Jerry Buttimer (Cork South Central, Fine Gael)
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I remind people to switch off their mobile telephones or set them to aeroplane mode. I welcome members and witnesses to this meeting this afternoon. I welcome Ms Magdalen Rogers, development manager of the Neurological Alliance of Ireland, Professor Orla Hardiman, professor of neurology and head of the academic unit of neurology, Trinity College, who also is a consultant neurologist at Beaumont Hospital, Dr. Colin Doherty, consultant neurologist at St. James's Hospital and Mr. Jim Lawless, who is attending as an advocate. They are all welcome and I thank them for their attendance.

The purpose of this evening's meeting is to discuss neurological health policy and I remind members and witnesses not to stray from the subject matter, which I repeat, is neurological health policy. Before we commence, I will remind witnesses concerning privilege. Witnesses are protected by absolute privilege in respect of the evidence they give to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and continue to do so, they are entitled thereafter only to 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 are asked to respect the parliamentary practice to the effect that, where possible, they should not comment on, criticise or make charges against a person or an entity by name or in such a way as to make him, her or it identifiable. I remind members of the long-standing ruling of the Chair and parliamentary practice that they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable.

I invite Ms Rogers to make her opening statement.

Ms Magdalen Rogers:

The Neurological Alliance of Ireland is the national umbrella for more than 30 organisations representing people with neurological conditions and their families. It is the only national umbrella dedicated to representing issues affecting this population, which is estimated to be more than 700,000 people in Ireland. The Neurological Alliance of Ireland has played a significant role in developing the policy agenda for neurological health services in this country. It represents the interests of patients and patient organisations on a wide range of fora.
There are a number of characteristics of neurological care in Ireland. They include long waiting lists for access to neuro-specialists, including for diagnosis. In addition, multidisciplinary care is hampered by extremely stretched and under-resourced teams, where they exist, as in some neurology centres there is little access to multidisciplinary support. Moreover, community aftercare and rehabilitation is extremely under-resourced and underdeveloped. There is only one specialised neuro-rehabilitation community team established in Ireland, working in the mid-west region. All these characteristics combine to result in access to neurological care that falls far below what should be expected in a developed country. There is a largely disjointed and unco-ordinated approach in this country for those who require neurological care and neuro-rehabilitation. Individuals and families require services on a continuum basis, due to the nature and often the complexity of the neurological conditions with which they are living. The current service delivery model is largely episodic, almost exclusively medical in nature and does not reflect or meet the real needs. This is costly and ineffective, not good practice and incredibly frustrating for patients and families.
Our presentation today concentrates on community aftercare and neuro-rehabilitation. Access to neuro-rehabilitation services was highlighted in a case reported on just two weeks ago in the health supplement of The Irish Times, in which a victim of traumatic brain injury was informed there was a four-month waiting list for one of three high-dependency beds in the National Rehabilitation Hospital, NRH. The then clinical lead of the national rehabilitation medicine programme made the following statement in an interview with theIrish Medical Timesin 2011:

There are insufficient numbers of rehabilitation medicine consultants, insufficient access to specialist rehabilitation at a local level, lack of support for primary care teams in managing very challenging cases and lack of support for the patient and their families. Even if a patient has been through the services of the NRH, once they get discharged they’re very often left in a kind of limbo.

Cuts in community health services are critically impacting on people with neurological conditions who are among the most dependent on such supports. Cuts to home care packages are forcing people to stay in acute units or to be discharged home with inadequate care. Either way it leads to long-term pressure on the acute system.

The medical card is a vital portal to services for those with chronic illness. Not having a medical card excludes people with neurological conditions from many of these supports. Ireland is uniquely reliant on not-for-profit organisations to provide neurological health services that are normally provided by the state in other jurisdictions. The reality is that the infrastructure of community-based neurological care is hugely reliant on the services provided by patient organisations. Disability organisations have seen a 15% drop in funding in recent years and many have had to close or curtail services to people with neurological conditions.

The message which we want members of the committee to take from our presentation is that community aftercare for people with a neurological condition in Ireland has historically been underdeveloped and under-resourced and well below what is routinely available in other countries; and the services that are in place are being decimated by cuts to community health services which are significantly affecting the quality of care available for people with neurological conditions in this country.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Ms Rogers. I thank Professor Hardiman for attending. She will address the committee this afternoon in her own capacity. I invite her to make her presentation.

Professor Orla Hardiman:

I would like to start by saying that this is my third presentation to the Joint Oireachtas Committee on Health and Children. I have been reflecting on how things have changed since my first submission over a decade ago. At that time the main problem that we had was that there was a severe shortage of neurologists. I am pleased to say that we have had a substantial increase in the number of consultants since that time – our numbers have increased from 11 when I was first appointed in 1996 to 34 currently in post. We have also had in improvement in the distribution of neurologists. There was a major problem when I started but there is now a service in all regions of the country, albeit still limited in some areas, such as the north west. However, as we came from a very low base, the increase in the number of neurologist from 11 to 34 has uncovered a huge unmet need within the community. It must also be noted that our understanding of the brain has also improved considerably in the past decade, and that we now have new treatments for many conditions - multiple sclerosis and stroke come to mind - that can have a spectacular impact on the course of illness, and both quality of life and survival for those affected. That has of course had a big impact on the type of work that neurologists do. Our role in previous generations might have been to provide accurate diagnoses - the term was "diagnose and adios" - but we are now integral members of multidisciplinary teams that provide long-term care and life-sustaining treatments for patients.

In the context of how we are doing with regard to the number of neurologists we have improved but there is still scope for considerable expansion. To provide a truly responsive service, we would need to build both on the numbers of neurologists, and in particular in the numbers of neurologists with an interest in stroke, but perhaps more important, we need to build effective, highly professional multidisciplinary teams including other professionals such as nurses, psychologists, occupational therapists, physiotherapists, speech and language therapists, dieticians, social workers and many other professionals that make up the team.

That brings me to the main thrust of what I would like to address today. There are really two main points that I would like to make that I think members, as our elected representatives, can address on our behalf. The two points are linked but I will discuss them separately. The first is about consistency and accountability within the HSE, and the very poor communication and delays in decision making that we all encounter. I have attached for the information of committee members extracts from a transcript provided to me by one of my patients. Some of the details have been changed slightly to preserve anonymity, but I can assure members of their authenticity. I will not read it out but it is available. The person concerned, and many others in a similar situation, was trying to establish the status of their medical card. I am sorry to say that their interaction with the HSE would be better placed in a script from “Irish Pictorial Weekly”, or "Little Britain" rather than real life. It is truly horrifying and I am sorry to say that it is not unique. The extract probably encapsulates how we treat our fellow citizens in a far more effective way than anything I can say to the committee.

We are told that people are provided with medical cards on the basis of a means test, but that some people with severe and progressive illness can apply for medical cards on discretionary grounds on the basis of hardship. We are told that the HSE, on the instruction of the Department of Health, interprets “hardship” in a narrow financial context. We are told that such discretionary applications are reviewed by a medical board, and that a formula is used to determine whether the likely hardship encountered by the patient meets a certain threshold that would qualify for a discretionary card. We are also told that the eligibility is subject to review and re-review. We would like to know how this formula works. We would like to see exactly how financial hardship is measured, exactly what formula is used and how it is applied. We would also like to know why some people with clear evidence of progressive neurological disability, supported by many letters and other documentary evidence, are regularly subjected to review of their eligibility, sometimes as frequently as at six-month intervals. We would like to see how the system works because it should be transparent, reproducible, and open to scrutiny. We would like to be able to then challenge the decisions with our own models, based on sound health economic analysis, that show that it is actually more cost effective to give people with progressive and disabling neurological conditions access to community services free of charge, than to make them pay for inferior poorly co-ordinated services in the private sector, and by doing so drive them back into the hospital system.

The second point is about joined-up thinking. I and my colleagues such as Dr. Colin Doherty work in major teaching hospitals. These are subjected to HSE-driven targets. That is understandable because we have long waiting lists for some specialties including neurology. Reducing waiting lists is very important. Nobody should have to wait for nine to 12 months for a specialist opinion. Part of the problem is that the number of available neurologists, and other professionals such as nurse specialists, is still lower than it should be for the size and expectations, which are increasing, of our population.

We also have some concerns in how we are currently asked to reduce our waiting lists because we believe that it is damaging our ability to take care of people with neurological illness. The HSE has asked us to prioritise new patients and to reduce the numbers of patients returning to our clinics but at the same time we are under greater pressure to follow return patients as their disease progresses, particularly those on expensive drugs that require surveillance such as MS. Indeed, we are now required to reissue hi-tech prescriptions every six months. How can we do that if we are not allowed to review patients receiving the drugs? How can we discharge people to community-based services that do not exist, and even if they do, that they cannot access because they have been denied a medical card? I do not need to remind members that cut-backs in health are biting really hard. As Ms Rogers mentioned, many primary care teams exist only on paper, and essential posts are vacant for months on end. The maximum number of hours available within the community for essential services to those with disabilities has been radically cut back. For many patients attending the neurology clinics in our hospitals is the only way by which they can continue to access any sort of service that is relevant to their needs.

As for what we would like members as our elected representatives to do about the situation, first, I and my colleagues would like the committee to recognize that the one-size-fits-all model that the HSE applies does not work in neurology. Our role in continuing to care for people with chronic neurological disease must be valued. In neurology, the returning patient must be recognised as equally important as the new patient in the HSE metric.

Of course, we need to reduce waiting lists, but the policy of excessive prioritisation of new patients over return patients, as required by the HSE, is bad for our fellow citizens. We recognise that our models of care must change and they are changing. Some of the shortages in neurologists could be addressed by building capacity in collaboration with other professional groups. We have had some major successes in this regard, as evidenced by the epilepsy programme where the model of care includes highly trained nurse practitioners with extensive clinical expertise. Dr. Doherty will speak about the experience in that regard. However, for us to provide a responsive, cost effective and valuable service, we need joined-up thinking with a strong emphasis on accountability within the HSE. I refer to simple accountability such as accountability on how medical cards are delivered.

We must remember that there is a continued role for specialist clinics in hospitals, while at the same time we must strive to build really effective multidisciplinary neurorehabilitative services, as outlined by Ms Rogers, that are both patient-friendly and that link expertise within the hospitals with high-functioning neurorehabilitative service within the community.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Professor Hardiman for attending today's meeting. I remind members that she is speaking in her own capacity and not on behalf of-----

Professor Orla Hardiman:

I am speaking on behalf of my colleagues in neurology.

Jerry Buttimer (Cork South Central, Fine Gael)
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I remind colleagues that the HSE is not present and it might be necessary to bring in its representatives at a later date in the interests of balance. It gives me great pleasure to call on Dr. Colin Doherty, the consultant neurologist in St. James's Hospital to speak. Like Professor Hardiman, he is speaking in his own capacity. He is very welcome. I thank him for being present.

Dr. Colin Doherty:

To be clear, I am speaking as the HSE national clinical lead for the epilepsy programme as well. I am a consultant neurologist at St. James's Hospital and the national clinical lead for the epilepsy programme. I thank the committee for the opportunity to present a perspective on the state of care for epilepsy patients in Ireland.

Yesterday was European Epilepsy Day and it is therefore timely that we have been given this opportunity to present our work. I will outline the progress made in the national epilepsy care programme over the last three to four years and underline the significant challenges that remain to be overcome.
Epilepsy is a chronic disease characterized by unpredictable, sometimes lifelong, seizures. The condition affects about one in every 100 people and is second only to stroke as the most common chronic neurological disorder in Europe. Of the 40,000 sufferers in Ireland only about 70% are well controlled on medication, leaving about 12,000 to 15,000 people who have regular breakthrough seizures and are in regular contact with secondary and tertiary hospital services. The condition is responsible for about 6,000 hospital admissions per year in Ireland, more than 95% of which are through the emergency room. The condition kills about 130 people per year. International evidence suggests that there is significant variance in care for patients presenting with seizures at the emergency interface and that too many patients are being admitted when often they could safely receive care and advice and rapid follow-up as an outpatient.
The national epilepsy care programme, under the direction of the office of clinical strategy and programmes has been charged with improving access to expert care and information, improving the quality of care and shifting care where possible from expensive hospital-based care to the community. The core of the plan to deliver these objectives is to address each aspect of care with different care pathways. The first is managed primary care which will be delivered by general practitioners working with practice nurses and with the guidance of epilepsy advanced nurse practitioners, ANPs, in every region in the country, who will manage stable patients with epilepsy in the community and who will guide others though the health system, providing them with the resources for self-management and contact and referral information for expert care. Some contractual issues need to be resolved before widespread uptake in primary care of this pathway.
The second aspect is the development of six regional epilepsy centres nationally - four adult centres and two paediatric centres. These will be staffed by epilepsy experts from a nursing background who will be the main contact within the community services. Working in tandem with medical consultants, they will begin providing rapid access service for epilepsy patients, telephone, e-mail and web-based advice. In time, they will provide outreach services to secondary care hospitals, maternity hospitals, residential intellectual disability services and primary care centres.At present every region in the country has, to a greater or lesser extent, access for epilepsy services with these nurses in place everywhere except from HSE south. The national epilepsy care programme and the HSE have provided funding for the seven additional nursing staff required to deliver the programme but for unclear reasons, nothing has happened. At Cork University Hospital a sum of €500,000 has been invested in equipment that is awaiting staff.
The third pathway is the use of an integrated care pathway, administered though emergency departments and acute medical admissions units whereby front-line doctors and nurses will use an evidence-based protocol to help with management of patients who present to hospitals with seizures. An early version of the pathway has been in use in St. James’s since 2009 and we have published a research paper showing significant reductions in admission rates, length of stay, readmission and follow-up time by the use of the pathway.
Finally, the 15% of highly complex epilepsy patients who need to be assessed for possible epilepsy surgery will be dealt with by expanding the pre-surgical evaluation beds in Ireland from four - two adult and two paediatric - to ten - two paediatric and eight adult. These beds will be spread over three sites - two paediatric beds in the new national paediatric hospital, four adult beds in Beaumont Hospital, Dublin and four in Cork University Hospital. Last Friday the Minister opened the state of the art, fully functional and staffed epilepsy monitoring unit in Beaumont Hospital. This investment of capital and staff is the first such development since 1982 and is most welcome. A similar investment in equipment has been made in CUH but again, without staff, it will remain idle and without action will become obsolete.
The opportunity for and necessity of using health care data and information intelligently has never been greater. The information generated from health care data is an essential tool in the transformation of health care, which aims to improve quality, safety and efficiency of patient care. The epilepsy programme is a leader nationally with the implementation and use of the award winning epilepsy electronic patient record, EPR, in a number of regional epilepsy centres including University Hospital Limerick, University College Hospital Galway and St. James’s, Beaumont and Connolly hospitals in Dublin. This secure web-based EPR is facilitating the sharing and exchange of clinical information across traditional organisational boundaries. The epilepsy EPR is currently seeking an industry partner through a Centre for Management and Organisation Development, CMOD, funding model for further developments over the next five years to the tune of €250,000.
The national epilepsy care programme has a ten-year vision for the transformation of epilepsy care in Ireland. The aim is to provide the best value care for all people with epilepsy in the right place, at the right time, sharing the best available information. By then a whole cohort of new experts in nursing will be helping to manage the requirements of good quality care for those suffering from this chronic disorder. Care will be centralized in six regional epilepsy centres when necessary and decentralized in a structured primary care programme where possible. A sophisticated and robust means of electronic information management will be developed. Front-line physicians delivering care at the emergency department interface will be provided with an integrated seizure care pathway that will reduce admissions and length of stay, while improving patient safety by eliminating treatment variability. What we need from this Joint Oireachtas Committee is a recognition of the gains made and continued support and focus on the needs of people with epilepsy, a common disease with serious consequences that will require further investment in staff and equipment to reach international standards once the initial investment in the programme is complete.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Dr. Doherty for his presentation. Our next and final witness is Mr. Jim Lawless who is a patient advocate.

Mr. Jim Lawless:

I thank the Chairman, members and staff of the committee for inviting me to give a presentation. The neurosurgical centre at Beaumont Hospital is not safe because ---

Jerry Buttimer (Cork South Central, Fine Gael)
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Sorry, I do not wish to be unfair but in the context of that remark I must point out that representatives of Beaumont Hospital are not here and we have no function regarding the hospital. Our remit is national health policy and that is the framework within which we are discussing this issue. Even though Mr. Lawless is expressing a personal opinion, he may be making a defamatory statement and I must alert him to the fact that privilege does not allow him to do that. I ask Mr. Lawless to be cautious because he is identifying people who are not here to defend themselves.

Mr. Jim Lawless:

I take the Chairman's comments on board but I gave the script of my presentation to the committee's staff and they approved it.

Jerry Buttimer (Cork South Central, Fine Gael)
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They did not approve it. No.

Mr. Jim Lawless:

They did not say there was a problem with ---

Jerry Buttimer (Cork South Central, Fine Gael)
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This committee meeting is a meeting of Members of the Houses of the Oireachtas. We would like to hear Mr. Lawless's presentation but I must advise him, for his own sake and that of the committee members, that he 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. Representatives of the entity that Mr. Lawless has just named are not here to defend themselves. He is making a charge against them and they cannot defend themselves. I am simply advising Mr. Lawless of that.

Mr. Jim Lawless:

Patients who have suffered a brain haemorrhage are denied access to emergency neurosurgical treatment. Subarachnoid Haemorrhage, SAH, is an immediate and life-threatening emergency. An estimated 460 to 1290 people suffer a brain haemorrhage each year. Ten to 15 per cent of casualties die before reaching hospital and about half of all patients die within the six months. Guidelines for the management of SAH patients were introduced by HIQA in 2010 to clarify the criteria for admitting patients for emergency neurosurgical or endovascular treatment but these guidelines have not improved access to treatment, nor could they. The reality is that the neurosurgical centre is grossly under-resourced. There are just ten neurosurgical intensive care beds. A report entitled "Towards Excellence in Critical Care" by an expert group on critical care services in the Republic of Ireland was presented to the HSE in 2009. That report assessed a need for 52 intensive care and eight high dependency neurosurgical beds.
I advised HIQA in 2008 that standards and measures of performance were required to address the inconsistency of decisions being made in the neurosurgical centre to admit SAH patients for treatment. No action was taken by HIQA until after the authority had been challenged in The Irish Timesin September 2009. The measures of performance or key performance indicators, KPIs which HIQA introduced were customised to satisfy the constraints of inadequate resources. Consequently, they restrict access to treatment and are unsafe. HIQA has also failed, despite several requests, to put in place a standard to measure the outcome for SAH patients admitted to an acute hospital but denied treatment in Beaumont Hospital.
HIQA is not an independent authority ---

Jerry Buttimer (Cork South Central, Fine Gael)
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Sorry, I must ask Mr. Lawless to withdraw that remark because ---

Mr. Jim Lawless:

I withdraw that.

Jerry Buttimer (Cork South Central, Fine Gael)
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HIQA is an independent authority, to be fair.

Mr. Jim Lawless:

I withdraw it at this time

John Crown (Independent)
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Can it be said under the privilege that I have, that---

Jerry Buttimer (Cork South Central, Fine Gael)
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Under statute and law, it is an independent authority. We will come back to this at the end of the presentation.

Mr. Jim Lawless:

Corporate and clinical governance is poor. There is no clear separation of roles and responsibilities for patient safety between the Health Information and Quality Authority, HIQA, the investigating authority, and the Health Service Executive, HSE, which funds health care. In 2012, out of 238 SAH, subarachnoid haemorrhage, patients who were diagnosed, 138 were treated but 100 were denied treatment. There is no information on the outcome for these patients. If poor grade patients were to be admitted to the National Hospital for Neurology and Neurosurgery, London, 53% could expect a good recovery.
We need to know the outcome for SAH patients who were denied neurosurgical treatment between 2011 and 2013. This information is available in Beaumont Hospital because the neurosurgical centre is required to provide a patient management plan for each SAH patient referred for treatment. Letters are sent from the centre to each referring hospital, so the records are in place. There is a culture of secrecy and denial, however. The statement by Beaumont Hospital to The Irish Timesthat appropriate protocols were in place to ensure SAH patients receive emergency neurosurgical treatment was misleading. HIQA claims the HSE is responsible for the safety of patients who require treatment. However, the HSE relies on assurances from Beaumont Hospital that the neurosurgical centre can provide access to treatment but assurances from Beaumont Hospital are not reliable.
My written submission makes 13 recommendations which I urge the joint committee to carefully consider, approve and recommend for action to the Minister for Health. I particularly recommend an increase in the number of neurosurgical intensive care beds in line with the recommendations from Towards Excellence in Critical Care and review the corporate and clinical governance standards at HIQA and the HSE. I also recommend the urgent review of mortality and morbidity for SAH patients denied treatment between 2011 and 2013. One small change, which would not incur any costs, relates to the interhospital transfer of critically ill patients. This should have the same urgency as a 999 emergency call. There was one case where it took three and a half hours to transfer a patient from one hospital to another.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Mr. Lawless for his presentation. While I admire him for his passion, his views are his own. The committee does not have any remit to examine the neurological centre at Beaumont. It is examining national health policy. I must point out that the HSE, HIQA and the hospitals referred to are not here to offer a counter view. For fairness and balance, we will have to offer an invitation to them to address the committee on this matter.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I thank the delegations not just for their presentations but their work in the preparation of these submissions. This is an important area of health care and I welcome the fact we are addressing it once again.

Ms Magdalen Rogers set out clearly the significant shortcomings in the provision of neurological care, including long waiting lists for access to specialists, inadequate access to multidisciplinary teams, lack of community after care and neurorehabilitation. Professor Orla Hardiman made the point about a largely disjointed non-co-ordinated approach which is costly and ineffective. Reference was also made to the recruitment embargo in the public sector putting pressure on therapy services. This is a policy that the committee has not overlooked. We need to get the message through that it cannot continue because it is having serious detrimental impacts on treatment programmes and outcomes.

I have previously highlighted the inadequacies of neurorehabilitation services with the Minister for Health at the committee’s July quarterly ministerial meeting. The response I received was wholly inadequate and was deeply disappointing. I commend the launch of the alliance’s neurorehabilitation manifesto last year and hope it continues to have good luck in all it undertakes. Its latest survey on the numbers suffering neurological conditions demonstrates a point the committee has addressed repeatedly, namely 27% of them have had medical cards refused or withdrawn. This is further evidence of a point we have argued consistently with the Minister and the HSE executive at this committee. In fairness, it is not just Opposition Members on the committee who have raised this matter. We are all universally angered by this fact and have asked for changes to the policy.

I thank Professor Hardiman for providing us with a transcript of the telephone conversation between a patient and the medical card centre. All Deputies and Senators would have similar exposure. I note she identified the lack of joined-up thinking and asked how we can discharge people to community-based services that do not exist. While the number of neurological consultants has increased from 11 in 1996 to 34 now, this has only uncovered a significant unmet need. What is the proper complement of consultants to address needs adequately and in line with European norms?

I thank Dr. Doherty for his review of epilepsy services. He stated managed primary care will be delivered by general practitioners working with practice nurses and with the guidance of epilepsy advanced nurse practitioners, ANP, in every region. Are such ANPs in place in every region? He also referred to contractual issues that need to be resolved before widespread uptake in primary care.

Are these contractual issues with the Irish Medical Organisation, IMO, and how near are they to a resolution? It is very worrying that Mr. Lawless said the NECP and HSE have provided funding for seven nursing staff to deliver the epilepsy programme in the HSE south but for unclear reasons nothing has happened and, as a result, over €500,000 worth of equipment is lying idle. Who bears direct responsibility for this shocking exposure of the failure properly to provide and see the utilisation of expensive and important equipment? Who should make the appointments that have not been made?

I sincerely thank Mr. Lawless for his presentation. It has been some years but this is my first opportunity to offer him my sincere sympathy on the loss of his dear wife back in 2005, as he indicated in his presentation. I very much welcome what Mr. Lawless has presented to us. It is a significant piece of work. He has made several recommendations, some simple, some more complex. We should send Mr. Lawless's presentation to each of the various entities, such as Beaumont Hospital, the HSE or HIQA, and ask them to respond. I hope that would be in some way a useful employment of the work and effort he put into preparing his submission to us. It is deeply appreciated.

Jerry Buttimer (Cork South Central, Fine Gael)
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On that point, it is important that we offer the right of reply. We are hearing only one set of presentations. I was going to make this point at the end of our meeting.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I propose it not only for balance.

Jerry Buttimer (Cork South Central, Fine Gael)
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No, I was going to make the point that-----

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I would like to hear what they have to say in reply to Mr. Lawless and their views on his recommendations.

Jerry Buttimer (Cork South Central, Fine Gael)
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I remind Deputy Ó Caoláin that this committee does not have an investigative role. It is important that we present the content of today's meeting to the HSE and HIQA to respond to us and meet us. I want to wait until we hear from other people before we come to that.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I ask the Chairman not to leave Beaumont Hospital out.

Jerry Buttimer (Cork South Central, Fine Gael)
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Yes. As Senator Colm Burke has an Adjournment matter in the Seanad I will let him speak now.

Colm Burke (Fine Gael)
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I thank each witness for the very comprehensive presentation and the work they are doing. I fully appreciate that it is very difficult area. Deputy Ó Caoláin referred to the issue regarding Cork. If the people have been interviewed, does anybody understand why the appointments have not gone ahead? The people to fill the vacancies seem to have been selected. The worry is that if the people who have been selected are left hanging around for a long time, they will find jobs elsewhere. That is the big issue I would worry about. Why have the appointments not gone through when the interview process has happened and they are deemed to be suitably qualified? That is my only question because I am very concerned that all this has happened and that the end result has not been achieved.

John Crown (Independent)
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I welcome my professional colleagues, other representatives and Mr. Lawless. I have a number of very focused questions. In common with most parts of the health service, neurological services such as neurosurgery, neurorehabilitation and neuropathology, are grotesquely understaffed by any international comparison. I will ask some specific questions on that. I do not want anybody to think that any part of me is criticising my professional colleagues or colleagues from other professions. They do extraordinary and heroic jobs under very difficult circumstances in which they have been placed by successive Governments and by the permanent government, which has historically had a very unrealistic view of how a health service should work. This view is coloured virtually entirely through the prism of Her Majesty's National Health Service which, for all its glory, is by modern, western standards, not the standard we should emulate.
I would like to address some questions primarily to Dr. Doherty and Professor Hardiman and they will probably need to get their pens out. How many neurologists, neurosurgeons and neurorehabilitation consultants are there per head of population in Ireland? What is recommended by the local professional authorities? What would the numbers be, in so far as they know, for the UK, continental Europe and North America?
Like Deputy Ó Caoláin, I have mentioned neurorehabilitation in other fora over the last year, specifically regarding Dún Laoghaire, which I mentioned in the Seanad last year. Compared to other countries, Ireland has approximately 60% to 70% of the number of neurorehabilitation personnel per head of population that would be found in the UK. We have one fifth of the numbers that would be found in general in continental Europe. The number of beds we have per head of population is 10% of that which is available in France. That is just one example. I strongly suspect that for all the other disciplines our numbers are similarly low.
Speaking from the perspective of my day job, I have always been troubled by the adequacy of neurosurgical services in Ireland. This is not because I have any problem with the quality, competence, dedication and diligence of the people who work on the front line in Beaumont, Cork and other units but because they are grotesquely under-provided and it has always been my impression that as a result of this a series of Band Aids has been put over an inadequate service. Let the witnesses correct me if I am wrong. Is it appropriate that ambulances in Dublin can take somebody potentially with head trauma to a hospital were neurosurgery may not be available?
In Dublin neurosurgery is available in only one hospital. Most of the acute hospitals which are on call for neurosurgical trauma and sudden catastrophic neurosurgical events such as brain haemorrhages will not have the expertise on campus. This means, by definition, that in five out of six hospitals to which patients will be brought, if they have such a problem which requires that backup, there is a built-in delay and triageof having people at a remote site trying to deal with a problem telemetrically by assessing scans that have been forwarded over. If one of my precious family members had a neurosurgical catastrophe, I know the kind of service I would like them to have and the kind of service they would have. I do not believe this is the service that is routinely available to people who dial 999 and are brought to hospital in an ambulance. We need to seriously look at that situation.
I met Mr. Lawless and he is obviously somebody about whom it will be said that he is bearing a personal grudge or acting as a crank. I will not speak about the specifics of what happened in Beaumont Hospital. However, the general perception that somebody could examine how a person with neurosurgical potential catastrophe in Ireland is dealt with and find the situation to be wholly inadequate is very plausible. I am sorry about that. I am not pointing fingers at individual people or units, but we do not do this very well. One of the reasons this meeting is happening today is because I suggested it, and one of the reasons I suggested it is because I met Mr. Lawless. Mr. Lawless was, to an extent, singing from a hymn sheet from which I had been warbling a few bars to myself over the years.
I am a little troubled by this. Identifiable individuals have a right to their reputations. Publicly funded bodies do not, be it St. Vincent's University Hospital or the board of that hospital, Beaumont Hospital, HIQA, the HSE, the Department of Health or any other entity. Recently we had the absurd situation where a respected medical journalist, Dr. Ruairí Hanley, wrote a piece about the problems with medical cards and got a threatening letter sent by a PR spokesperson for the HSE. The HSE should have no PR spokespersons. Public servants should speak for themselves on their own track records. They should not spend taxpayers' money to hire people whose primary purpose is not to foster communications but to defend their reputation. It has a chilling effect.

Jerry Buttimer (Cork South Central, Fine Gael)
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To be fair, the persons about whom Senator Crown is speaking are not here to defend themselves. We must have balance.

John Crown (Independent)
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Invite him in. I will gladly hold the door open for him. I have no problem. I will buy him a cup of coffee and say it to his face. I have not mentioned him. It is wrong. The backbone of a democracy is a critical press and it should not happen that we cannot criticise public bodies because the public body has a newly-defined reputational right. Can one imagine if somebody was prevented from criticising the FDA, the National Institutes of Health or the Pentagon in Washington because somebody there stated he or she would threaten to sue if the reputation of the organisation was questioned? We would have no investigative journalism whatsoever if that happened. For these reasons I must state I find myself very much in sympathy with the tenor of Mr. Lawless's comments. I have not read the submission in detail but Mr. Lawless has an absolute right to criticise any organisation he wishes without fear of legal retribution if it is a public organisation. I hope he has not criticised individuals in an identifiable way.

I will return to the core of the questions I asked. I understand I am catching the witnesses on the hop and I understand they may not have the figures at the tips of their fingers. By and large there is a rule which applies across the Irish health service. In general we have approximately 60% of the number of consultants the UK has, and the UK has approximately one fifth of the number in continental Europe and one tenth of the number in North America. This is generally how it works.

Jerry Buttimer (Cork South Central, Fine Gael)
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I should put on record Deputy Maloney also asked for this discussion to be had and for it to be on the work programme.

John Crown (Independent)
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I apologise. I was aware of that.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Senator Crown for his help with organising this meeting.

Ms Magdalen Rogers:

I do not think I had specific questions. I wish to thank Deputy Ó Caoláin for his support and for recognising we have brought the same message for some time, in particular with regard to neurorehabilitation. We want to put neurological care in the context of issues affecting the rest of the health service.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Ms Rogers for her work.

Professor Orla Hardiman:

Deputy Ó Caoláin and Senator Crown asked the same question on the number of neurologists we should have. It is a difficult question. In Ireland we have approximately one neurologist per 117,000 people. Dr. Doherty did a quick calculation and in the UK there is approximately one per 80,000 people. The difficulty with the question on what is the remit of neurology is the remit is quite wide. The biggest neurological problem we have is stroke, which falls somewhat in the remit of neurology and somewhat in the remit of medicine for the elderly. If stroke is included as part of the remit of neurology we are grossly underresourced and undersupported. To have one per 100,000 people we should have 45 neurologists and to have one per 80,000 people, which would be equivalent to the UK, we should have 54. We would need another group of specialists with expertise in stroke and it should include neurological support.

Dr. Doherty will probably develop the point that a neurologist in isolation is not a particularly helpful animal. We are pretty good at making diagnoses but to implement the best care we would like to have for ourselves and our families we should be part of a team, which brings us to the employment embargo which is a huge problem. The model by which we deliver care should change to a multidisciplinary form whereby we are part of a multidisciplinary team. We would need another ten or 20 neurologists to make the team work, but it would not work without the other disciplines. Dr. Doherty has described a very good model on the important role highly-trained clinical specialist nurses and nurse practitioners can play in the delivery of care.

We have a tangible request to make of the committee with regard to medical cards, which is to investigate the formula used to define the difference between the means test for the medical card and the discretionary medical card. We have been informed a financial mechanism or metric is used in the HSE with regard to the difference when somebody exceeds the mean but falls into the discretionary category. We would like to know the health economic basis of the metric. It is a tangible question on which we would like the committee to come back to us because we would like to test it with our own health economic analysis. I will leave the committee with this very simple question.

Dr. Colin Doherty:

I thank the members for their questions and I will try to address them as specifically as I can. With regard to managed primary care and how it will be delivered and why it may not be very advanced, it goes back to what Professor Hardiman stated. What patients seek, particularly when they are diagnosed with a chronic disease, is a pathway of care. They do not just seek one specialist. We know from chronic diseases unless we can use all of the resources the health services have to bear, including community services of which primary care doctors are leaders and engage them in delivering some of the care, we will be overwhelmed. Academically everyone agrees with this.

Our nurses are in place everywhere except the south. They are available and willing to deliver care. We are engaging with the primary care nurses with an e-learning programme to teach them how to deliver care. We believe 70% of patients with epilepsy can be managed safely in the community. Our real problem is a contractual issue. It is not an issue of privilege and no one needs to be here to answer it. A new contract is being negotiated which will, we hope, deliver a clear remit for primary care to deal with chronic disease. At present it does not exist. The letter of the existing contract does not state there is an absolute role to deliver chronic disease management. Until this is fixed we will not be able to get this moving in a widespread fashion.

Jerry Buttimer (Cork South Central, Fine Gael)
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What exactly must be fixed?

Dr. Colin Doherty:

It is the kernel of the negotiations. Once the negotiations are concluded and the new contract comes out it will have a remit for chronic disease. This is the kernel of it. There may be other issues regarding funding but it is about involving GPs. Individual GPs are eager for this and really want to help. We have some pilot data which is fascinating. We know we can manage the patients through contact with our nurses and primary centres. We conducted a pilot with one large practice in the south of Dublin with 4,000 patients. All of the epilepsy patients were put through this programme and we have a checklist for safe care which the GPs and nurses can use. Only 10% required to be referred back to the hospital which means 90% of the patients were managed in primary practice and did not need to go to the specialist centre.

Jerry Buttimer (Cork South Central, Fine Gael)
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There was no need for them to visit at all?

Dr. Colin Doherty:

Not at all. They were managed through contact with the primary care nurses using e-mail. We are in contact with primary care nurses and GPs are very eager for this to happen. However, it will not happen until the contract negotiations have concluded.

With regard to who is accountable and what is happening in Cork, I take responsibility for it. I act on behalf of the HSE and I am the clinical lead for the programme. I was given control of the budget to hire the nurses. I oversaw the interviews through the national recruitment service. I know they were interviewed, but they have not been put in place. I must take responsibility for this on behalf of the HSE and the national programme.

Jerry Buttimer (Cork South Central, Fine Gael)
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What does Dr. Doherty mean they were not put in place?

Dr. Colin Doherty:

To the best of my knowledge the issue revolves around the recruitment ban locally. We were given a budget in the service plan from January 2010 for the nurses to be appointed. We oversaw the appointment process and the requirement for training for these nurses to be approved. We provided the equipment and identified the space in Cork University Hospital for the epilepsy unit.

We put in the €500,000 worth of equipment, but one crucial piece was missing - the local hospital did not have the capacity to burst through its employment ceiling to hire the people, despite the fact that the money was there. The money, equipment and space are available, everybody is aligned and everybody knows it is needed but, unfortunately, there was a critical problem with the employment ceiling locally.

Jerry Buttimer (Cork South Central, Fine Gael)
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Was there a possibility of juggling the allocation of staffing within that employment ceiling?

Dr. Colin Doherty:

Yes. This is where it becomes unclear to me. The official answer would be that exceptions were made by the clinical programmes to the employment ceiling. In a programme that had a defined model of care and sanction from the clinical programmes office, exemptions were made for employment ceilings. It is a failure on my part, I suppose, that I do not know why people who were interviewed and appointable have not been appointed. We must take collective responsibility for it.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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That is laudable, but it will not free up this matter. It is not enough. Is the witness in a position to give the committee his sense of how this can be addressed? It appears to be simple. Has the witness taken steps within the HSE to address the local freeze, for want of a better word? The committee must complement whatever efforts Dr. Doherty has employed or will now employ to get to a better position on this. I believe we are on the same page. Despite the fact that Dr. Doherty has taken responsibility, that is not really the case. He has overseen all the respective and required steps for that recruitment, but we must see those people in place and their professional skills put to the use and purpose for which they were designed. How can we get to that place together?

Dr. Colin Doherty:

I am always interested in the difference between responsibility and accountability. It is never really made clear in discussions such as this. When I say I take responsibility, I say it genuinely. I got into the business of managing a programme because I wanted to take responsibility for it. Unfortunately, I am not accountable for it, so I cannot be fired for not getting these-----

Jerry Buttimer (Cork South Central, Fine Gael)
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Accountability rests with local management in the HSE or in the hospital, or both.

Dr. Colin Doherty:

That is right. The point is that I can take responsibility - I am not just throwing myself on my sword - but I am not accountable. The accountability lies at the local level. This is an ongoing process. The book on it has not closed. The latest we have from Cork University Hospital is a promise to open the unit on 31 March this year. I will hold it to that as best I can.

Jerry Buttimer (Cork South Central, Fine Gael)
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As Chairman of this committee and a local Deputy, I will ensure it answers that question.

Dr. Colin Doherty:

It is important to point out that there are two sets of nurses here. There are the nurses to run the epilepsy unit, which is very important for this small group of highly complex epilepsy patients. However, the majority of the patients are those we must manage in the community. Two nurses who have been interviewed and are appointable will work in this advanced nurse practitioner capacity, which is needed to supplement the work of Daniel Costello, who is the consultant neurologist running the epilepsy services there. They will support the 80% of patients and maintain them in the community. I do not want the Cork unit to open and for that to be final word.

Jerry Buttimer (Cork South Central, Fine Gael)
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Have they been interviewed as well?

Dr. Colin Doherty:

Yes. If you wish, I would like to refer back to the committee. Several moves have been made with the help of various representatives, and the media have played a role in it as well. I believe the situation is moving forward. I am optimistic that if the committee invites me back in the summer, I will be able to give it good news on the appointment of these nurses locally.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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In the meantime, Chairman, we as a committee, rather than just you as a Deputy-----

Jerry Buttimer (Cork South Central, Fine Gael)
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I was proposing it as Chairman.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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Dr. Doherty would have our full support. Let us collectivise and use the weight of our shared involvement in this institution.

Jerry Buttimer (Cork South Central, Fine Gael)
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We will formally seek an update from the HSE and the local management on this.

John Crown (Independent)
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Could the witnesses respond to my concerns about acute neurosurgical emergency treatment and whether we are doing it correctly?

Dr. Colin Doherty:

Neither of us is a neurosurgeon. I am wearing my management hat for the HSE, but to my right and left are people who are speaking in a very personal capacity. Their points are well made. I got involved in this because I think the most complex thing we do is deliver health care, and it must be delivered. People are crying out for process and data. When I started this programme we were a group of experts who were all providing care. If a person in Galway had epilepsy, their chance of getting the same type of care as a person in Dublin was minimal. It was all very different. Now, we are starting to standardise everything we do. I acknowledge the hurt of Mr. Lawless and the points he makes. He is crying out for a process to be put in place for what happens to people. That might be what HIQA meant to happen in 2010. It is a question of whether we, as a profession of consultants, have delivered on that process. That is where the concern lies. If I talk about what I am delivering on a daily basis, I should point out that the people I work with on a daily basis are crying out for process. Unless we put a process around it, it will not be fixed.

With regard to neurosurgery, there are numbers, resourcing and bed issues. However, one must put a process around this complex delivery of care. For example, I do not believe that one cannot safely manage a patient who has some neurosurgical issues in a distant centre, but unless one gets the governance right and somebody takes responsibility at the neurosurgical centre for managing a patient who is in a distant centre, they will never be looked after properly. There must be a set of trigger points for the movement of the patient. The patient must be moved according to a set of protocols. If the patient runs into A, B or C trouble, the ambulance service must deal with that as an emergency, like a 999 call. They are all process issues, not resourcing issues.

Jerry Buttimer (Cork South Central, Fine Gael)
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Surely the process, which is the policy-----

Dr. Colin Doherty:

I do not believe process and policy are the same thing. The policy is that we must manage our patients as safely as possible in the safest place.

Jerry Buttimer (Cork South Central, Fine Gael)
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Absolutely. However, surely there is co-ordination and joined-up thinking between all involved in the process of doing that at professional level.

Dr. Colin Doherty:

Absolutely.

Jerry Buttimer (Cork South Central, Fine Gael)
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Why is that not happening?

Professor Orla Hardiman:

I would echo what Dr. Doherty is saying. It goes back to the theme we all have today. It is very easy to say that our health service is inadequate. Obviously there are many problems in the way the service is delivered to our patients, and they are not all resource issues. We are conscious that we are in the middle of the worst recession ever and that extra resourcing for the service we are trying to deliver is something that we would like in the longer term in whatever iteration we have to ensure the system is fair and delivered appropriately. In the meantime, the four of us present today would agree that there are many things we can do differently and more effectively with the same resources. There is a deficit between the policy and the process.

Jerry Buttimer (Cork South Central, Fine Gael)
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I appreciate where you are coming from on that point, but surely the person who drives the train is talking to the conductor and the mechanic to ensure they get the result they are trying to achieve. Is there any integration between the HSE, hospital management and the professional consultant delivering on the ground? Let us park the resource issue for a moment. As you said, we are in a recession and have had to cut back budgets. If it is not about resources, why is that not happening?

Professor Orla Hardiman:

I will give my personal view. My colleagues here might wish to develop it. The issue is accountability, as Dr. Doherty said. He is responsible. Who is accountable for the transcript I gave the committee? The issue is responsibility-taking and accountability. The person who is responsible should be accountable and the person who is accountable should be held accountable.

That is not happening anywhere in the system and that is what Mr. Lawless and Dr. Doherty were driving at. The presentations shared the common theme of an absence of clearly defined accountability within the system. For example, a train driver is accountable to the head of train drivers; a conductor is accountable to the head of conductors; and a line manager is accountable but there is no mechanism. Therefore, if the train is unsafe and it is unclear then who should be held accountable. That is where the problem lies. Does Dr. Doherty agree with my comment?

Dr. Colin Doherty:

I agree. I hope that people took some good news from what we have done.

Professor Orla Hardiman:

Yes.

Dr. Colin Doherty:

There are now nine epilepsy nurse specialists working in the Dublin region delivering care. We have two maternity hospitals with an outreach programme providing an epilepsy service and one more must come online in Dublin. We have four intellectual disability centres where a nurse visits people who are intellectually disabled. That means they do not have to be put in taxis, transferred to and made sit in the unfamiliar environment of waiting rooms in adult hospitals. We are making progress and it is all about a process or structure that we have put around the service. The national clinical programmes - and I only represent one aspect of them - is the way forward. However, it is the way in which one implements the process.

Ms Magdalen Rogers:

Those who can.

Dr. Colin Doherty:

We are all worried about accountability because we need to get the service right. Let me return to the train analysis. We know that people in Ireland are getting a service, they are sitting in comfortable seats, the floors are clean and their journey on the epilepsy train is starting to work.

Jerry Buttimer (Cork South Central, Fine Gael)
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Does that situation apply outside of Dublin?

Dr. Colin Doherty:

Yes. We have nurses in Sligo, Galway, Limerick and Dublin and we have a paediatric nurse in Cork as part of the adult nursing service.

Jerry Buttimer (Cork South Central, Fine Gael)
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I call Mr. Lawless and then I shall call Ms Rogers at the end.

Mr. Jim Lawless:

I shall make a couple of brief points. First, this democracy has a serious problem when a parliamentary question inquiring about the outcome for patients denied access to neurosurgical treatment put to the Minister for Health is referred to the HSE. Can the Chairman advise me whether I am allowed to state the response?

Jerry Buttimer (Cork South Central, Fine Gael)
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Yes.

Mr. Jim Lawless:

The response was as follows:

On call letters typed from April 2010 are stored on the hospital's hard drive system. However, the neurosurgical research and development unit does not have the resources to retrospectively review these letters.

Jerry Buttimer (Cork South Central, Fine Gael)
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The committee might take up the matter and seek an answer. To be fair, the question is legitimate. After the meeting we will take the matter up with the HSE.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I concur.

John Crown (Independent)
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We need to hold a special session to debate neurosurgical and neurotrauma services.

Jerry Buttimer (Cork South Central, Fine Gael)
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As I said earlier, this is the first of a series of meetings so I do not want to pre-empt anything. I am aware that other members wish to speak. We will certainly return to the matter and that is a given.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank all of the witnesses for attending. On behalf of the committee I extend our sympathies to Mr. Lawless and his son on the death of his wife, Nuala. I admire his passion. I have read his report and met him. He needs to get answers, and not just in a personal capacity, but answers must be given in the context of the Bill. As part of our debate there needs to be a further meeting of the committee. I thank everybody for attending and I ask members to stay behind for a private session. Does Ms Rogers with to comment?

Ms Magdalen Rogers:

I want to pick up on the point made by Dr. Doherty that this is a good news story which I believe we must acknowledge.

With regard to the neurological health services, the Neurological Alliance of Ireland has been in existence for many years. We used to attend committees like this but we lacked a focus in terms of an initiative within the health services that would tackle the needs of people with neurological conditions. The clinical programmes in neurology, rehabilitation, epilepsy and stroke represent a vital initiative which should not fall down through a lack of resources and the health service is accountable for delivering on the initiative.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Ms Rogers and call Professor Hardiman.

Professor Orla Hardiman:

I shall make a parting comment. In terms of accountability and transparency, we have a system whereby we award people access to a wide range of community services - patchy though they may be - but it is completely non-transparent, the discretionary component is unclear and is based on financial hardship. We want to know exactly how it works because we want to test the system. It has caused a huge amount of damage to our fellow citizens who have chronic conditions, encounter huge financial hardship and are denied or repeatedly asked to submit and resubmit information, as seen in the transcript. We would like to know the metric applied and who makes the decisions because we want a transparent system.

Jerry Buttimer (Cork South Central, Fine Gael)
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We will continue in private session. Is that agreed? Agreed.