reliance on the voluntary sector to provide neurorehabilitation services in the community. The sustainability of these services is under threat due to critical underfunding. This is beyond the scope of today. It is a wider piece and with the understanding of the committee I will not go into it any further. I wanted to acknowledge the work of voluntary sector providers.

We want to address the role these voluntary sector providers play in providing specialist community neurorehabilitation services to respond to ongoing needs and maintaining goals beyond those 12 weeks. The community neurorehabilitation teams are one step on the neurorehabilitation journey; they are not the destination.

The key message from our perspective, and that of the voluntary sector, is about keeping people well at home. These teams are limited to that 12-week period, but people still have scope for improvement beyond that. As I say, it is not the end of the situation. It is also worth noting that some people living with neurological conditions may not qualify to access a CNRT. They may only have a need for one discipline such as physiotherapy, and you need more than one to qualify to access these CNRTs. There is also a need to transition from the medically unwell phase to integrating into society and keeping people at home. We are investing in this valuable rehabilitation. It is not expected to be a quick fix, nor should it be. What we voluntary sector providers do is enable people to maintain the gains beyond that, continue that improvement and enhance the effectiveness of that investment. Providing long-term specialist neurorehabilitation services in the community is so important in delivering the national neurorehabilitation strategy. We need to see proper investment year on year in developing community neurorehabilitation services in line with that strategy. We are not starting from ground zero here. As the Senator says, MS Ireland provides an on-the-ground, long-term community neurorehabilitation service. This is highlighted throughout the neuro mapping project published in 2023.

Senator Martin Conway

That is a comprehensive answer. I know the organisation had a comprehensive budget submission.

Ms Alison Cotter

Yes.

Senator Martin Conway

There were ambitious targets, but in the overall context they were not ambitious. They were targets that should have been met years ago. What is the deliverable on that?

Ms Alison Cotter

This is reflected under the neurorehabilitation strategy through the headings that are called out under it. For residential rehabilitation, MS Ireland put in a submission to expand the service in our national MS respite centre. This reduces pressure on carers. It was about respite for all organisations, not just our own. It provides opportunities for peer support and relieves those pressure points. On the output of investment in such services, you are talking about keeping people well in their communities and enabling carers to continue keeping their loved ones at home. We currently have 2,952 bed nights available. An expansion of that was committed to in the budget but we have received nothing further on it.

Senator Martin Conway

This committee, through the clerk, might write to the Minister of State, Deputy Rabbitte, and establish exactly where we are with the commitment given to MS Ireland for funding its residential centre and its therapists. Ms Cotter might send the clerk a note on it so we can put in the request.

Ms Alison Cotter

Absolutely, I will. It is not just MS Ireland that is providing these crucial services. I credit other organisations.

Senator Martin Conway

Ms Cotter is here. There are 30 organisations connected with the Neurological Alliance. MS Ireland is one of the 30. We are talking about Ms Cotter's organisation because she is here.

Ms Alison Cotter

Absolutely.

Senator Martin Conway

As a result of her being here, I have made the proposal that for her specific organisation we will correspond with the Minister of State to see if we can advance it.

An Cathaoirleach

Does Ms Cotter wish to speak further?

Ms Alison Cotter

I am conscious I am here as MS Ireland but also as NAI vice chair. I would like to speak to those other services under our umbrella a little. Is that all right?

Senator Martin Conway

Have we the time?

An Cathaoirleach

I am conscious Deputy Conway-Walsh wants to come in.

Deputy Rose Conway-Walsh

I have another committee going on as well. Would Ms Cotter and Senator Conway mind if I come in?

Ms Alison Cotter

No, absolutely not.

Senator Martin Conway

That is no hassle.

Deputy Rose Conway-Walsh

I thank the witnesses for appearing again today, and I acknowledge all the work of the Neurological Alliance and for putting this up the agenda. I am not a member of this committee and I thank the Chair for letting me in today. It is a very important issue for us, and for me living in Mayo.

I want to speak of a case and ask advice on it. I have listened with interest while I have been in here and outside this morning. If you live in Mayo and many other parts of the west, you struggle to access neurology services. The struggle is monumental and the regional inequity is stark. This is an account of one young woman, a constituent of mine, trying to ease her suffering. I will read out her own words:

I am a 40-year-old mother of three young children living in rural Mayo suffering with debilitating nerve pain in my face called trigeminal neuralgia. I cannot access the care I need. I have been in and out of Sligo hospital, left on a corridor in severe pain for over 36 hours, sent home with no help or follow up. My GP has done his absolute best for me but is at the end of what he can do, and I have not had a single pain-free moment in over six weeks. I am going back to Sligo again tomorrow to try to access neurology through the emergency department again and dreading what's ahead of me. Even though I cannot afford it I have tried to get a private appointment only to be told the wait is six months. I cannot live like this for another six months. I am signed off work but am not entitled to illness benefit so my husband is now the sole earner trying to pay the rent and keep the children fed. I need to sort this pain out so I can return to work as soon as possible. I would appreciate any help in trying to access neurology services so that the pain can be controlled, and my life can no longer be on hold. My children are suffering as Mammy cannot function most days due to the pain.

That is the reality of what we are talking about here, as the witnesses know and have pointed out examples. We have been getting to part of it this morning, but in my book, somebody has to be in charge. There is just such dysfunction. Is the Minister in charge? Is the director general of the Department in charge? Who is in charge? We cannot just say that is the system. If money is being allocated by a Minister, you follow that money not only to see it gets to where it is supposed to get to but you then evaluate that along the system to make sure it delivers the outcomes the Minister has committed to. Committing money into the ether and hoping it lands in the right place and has the right results is just not acceptable in this day and age. I am asking for this woman, who is in this severe pain today, and her family will be getting further into financial stress because of what is happening. I want to bring this to the Minister this afternoon on the floor of the Dáil Chamber. What do I need him, her or whatever Minister is there to do immediately to alleviate the suffering of this woman and her family?

Ms Magdalen Rogers

That is an extremely tragic situation. It is, unfortunately, an experience where we will talk about lifting the lid. We have an advocacy initiative at the moment about regional neurology services and we are hearing those stories throughout. We just picked five hospitals in Ireland that do not have dedicated neurology services. There are more than that. Mayo happens to be one of them. We are getting those stories of people throughout Mayo. The Deputy says that someone is travelling to Sligo from Mayo. Even if they were getting the care, that is an unacceptable journey to be travelling. They are not even getting the care with that journey. The critical issue for the upcoming budget is that we have identified those five hospitals that critically need, and should have, a dedicated neurology service. All model 3 hospitals should have dedicated neurology services. It really is a postcode lottery - that term is used a lot - that Mayo does not have a neurology service. As I say, with this current advocacy campaign, we are hearing those stories of patients. I heard a story yesterday of a gentleman who has travelled to Dublin for 30 years. He has travelled to Dublin a number of times every year to see his neurologist over a 30-year period when he could be seen in his local hospital in Portlaoise, County Laois. The Deputy is describing Mayo. We hear similar stories, as Ms Flanagan has said, about people in Donegal who are not able to access neurology services. This is unacceptable in this day and age.

Deputy Rose Conway-Walsh

What can we do immediately? I hear the despair of this woman, and as Ms Rogers said, this is right across the board. This is just one constituent in Mayo. What can be done in the meantime until they get the dysfunction and administrative blockages sorted out? Who is blocking these? That is the first thing to ask the Minister tomorrow morning.

Somebody somewhere is preventing this from happening. As a public representative for County Mayo, I cannot stand over anyone saying that it is just the system. Could the person mentioned go to the North or Britain? They should not have to. People should be able to go to the North because the only way out of all of this is a national health service for the entire island. We have expertise on the island to be able to do that.

Ms Magdalen Rogers

Yes.

Deputy Rose Conway-Walsh

What can the woman in question do?

Ms Magdalen Rogers

I have waiting lists here, but I do not want to make this about numbers.

Deputy Rose Conway-Walsh

Yes.

Ms Magdalen Rogers

There are over 3,000 people on a waiting list to see a neurologist in Galway, which would be the nearest place to the woman mentioned. That is obviously why she was sent to Sligo, which has a waiting list of 782. With all due respect to our neurology colleagues, who are trying to prioritise care, even operating to the best of their ability, trying to get through those clinic waiting lists is extremely challenging.

Deputy Rose Conway-Walsh

Yes.

Ms Magdalen Rogers

It really is a matter of having local neurology services that would see that individual in a timely manner and provide the care needed.

Deputy Rose Conway-Walsh

Is Ms Rogers saying that the neurologist posts will not be created, including in Mayo, until there is an allocation made in the budget for this year? She is. On the basis of what happened when the other commitments were made in 2022 and 2023, am I going to have to go back to this woman and say that, realistically and truthfully, it is going to be 2027 or 2028 before she will be seen?

Ms Alison Cotter

The Deputy is speaking to an important issue, namely that there is a person at the centre of all of this. Fatigue is a very common symptom of MS, and travelling can result in fatigue for many days afterwards. People must realise that it is not just the travel time it takes to reach somewhere and the cost of travel. Consideration must also be given to the aftereffects and the impact of those on the person living with the condition, whether it is MS, Parkinson's disease or Huntington's disease, and on a his or her circle of support. There are people and families at the centre of this.

Ms Magdalen Rogers

I will take Mayo as an example. When we talked to patients in Mayo, we came across someone who had paid €300 for a taxi in order to travel to Galway for neurology services.

Deputy Rose Conway-Walsh

Yes, that is right. As Ms Rogers said, when there is a list of 3,000 people, one does not get the services that can be delivered. I commend the people who remain in the services and who try to deliver them in such circumstances. We must acknowledge that. I ask them to hang in there until this matter is resolved. I despair because there is no accountability, or transparency.

Ms Magdalen Rogers

When there is a situation where one in four of the referrals to Galway is from Mayo, it shows the real need. It would be common sense to have a neurology service in Mayo.

Deputy Rose Conway-Walsh

Yes. What Professor Flanagan said at our previous meeting was profound. He asked how it is that we cannot translate national strategies into action. We have strategies coming out of our ears. The woman to whom I refer who has been in non-stop pain for six weeks. I know there are people who have been in pain for six months, six years and beyond. The Government, which has been in power for 13 years, is not able to translate strategy into action.

Deputy Bernard J. Durkan

It might be no harm for the Deputy to remember that we had the IMF here for five years.

Deputy Rose Conway-Walsh

I am referring to the incompetency.

Deputy Bernard J. Durkan

The Deputy keeps churning that out. I have no wish to correct the Deputy or interrupt her, but I ask her to remember that we had five years of the IMF.

Deputy Rose Conway-Walsh

I thank our guests for the work they do. Certainly, for Mayo and the west, the organisation has my full support and that of my colleagues. In its alternative budget, Sinn Féin allocated resources for these services. From a public expenditure point of view, the allocations have been made. I could not stand over us being in government and having this situation continue in Mayo, where people are suffering so much.

Senator Martin Conway

While this is a political issue, it is very important that it should not become a party-political football.

Deputy Rose Conway-Walsh

Ministers have to follow where the money goes. They cannot just adopt a scattergun approach and say that the money has been allocated. They must follow through with action on the ground. Not only must there be immediate action in the context of appointing the clinicians and nurses that we need, there must be a continuous measurement of outcomes and assessment of whether the funding is doing the job. This is hard-earned taxpayers' money. We must assess whether it is doing the job for which it has been allocated. I am sure our guests know what I am saying. There must be continuous evaluation and we must ensure that actions are taken. Obviously, actions are not being taken. They are certainly not being taken in Mayo. We have announcement fatigue. There will be many more announcements over the coming weeks, but what do they mean to this woman who is in pain?

Ms Richelle Flanagan

On what that lady might be able to do, unfortunately, where people previously went to private neurologists when they could not get public appointments, they cannot do so any longer because private neurologists are closing their lists as well.

Deputy Rose Conway-Walsh

Yes.

Ms Richelle Flanagan

The number of people seeking appointments has increased so exponentially that private neurologists cannot take them on either. We also have neurologists who are leaving the public service because of the pressure that is on them. We know that many people with Parkinson's disease are crossing the Border to gain access to neurology care. That is not sustainable in the context of their condition.

I will give my own theory in terms of cancer, diabetes, heart disease or one condition. Obviously, there are many different types of cancer. If someone has a rare cancer, what happens if he or she is not told that he or she will not be seen for four years? There are many different types of neurological conditions. Neurology seems to fall through the gaps because there is no one person looking at this and saying it is not acceptable that patients must wait. In addition, people's health deteriorates as they are left on these lists. In respect of Parkinson's disease, there was one lady last week who was diagnosed by a GP five years ago. She has only seen a neurologist once in the last three years. That a crazy situation is storing up more problems for the health system.

In terms of neurologists, we know that it is a matter of research. People who have access to neurologists tend to live longer and live with their condition better. So we have got to put the money into the service to deal with this problem.

Ms Magdalen Rogers

There is a real issue with access outside Dublin.

Ms Richelle Flanagan

Yes.

Ms Magdalen Rogers

A lack of access is one of the reasons we are running this campaign for investment to provide five neurologists to support the hospitals in Mayo, Letterkenny, Wexford, Bantry and Portlaoise.

Deputy Rose Conway-Walsh

I thank the NAI for doing that. I also thank the Chair for allowing me to comment.

Ms Alison Cotter

There is no point in investing in this valuable rehabilitation unless it is followed up, like Deputy Conway-Walsh has highlighted. That is being done by our voluntary sector organisations. This matter has been highlighted in the strategy and in the neuro mapping project, details of which were published at the end of last year. Nearly 100 unique supports are being developed on the ground by community voluntary providers for people with neurological conditions and their families.

I have discussed the services provided by MS Ireland. In terms of the human impact of that, we have a lady who uses our national MS respite centre. Her daughter has been diagnosed with MS and her husband had MS. This woman is now 89 years of age. She has been a primary carer for most of her life. We have been told that the only reason her daughter is not in residential care is because of that service.

In terms of transitional rehabilitation, which has also been called out under the neurorehabilitation strategy, I know that acquired brain injury is dealt with in a traditional rehabilitation unit. I am conscious that I am here as the vice chair, and not just for my own organisation, which enables survivors of brain injury to return to their own homes or to more independent living within the community. Many people who have availed of that service have testified that they dream of returning to work to mentor future carpenters, which this person called out, or even becoming a lecturer. The service is just about keeping people well and living in their communities.

In terms of our services, for over 25 years MS Ireland has provided physiotherapy programmes for people with MS. We have had extremely successful Sláintecare integration fund projects and we have developed specialised online physiotherapy, which was developed during the pandemic.

On enhancing the effectiveness of investment, and I hate to bring the discussion back to numbers, there has been a reduction of healthcare utilisation just from this physiotherapy service alone, with a 43% reduction in health utilisations being reported, a 57% reduction in hospital bed days and a 49% reduction in falls. People living with MS tend to fall at the same rate as those over 85 years of age.

In satisfying that dual primal need, it is about ensuring people are well in their communities where they do not need to access these services which we know are going to be so in demand. It is also about ensuring that afterwards, people can avail of services that enable them to maintain those gains. There is currently a post-rehabilitation void. People may go home and may lose the gains they had which makes that investment null and void. These services pay for themselves in the long run. Research has shown that delaying or reducing disability due to MS reduces costs to the Irish health system by €19 million a year. I will also note, as Deputy Conway-Walsh has said, that there was scope for expansion of this and a submission was put in. We have received a commitment on that submission but nothing has been delivered.

In other services, Headway Ireland have locational rehabilitation which is also called out under the neurological rehabilitation strategy and it has very effective programmes in place, but this is in pockets. This is not available everywhere. I know that it is not available in Dublin, for example. This is a snapshot of the services provided by ourselves and the other 30 organisations under the NAI, and they all follow that key theme of enhancing the effectiveness of the community neurorehabilitation teams, CNRTs beyond that 12 weeks. It is about life beyond that intensive rehabilitation and enabling people to maintain those gains, to live well and to integrate back into society.

Our message is very simple. We need to see the further investment to deliver longer term treatment in our rehabilitation services beyond the maximum 12 weeks of intensive neurorehabilitation provided by the CNRTs. It makes very little sense - this has been called out by my colleagues - to invest in intensive short-term rehabilitation if we cannot support individuals in the longer term to return to or retain their employment, to maintain their independence and to live well with their condition. As Deputy Conway-Walsh has called out, this is about the people and families at the centre of this. If we do not keep them in our focus and to invest in this longer term rehabilitation, investment in this shorter rehabilitation piece will not work in the long term. I thank the Cathaoirleach for this extra time.

An Cathaoirleach

I thank Ms Cotter very much. I will speak now but I appreciate that there are other members also wishing to come back in.

On Ms Cotter's own alliance, its members have mentioned that there are 30 not-for-profit organisations. I believe it is even more than that. These are all household names such as Acquired Brian Injury Ireland, the Alzheimer Society of Ireland, Chronic Pain Ireland, Epilepsy Ireland, Enable Ireland, the Irish Hospice Foundation, the Irish Heart Foundation, the Huntington's Disease Association of Ireland and Headway Ireland. These are organisations we are all familiar with and we have all contributed to them or supported them at different times. She mentioned that there are 860,000 people living with a diagnosis of a neurological condition, with 50,000 people diagnosed with a condition each year. It is a big issue in Ireland and for her organisation but, more importantly, for its members. She outlined some of the challenges which face people who have a stroke. It is basically things like learning to speak, and it can be for a child or an adult. It can be where a person cannot walk or get up, or where a person can get into a chair but cannot get out of one, or get out of bed, go to the toilet or button his or her shirt. These are all the basics we expect we can do but are then faced with this challenge. The bigger challenge then is to look around for services and support and it is clearly not there.

We know that the organisation has a strategy in place but clearly the strategy is from 2019 to 2021 and we are now in 2024. There is probably a need for a new strategy but on the strategy which is currently in place, we know that two of the teams which have been established out of the nine are missing key staff, where the other areas have not been filled. The frustrating thing for anyone who is listening in and for us as members is that we have a strategy but we do not have the resources or the funding to implement that strategy. That, in itself, merits another meeting of this committee. We are all asking questions of the group which is coming in to highlight the weaknesses and gaps in the current strategy and services and that needs to be followed through. The NAI talks in its opening statement about the 300 beds. Is that 300 beds from the last strategy? What would be the alliance's view or opinion on the number of these acute beds we need now which are a follow-up for people who have had a stroke or developed a condition, which spreads across all of the areas covered by members of the alliance?

Ms Magdalen Rogers

That 300 is the recommended number and we have just one third of that. That figure is pretty much static since the framework was published in 2019. That is one area of the neurorehabilitation strategy where we have not really seen progress. We have the National Rehabilitation Hospital and some beds in Peamount Healthcare and in the Royal Hospital in Donnybrook but all in the east of the country and many less than we need. We have a one third shortfall in those post-acute rehabilitation beds. We had the insight earlier in this meeting as to what that means, which is that people in that vital window of rehabilitation are deteriorating unnecessarily because they cannot get that specialist inpatient rehabilitation. We are asking the committee to specifically ask the HSE for an action plan on inpatient neurorehabilitation because we have seen a delay in implementing that part of the strategy.

An Cathaoirleach

Am I correct in saying that if one is on a waiting list, nine times out of ten one's complications will get worse?

Ms Magdalen Rogers

The average waiting list for a specialist inpatient neurorehabilitation bed in Ireland at the moment is six months. That is for people who are lucky enough to get a bed in the National Rehabilitation Hospital. Once one goes outside Dublin, where consultants are a vital part of that inpatient neurorehabilitation picture, we do not have consultants in rehabilitation medicine in the west, the north west, the mid-west or the midlands. We have one consultant in rehabilitation in Cork who has no dedicated beds so they cannot put patients in a bed and they are transferred to the National Rehabilitation Hospital. We have a severe dearth in the implementation of that part of the strategy. I know that there is much there for the committee members to get their heads around on all of the different elements of the neurorehabilitation strategy. We have seen some progress on the community neurorehabilitation teams but we would call out, in particular, the inpatient post-acute neurorehabilitation beds issue as something on which we are looking for an action plan from the HSE.

If I can pick up on a further important point which my colleague, Ms Cotter, has made, the amount of time people spend in specialist rehabilitation, whether that is in an inpatient bed or in a community neurorehabilitation team, is limited. They still have a lifetime with these conditions and that is where the services provided by our organisations come in. They are already providing long-term community neurorehabilitation services in every community throughout Ireland and it is very important that they are seen as part of the neurorehabilitation strategy and that this aspect of the strategy is also delivered.

An Cathaoirleach

Before I return to the members, I remind the committee that it is being asked to enable the funds that have already been committed to specialist neurology nurses in community neurorehabilitation services to be actively translated into actual services on the ground; to request the HSE to deliver an immediate action plan to tackle the shortage of inpatient rehabilitation beds; and to begin to tackle the regional inequality and access to consultant neurology services by providing funding in this year's budget to support the development of dedicated outpatient neurology services in Portlaoise, Bantry, Mayo, Letterkenny and Wexford hospitals. Again, I do not believe the calls the alliance is making and is asking of us are radical but it is something where, if we have another meeting, these are calls we can perhaps try to follow up. Given that we have had meetings before on this, it would be important that rather than moving on to another issue, we try to follow through on this and see if something positive can come out of the meetings we have had with our witnesses.

I am conscious that Deputy Lahart has just arrived so I invite him to join the meeting. Senator Black has also indicated that she wants to come in a second time.

Deputy John Lahart

I thank the Chair. Briefly, I thank our committee's guests for their presentation and paper. I am a Government backbencher so I will follow up with the Minister on these issues in writing. The witnesses have acknowledged progress.

I take the point. There is no point in rehashing stuff. Huntington's disease was not mentioned. I have advocated for people with the disease. While the care pathway is nothing like it needs to be, it is down to the Minister, Deputy Donnelly, that we have made significant progress compared with two or three years ago. It is nothing like it should be but we have made progress. That was not acknowledged. I know there are 30 different neurological organisations in the umbrella group which is the NAI. Huntington's was way out on its own and ignored. Now it is not. I acknowledge that much more needs to be done. It has been brought in from the cold. It is a voice that is being listened to for the first time. I know the NAI has to make its pitch when it comes in. I could be very political but out of respect to the witnesses I will not be. Stuff is going on in this House. I will not politicise this. I would like to have seen that acknowledged. Something I have learnt, which I have said before, as a TD in just his second term, is that you want to be all things to all men and women in your first term and then you realise you cannot do that and you try to home in and narrow. That is certainly my experience. Huntington's was one issue on which I focused. I found that being in government as a backbencher helped. I saw a significant difference and progress, notwithstanding that much more needs to be done. That needs to be acknowledged too.

I accept everything the witnesses have said. It is very frustrating. My late father had motor neurone disease 30 years ago at a time when there was no care pathway. I appreciate where it has come to. I agree on the value of a care pathway. Just to illustrate, I recall, in his experience, nurses at the time, through no fault of their own, not being remotely familiar with any of the symptoms associated with his disease. Now, they would be. That was very frustrating. They made demands of him that simply were impossible because they were not familiar with it. I get that the care pathway is only a tiny bit of it.

That was the contribution I wanted to make. I thank the Chair.

Ms Magdalen Rogers

Deputy Lahart's comments are well made. A line in our opening statement referred to the legacy of progress. We acknowledge the progress that has been made. An issue we wanted to highlight today was that it is a pity some of that progress is being undermined by what are, essentially, administrative issues in some cases. It is a combination of delays and the recruitment moratorium. We appreciate that there has been significant investment. Regarding the nurses the Deputy mentioned, there is a specialist nurse in Huntington's for the first time. That is a game-changer for people with Huntington's. We have a responsibility to highlight progress and the gaps that remain. I highlighted that while there is a specialist nurse for people with Huntington's, in Dublin, for the first time, a second was promised in Galway. There was great excitement that there would be a nurse in the west for Huntington's so people would not have to travel with a debilitating condition and they could be seen in Galway. Unfortunately, that nurse post is held up in the recruitment moratorium. We have a responsibility to do both. I acknowledge that. We must highlight the good work that has been done and the gaps that remain. On that positive element, the Deputy is absolutely right. We acknowledge the work of the neurology clinical programme. The current lead, Professor Sinéad Murphy, and the previous lead, Professor Orla Hardiman, really got to grips with Huntington's.

Deputy John Lahart

Bloomfield, in our constituency, has found its path again in wanting to be a centre of neurological excellence. That was not by accident. There was a lot of encouragement and support from Government. Ministers went and met the team. I am personally very proud, and not in a haughty way. I am not getting carried away. It has allowed me to see the little gains you can make as a backbencher when you take an interest in a particular field. I accept there is a long way to go.

Ms Magdalen Rogers

Bloomfield is a member of the Neurological Alliance of Ireland. We acknowledge its work. Again, it is the bedrock of community, the long-term community piece, that the voluntary sector provides.

Deputy John Lahart

It is an exceptional organisation, in my experience.

Senator Frances Black

I reiterate for Deputy Lahart that the NAI has all morning acknowledged the progress that has been made. I appreciate that but it is absolutely vital the NAI is here to highlight the gaps. I wanted to say that because it is important. The lack of availability of psychological supports for people diagnosed with neurological conditions was mentioned. Will the witnesses say a little more about informal supports, for example, peer support groups? What peer support groups are available? I thought Deputy Conway-Walsh's contribution was important and powerful. She told the story of a woman from County Mayo and how difficult it is for her and her young children. Where does she get that support? Will the witnesses recommend that other voluntary organisations be available to her? Is a peer support group available? It sounds so small because she is in desperate pain. I am sure going to a peer support group is the last thing she is thinking about but perhaps it could help to advise her and give her some guidance on what she can do.

Ms Alison Cotter

I will not speak to the specific services of other organisations but I will link in separately with the Senator on what we may be able to recommend for that woman. I can speak to our services regarding the peer support element. Peer support for voluntary organisations comes into all of the services we provide. Regarding MS, as part of our national MS respite centre, it is not a peer support service but there are peer support elements. It is about people being around other people who understand their condition and what they are going through and supporting them in that way. Particularly with our physiotherapy programme, we group people by condition and disease progression, so there is peer support. People have people in the room who understand what it is like to be going through this condition and they can help each other, not only the physical, such as maintaining the gains they made in a CNRT, but also mental health. It is being looked at in a meaningful way regarding its impact in organisations across the NAI.

Ms Richelle Flanagan

As someone who lives with Parkinson's, I hid my Parkinson's for two years for fear of the stigma around people thinking I was less capable as a dietitian or colleague. It was important to find a peer group in my age group so that I could see it was possible to live with Parkinson's, be open about it and be supported. It is important for anyone with a neurological condition to break down those walls of stigma by enabling peer support groups. The reality is the health services will not be able to supply that, so it comes down to the charity and non-profit sector to supply that. Research shows, with the explosion of neurological conditions, peer support will become an important part of maintaining self-management and people's quality of life in the community. On Parkinson's specifically, Parkinson's Ireland supplies support groups, does online and offline classes and a programme for newly diagnosed people. There is also the Early Onset Parkinson's Disease Ireland group which specifically supports people with early onset Parkinson's. Neither organisation gets funding from the HSE to supply those services. Parkinson's Ireland potentially represents 18,000 people with Parkinson's but does not get any funding from the HSE to help it to deliver those services on the ground. That must also be recognised. It could really help the health services by taking that pressure off through peer support.

Senator Frances Black

100%. On that, with regard to the voluntary sector and particularly as Ms Flanagan said, do the charities involved connect with the healthcare system and the HSE? It is about those organisations working together. That kind of partnership is so important. We can hear the expertise of the speakers here this morning. They are here and delivering a really powerful session and giving us so much knowledge. I imagine it would be absolutely vital for the HSE to hear of that experience and Ms Flanagan's own personal story in particular. How do they work together? Do they work together or is there some connection or partnership?

Ms Magdalen Rogers

Absolutely. The Senator speaks to a very specific and very important point there. It is about integrated care and that is what we are all trying to achieve here. At MS Ireland, we work very well with the HSE and the health service on these things. To come back to the point about the importance of peer support within that integrated care approach, I note that peer support is not condition specific. We have opened our services to people living with other neurological conditions. For example, 20% of our intake in our respite centre last year was people with other neurological conditions such as Parkinson's disease, stroke and ataxia. For our physiotherapy programme, the Active Neuro programme in the mid west was also expanded beyond just MS. That is all taking into account this integrated care approach and working with the health service as it works with us to deliver these services on the ground. No one will deny there is a gap in the service within the health service but that is what we are filling at the moment and we need to be supported to do so.

Senator Frances Black

Did Ms Flanagan want to say something?

Ms Richelle Flanagan

I agree that the charity sector is there to help to bridge some of those gaps. It is criminal, really, that we do not have any respite services for Parkinson's disease, a condition where 70% of patients are over the age of 70 and going to be more advanced. It is great that we have access to MS Ireland but that is one facility and we need more facilities like that. The population in Ireland is getting older and that demand is only going to get greater.

Deputy Bernard J. Durkan

I agree with the motion that was read out earlier. That is absolutely it. The only addition I would make is for the specific areas I mentioned and any other area similarly affected in order to ensure nothing is left out. Mention was made earlier to the new philosophy regarding Sláintecare. We spent a lot of time in this committee trying to ensure that representation for the regions was recognised. This is a classic case where recognition of the regions did not happen and they are slow to be recognised still. This might be the answer to some of the questions we were asking earlier. A number of us were members of the old Eastern Health Board, where there was always an argument about this. The further away from the centre of power you went, the less influence you had and that was shown up in the statistics afterwards. I do not know how well the system that was eventually agreed is working but there was resistance to the need, as we saw it, for representation for the regions. That is in the board now. It is there. I do not know to what extent it is effective. At this stage, only time will test that. If would have been better if they were actually placed in the regions where they would know exactly what was going on. A mini board in each of the regions would be in a better position to assess the thing.

I am sorry for interrupting the speaker previously but I will say one thing. There is a tendency nowadays to attribute everything to bad government or government failure and so on and so forth. That is fine, that is politics and that is the way it goes. However, when these things are attributed to a party or parties in order to explain away the situation and say that all will be resolved when there is a change of government, that is politics and that is open to contradiction. That is for us to do to the Opposition, and those in the Opposition can and will do the same. Politics is not always an explanation for the resolution of a particular problem. In the older days here, nobody would get into the second sentence and they were pulled because of the difference between statistics, resolution and politics. Anybody can make politics out of any situation but it does not always address the situation. What I want to say is that we understand what the situation was. If we look at FEMPI, it is still not resolved in many cases even though it was supposed to be. There are throwback situations that are unfortunate and should not be and our job is to try to resolve them in the shortest possible time, while taking into account the really serious and fundamental issues such as the ones referred to by the witnesses.

An Cathaoirleach

Do the witnesses want to respond?

Ms Magdalen Rogers

Again, I thank the committee for its support, not for the first time. The committee has had hearings with us over the last three years on these issues and it has always been very supportive. To summarise the asks for today, one immediate ask is to enable the funds that have been committed to neurology and neurorehabilitation services, whatever the reason for the delay. We have heard about recruitment moratoriums and other delays. It is about bringing it back to the patients and the people involved that once that commitment has been delivered - it will be a very positive legacy when it has been delivered - this will translate into services on the ground. The committee will contribute whatever understanding or action it can on that issue to find out why there are those blockages, so that when funds have been committed we will see those services delivered on the ground where they are needed. We welcome the support of the committee to write to the HSE for an action plan on the specific issue of inpatient neurorehabilitation beds because that is an area of the strategy where we are disappointed in the progress made to date. We certainly feel there is a need for a specific action there. Then we have a specific ask for the forthcoming budget that there would be action on the issue raised by Deputy Durkan, that is, the regional inequity. It should not matter where you live in the country in terms of your access to neurology services. We heard a very telling example of that from Deputy Conway-Walsh today. We also ask for investment in the budget for that regional inequity, regional neurology services and also the remaining community neurorehabilitation teams.

An Cathaoirleach

I thank Ms Rogers very much. We all know as politicians that we tend to meet more of those people for whom the services are delivering but in our ordinary life we tend to hear more from people where the services do not exist or are not being delivered for them. The point was made about the huge cohort of people who have a neurological condition. In another couple of years, we will be talking about a million people who will have it. That is a huge proportion of our society. We have a plan in place. It is probably outdated at this stage but regardless of bringing politics into it, we clearly have a system that is not working and is not delivering for all those people who are our constituents but also our neighbours or people we know. The important thing is that we try to come up with strategies that will work for those people. It is something we will return to as a committee. I will certainly raise it at the next committee meeting and we will try to get a date to bring in the relevant people. We will try to follow up on the action plan the witnesses are looking for for people. We have had other organisations in before the committee. We had representatives from Vision Ireland in a number of weeks ago and people from the deaf community in the weeks before that and they were saying there was no plan in place. Here we have a plan but it is not being acted on and not being resourced. Again, we need to ask why. If resources were allocated for the member organisations for those individuals who have a neurological condition and they were not followed through, this raises questions about what happened there. I will leave it at that.

I thank our guests and the 30-plus organisations they represent for all the work they carry out, day in and day out, on behalf of the members of those organisations and the general public. We will return to this issue in the near future. The committee has heard some important information and a lot of questions have been asked. We will return to the issue.

The joint committee adjourned at 12.10 p.m. until 9.30 a.m. on Wednesday, 22 May 2024.