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.