Neurological Care: Discussion with Neurological Alliance of Ireland

I welcome Ms Magdalen Rogers, development manager from the Neurological Alliance of Ireland, and Dr. Colin Doherty, a consultant neurologist, who are here to speak about improving neurological care.

Before they give their presentations, I advise them that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of the evidence they are to give this committee. If they are directed by the committee to cease giving evidence in relation to a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable.

Ms Rogers's and Dr. Doherty's document has been circulated to members. If they could give us the benefit of a synopsis, there are quite a number of questions that the members will want to put and then we will return to the delegation for its answers.

Ms Magdalen Rogers

The members should have two documents: a longer document that was sent to them last week; and then the opening statement, which I will read out before I pass on to Dr. Doherty.

On behalf of the Neurological Alliance of Ireland, I thank the members for providing us with the opportunity to appear before the committee today.

In July of this year, members of the committee reviewed our latest report "The Future for Neurological Conditions in Ireland: a challenge for health care; an opportunity for change". We were heartened by the support of the committee at that stage, endorsing our call for a national focus on neurological care within our health services. We are now returning to the committee at what is a critical time for more than 700,000 people living with neurological conditions in Ireland. On a positive note, the combined voice of the Neurological Alliance of Ireland and its members, committed individual patient advocates and their families, and stakeholders in neurological care is at last beginning to be heard.

Planned developments in neurological care services have the potential to improve the quality of life of the thousands of individuals and their families affected by neurological conditions. Clinical programmes in stroke, epilepsy and outpatient neurology are working to increase access to quality specialist care throughout the country. I am joined by Dr. Colin Doherty, national clinical lead for epilepsy, who will outline the importance of these programmes to improving the care and quality of life of persons with neurological conditions.

The national neuro-rehabilitation strategy will provide, for the first time, a framework for the development of specialist neuro-rehabilitation services across the country and tackle the Iong-standing critical deficits in this area. However, at a time when significant cuts in health spending are forecast, we have no guarantee that these vital initiatives will be protected.

Cuts are already impacting on the vital services and supports provided by non-statutory organisations that make up the membership of the NAI umbrella. These organisations are at the front line of neurological care here. Historically, they stepped in to develop the specialist services for persons with neurological conditions that the State did not develop. Their network of community based supports helps to keep people out of expensive hospital and nursing home care. Cutting their funding impacts on these vital front line services and represents poor economic sense.

Our submission provides an example of significant savings to hospital care from community based transitional living units for persons with acquired brain injury. Non-statutory organisations also support key essential specialist services through fundraising which otherwise would not be available, including nurse specialists, respite care and physiotherapy services.

Earlier this year, the members of the committee endorsed our call for a national focus on neurological care in our health services. The committee clearly recognises that neurological conditions represent the next greatest challenge for our health system, as identified by the World Health Organisation. In ten years' time, more than 860,000 persons in Ireland will live with neurological conditions. We will have a 50% increase in stroke incidence and the cost of stroke. We face the largest growth in the number of persons with dementia among European countries in the coming decades.

Any further delay in tackling this crisis will be too late. Prioritising neurological care in our health system must start now, and must continue to be a priority. We ask for the support of the committee for the following areas to be protected and prioritised in the HSE service plan for 2011: resources to support the clinical programmes in neurology, stroke and epilepsy services; implementation of the national rehabilitation strategy in 2011; and the need to protect from further cuts in funding the non-statutory organisations which provide vital supports for persons with neurological conditions, demand for the services of which is growing and which already provide significant value for money.

Our detailed submission, circulated to the members before today's presentation, outlines clearly the significant challenges that continue to face persons with neurological conditions with long waiting lists for diagnosis and treatment and lack of ongoing specialist care and rehabilitation. We now have an opportunity to address this situation which cannot be postponed.

On behalf of the organisations numbering more than 30 which make up the NAI, and the persons with neurological conditions and their families which they represent, I strongly urge the committee's support for our proposal today. I now invite Dr. Doherty, national clinical lead for epilepsy, to outline the importance of the clinical programmes in neurology, which is just one of the initiatives I mentioned.

Dr. Colin Doherty

I thank the committee for the opportunity and thank NAI for inviting me here.

I refer to the long document given by the Neurological Alliance of Ireland which outlines the programmes of care in neurology, stroke and epilepsy.

In March 2010, the national office of quality and clinical care of the HSE invited the community of neurologists for the first time ever to get involved in the decision-making on the national delivery of neurological services. Three programmes of care have been outlined: outpatient neurology, stroke and epilepsy.

The overarching aim is to provide better quality of care, improved access to care and improved value of care. The first phase of this project is ongoing but the end is in sight, that is, to get agreement from all of the stakeholders involved in the delivery of care, including neurologists, nurses and therapists and the voluntary organisation, which is why I am here, on a model of care with which we can all live that saves lives, improves disease outcomes, reduces disability and improves access to specialist opinion.

The key requirements to deliver on these proposals are: the appointment of new consultant staff; the reconfiguration of therapy staff and nurses into specialist roles focusing on particular areas; and engaging with primary care in the community and the patient representative organisations to reduce the reliance on inpatient care to get those who urgently need to be in hospital into hospital and to maintain others in the community who can be safely treated there.

I welcome both speakers today. As they will probably be aware, I am a strong supporter. Given the difficulties in this country, the advantages to putting in place a strategy are so obvious that it does not make any sense that the Government is not doing so. One must consider the cost, not only in financial terms but in terms of how these persons contribute to society and of their well-being, and the lack of disability if one is treated properly, quickly and efficiently in the right area. I accept I am speaking to the converted, but it is mind-boggling that the Government does not have those services in place.

We do not have those services to any great extent in the southern region in Cork. That is what started me on this crusade about how we would do this. I meet an increasing number of people every day who have had stroke and are virtually fully recovered. Equally, I meet so many who, had they had the sense, the wherewithal and the proper access, would have recovered too, but they have not. There is considerable disability, and considerable disability when there is no need for it.

Representatives of the Alzheimer Society of Ireland who were before the committee earlier stated that the only real issue that they can deliver is care, whereas we now know that there is a delivery at a certain point in terms of brain injury which can have a good outcome but we still do not seem to be providing it.

Dr. Doherty spoke about putting in place neurospecialists. We are very deficient in that area. Have we improved at all? There are not enough neurosurgeons. There are not enough specialists in neurology. There should be 42 in terms of our population base; the last time I asked, there were 20. Has the position improved?

What is the plan for the southern region? I note that Merlin Park, Galway, and others are in negotiations with the Department. I am still not certain that the southern region is in negotiation. They were not in negotiation when I asked why they had not accepted their place on the board that was looking at this matter, and I wondered why not. Will the new rehabilitation hospital in Dún Laoghaire go ahead? Are the 110 beds still available? Someone has been appointed in CUH in Cork in terms of outreach and assessment rather than having some outside person which would be a terrible waste of time. It should be about a team. Is that team being put together or is a person still assessing people and sending them off when a bed is available? I understand epilepsy is separate, different and requires long-term treatment and management, but for stroke and acquired brain injury we desperately need units in at least two other areas of the country. When will we see them? The cost to the Exchequer of not doing this is a cost we cannot afford.

Deputy Kathleen Lynch has raised many issues. I will not go over them. However, I will follow up on the final point she made on rehabilitation, particularly with regard to acquired brain injury and stroke. Any of us who have experience of trying to get access to the National Rehabilitation Hospital and the difficulties with regard to people with acquired brain injury know we need to consider using that dirty work "reconfiguration" with regard to facilities that are becoming available or have additional capacity to provide services. In the past, they may have focused on rehabilitation for elderly clients but because of how the nursing home scheme is being run there may be the possibility that they could provide additional rehabilitation capacity for other cohorts of the population. It should be considered in the context of what is happening at present; it could ensure that some facilities being threatened with closure, which have expertise and skills built up and staff willing to reskill and retrain, could be utilised for this.

With regard to rare neurological disorders, an issue which arises frequently is a delay in diagnosis. Because of this delay, there is also a delay in treatment of the condition. I am told it can take anything up to ten years for someone to get a definitive diagnosis on some of the rarer neurological conditions. This has a massive impact on the taxpayer because people are wrongly diagnosed and treated until eventually they obtain the type of expertise and treatment they need. Will Dr. Doherty answer these questions on the work being done on co-ordination at present? It is correct that much focus is on the more commonly known diseases such as epilepsy and Alzheimer's disease and on acquired brain injury but a minority affected by other diseases is putting a huge strain on resources. Are formal structures being put in place so we can rule out many of the usual conditions and get a diagnosis for these patients?

The longer submission document contains the case history of Stephen from Sligo, who suffered an acquired brain injury, who went to the transitional living unit in Sligo. It seems amazing that a saving of €2,000 a week was made through his transfer from an Alzheimer's disease ward to the transitional unit and then to the community. This seems an astronomical sum of money for a nursing home facility. I do not know any nursing home facility that charges this. I am sure the supports in the community are also quite significant. I ask the delegation to elaborate on this. If it is not possible to provide a response today the delegation can do so later.

I thank Ms Rogers and Dr. Doherty for their presentations. A number of organisations are represented and I know the different causes of the various illnesses. The question of prevention is one that needs to be addressed all the time in health care. I was interested to hear Ms Rogers state that we can expect 50% more people to suffer from stroke in the future; I would like to have thought we would have at least 50% less. What more, if anything, should we do with regard to prevention, other than providing people with information and ensuring our services are effective and efficient to deal with the issues?

I am very much aware of the excellent work being done by Dr. Doherty on epilepsy. Dublin is fortunate in many ways that it has the scale for sophisticated services to be provided with easy access. This is not the case in rural Ireland. How would Dr. Doherty see the situation improved?

I recognise the question of early diagnosis and I know in some of the larger Dublin hospitals if somebody goes to the accident and emergency unit with a stroke he or she is not seen immediately. A person can slip through the net occasionally and it is important that everybody working at the coalface and those in the political system ensure wherever we can improve efficiency that we do so.

If somebody from my constituency needs to go to Beaumont with an emergency neurological condition, that hospital can insist on a scan prior to admission. Often, this means the patient is sent to Cavan, which is 30 miles further away, before he or she is admitted to Beaumont. We raise these issues with the Minister but an organisation such as the Neurological Alliance of Ireland has an important role to play in identifying how we might improve the efficiency of the service throughout the country.

Ideally, people would be cared for in the community and community services are being developed, perhaps not at the pace we would all like but they are being developed and resources are being transferred to ensure we provide a much higher level of service to the people in the community. On the question of rehabilitation, the National Rehabilitation Centre does good work but it is important that we look at the replacement facility and ensure there are enough places to meet the demands of the people.

I compliment the organisation because this is an issue that is very dear to my heart. It has 34 affiliated bodies, six of those being associate members. To me it is very important to have co-ordination, co-operation and, in some cases, integration of services because no matter who is in Government or who is sitting around this table it is debatable as to how funding will be provided to ensure we maintain the level of services we have, let alone develop them. This is the case not only in Ireland but worldwide. New drugs and technologies are coming on stream and in ten or 15 years, no country in the world, including developed countries, will be able to provide the level and quality of service we expect for the people represented by Ms Rogers. I appreciate that so many groups are working together and opportunities exist to look at how more efficiency can be introduced into the service to improve the quality of care and to get better value for money. I would be glad to hear any recommendations the delegates have in that regard. I would mislead them if I told them that there would be a great deal more money available for services in the short term but things will correct themselves and we will be back to the level we were at previously in a few years' time. I do not envisage extra funding will be available in the short term, therefore, we will have to work together to make do with what is available.

I apologise for not being here earlier. I have a few questions and note that much of this area has been covered, particularly the vital importance of intervening as quickly as possible in the case of stroke victims and in the case of people who have suffered head injuries.

I refer specifically to the third point by Ms Rogers about the non-statutory organisations, the importance of supporting them and their concerns about a cut in their budgets. I was invited to call to Headway in Limerick last Friday morning and I went along and met its clients. There were probably 60 people gathered in a corridor of its premises as its building is not big enough for it to have a proper room where everybody could gather. The people there were fearful about the loss of services. People who have suffered head injuries, be it as a result of a road traffic accident or a stroke, need such services. The people I met in Headway were attending a day service where computer classes are held and where people can avail of a variety of other opportunities, including psychological intervention and counselling. The families of the people concerned are also helped. For those people, this service is a lifeline. They simply could not imagine what it would be like if they did not have the service. Many of them are not individually funded. Some individuals are funded for a programme while others are not and they have to be funded through fund-raising work. People were concerned they might lose these services. Most of the services are funded by the HSE but some of them are funded by FÁS.

I support all of what the delegates said but I particularly want to underline the concerns of the people in these organisations. If they lose some of the services they provide, the people for whom they provide services, whose lives have changed utterly, will have to stay in their own homes and will not have access to any such service or help.

It is stated in the submission that neurological services are provided by a team and not only by a neurologist. I am aware that in some cases neurologists were appointed and they did not have any support staff. The delegates might comment on that.

I dealt with a lady whose son was in a very serious road traffic accident and I learned that because of the moratorium on staff recruitment there was no speech therapy available in the hospital in my constituency. Is the moratorium on staff recruitment a problem in terms of the recruitment of some of the people who work on these teams?

I join colleagues in welcoming Ms Rogers and Dr. Doherty. I strongly endorse the Neurological Alliance of Ireland's appeal for the committee's support for the publication and implementation of the national rehabilitation strategy, also referred to as the national neuro-rehabilitation strategy in the delegates' submission. It is stated in the larger document, circulated prior to the meeting, that the strategy is currently with the HSE and the Department of Health and Children. Can I take it from this that the strategy has been written, that it is at a point fit for publication and, if so, what are the reasons it has not yet been published? We have noted the commitment in this respect in the HSE service plan 2010. The delegates want us to lobby that this will be a point of action for 2011. Will the delegates elaborate on their understanding of the delay behind its publication? Not only they but this committee would have the opportunity to inform itself of its content and, importantly, its intent.

A number of incidents were referred to ranging from a stroke to a road traffic accident. I refer to another area brought to my attention only recently involving a young child. In the first instance, I note the Neurological Alliance of Ireland has recommended that where a referral to a consultant is necessary it should take no more than four weeks. That is one of the delegates' mores. In the case referred to me, the child concerned is now 14 months old. When he was seven weeks old his GP wrote a referral to a consultant neurologist in Crumlin children's hospital. As a public patient, it took a full eight months for that infant to be seen. Developmentally speaking, eight months in a child's first year is of such importance. The child was seen again there on 21 October for the second time by the consultant neurologist and a determination was made that he be referred to Enable Ireland for intervention and support and because he is not showing any growth - any weight gain. He has also been referred to a gastroenterologist. As of today, 2 November, the mother of the child has established that even after all the long delay from when the GP first referred the child when he was seven weeks old, the referral letter is now arising out of the second consultation with the neurologist in Crumlin hospital. The referral letter has still not been typed; the mother was told that the position is that referral letters are awaiting typing in a typing pool and the letter will not be reached for some weeks. This is a another example of where a critical intervention necessary for a young child and his very worried parents is being delayed yet again. It is a terrible situation. I do not for one moment believe that the cull of clerical and administrative staff in the HSE just announced by the Minister, Deputy Harney, will not have an impact in relation to patients' services and care, as this case clearly demonstrates. It certainly will have impact. From the NAI's perspective and from Dr. Doherty's experience as a professional in this area, what can the parents do? What can be done to address the critical need of this young child, who has not been seen practically for the entirety of his first 12 months on this earth? It is a terrible example of serious under-provision within our health services today.

I join members in thanking the delegates for their paper. We will be able to unanimously support the measures they proposed and, I hope, make a case to the Minister for Health and Children and the HSE in that regard.

Deputy O'Hanlon raised a fascinating point in the context of the delegates representing an alliance of organisations, in that it would be our desire that the maximum resources at targeted at the patient and service users. The Deputy made the point in the context that the alliance co-ordinates 34 groups. That in itself is a valuable progression and notwithstanding the merit of the volunteerism and the value of work done by many of these component bodies, with many of which we have engaged individually, are there too many organisations? Do the organisations gobble up resources that should be allocated to provide front line services? It may be a little unfair to ask the delegates that question given that they represent the alliance, but they might refer to that point in their responses. The delegates might respond to the questions raised and if members have supplementary questions we will deal with them later.

Will Ms Rogers lead off?

Ms Magdalen Rogers

If Dr. Doherty is amenable, I will take the questions and points on rehabilitation and the role of non-statutory organisations. Perhaps Dr. Doherty will address any questions on acute neurology services. I will revert to Deputy Kathleen Lynch's points and will pick up on Deputy Ó Caoláin's point on the national rehabilitation strategy. We are unsure of the reason the strategy has not been published. Our understanding is that this is imminent and that it is currently with the new chief executive officer of the HSE because it arrived before he took up his appointment. The view of the Neurological Alliance of Ireland is that for implementation to commence in 2011, the strategy certainly needs to be published as soon as possible. The Neurological Alliance of Ireland co-ordinated a working group to provide input to that strategy and consequently we are anxious to see it being brought to fruition.

As for Deputy Lynch's point, I cannot overemphasise the importance of having this rehabilitation strategy and the clinical lead in place. The implementation plan for the national strategy is to have a number of regional hubs for the provision of neuro-rehabilitation services. For example, the current set-up in the south would be put on a more permanent basis, that is, to have a consultant in neuro-rehabilitation in the southern region, as well as the team he or she needs. The national clinical lead for neuro-rehabilitation services would be responsible for implementing this strategy. On behalf of the neurological organisations, I cannot emphasise enough the importance of having this strategy implemented in 2011. To ensure implementation in 2011, the strategy must be published as soon as possible. As for an improvement in the numbers of consultants in rehabilitation medicine, there still are only six consultants in rehabilitation medicine in the country. I understand a provision of the national rehabilitation strategy is that an increase in this number would be necessary to ensure that Ireland would have the standards of neuro-rehabilitation services enjoyed by our European partners.

On the points raised with regard to the non-statutory organisations and the number thereof, the Chairman is correct from the perspective of a person who represents an alliance. The Neurological Alliance of Ireland is of the view that there is a critical need for the organisations we represent. Unfortunately, there are many neurological conditions and if one looks closely, our member groups support specific conditions. Consequently, while one can make the point that there are many neurological organisations, unfortunately many neurological conditions require the individualised support, expertise and attention that the aforementioned organisations have developed to provide. The neurological organisations do not provide a support on top of statutory health care but provide an essential support. They provide essential health care and this a vital service rather than an add-on. The non-statutory sector of neurological organisations provide front-line neurological care services in the community. Unlike most other European countries, Ireland does not have a proper framework of community-based neurological care or rehabilitation services. The non-statutory neurological organisations have been plugging this gap for a number of years, continue to so do and are coming under increasing pressure to do so. The funding they need is to provide these front-line neurological care services and so my response is that there is an essential need. I do not believe there are too many non-statutory organisations in the neurological sector because each organisation supports the specific needs of a specialist condition.

Deputy Naughten spoke of rare diseases and rare neurological conditions. For most such rare neurological conditions, the smaller non-statutory organisations are the only support. Organisations such as the Huntingdon's Disease Association of Ireland or Muscular Dystrophy Ireland provide the only specialist support and expertise in the community for people and families with those conditions. Were those organisations not in place and were they to be amalgamated into a larger grouping or body, there is a risk that such expertise, specialist care, information and advice that families and people with conditions desperately need would be lost. This is our concern.

Are there any points Dr. Doherty wishes to address?

Dr. Colin Doherty

As I am not quite used to this format, I was furiously scribbling down the questions. I thought I might talk through the model of care that we propose because it touches on many of the issues. If I have missed anything, perhaps members can bring me back to it. Let me start by outlining what I mean by the model of care. It starts with prevention and then moves into what we deliver at the primary care level, at the tertiary hospital level and for the most complex diseases. I will consider these four areas.

On the preventive side, an interesting point was made about how it is surprising and somewhat depressing to be talking about 50% increases in dementia and stroke over time. People in the Western industrial world must realise that living properly into old age in an industrialised nation now means managing with a chronic disease. The average 65 year old has one or two chronic diseases with which they are managing within the community. Consequently, our challenge is not to obliterate chronic disease but to have a good quality of life while managing to live with a chronic condition. This can be anything from osteoarthritis through diabetes to more serious illnesses such as epilepsy and stroke. It is ironic that over the last 25 years we have got to grips with heart disease to the point whereby acute coronary syndromes are being managed and people are being kept alive, with the result that they live 20 years longer only to then acquire a chronic illness. Perhaps they get stroke, diabetes or Alzheimer's disease and this is where such increases are originating. It is nihilistic to look to the future from the perspective of thinking that such illnesses are being eradicated. What we are going to do is to live better with them.

I really want to be in the prevention space because this has not been the case up to now. We have been so overwhelmed by the acute issues, to which I will refer, that we have been unable to give voice to our concerns regarding preventive issues. For instance, in my area of epilepsy, 50% of hospital admissions are due to alcohol abuse. I see patients who have been admitted to hospital with epilepsy and am expected to manage the epilepsy condition, provide treatment, care and information and then discharge these people to be managed in the community, when really what is going on is that they have an addiction to alcohol. Consequently, the notion of prevention is absolutely crucial and as these programmes develop over the next five years, I fully expect that members will see forceful campaigns and representations from consultants and the teams that will deliver such services on public policy in respect of prevention. The four biggest issues in respect of epilepsy are stroke, perinatal care, alcohol abuse and road accidents. Members should watch this space because we are going to be in this space very shortly. However, I agree that we have not been in it sufficiently heretofore.

If I can move from prevention to the area of primary care, it is a huge challenge and relates to some of the points made by members. On a personal level I feel terrible about the unevenness of the delivery of care in this country. Most people in this room have private health care or, if not, they may know a doctor. Members now know me and could call me if they had a neurological problem. Many people of privilege in this community can negotiate the health system but if one does not, one simply cannot negotiate it. I am referring to the estimates for the number of people who have epilepsy but who never have been seen by a doctor. Delays of eight months were mentioned but some people live their entire lives with epilepsy yet have never received a specialist opinion. While the ethos of what we are trying to achieve here can be easily underestimated, it is absolutely fundamental that we get everyone who has a stake in the delivery of care across these programmes to agree on what a basic standard of care should be. Let me repeat a point I made earlier to Ms Rogers. Even if, for the sake of argument, the whole place implodes, the IMF is brought in, there is no money at all, we are unable to reconfigure any services and nothing happens regarding the delivery of these programmes, I still think we will have made huge progress by simply getting all the clinicians to agree that one has as much of a responsibility to a person living on the Dingle Peninsula as to a person living in Dublin 4. That responsibility and ethos are crucial to the programmes.

Again, it is very important for members to understand that we are absolutely committed to national delivery. Deputy Lynch referred to the south. We have come up with a plan which evens up the number of neurologists per head of population in the country. Last Thursday was a seminal day in the history of neurology because we got approval on 13 new posts in neurology across both paediatrics and adult neurology. That is a massive investment that will never be seen again. It has not happened up to this point and it will never happen again. We have got agreement from the consultants appointments committee that, in principle, it agrees that these should be appointed now.

Given the current fiscal crisis how those jobs will be implement is down to individual hospitals. One of the members mentioned administrative support. We do have to come up with solutions. We cannot appoint people if they do not have space in which to see patients and nobody to transduce their opinions into communications to GPs. There are solutions. This should not derail us. For example, in my own practice we make use of electronic communication and voice recognition software. There are ways around it. There is no getting away from the fact that administrative staff are important for managing cases but we want them doing case management and not typing. Typing can be done. We have the technology to fix that. What we need is case management. We need people shuttled through the health system, up to the specialist opinion and then to be shuttled from specialist opinion back out into the community. There are many steps where their care can fall and we need that help. On the issue of retraining, I would get rid of typing and retrain these people in managing cases and get the people the services they need.

I will finish off with the community side. General practice is absolutely crucial and we need to support it. If GPs are not getting the communication and are not given the resources to manage the cases the whole system falls on its face. We will be providing an intelligence support network through web-based technologies for GPs to give them the initial advice and let them manage cases and crucially that pathway through the care system right up to the people who can make decisions.

Deputy Ó Caoláin mentioned the four-week waiting period before seeing a consultant neurologist. We have a principle around seeing patients. My view is that if a patient needs to see somebody urgently, four weeks is too long. That person needs to be seen now, today or tomorrow. However, a person with a long-term chronic condition who is transferring care from one place to the next does not need to be seen tomorrow. That person needs special case management, a GP who knows how to deal with the system, and a telephone number of somebody he or she can call to manage the condition. That is the primary care area.

In regard to acute care, the ethos is that everybody in the country deserves access to the service that is available to the most privileged in society. That is our goal. In the south, two neurologists have been appointed to Cork University Hospital, which will expand the service significantly. Dr. Peter Kelly, professor of neurology at the Mater Hospital, is designing a stroke programme along with Dr. Joe Harbison of the geriatrics group. They are focusing down on thrombolytic delivery, that is, very acute care. We are moving very quickly through the care system. We are committed to the idea that everybody in the country has availability within a reasonable period.

Deputy Naughten asked about the rarest conditions and the most complex care and what we are doing about it. The key is that when we get the delivery of care correct for the range of the most common conditions it will free up time for individuals who have special interests. It is important to say that the neurological body of consultants are extremely well trained. Most of them have been abroad and worked in large institutions there and most have come back with a special interest. For example, in my area, while my bread and butter day-to-day work is epilepsy, I have a strong interest in early onset dementia in the young which the committee would have addressed earlier. There are not a large number of people with that condition but it needs specialist care. I need to ensure I can delegate the care of epilepsy to people that I trust to have the expertise to deal with it and that frees up my time to deal with these rare conditions. We do have the expertise to deal with it. That is the solution.

I have no illusions about the difficulty in implementing this extensive programme. I cannot say the gate is down on the first hurdle. In the first hurdle we have engaged with all concerned, including the NAI, and asked if we do things this way, can live with it and is this a standard of care we are happy with. We are nearly there. That is a very valuable position to be in. I have no illusions that the next part is extremely difficult and we need the help of the committee to get us over that next part.

I thank Dr. Doherty and Ms Rogers. Are there any supplementary questions?

I noted with great interest what Dr. Doherty had to say. I welcome that he has indicated that alternative means of communication are essential to overcome the situation that I have explained which is real and current as of today. It is alarming that referrals are not taking place because of the backlog in pool typing at one of our major hospital sites. I welcome also the indication in regard to retraining. Of course we need the people, they are essential resources. I am speaking of that particular cohort who have been offered the opportunity to leave. We need them. I ask them to stay.

Dr. Doherty made the point that people are waiting a lifetime. I cannot say that to the family concerned. For them it was the lifetime of the child, who at that time was eight months old. It was an inordinate delay. I wish Dr. Doherty could look at what he has outlined and the NAI and its role. We are not at variance. We are, as Dr. Doherty has stressed, working together towards that common goal. Well done to him.

For the first time in a long time I am slightly optimistic. I did not expect to feel that way today, I thought it would be the same old story. However, I am slightly optimistic about what is possible and I hope it comes to fruition .

Ms Magdalen Rogers

Speaking for the Neurological Alliance of Ireland, on one hand we feel optimistic because we are on the cusp at the moment. With the initiatives in neurology, the clinical programmes and the national rehabilitation, there is the potential to address the challenges that have been ongoing in this area for years. On the other hand, we are very nervous about these initiatives in 2011. The vital support that is available through the non-statutory sector to people with neurological conditions is being threatened by cuts to their funding. On the one hand we are optimistic while on the other we are very worried.

I thank the delegation and wish it well in its superb work. The committee will deliberate on the presentation and will act accordingly. I am sure the recommendations will be supportive. We look forward to hearing from the delegation again in the future.

Ms Magdalen Rogers

Deputy Denis Naughten asked a specific question. I can put him in touch with the organisation who will supply that information.

I thank Ms Rogers. That is very good.

The joint committee adjourned at 5.20 p.m. until 3 p.m. on Tuesday, 16 November 2010.