Oireachtas Joint and Select Committees
Wednesday, 17 May 2023
Joint Oireachtas Committee on Health
Access to Community Neurological Rehabilitation Teams: Discussion
Bernard Durkan (Kildare North, Fine Gael)
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The purpose of the meeting is to discuss consideration of access to community neurological rehabilitation teams. To assist the committee with this I am pleased to welcome from the Neurological Alliance of Ireland, NAI, Ms Magdalen Rogers, executive director, Dr. Susan Coote, associate professor, University of Limerick, and Dr. Niall Pender, principal clinical neuropsychologist in Beaumont Hospital and associate professor at the school of medicine in Trinity College Dublin.
The note on privilege is here whether we want it or not. Witnesses are reminded of the long-standing parliamentary practice that they 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 engage in speech that might be regarded as damaging to the good name of the person or entity. If witnesses' statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.
Members are 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 he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the precincts will be asked to leave the meeting. I ask any member who is participating via Microsoft Teams to confirm that he or she is on the grounds of the Leinster House complex prior to making a contribution to the meeting.
I now invite Ms Magdalen Rogers to make her opening remarks on behalf of the Neurological Alliance of Ireland.
Ms Magdalen Rogers:
On behalf of the Neurological Alliance of Ireland, the national umbrella for more than 30 neurological charities, I thank the Chair and members of the committee for their invitation to discuss the issue of access to community neurorehabilitation teams. We welcome this opportunity to update the committee following on from the NAI presentation in March last year on growing waiting lists and pressure on neurological services, exacerbated by the Covid-19 pandemic. We requested the support of the committee in our call for investment to tackle the critical shortage of nurse specialists in neurology services. Thanks to its support and representations on this issue, funding for 23 specialist nurses was announced in budget 2023, which, together with the roll-out of the national headache pathway and other pathways, will see a total of more than 30 new specialist nursing posts created in neurology services this year.
We also highlighted to the committee last March our serious concern at the ongoing delays in implementing the 2019-2021 framework for the national neurorehabilitation strategy, a commitment in the current programme for Government. Our presentation focuses on a core recommendation of the neurorehabilitation strategy, namely, the establishment of a network of nine community neurorehabilitation teams, one in each community healthcare organisation, CHO, area in the country. This recommendation is echoed in the recently published national stroke strategy and the 2018 trauma strategy.
Community neurorehabilitation teams provide short-term intensive rehabilitation input of up to 12 weeks, with access to multidisciplinary services including physiotherapy, speech and language therapy, occupational therapy, social work and neuropsychology.
Delays in implementing the framework for the neurorehabilitation strategy have meant that no additional teams were established on the ground over the three-year implementation period 2019-2021. Seven of the nine CHOs nationwide have no community neurorehabilitation team up and running, as of May 2023. A postcode lottery now exists where 85% of neurological patients do not have access to a community neurorehabilitation team. The Neurological Alliance of Ireland is calling for funding to be allocated in this year's budget to enable the establishment of teams in CHOs 5, 8 and 9, where there has been no allocation to date, as well as priority action by the HSE to establish teams without delay in CHOs where funding has been made available.
Community neurorehabilitation teams are critical to tackling the lack of access to neurorehabilitation in the community. The consequences are a significant and preventable level of disability, resulting in higher healthcare use and increasing cost to the health service through earlier admission to nursing homes, the need for home care supports and an increased likelihood of falls and subsequent hospital readmissions. Demand for community neurorehabilitation services, already high pre-pandemic, is now critical due to the combined needs of those who needed to be discharged early and missed out on neurorehabilitation, those impacted by the curtailment and closure of services due to lockdown and those requiring rehabilitation after contracting the virus. The lack of neurorehabilitation teams in the community is exacerbating the problem of delayed discharges, further limiting access to inpatient rehabilitation in facilities such as the National Rehabilitation Hospital. The bed-day saving from having the national network of community neurorehabilitation teams in place is up to 42,000 bed days annually, based on an average saving of three bed days, if they can be discharged to a community neurorehabilitation team.
We thank the committee for the opportunity to highlight this issue and ask it for its support for our call for funding of teams in CHO areas where there has been no allocation to date, and priority action in areas where funding has been made available, in order to deliver on the commitment to having a team in each of the nine CHO areas.
Bernard Durkan (Kildare North, Fine Gael)
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I thank Ms Rogers.
Seán Kyne (Fine Gael)
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I thank Ms Rogers for her presentation and all the witnesses for attending. Where there are neurorehabilitation teams, how do they work on the ground?
Dr. Susan Coote:
There are existing teams in CHO 3, comprising Limerick, Clare and north Tipperary, and CHO 1, Donegal. They bring together the expert skills of physiotherapists, occupational therapists, speech and language therapists and neuropsychologists, all working together towards the goals of the person. It is very much about setting goals with the person. It might be that somebody wants to be able to walk again in order that he or she can return to work or participation in life, or that somebody has a need for expert skills from occupational therapy to allow him or her to return to work. It is very much based on the needs of the person and he or she will receive this multidisciplinary input for a period of about 12 weeks, working together and following programmes prescribed for each individual by those therapists to enable him or her to meet life goals following a neurological injury or insult.
Seán Kyne (Fine Gael)
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Ms Rogers said that in budget 2023, funding for 23 specialist nurses was announced. There are three specialist nurses in CHO 2, which is very welcome, and there was a campaign last year to recognise the need for nine specialist nurses. Obviously, three is better than zero, but there is still a gap of six. With a full complement or team, how does Ms Rogers envisage services improving? How necessary is it on the ground and how does she foresee it developing?
Ms Magdalen Rogers:
The addition of three specialist nurses to University Hospital Galway is very important and we warmly welcome it, although, as the Senator said, there is still a shortfall in specialist nursing in the hospital. It will take time to recruit and train the nurses. It is important that those nurses bed down in the system but also that there be longer term planning to address that shortfall. The shortfall in the hospital is critical, not least in order for the service to meet its requirements and serve the large catchment areas it has in University Hospital Galway.
The hospital neurology services and the community neurorehabilitation services complement each other. They are both essential to the care of the patient. We are hearing from the acute neurology services that not having community neurorehabilitation teams in place means they have no service to discharge people into the community once they have finished their hospital care and got their diagnosis and immediate care in the hospital. There is a revolving door whereby people are dependent on acute hospital services for their ongoing access to therapies, and the acute hospital neurology services cannot meet their needs.
Having fully resourced acute hospital neurology services within the hospitals is critical and nurse specialists are very important to that. We really appreciate the support of the campaign and the increasing resourcing for nurse specialists. The resourcing of community neurorehabilitation teams is a critical part of neurological care services.
Seán Kyne (Fine Gael)
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Ms Rogers said there was funding for 23 nurse specialists in budget 2023. Is there capacity within the system to get those nurses in place? Are they available and are enough places coming through the system?
Ms Magdalen Rogers:
I spoke just yesterday to representatives of the Irish Neurology Nursing Forum, which was set up last year, and to the clinical lead for neurology services, and they assure me plans are coming on board for third level training for specialist nurses in neurology. That will increase the capacity in the system to recruit, train and put nurses in place in the more than 30 nursing posts that have been approved overall in neurology this year.
Seán Kyne (Fine Gael)
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Is Ms Rogers confident the pipeline is there?
Ms Magdalen Rogers:
Yes. The nurse training was a critical aspect of this, and when we were running the campaign, we always knew this needed to happen in tandem. Thanks to the clinical lead for neurology services, Professor Hardiman, and the Irish Neurology Nursing Forum, that work has been done and is ongoing to ensure third level specialist training will be available for neurology nurses. There is future planning in regard to having those nurses available for the system when it needs it.
Seán Kyne (Fine Gael)
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Specialist nurses carry out their important work prior to discharge and then discharge, in some cases, to places where there is no community team, but in some areas speech and language therapy or physiotherapy may be available. Does the alliance want all services to be together in, for example, a primary care centre nearby or within the community?
Dr. Susan Coote:
There are two parts, namely, specialism and working with a team. Primary care is very generalist, and I admire my primary care colleagues, who might work one day with somebody who has back pain and the next day with somebody who has multiple sclerosis or stroke. Within physiotherapy, occupational therapy and speech and language therapy, neurological rehabilitation is a subspecialty and you want to be treated by the people who have that subspecialty, but it is also important these teams work together. As a physiotherapist, I might work with somebody who has communication problems and problems with thinking and memory, which would be addressed by psychology, as well as other issues with their physical presentation. I cannot work in isolation, so the teams are the important aspect of this. It is the multidisciplinary nature of the teams that is the key to their effectiveness.
Moreover, you do not want a physiotherapist who specialises in back pain but, rather, a neurological physiotherapist, which is why there is specifically a senior physiotherapist at that level. You want somebody who knows about stiffness and spasticity and about rewiring the brain, neuroplasticity and the mechanisms for recovery. The specialist nature plus the multidisciplinarity of the teams is the key, and that is why they need to be teams rather than just one individual discipline. These are people with complex needs and multiple issues who need that team to improve.
Seán Kyne (Fine Gael)
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Where the teams are in place, are we talking about all the disciplines together in an HSE building, a primary care centre or a part of a hospital? How will it work in practice?
Dr. Susan Coote:
I can comment about the Limerick team on the ground. St. Camillus’s hospital is an over-65s rehabilitation facility and the team is based in the grounds of that. All the disciplines sit in the same office and there is a physiotherapy gym, an occupational therapy treatment room and individual rooms for speech and language therapy and psychology. They meet as a team to discuss patients' needs, and as a team with the individual to establish his or her goals, in order that everybody on the team is working towards the individual’s rehabilitation goals. The Limerick team has been established for a long time but is not at the staffing levels recommended in the latest documentation. Even though it exists in Limerick, therefore, it does not have its full complement and needs to be enhanced.
Unfortunately, waiting lists in Limerick are now up to six months, which is not ideal, although it highlights the demand for these teams and how important they are.
In terms of the outcomes, people are going home and living active lives in the way they want, people are going back to work and people are walking again because they have this input, whereas if they did not, they would be wheelchair users. Again, it is about the impact for the person living with a neurological condition, but also the impact for the health service. For example, somebody who requires two people to get from their bed to the chair may achieve independence in that transfer through community neurorehabilitation. That has obvious benefits in the health system and in terms of the need for carers but it also has an impact on the family in that, for example, the husband can return to work because the wife is now independent. The impacts are huge and wide-ranging. It is important that it is at the level of people being able to get onto the floor to play with their children and grandchildren, to go back to work, to walk or to dress themselves. That is what we are talking about, and those are the outcomes that are achieved by the existing teams working together.
Seán Kyne (Fine Gael)
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Excellent. There are quality-of-life issues for patients. Dr. Coote mentioned the savings on bed days. I assume it would also be the case that patients who go through full team discipline and all of that are less likely to suffer from falls and breaks and subsequent admission or readmission to hospitals.
Dr. Susan Coote:
That is a very important point. We know that people with multiple sclerosis, stroke and Parkinson's fall at the same rate as people who are over 85, so falls are a significant issue for this population. However, the key thing is that the falls treatments that we would do with somebody over 85 are completely different from those for somebody with MS who is 36 and raising a family because they have completely different falls risk factors than the over 85s. That again highlights the specialist nature of it. If we look at the research evidence for preventing falls in this population, there are very different structures and treatments that we would have as therapists working together to address this than, for example, in regard to falls prevention for older people. While there have been huge advances in terms of therapy posts for enhancing community care for older persons, that is not applicable to this cohort. They have very different needs and need a very different specialism from therapists who understand the falls risk factors that are unique to them, like issues of spasticity, stiffness or the interface between memory, thinking and planning and falls risk.
It is a very specialist subspecialty in itself and it is one for which there is significant research evidence. We know from our own work that we can reduce the number of falls people have by 50% by providing intervention in the community both from these community neurorehabilitation teams and also from the work of the charities which then supplement this work in terms of implementing programmes to maintain their status after rehabilitation.
David Cullinane (Waterford, Sinn Fein)
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I welcome the witnesses. I thank them for their advocacy and thank all of the constituent organisations that make up the alliance for the work they do.
I might start with the issue of specialist nurses because I want to first establish the facts in regard to some of the issues we are discussing. Obviously, I welcome the additional funding for the specialist nurses that was made available last year, and I know quite a lot of advocacy was done by the alliance, which I would argue made a difference. How many nurses were sought and how many were then funded? What is the deficit from the perspective of the Neurological Alliance of Ireland? What is the current shortfall and what more needs to be done?
Ms Magdalen Rogers:
Nationwide, we highlighted at the start of our campaign a shortage of over 100 specialist nurses in neurology services. Following the very successful campaign that we ran with the support of members of this committee and other elected representatives, we had 23 funded as part of the campaign, but if we take into account other initiatives within neurology services and the development of specialist pathways, we have had over 30 new specialist nurse posts created in 2023. It is important to note, and I thank the Deputy for pointing it out, that this just brings us to a little over half of the specialist nurses that are needed, and that is just to meet minimum requirements in the Irish health system.
David Cullinane (Waterford, Sinn Fein)
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There is still a need for 70 positions from the perspective of the Neurological Alliance of Ireland.
David Cullinane (Waterford, Sinn Fein)
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From the perspective of the Neurological Alliance of Ireland, how realistic would it be to deliver those 70 specialist nurses and over what timeframe? I would imagine it is unrealistic to do it in one year because of those workforce planning issues so, realistically, what is the best estimation as to how long it would take to put those other 70 positions in place?
Ms Magdalen Rogers:
We were very realistic from the start of the campaign. We called for up to 20 nurses a year over five years in order to implement the model of care for neurology services, and that would still be our messaging around that. As I said, we have seen an unprecedented number with the 30 positions funded this year, but it is important to point out that this is after a very long lag where no nurses were put in place for a long number of years. As I said, that just brings us to a little over half of what we need, so over the next four years, because that third level specialist training is coming on board in the next year or two, there will be capacity and training in the system to bring those nurses on stream.
David Cullinane (Waterford, Sinn Fein)
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I want to move on to the community neurorehabilitation teams. I have engaged with Mr. Bernard Gloster directly on this and he has signalled to the health committee that he personally wants to deal with this matters next week. Hopefully, if he is listening, he will be coming with good news in regard to the outstanding ones. He did get the national director to send me the most up-to-date information. I just want to check factually that the information I have is also Ms Rogers’s understanding, which I am sure it will be. If I am right, based on the response I got, there are two CHOs that are providing what they call small community neuro-rehab teams but they predate the strategy, and they are in CHO 3 and CHO 1. Is that correct?
David Cullinane (Waterford, Sinn Fein)
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There is currently no funding for community neuro-rehab teams in CHOs 5, 8 and 9, and in the others that are left, there is funding but they are not up and running. Is that correct?
Ms Magdalen Rogers:
Yes, that funding has been in place since November 2020 and we have not seen teams established on the ground - that refers to CHOs 6 and 7. Funding was announced in budget 2023 for two neurorehabilitation teams and an announcement came out last week from the Minister of State, Deputy Rabbitte, that those teams would be in CHOs 2 and 4.
David Cullinane (Waterford, Sinn Fein)
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I will read the response I got and I want to pick the brains of the witnesses in terms of whether they believe this is satisfactory and if we are on the right course. The response states that there is currently no funding for community neurorehabilitation teams within CHOs 5, 8 and 9, but moving forward with the strategy and subject to the success of the MCRN, which is the managed clinical rehabilitation network demonstrator project, the plan would be to establish population-based community neurorehabilitation teams from now through to the end of 2026 within each regional health area, RHA, following the implementation of the new regional health areas, subject to funding. There are a lot of caveats there in terms of pinning this to the regional health areas and it being subject to funding, and 2026 seems to be a target that is somewhat in the distance. What engagement has the Neurological Alliance of Ireland had, or has it had any engagement, with the national director on that? Does the information that I have match the information the alliance has been given?
Ms Magdalen Rogers:
The information on the current provision is also our understanding. The date of 2026 is new to me and the Neurological Alliance of Ireland. I would be concerned about that timeframe, given the implementation plan which was recommending the nine teams – that is, a team in each area - between 2019 and 2021 was not implemented. I would be concerned we are now pushing out into 2026 when there is that existing inequality where people in some parts of the country have been able to access a neurorehabilitation team for some years now. We are at multiple different streams in terms of people being able to access a neurorehabilitation team so I would be very concerned that we are now pushing it out for a further three years.
David Cullinane (Waterford, Sinn Fein)
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Let me take this down to a local level because there happens to be one in the CHO area that Waterford is in. I know we have two consultants who specialise in neurology in Waterford but we do not have a clinical nursing specialist, or that is my understanding. If we do not have that multidisciplinary service, I imagine that the earlier point arises in terms of the revolving door and patients being discharged but having no primary or community care access. Is that what is happening in Waterford, for example? Is that a good example of the lack of integration between the acute side, the primary side and the community side?
Ms Magdalen Rogers:
It is a very good example. Neurology and neurorehabilitation are part of a pathway. These are often people with lifelong conditions so they are seen in neurology services, they are seen for their diagnosis and their acute treatment, but then they need to be discharged out to the communities where they live.
If one does not have multidisciplinary care available in the community, one sees a revolving door and an unnecessary deterioration of neurological patients in the community. We are aware that there is not that dedicated multidisciplinary care available in the south east. The neurology service is underdeveloped. It is serving a catchment area of over 500,000 people. It should have seven consultant neurologists in place. It has 2.5 whole-time equivalents, as I understand it. The current nurse specialist post is vacant, but we are aware it has been readvertised-----
David Cullinane (Waterford, Sinn Fein)
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Would that wreak havoc on primary and community waiting times?
Dr. Susan Coote:
Absolutely, and I have an example of a woman with MS who had a fall, who needed a walking aid and who was referred to primary care by me through MS Ireland. I had a phone call from the physiotherapist to say that she was 100th on his waiting list. I said that surely this was a priority, to prevent her from falling, breaking her hip and ending up in hospital for weeks at a time and needing increased care on discharge. He said that waiting list was his top priority. These specialist services are just not there in primary care. There are pockets of good practice, but they are pockets, and it is that inequity which is the important piece we are raising today.
David Cullinane (Waterford, Sinn Fein)
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On that issue, is access to physiotherapy generally a problem across the State?
Dr. Susan Coote:
Yes it is. Again, I refer to the specialist nature. If one has multiple sclerosis, a stroke or a brain injury, one wants a neurological physiotherapy. As I said, my primary care colleagues do an amazing job. Most of them do not have neurology as a subspecialty. It is a bit like going to a neurologist if one breaks one's leg. If one breaks one's leg, one wants a orthopaedic surgeon. If one has a neurological condition, one wants a therapist who specialises in neurology and, again, who works as part of a team. It is about that lady not falling and breaking her wrist and not being able to use her walker and needing two people to care for her. There is also the matter of her quality of life and all the other consequences.
Our members in MS Ireland will tell us that they just do not get into primary care. When they do, they have six sessions of treatment, which is arguably insufficient. Looking at the research evidence for rehabilitation, people need up to 12 weeks for rehabilitation. Then they need ongoing care after rehabilitation to maintain those gains. We talk about the post-rehabilitation void whereby people literally have this amazing rehabilitation service and then nothing happens. As Ms Rogers said, it is a continuum. One is discharged from acute care, one has rehabilitation, and then one needs post-rehabilitation care in an ongoing way, because these people are living with these conditions for the rest of their lives.
David Cullinane (Waterford, Sinn Fein)
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I might ask one more question and finish. Mr. Bernard Gloster has indicated to this committee that he specifically wants to deal with this issue when he comes in to discuss the HSE's corporate plan. We hope that he will be coming with better news than what we have been given so far. Is there any good reason why these teams are not in place in some of the CHO areas? It strikes me that this was part of a strategy. There are many strategies which we seem to have put in place in health, and in lots of them we do not resource them. There are no timeframes and no implementation. This seems to be another example of that.
We will have the head of the HSE in. He is going to deal with it. I welcome the fact that he seems to be taking a hands-on approach at least. When we are putting questions to him, will the witnesses indicate if there is any good reason as to why these teams are not yet fully up and running across each CHO area?
Ms Magdalen Rogers:
This is tried and tested. These teams have been up and running for a number of years. Those in CHO 1 and CHO 3 have been in place for more than a decade. There is a blueprint for these teams. There is a geographic inequity. We explain to patients on a daily basis that if they live in the CHO 1 or CHO 3 areas, they can access this service. That is not the case for people in other parts of the country. These have been shown to work, and to be very effective. It is not a recruitment issue, because the button has not been pressed in the context of trying to recruit for the remaining teams. The teams have not been established on the ground. They have not been recruited yet. It is not like the recruitment has started and they have not been able to fill the posts. There is no good reason why these teams are not in place. I will invite Dr. Pender to speak on the importance of that from the point of view of an acute hospital environment if we have time.
David Cullinane (Waterford, Sinn Fein)
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I am finished anyway, so if Dr. Pender wants to take this-----
Bernard Durkan (Kildare North, Fine Gael)
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We have ten minutes, including for questions and answers. There will be an opportunity to follow up on it later, however.
I should have said at the outset that a number of members will have to absent themselves because there is business to be dealt with in the House.
David Cullinane (Waterford, Sinn Fein)
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Starting with me.
Bernard Durkan (Kildare North, Fine Gael)
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Starting with Deputy Cullinane. That will come. Our apologies, but that is the way the House is setting and business goes on. Members have to be in two or three places at the same time. Deputy Róisín Shortall is next.
Róisín Shortall (Dublin North West, Social Democrats)
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Everyone is very welcome. I thank the witnesses for their ongoing work and their advocacy. I will have to leave in about 45 minutes also. There is health business to be dealt with in the Dáil, but I will be back afterwards. I hope the witnesses will excuse us for having to leave.
The battle is usually for a strategy, but the witnesses have the strategy and there does not seem to be anybody driving that at HSE level. I wonder what engagement there has been with anybody, either in the Department of Health or the HSE, to move this along?
Ms Magdalen Rogers:
It is important. I thank Deputy Shortall for that comment and for reminding us about the neurorehabilitation strategy. The strategy dates back to 2011. We waited in the wilderness for an implementation plan, which eventually emerged in 2019 and covered the period up to 2021. As the Deputy Will be aware from other testimonies we have given to this committee, we saw very little progress during that three-year period. A national steering group was established within the HSE in respect of the implementation of the neurorehabilitation strategy, but it is playing significant catch-up because of the lack of progress during the three years to which I refer when very little action was taken. As I testified before this committee last year, the steering group only met a couple of times during that three-year period.
Róisín Shortall (Dublin North West, Social Democrats)
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Was that due to Covid-19 or was there another reason for it?
Ms Magdalen Rogers:
There were multiple reasons, including Covid-19 and staff changing. The delays between the publication of the strategy in 2011 and the emergence an implementation framework in 2019 show that there is a lack of a sense of urgency around the implementation of this strategy.
While we have had engagement, there is a serious catch-up piece. I become anxious when I hear 2026 being mentioned, and a further three-year roll-out for this, with no good reason being offered as to why these teams should not be in place. It is important to remember that the community neurorehabilitation teams are just one aspect of the implementation of the neurorehabilitation strategy. There is also a critical need for in-patient rehabilitation services, and Dr. Pender can speak to that. However, there are very clear, doable recommendations which could be put in place and would make an enormous difference to people's lives, and their health within their communities, if the nine teams around the country were put in place as promised.
Róisín Shortall (Dublin North West, Social Democrats)
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Pardon the pun, but it seems like no-brainer to implement this strategy, and-----
Róisín Shortall (Dublin North West, Social Democrats)
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It is solely staff costs.
Róisín Shortall (Dublin North West, Social Democrats)
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What number of staff are we talking about in total, to staff all of the nine teams? Do we know?
Ms Magdalen Rogers:
The specialist model of care for rehabilitation services sets out the recommended staffing for community neurorehabilitation teams. At the moment, the national steering group is looking at a staffing of about 11 staff members, and that would include all the core disciplines, including speech and language therapy and occupational therapy, but ,critically, also services like neuropsychology and social work, which would be part of these teams. What we are seeing around the country is the existing teams within CHO 1 and CHO 3 not having reached that staff complement. It is critical that all the teams are staffed to the same degree, and also within the specialist recommendations.
Róisín Shortall (Dublin North West, Social Democrats)
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Do the recommended staffing numbers on each team reflect the population size within the CHOs? Is the overall number adjusted for population size?
Ms Magdalen Rogers:
Establishing the nine teams is just a first step. One would have one team to cover the 300,000 or 400,000 population within a CHO. It is a huge commitment for that team of 11 people, so we would see it as just a start. It is important to emphasise that even this, namely, even having one team for those huge CHO areas, has not happened in most CHOs. It is a forward planning piece, having one team on the ground at least to start with. It is important to realise that these teams not only provide direct therapeutic intervention, but they also act as a hub within communities to refer people to other services.
That is a really critical aspect, following on from what Dr. Coote has said about that specialist nature. Signposting to other services is vital. Dr. Pender can talk about conditions like Huntington's disease, where it is really important to have a watching eye in the community over these patients through a community neurorehabilitation team, so that they can be referred for specialist support.
Róisín Shortall (Dublin North West, Social Democrats)
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I am just probing about the actual detail of this because of the fact that Mr. Bernard Gloster is coming before this committee shortly and I want to be very clear about what is required.
Róisín Shortall (Dublin North West, Social Democrats)
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In the CHOs where funding has been allocated but there has been no recruitment yet, what is the reason for that at this stage, given that we are almost halfway through the year?
Ms Magdalen Rogers:
These would be the teams in CHO 6 and CHO 7, where the funding was allocated in November 2020. It was allocated to the Sláintecare redesign fund. To be honest, multiple reasons have been put forward for this. I understand a governance model is being developed for CHO 6 and CHO 7 but it is hard to----
Róisín Shortall (Dublin North West, Social Democrats)
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Sorry, did Ms Rogers say a governance model?
Ms Magdalen Rogers:
Yes, a governance model is being developed for the teams in CHO 6 and CHO 7. To be honest, however, it is hard to see why we have had no momentum in the context of establishing these teams. We are now, as the Deputy said, halfway through 2023 and the funding was made available in 2020.
Róisín Shortall (Dublin North West, Social Democrats)
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Can Ms Rogers explain the situation with regard to the specialist nurses. How do they tie in with the teams?
Ms Magdalen Rogers:
The specialist nurses are based in acute neurology services within the hospitals. They perform a critical role there in supporting the acute neurology services but it is all interlinked. It is all part of a pathway. The specialist nurses would refer out to the community neurorehabilitation teams and the community teams would also refer back in. They are all needed as part of the pathway for people with neurological conditions. These are often life-long conditions, where people are living for years in the community. They need to have support available at the immediate stage when they are diagnosed with a neurological condition and they have their immediate treatment and also longer-term, in the community.
Róisín Shortall (Dublin North West, Social Democrats)
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The Neurological Alliance of Ireland represents 30 neurological charities. Is it the alliance's view that if the strategy was fully implemented, the teams would be able to provide services for patients across those 30 different neurological conditions? Are we talking about a single model or single team to address all community neurorehabilitation issues?
Ms Magdalen Rogers:
I will ask Dr. Pender to come in on that question. We are talking again about that pathway approach. There are the acute neurology services, then there are the teams providing that 12 week's of intensive rehabilitation, and then there is the longer term piece which is where the voluntary organisations come in. I will ask Dr. Pender to talk about the work that he does.
Dr. Niall Pender:
I echo what Ms Rogers said. This is part of a stream of care. It is international best practice. We see it all over the world. This model is well-established and has been shown to be very cost effective, as well as effective in reducing neuro-disability. When looking at the totality of neurological and neurosurgical conditions, one can imagine somebody who is diagnosed with a neurodegenerative disease like motor neuron disease, Huntington's disease or another condition and the utter devastation for that person and his or her family on getting such a diagnosis. One can also think of somebody who has had a head injury or a stroke, somebody who came off a bicycle and suffered concussion and so on. We have to encapsulate all of the care for all of those people. At this moment in time, all of those people are discharged from really good acute hospital care - under-funded and under-resourced but really good quality care - and they are lost. They are lost to the system. They are lost to themselves and they do not know where they are going or who to go to. There is no other disease where that happens, where patients are discharged from acute care and are sent off into the community to find the care themselves. This is what is happening. We have people struggling with neurological injuries and disabilities of various kinds who are trying to fight for their own care. Their relatives are also trying to fight for their care.
The purpose of the streams that we have is that people would be discharged to the community team, they will get their 12-week programme but they will also link in with a team of experts who can guide and help them, point them in the right direction and give them their treatment. The teams will essentially be the hub for their care in the future, in terms of referring on and referring into the voluntary organisations which are currently desperately trying to hold the line. Many of these voluntary organisations are under-resourced and have massive waiting lists themselves because they are bearing the brunt of the lack of community services. Hopefully, the community teams will act as a hub for all of those people, whether they have had neurological, neurodegenerative, or neurosurgical events. The teams will be able to support their care in the community.
Róisín Shortall (Dublin North West, Social Democrats)
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Dr. Pender raised the issue of cost there. Clearly, an acquired brain injury or a neurological condition has a huge personal cost for the individual and his or her family. It is a rights issue at the end of the day, or it should be. It also has a huge cost for society and our economy. Has any cost-benefit analysis been done in this country or in a comparable country that we would quote?
Dr. Niall Pender:
There have been quite a few analyses and we can pass on the details to the committee. Those that have been done have shown that neurological rehabilitation is very cost-effective, it benefits the individual and the family and it benefits at both an employment and societal level. Most of the outcome studies have shown that neurorehabilitation is not just cost neutral but is also beneficial. We know that it is cost-effective and it supports, at a broader level, society and the return to society. At this moment in time, many people's relationships will break down and 20% of those with even mild head injuries will not be back at work after a year, while those with moderate to severe brain injuries will not be back to work. Approximately 40% of homeless rough sleepers have had a brain injury at some stage in their lives prior to.
Róisín Shortall (Dublin North West, Social Democrats)
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Sorry, what percentage?
Dr. Niall Pender:
About 40%, according to international studies. People in prison have higher rates of brain injuries, acquired beforehand. There is an enormous cost to society from not doing anything. The literature and science around the world tells us that if we get people into neurorehabilitation services quickly, we can mitigate all of these other events and save money in the long run.
Róisín Shortall (Dublin North West, Social Democrats)
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Is that taking account of all costs across the board?
Bernard Durkan (Kildare North, Fine Gael)
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I am sorry but we have to move on. The next contributor should be Deputy Gino Kenny but he has agreed to let Senator Conway go before him.
Martin Conway (Fine Gael)
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I thank Deputies Kenny and Hourigan for letting me go ahead of them. I must attend a very important meeting with the Minister for Children, Equality, Disability, Integration and Youth at 10.30 a.m.
Our guests are very welcome and I thank them for their ongoing work. Ms Rogers said in her opening statement that budget 2023 provided funding for an additional 23 specialist nurses. How many of those nurses have actually been appointed?
Ms Magdalen Rogers:
We understand that the letters of appointment have just gone to the hospitals this week. The HSE service plan was published a number of weeks ago. It needed to be published before those letters of appointment could go to the individual hospitals. I do not think any of those nurses have been recruited as yet because the hospitals have just been notified, within the last week, that those posts are available.
Martin Conway (Fine Gael)
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The posts have not even been put out for recruitment yet, so would it be reasonable to expect that we will see the extra nurses in place by the end of the year or is that wishful thinking?
Ms Magdalen Rogers:
The system will be stretched to recruit those nurses by the end of the year. However, with the training that has been put in place, and with the commitment of the neurology services to identify people in other nursing roles and encourage them to apply for these posts, we would be hopeful that a lot of the posts would be filled. It certainly will be a challenge for the services to put those nurses in place. As with my earlier comments to Deputy Cullinane, we would see this as part of an ongoing investment to bring up the shortfall in nurses. We certainly do not expect it to be solved within one year.
Martin Conway (Fine Gael)
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In terms of their dealings with the HSE, our guests spoke about their frustration with ongoing delays. While Covid-19 was clearly an issue, there are delays that should not have happened. Is there any person in the HSE that they engage with on a regular basis?
Martin Conway (Fine Gael)
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Ms Rogers does not have to name anyone but is there an individual with whom she liaises on a regular basis? A lot of organisations that appear before this committee tell us that there is not a lead person in the HSE with whom they deal, or that the lead person keeps changing and so on. I am just curious to know if there are protocols in place and if they are working. Is there meaningful engagement with the HSE?
Ms Magdalen Rogers:
The momentum we have seen within the past year in terms of regular meetings of the national steering group for the implementation of the neurorehabilitation strategy has been very positive. That group is finally meeting regularly, about every two months, at this point. As I said earlier to Deputy Shortall, in the period 2019 to 2021, including before Covid, that group was not meeting regularly, so that is positive. However, I would emphasise that a huge catch-up is needed. The fact that the national strategy, which was published in 2011, has not been implemented cannot be attributed to Covid-19.
Martin Conway (Fine Gael)
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Are there challenges in terms of where the actual responsibility for this lies, whether it is with primary care or disability? Where does Ms Rogers think responsibility should rest in terms of funding and all of that?
Ms Magdalen Rogers:
The neurorehabilitation strategy has lain with disability services since it was published. Implementation has sat with the disability services. It is a bit of a moot point as to who is responsible so long as there is progress. It is not necessarily where it should belong within the health service. It is the energy, momentum, commitment and the accountability.
Martin Conway (Fine Gael)
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I get that, but does Ms Rogers think the fact that where the strategy belongs has not got this type of clarity causes frustrations in terms of progress?
Ms Magdalen Rogers:
I do not think it is necessarily where it belongs in the HSE that has caused the issue. I think it is the lack of accountability and timeframes. Again, regarding the 2019 to 2021 framework, we do not have a sense whether that is just being rolled out now for the next three years or whether it is just unfortunate that the implementation did not happen over those three years. We do not get a sense of where the implementation plan is now in terms of a timeframe. The accountability would be key and certainly if the head of the HSE is coming to the committee next week, that would be a key question for him: what the new timeframe for the implementation of the strategy is.
Martin Conway (Fine Gael)
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We will certainly put that to him next week and I thank Ms Rogers for her time.
Neasa Hourigan (Dublin Central, Green Party)
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I thank the witnesses. I will reiterate what a lot of people have said, which is it is rare enough to come across something that we know how it works and how it should work so let us just do it. I will do a rare thing which I do not usually do at committee meetings which is talk about my own area. I would like to unpack a little because it is useful to start with a community health organisation, CHO, and see what the issues on the ground are. If we could start with what it would take in terms of CHO 9. CHO 9 is a larger CHO than many of them. That is Dublin. It is a larger population. The witnesses said that most CHOs are 300,000 to 400,000 but CHO 9 is 600,000 people. Some of the opening statement is quite arresting in that much of the population does not have access to neurorehabilitation. Will the witnesses talk about what they expect to see in rolling the strategy out in a larger area like CHO 9? What do they envisage the challenges to be in terms of staffing it? What would they expect the HSE to raise as concerns? Also, I spoke to somebody recently about rolling out GP services in deprived areas and how one of the things that is a barrier and presents a challenge is that there are higher clinical needs. There is a higher requirement for services because when people live in deprived situations or lower income households, they tend to have poorer outcomes in terms of health. Will the witnesses unpack a little about the challenges of CHO 9 for me and about what the failure to roll out the implementation would mean on the ground?
Ms Magdalen Rogers:
I will ask Professor Pender to answer because he is uniquely placed to speak about CHO 9. One of my comments would be the specialist neurology services are based in the larger urban centres, so patients would have an expectation that they would have a better service or certainly a better resourced service, including in their communities in these areas. However, in CHO 9 we see patients coming to us from that area saying they would be better off if they lived in Limerick or Donegal, and you never hear that. Regarding community neurorehabilitation teams, even though these people are accessing really good specialist services in the acute neuroscience centres within the Dublin area, it does not mean they have the community services available in other parts of the country. I will hand over to Professor Pender.
Dr. Niall Pender:
It is exactly that. For example, in Beaumont we cover a huge catchment area and, as a neuropsychologist, we are still holding a lot of people in my department who have nowhere to go after their injury and who suffer from cognitive difficulties, emotional difficulties, behavioural problems and relationship difficulties. There is nowhere to go. There is a huge challenge and Deputy Hourigan is absolutely right. CHO 9 covers a huge area of people and a wide range of people. We have enormous numbers of people with potential brain injuries of different types. We have a higher catchment area with higher rates of neurodegenerative disease, higher rates of injuries and different types of brain injuries. There is enormous complexity in CHO 9 because of the population we have which is a very fast-growing one.
There will be challenges no doubt, but we have good acute services and some nurses in place. We have acquired brain injury, ABI, teams and we have voluntary organisations, so we have a good infrastructure but we just need the team to be set up and we need that place for people to be referred to. People are still being referred into a void at the moment. One of the things patients themselves always experience is that they are hidden. There is very little voice for people with neurological problems because they do not know how to approach it, who to go to or where to go. GPs in the area may not know where to send people. Some people might be lucky and get access to physiotherapy or speech therapy somewhere. It really is a lottery and some people say they would be better off to be in other parts of the country because there is nowhere else for them to go.
Primary care services are trying to hold people together and to provide the best service but we need specialist units and people who know what they are doing. They are much efficient, patients get a much better service and the outcomes are much better. CHO 9 will be a challenge but there are good services there. We have the infrastructure and the broad scaffolding and the bones of it but we need better services.
Dr. Susan Coote:
In terms of recruitment, the health service is experiencing challenges in recruitment but there have been so few developments in neurology that many therapists are working at basic grade level who are ready to step into these senior specialist posts if we had them. That is probably unique to neurology because of the lack of development in the past while. In my own sub-speciality there are many really excellent therapists who are still working at basic grade or entry grade because the posts do not exist. This is probably unique in that when these posts are created, there are a huge number of therapists ready to step up because of the lack of investment in the allied health professionals for neurology in recent years.
Neasa Hourigan (Dublin Central, Green Party)
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That is very interesting because often we are seeing a long lead-in time just to get the staff ready but Dr. Coote is saying there are a pool of people rearing to go and would like to be staff. It seems incredible to me that someone could live in Beaumont or Marino and his or her first point of care or acute setting is there and then he or she has nothing.
Professor Pender said people are hidden and talked about GPs referring people. Will he elaborate on that? I presume there is reticence from his team to release people to nowhere and with no supports. Does the lack of neurorehabilitation teams in the community now put a direct stress on the acute services in terms of staff time and administration? Will Professor Pender comment on that?
Dr. Niall Pender:
It absolutely does because we have been working with the people we are working with for quite some time. They have serious injuries, difficulties and challenges. We cannot let them go and do not want to let them go into nothing. At the moment we hope to try to link in with the voluntary organisations such as Acquired Brain Injury, ABI, Ireland, Headway Ireland and those organisations to try to get support locally. They are hugely under-resourced and have enormous waiting lists as well. Even within the hospital service a lot of people do not even make it. They are discharged and are out in the community and struggling. We might pick them up in a six-month follow-up clinic or in a years' time and they have been trying to manage on their own as best they can. They have perhaps gone back to work, it has fallen apart and they have been let go or they have not gone back to work at all. Maybe they have family members who have had to give up work to try to care for them. There is a whole socioeconomic structure. A brain injury is often known as a family affair. It has a knock-on effect on huge numbers of people. The hospitals, the acute services, are doing their best to hold on to people and try to provide some supports, and while people are coming back to outpatient clinics, those outpatient are overwhelmed. We have seen it now with Covid-19 clinics coming in.
Neasa Hourigan (Dublin Central, Green Party)
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It is not the right pathway.
Dr. Niall Pender:
It is not the right pathway. There are very experienced, skilled people who are trying their best but the people we are talking about need to be seen in the community where they belong and get access to highly specialised multidisciplinary teams who know what they are doing, who have good goals, systems and structures, and who are efficient at doing it.
Ms Magdalen Rogers:
The Covid-19 pandemic has increased the urgency of this because we are aware that people missed out on neurorehabilitation. They had to be discharged and they were not able to be admitted to neurorehabilitation facilities. There is a burden in the community of people who missed out on neurorehabilitation.
Neasa Hourigan (Dublin Central, Green Party)
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There is a backlog, but I can imagine it is being exacerbated by the delays that happened during the pandemic.
Ms Magdalen Rogers:
There is a backlog and there is also a missed opportunity for those individuals. There is a critical window in which to provide neurorehabilitation. These people are presenting to services in a worse condition than they should be and needing extra rehabilitation to make up for what they lost.
Dr. Susan Coote:
There are people who have deteriorated quite significantly because of the lack of leaving their house. They have become very inactive and sedentary and we are starting to see the consequences of that. Maintaining physical activity is really important. If people sit on the couch all day, their balance will get worse, they will get weaker and they will be more at risk of falls. It is a vicious circle. We have new people being discharged from hospital, the people who deteriorated during the Covid pandemic, people with neurological consequences of Covid and people who missed out on care during the Covid period. The level of need is acute and much greater than it was three or four years ago.
Neasa Hourigan (Dublin Central, Green Party)
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Are people also experiencing delays in accessing neuropsychology services? I do not want to link any such delay specifically to the Covid crisis but there probably is an issue in that regard. Will the witnesses comment on access to neuropsychology services for people with neurological conditions?
Dr. Niall Pender:
Neuropsychologists are specialists. They include clinical psychologists and counselling psychologists and they are all highly trained. There are not many of us and not many are funded. Therefore, access is quite poor around the country. Many of the acute hospitals in Dublin now have at least one neurological psychologist, but that is well below the internationally recommended levels for access. Neuropsychologists are involved in the identification and treatment of the cognitive, behavioural and emotional consequences of brain injuries. Their work includes identifying people with pre-existing conditions, such as epilepsy, who may go on to have surgery. They also work post-operatively with people who have had a stroke or head injury. There are people being discharged into the community with significant cognitive problems to do with memory, attention and language, but they do not even realise themselves what those problems are. They are struggling even to make sense of these weird and unusual symptoms and there is nobody there to tell them what they are. There is a huge lack of provision, depending on where people are in the country. In some places, they might get access. In many other places, there is no access at all.
Neasa Hourigan (Dublin Central, Green Party)
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I may be wrong in thinking some of the issues there might be lifestyle based and could be better treated in a less specific way. If people are waiting six months for a neuropsychology service, perhaps the follow-up service we spoke about earlier would be better suited to them.
Reference was made to prisoners and other people in carceral environments. If CHO 9 were further along in its inception, we could be having a very interesting conversation. There is a prison population in my constituency that would benefit massively from these kinds of services. I wish we could have that conversation but I do not think we are anywhere close to being able to do so.
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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I thank the witnesses for their statements. How many people in Ireland at present have a neurological condition?
Ms Magdalen Rogers:
The estimate is that more than 800,000 people are living with a neurological condition. It seems a huge number but we must consider the vast range of conditions, including everything from migraine to epilepsy, multiple sclerosis, acquired brain injury, stroke and Alzheimer's disease.
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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That number equates to one in seven people in the State, which is a lot.
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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What is the commonest neurological condition among that cohort of 800,000?
Dr. Niall Pender:
We tend to see people with acquired brain injuries, strokes, head injuries, as well as those with the more common neurodegenerative diseases, of whom the highest number have multiple sclerosis. Some conditions have a greater impact than others. We see people with migraine in huge numbers, but there is a different impact there than is the case with acquired brain injury and stroke. Head injury, stroke and MS probably make up the largest number of cases we see.
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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How many people in the State have multiple sclerosis?
Dr. Susan Coote:
The best estimate is approximately 9,000. However, the number listed as having multiple sclerosis under the long-term illness scheme is close to 10,000, which is a better estimate. People with multiple sclerosis are diagnosed in their early 20s and live with the condition for a long time. That leads to a multiplication of care needs.
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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The witnesses referred to multifaceted treatment. What are the common treatments for neurological conditions?
Dr. Susan Coote:
People with multiple sclerosis consistently tell us that access to physiotherapy is their greatest need, followed by access to occupational therapy, vocational rehabilitation, psychology and neuropsychology. These are the services they need to do the things they want to do and live the lives of their choosing. That is where the multidisciplinary teams come in. Access to medications is another issue but it is really about rehabilitation access. People keep coming back to us stating it as their greatest unmet need.
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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MS Ireland had a campaign calling for a national physiotherapy service. What difference would it make if that service were implemented tomorrow?
Dr. Susan Coote:
This is an example of how the charities are on the pathway. It goes from acute care to the community neurorehabilitation teams and then on to the charity sector. We had a successful Sláintecare integration of fund project that enables people with multiple sclerosis and other neurological conditions to access a physiotherapist-led programme. The outcomes are very significant. We see the changes we would expect in terms of improvements in strength and balance. We see a reduction in the number of fallers and the number of falls. The cost savings from that are very important. Given one fall costs up to €22,000, if we can prevent four of them, we already have paid for one of the physiotherapist posts. We have also seen that people who engage with MS Ireland's services, including people with multiple sclerosis, Parkinson's disease, ataxia and various other neurological conditions, use the acute healthcare services less. They are less likely to go to an emergency department, less likely to have an inpatient bed day and less likely to need their consultant.
I will give an example that shows the pulling together of the community neurorehabilitation teams and nurses. A woman in her early 40s experienced a deterioration of her multiple sclerosis and needed a specific medication for spasticity adjusted. Our specialist multiple sclerosis physiotherapist in CHO 2, working with the clinical nurse specialist in the hospital, made recommendations to the consultant. That was actioned quickly and, within three or four days, the patient had a new drug prescription without needing to go back into the acute system and get a consultant appointment. The benefits for her are life changing in terms of her ability to do more things for herself without needing care. That is how things should tie together.
Regarding MS Ireland's physiotherapy campaign, we are looking to roll out the Sláintecare integration of fund project nationally, as referred to by Senator Conway. We are finding challenges in expanding it beyond CHO 3, which is where the pilot is located. We would like everybody to have access to it because the outcomes are very clear as to the benefit both to the people with neurological conditions and to the health services in reducing the need for hospital care.
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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It was indicated earlier that 15% of neurological patients in Ireland have access to teams that provide vital care to support their recovery. That means 85% are not getting the intervention they need, which is a huge number.
Dr. Susan Coote:
We are way behind international best practice. Belgium, for example,with a population of 10 million, has three rehabilitation hospitals that specialise in multiple sclerosis, independent of their rehabilitation hospitals for everything else. We are very far behind internationally in rehabilitation care. The World Health Organization's 2030 rehabilitation strategy says it is a basic right to have access to both inpatient and community neurorehabilitation. We only have one rehabilitation hospital. We do not have the managed care networks as set out in the rehabilitation strategy. There are different pieces in the puzzle and we are very far behind. There are world neurological rehabilitation conferences at which people present the data time after time on their successes. We are one of the countries that is considered way down the table on this.
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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Why is that? The resources seem to be there. I realise there are huge recruitment and retention issues in the health service, not only in Ireland but across the world.
Why is Ireland lagging behind the benchmark of Belgium, for example?
Ms Magdalen Rogers:
A commitment is needed to implement the neurorehabilitation strategy. A genuine commitment needs to be made on behalf of the patients. It is not a recruitment issue concerning the community neurorehabilitation teams because we have not seen recruitment start for the teams around the country. Even for those funded since 2020, we have not seen recruitment start. Therefore, we are really talking about a lack of momentum and commitment to implementing the strategy to meet the needs of the patients.
Dr. Niall Pender:
We mentioned hidden patients before. Many of these patients are just not seen and their needs are not recognised as treatable in some way. Where other illnesses are concerned, we have seen amazing developments in oncology and cancer-care services in recent years across the country, but we have not seen anything like that for brain injuries. Imagine going to a hospital with a diagnosis of cancer and being sent home on your own to try to find your own treatment or radiation oncology centre. It is unthinkable nowadays, yet we are at that point with people with brain injury. They are being sent home and nobody is seeing them or recognising their needs. That is part of the problem.
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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My final question is on the medical cannabis access programme. The programme was instigated four years ago and about 47 people have got a prescription under it to date. I understand the vast majority of the prescriptions are related to spasticity owing to multiple sclerosis. Sativex is now being reimbursed, which is good because people trying to get it heretofore had to go to the North, where it was quite expensive. In Denmark, for example, the medical cannabis access programme covers many neurological conditions for which cannabis can be very beneficial. Our access programme is very restrictive. There is an ongoing review that I hope will result in the expansion of the programme to cover other conditions, particularly those associated with chronic pain and neurological conditions. I would like the delegates' thoughts on that.
Dr. Susan Coote:
I have a briefing note on that in front of me. We are delighted to see that Sativex has been recommended for reimbursement through a managed-access programme. It is a start, as the Deputy implied, and it could be rolled out further. The primary purpose of the drug is to treat moderate to severe spasticity, or stiffness in the limbs, caused by multiple sclerosis. We are delighted to see the drug included. It is the start of greater access to the drug. There is very good evidence that it is beneficial in treating the symptoms of a range of conditions.
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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I understand the review is happening and that recommendations will be made to the Department of Health very soon. I hope people will be able to gain access to the drug. Some people with neurological conditions have to go to the black market, some have to go abroad, and, worse still, some have to go without. It is not acceptable that people are denied a drug with medical benefits. They should not have to go to the black market for it. I hope that, after the review, people will be able to gain access to it legally rather than illegally.
Ms Magdalen Rogers:
It also relates to the broader resourcing of the services because people need to be seen if the treatments they need are to be identified. We are still seeing really long waiting lists for neurology services. More than 23,000 people are still on neurology those lists. People are waiting longer between appointments and struggling to gain access to a specialist nurse. Even getting to the point of diagnosis and seeing a health professional often enough to be in a position to be prescribed the medication the Deputy mentioned is an issue. It is a symptom of the under-resourcing of neurology services as a whole.
Colm Burke (Cork North Central, Fine Gael)
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I thank the delegates for their presentation. I apologise for not being here for it but I was in the Dáil dealing with a nursing home issue with the Minister. I thank the delegates for the work they are doing in this area. They referred to the appointment of a large number of specialist nurses over the coming years. I am wondering whether they are happy that we have training programmes in place to deal with this. Many changes are occurring in the health service, as they know, so I am wondering whether we have a programme for training a sufficient number of nurses in this area.
Ms Magdalen Rogers:
That is a really good and critical point to raise. The Irish Neurology Nursing Forum, an association of specialist nurses in neurology formed last October, is working together with those behind the national clinical programme for neurology towards an education pathway for nurses entering or currently in neurology nursing to develop, in collaboration with third level institutions, continuous professional development for September 2023 and plans for a postgraduate level 9 programme in neurology, with a start date in September 2024. That would fulfil the criteria for clinical nurse specialist registration with the Nursing and Midwifery Board of Ireland. Training was a critical part of the resourcing of specialist neurology nursing. It was not enough to create the posts; we had to ensure training was developed in tandem.
Colm Burke (Cork North Central, Fine Gael)
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I understand the budget provides for an additional 23 staff. What has happened since the budget announcement as regards their appointment?
Ms Magdalen Rogers:
We understand the letters of appointment went to the hospitals this week. The letters could go only when it was in black and white in the service plan that the posts were available. The letters went to the hospitals this week to notify them that they could start recruitment for the posts, but as the Deputy's colleague said this morning, it will now be a challenge to recruit the nurses and put them in posts this year.
Colm Burke (Cork North Central, Fine Gael)
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Ms Rogers has a very good knowledge of what is happening in this area. Is she satisfied that there is a sufficient number of people with the qualifications to apply for the posts?
Ms Magdalen Rogers:
Dr. Coote has spoken from the perspective of an allied health professional. In respect of nursing, we would certainly echo her comments. Given that there has been such a dearth, there has been a build-up of people with a specialist interest in neurology who were not able to move into posts. We certainly feel there is a pool of people.
Colm Burke (Cork North Central, Fine Gael)
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Another point concerns the presentations that are made. Everyone considers the cost of hiring someone but no one really considers the savings. Those behind the multiple sclerosis programme launched in the past few months say their net cost is around €880,000 but that the total savings amount to about €19 million. Do we do enough to circulate that information? We focus very much on the cost of healthcare but seem to lack the drive to focus on the savings. Savings are achieved by employing the staff.
Colm Burke (Cork North Central, Fine Gael)
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Yes.
Colm Burke (Cork North Central, Fine Gael)
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Reference was made earlier to someone having a fall and the sheer cost of dealing with an injury, be it to a hip or another part.
Dr. Susan Coote:
We know the cost of progressive disability due to multiple sclerosis is approximately €19 million per year. Let me put that into context. The evidence from MS Ireland's programmes is that we can maintain people's status and that, with our more specialist programmes, including a specialist physiotherapy programme, we can improve their status. In respect of the MS Ireland programme, we have a call-out for a senior physiotherapist in each community health organisation, to be employed by us to deliver our evidence-based programmes. The cost nationally would be €880,000, which is a very small proportion of the €19 million cost associated with progressive multiple sclerosis disability. The health economics studies are available, and Dr. Pender referred to them earlier. International studies show that rehabilitation can not only maintain one's status but also improve it and therefore result in savings. We have demonstrated very real savings through our Sláintecare integration fund project around falls and the lack of inpatient bed days, but there are also rehabilitation gains owing to independence and there being less need for care. The data available internationally that show these programmes can result in cost savings for the State.
Colm Burke (Cork North Central, Fine Gael)
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On rehabilitation, I am not sure whether the delegates are aware that two floors of the new hospital built in Mallow have 40 rooms whose focus is rehabilitation.
I am not sure if there has been any discussion with the NAI about that.
Ms Magdalen Rogers:
There is a critical need for an inpatient rehabilitation service in the south. It goes back to our concern at the delays in implementing the neurorehabilitation strategy and we have not seen that momentum on putting an inpatient service in place. We are talking about the community rehabilitation teams but it is all part of the same strategy, including putting those inpatient beds in place. If there are plans to develop services in the south then that is needed and it is welcome.
Colm Burke (Cork North Central, Fine Gael)
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Is the NAI not involved in that? Has it not been advised of what is-----
Colm Burke (Cork North Central, Fine Gael)
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I refer to the five-year programme for neurorehabilitation in the community. Is there a sufficient commitment by the HSE and the Department to implement it and deliver on it or is there too much pressure? There is huge pressure on our hospital system and then on the other hand - and I raised this in the Dáil with the Minister this morning - I am trying to get people out of hospital at the moment and it is so difficult. My problem is not with getting them into hospital but with getting them out.
Colm Burke (Cork North Central, Fine Gael)
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I had one person with Huntington's disease and he was in the hospital for at least four months longer than he needed to be, and likewise with someone with other medical issues. It is so difficult to get them out because there is no back-up support in the community then.
Ms Magdalen Rogers:
We are using the figures from the neurorehabilitation implementation framework that show that if you put the nine teams in place you would save 42,000 bed days and get people out of hospitals. It is exactly the type of intervention the Deputy is talking about. It is putting services into the community that get people out hospital.
Colm Burke (Cork North Central, Fine Gael)
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On services in the community, if you take someone who has transferred to a nursing home, for instance, do we have that connectivity with the nursing homes as regards rehabilitation as well? One of the concerns I have relates to the likes of that person who has Huntington's disease. He has gone to a nursing home but I am not sure whether there are sufficient structures in place to get him the support he needs. Will he have to come back into the hospital again to get the kind of care he needs?
Dr. Niall Pender:
Huntington's disease is a good example because it is such a multidisciplinary disease. I work closely with people with Huntington's disease and, as the Deputy knows, it is an inherited disease so it is a family event. You might have two, three or four members of the same family with it and they might have psychiatric problems, dementia and significant physical movement problems. It is a condition that needs multidisciplinary team management and there is a challenge in that. We have patients in acute hospitals for long periods of time because there is nowhere for them to go. Many of the nursing homes do not feel skilled or able to cope with the demands because so many of the patients will also have significant psychiatric problems and behavioural difficulties and there is not the same support or link-----
Colm Burke (Cork North Central, Fine Gael)
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When we are talking about neurorehabilitation, is there not a need to build on that link with our community facilities?
Dr. Susan Coote:
The Ombudsman's Wasted Lives report highlights the number of people under 65 who are unnecessarily placed in nursing homes because of this. That is a campaign that MS Ireland is leading because there are a number of people with multiple sclerosis in this scenario. There is an implementation stakeholder reference group that is looking specifically at this issue but this is another nice example of how a community neurorehabilitation team or how more regional rehabilitation centres, which are part of the rehabilitation model of care, would alleviate this. That would mean that people have rehabilitation to enable them to go home rather than being unnecessarily and inappropriately placed in a nursing home without access to the specialist services and specialist multidisciplinary teams they need.
Colm Burke (Cork North Central, Fine Gael)
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I mention the community approach and one of the problems I am finding with it is that it is a Monday to Friday approach. There is a need to also develop a service that is available at weekends. I am not talking about a full service but some service should be available at weekends because if somebody has a difficulty during a weekend the next step is to go straight into the accident and emergency department and to then have a period of time detained in hospital or to have to stay in a hospital. Whereas if someone was working on the ground, that might not have to happen.
Dr. Susan Coote:
I also want to acknowledge that there are an awful lot of young people with neurological disabilities who are working and they need programmes after they come home from work. The charities are filling that need in programmes to manage fatigue and improve physiotherapy programmes. As I said, these are young people with families going to work who need access to these multidisciplinary teams after hours, and as the Deputy said, potentially at weekends.
Mark Ward (Dublin Mid West, Sinn Fein)
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I thank the Leas-Chathaoirleach for allowing me in. I am not a member of this committee but I have a personal interest in the topic we are talking about and I have spoken about it a couple of times, including every time the NAI has been in. It is good to see Ms Rogers and the rest of the witnesses.
As the witnesses know, 16 years ago I was diagnosed with MS as a 19-year-old and I am one of 10,000 people who have this condition in Ireland. I get my treatment through the public health system and the treatment I got at the start was difficult to navigate for me as a young man. I have seen vast improvements in the public health system recently and I have to put that on the record. I had a relapse last year and I was put on a new treatment, which was quite intense, for a short period of time, and I have to do another round of it again this year. The support and help I got from the MS nurses and neurologists in Tallaght University Hospital was second to none. I have to put that on the record as well because I am often quite critical when there are not good services, and rightly so, but in my lived experience I have seen improvements in the service.
We are talking about neurorehabilitation but as the witnesses know, MS is different for everybody. The best intervention I got at the early stage was access to psychology because that allowed me to accept that I had the condition. As a young man of 32, I could not accept that I had this lifelong condition and all I could see at the time was a dark future. That access I got - and I see Alison here from MS Ireland - was from MS Ireland. The access I got to psychology and counselling at that stage enabled me to start making changes, to accept the condition I had and to see things in a brighter way because at the time I was in a really dark space.
When other people were talking I was thinking how with MS and other neurological conditions, you do not always see them. You have this condition but people do not generally see it. If I had €1 for every time someone said to me you do not look like you have MS I would be rich. I do not know what someone should look like when they have MS but if I had €1 for every time someone said that to me I would be worth a fortune. People do not see, for example, what I had to do this morning just to get into work and what I have to do during the day to maintain the quality of life I have. I have a really good quality of life and I always mention that because you have to give some hope to people who are newly diagnosed. There is an awful lot of hope out there. Just because you cannot see it does not mean you do not have it and I have heard that loads of times.
I apologise that I missed the start of the meeting because I was with someone else so if I ask the same questions again please feel free to elaborate on them or answer them in a different way if needs be. I will start off with a parochial question. I put in a lot of parliamentary questions in the last while to the HSE. I got a reply saying that a location has been agreed for a community neurorehabilitation team within community healthcare organisation, CHO 6 and CHO 7. CHO 7 is the area I represent. The reply also stated that negotiations are ongoing to agree a governance model in order to be able to proceed with this recruitment. I want to ask a few questions on that. Has the NAI had any reassurances that these deadlines will be adhered to and that a decision on the governance models for the community neurorehabilitation teams will be adopted as soon as possible? Does the NAI know the reasons the governance models for teams that are successfully up and running in CHOs 1 and 3 cannot be rolled out in the other CHOs, including in CHOs 6 and 7?
Ms Magdalen Rogers:
I thank the Deputy for raising the situation in CHOs 6 and 7. The funding has been available for those teams since November 2020. Serious questions need to be asked as to why recruitment has not even started for those teams at this stage.
We hope that those timelines are adhered to and that those teams will be up and running by the end of the year. It would be critical to have them up and running by that time in view of the delays that have been experienced. A patient advocate recently told me the one thing that people with neurological conditions and neurorehabilitative needs do not have is time. We cannot have a situation where there are queries about a governance model; these teams need to be put in place on the ground. There needs to be equitable access to these teams nationwide.
Mark Ward (Dublin Mid West, Sinn Fein)
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I find it staggering that the recruitment process has not yet started. My second question is on governance models. Why are there separate governance models in different CHO areas? If a governance model is already adopted in CHO 1 and CHO 3, why try to reinvent the wheel? Is there any reason that cannot be put into CHO 6 and CHO 7?
Ms Magdalen Rogers:
The committee has a unique opportunity next week with the appearance of the CEO of the HSE to ask exactly that question. What is the issue with the governance model? Why can the same governance model not be rolled out across the teams? He needs to account for the delay there.
Mark Ward (Dublin Mid West, Sinn Fein)
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Ms Rogers's understanding is that there should be no reason why the governance model already rolled out in other CHO areas cannot be adopted and put in place in other CHO areas.
Mark Ward (Dublin Mid West, Sinn Fein)
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This goes beyond neurorehabilitation services and applies to most models of care. I deal a fair bit with mental health issues. The first thing the model of care for child and adolescent mental health services refers to is the uniformity of care across all CHO areas. I do not understand why it should be different for neurorehabilitation services. I hope to be able to attend next week's meeting of this committee and raise that directly with the representatives of the HSE. These are probably questions that should be for the HSE, but I will ask the witnesses present and their responses might inform me when I ask the questions again next week.
I refer to the delays in CHO 6 and CHO 7. I know recruitment has been mentioned but what can be done to avoid these delays? The witnesses provided a map outlining the coverage of rehabilitation teams. The red marks indicate where there are no teams. What can we do to avoid to delays? What can we learn from the delays in CHO 6 and CHO 7? What can we do for the other CHO areas that are identified as red on this map?
Ms Magdalen Rogers:
The map is stark, but it is realistic. It indicates where the teams are and where they are not. We need greater urgency on this. We have reiterated that neurorehabilitation is in crisis. We have people who missed out on neurorehabilitation during the Covid pandemic. Sufferers of long Covid need neurorehabilitation. We need the timely establishment of these teams nationwide. We need to learn from areas where teams are up and running and apply that to the other CHO areas. There needs to be urgency on this. One of the committee members highlighted a timeframe of 2026 for the establishment of all the teams, which we had not heard. That seems very long given the lack of progress during the 2019 to 2023 implementation framework relating to the neurorehabilitation strategy. Urgency is key at this stage.
Mark Ward (Dublin Mid West, Sinn Fein)
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The statement indicates that for every euro spent on teams, the health service saves €11. If that euro is spent, when would the health service see that €11 return come in? I suspect the way politicians are if they do not see the quick fix during their term in government, they are less likely to agree. We need to start thinking outside the box and plan for that. When would we see that return on investment?
Dr. Susan Coote:
The typical multidisciplinary intervention would last approximately 12 weeks. After those 12 weeks of that multidisciplinary specialist rehabilitation involving a physiotherapist, occupational therapist and neuropsychologist all working together to meet the needs of the person, we would start to see significant improvements in independence, significant reductions in the need for care, significant improvements in their ability to think, plan and go back to work, but also to be able to dress themselves independently and move around more independently. The evidence is that programmes of approximately 12 weeks' duration provide significant improvements. Over the lifetime of a government, that is a significant number of people benefiting from these interventions.
As we keep saying, this is not once-off. This is about ongoing care needs. This is for people, like the Deputy, living with multiple sclerosis for the rest of their lives. They will need different things at different times and will need to be able to come back and access services. It is not a matter of coming in at a single point of time and it is done. This is about a system that allows people to come back when they need to access different supports, to manage different symptoms at different times. It is very much ongoing. Rehabilitation works. We have international evidence that it works. We have the international evidence that it reduces other healthcare utilisation. We talked about falls and preventing disability. There would definitely be significant savings in the very short term.
Mark Ward (Dublin Mid West, Sinn Fein)
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I know Dr. Coote talked about it being ongoing, but after a 12-week programme we should see that return on investment.
Mark Ward (Dublin Mid West, Sinn Fein)
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I was not here for the rest of the meeting and I hope the Chair will allow this. Are there any other points the witnesses would like to make that they have not had the opportunity to make?
Ms Magdalen Rogers:
I reiterate our request for funding to be allocated in this year's budget to enable the establishment of teams in CHO 5, CHO 8 and CHO 9 where there has been no allocation to date. The HSE should take priority action to establish teams without delay in CHOs where funding has been made available - CHO 6 and CHO 7 as well as the newly funded CHO 4 and CHO 2.
I ask for the indulgence of the committee. I know the committee is very familiar with the work of Professor Orla Hardiman, working with those impacted by neurological conditions. Professor Hardiman will be stepping down as clinical lead for neurology this summer having been in the role since 2019. Having worked closely with her in the Neurological Alliance of Ireland, I can attest to the fact that hat she brought the same passion, dedication and expertise to this role as she has done in all other aspects of her work. She has worked tirelessly to carry out a transformative programme of innovation and development within neurology services. As Deputy Ward said, he has seen the results with his own care. Throughout her work she has recognised and championed the role of patient organisations as partners in healthcare delivery. On behalf of the Neurological Alliance of Ireland, I thank her for her contribution to neurology services over the years.
Mark Ward (Dublin Mid West, Sinn Fein)
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I also add my thanks to that.
Colm Burke (Cork North Central, Fine Gael)
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Regarding funding and the difficulty in persuading the HSE to come on board, is this being put under the disability area as opposed to community care funding? Would there be a difference if a new programme of enhanced community care was developed rather than it being put under the disability area? What is the thinking on that?
Dr. Susan Coote:
It is a very good question. Neurological conditions require integrated care and the silos in the HSE do not necessarily reflect the needs of the people living with those conditions. I would have concerns that if responsibility for disability is moved from the Department of Health at Government level, it will then be very difficult to see where this health-related intervention will sit. I would hate to see that significantly impacting on the implementation of this. As Ms Rogers has said on a number of occasions, this needs to be implemented now given that we are so far behind international best practice. As a number of speakers have said, implementing this is a no-brainer. I would hate to think that moving responsibility for disability out of the Department of Health would cause barriers for this because it is a health intervention. It is a very good question. We cannot get involved in moving it around the HSE. It sits in the disability area; it needs to be implemented.
Colm Burke (Cork North Central, Fine Gael)
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We are really talking about enhanced community care. I am wondering about it being compartmentalised, meaning there is a certain amount of funding for that section and a certain amount of funding for the other.
Can that whole process and the thinking around it be improved?
Dr. Susan Coote:
The key point is the needs of this population are not met by the current enhanced community care programmes. We need to be clear about this. The integrated care programme for older persons and chronic disease programmes do not meet the needs of this population. They need a separate intervention. The teams have different specialties from the teams that manage the other two enhanced community care programmes.
Ms Magdalen Rogers:
It is important to reiterate how many other initiatives are dependent on having effective rehabilitation services. The national trauma programme is critically dependent on proper neurorehabilitation services being in place. We cannot have world-class trauma care like that which is being put in place without having continuing neurorehabilitation. Wherever it sits in the HSE, we need a commitment to implementation because it impacts stroke care, trauma care and many other areas of the health services.
Colm Burke (Cork North Central, Fine Gael)
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The Neurological Alliance of Ireland comprises 30 organisations and brings many people together, whereas in the HSE each individual area very much operates separately, which causes its own problems. Is there a lesson to be learned from the fact that the Neurological Alliance of Ireland can get everyone to work together for a better service for everyone in the community with a particular medical condition and are in need of that support?
Ms Magdalen Rogers:
The 30-plus voluntary organisations that make up the Neurological Alliance of Ireland have a unique insight into the overall needs of the person from day one through their lifetime of living with a neurological condition. It should not matter where you live in the country or what area of the HSE funds the service, it should be available equally to all people no matter where they live or their age. We accept that the silos within the HSE are a challenge but should not prevent the implementation of this strategy.
Annie Hoey (Labour)
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I thank those who are tuning in online. I also thank the witnesses for their presentation. I am interested in one particular area. Often, these things come from personal knowledge. I have several friends who have MS. Falling has been an issue. They are very well looked after, very comfortably in remission, really well managed and a testimony to the incredible work our medicines can do. I also know of friends who have fallen, which cost them a huge amount both physically and emotionally; it is a setback in their life plans. Will the witnesses comment on that? It is something I am particularly interested in. I know the figures are considerably higher for this community in the context of falls, which have an impact and which involved a cost. I hate talking about costs to the Exchequer because life and people's well-being should not be discussed in terms of costs to the Exchequer but it is a cost.
Dr. Susan Coote:
The stark reality is that more than 50% of people with MS will experience a fall within a three-month period. The emotional consequences of falling, being afraid to leave the house, to go out or meet friends for coffee - that fear is the biggest thing. We developed an evidence-based programme which we would like to implement. We have been implementing it in MS Ireland through some of our specialist programmes and have seen great approaches. It is a nice example of where both occupational therapy and physiotherapy principles come together. It is not just about strength and balance, it is about that fear and helping people to plan their days so they are not fatigued and do not put themselves at risk of falling; it is very complicated. We have the evidence for its implementation. At MS Ireland, we have implemented these programmes through grants and fundraised income.
We are calling for statutory funding of our physiotherapy service. These are some of the programmes we deliver. There are fall prevention programmes in the enhanced community care older persons area but they do not suit people with MS. They have very different reasons for falling. You cannot have somebody who is 36 and has MS, who is a young mum of two kids going to school, sitting in the same programme as someone who is 85. It just does not work. We run many group programmes and have had a lot of success in online interventions. A positive side-effect of Covid is that we now have online specialist programmes. For example, today, my participants are working by themselves but next week I will sit down with a group of people with MS, stroke and Parkinson's who are experiencing falls and will work through a very evidence-based programme of education and exercise that will empower them to put in place the strategies they need to not fall and give them the confidence to go out and do the things they do. There have been real positive outcomes. For example, one lady had stopped going to mass because she was so afraid of falling and was then able to walk to mass by herself because her balance had improved but also her confidence. This is the real impact our programmes can make.
We mentioned the cost savings to the State earlier, which is a matter we must talk about. There are both benefits to the person and cost savings to the State, which outweigh the costs of implementing our programme. The key is that our programme is an adjunct to the community neurorehabilitation teams; people are seen in acute care, discharged to community neurorehabilitation teams and then charities provide ongoing support and care to make sure the beneficial gains in community neurorehabilitation teams are maintained and that people do not just stop and go home and then there is another void. It is about ensuring that we are filling that. The charities are best-placed to do that because we are the link between the healthcare system and the community and living well at home, engaging in the community and ensuring people live the lives of their choosing.
Bernard Durkan (Kildare North, Fine Gael)
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I congratulate the witnesses on their presentation. It was well-focused, well-directed and at an opportune time. Timing is all-important in all this business. In particular, I congratulate the witnesses on their point about enabling the establishment of teams in CHO 5, CHO 8 and CHO 9. The point was well made. Now is the time to make it; in other words, in good time for Bernard Gloster's meeting with the committee and in anticipation for the budget, preparations for which will take place shortly. It is important that the traumas suffered by people are emphasised and that the general public is made aware of it, as well as those responsible for the budget. There is a pecking order to everything. I hope the witnesses have moved up the pecking order in the context of the services they provide.
Without any further ado, I thank the witnesses for attending, their backup teams and the members who participated on what has turned out to be a very busy day. There are various people in various places at various urgent meetings. Some are attempting to attend two, three and - sometimes the impossible - four meetings at a time.