Professor Orla Hardiman:

It is an excellent question and comment. The HSE has recognised this in the appointment of my colleague Dr. Siobhán Ní Bhriain as clinic lead in integrated care. The Deputy is absolutely right that much of what we do in neurology interfaces with many other disciplines. The patient journey, which is what we should focus on, interacts with many different services in the hospital and community. We have a commitment to the Sláintecare aspiration to maximise engagement at community level and minimise, while retaining quality, engagement in centres where people may have to make long trips with long waiting times.

In trying to map out the patient journey in broad brush strokes with the various disabilities we take care of in the clinical lead programme for neurology, my colleagues in the clinically advisory group and I have divided neurological conditions into three major categories. One is relatively common conditions such as migraine and epilepsy where engagement at community level with good support through specialist nurses is appropriate. A small proportion of people may need to move to specialist care. This is primarily in the neurological domain but there are very close interactions with the community. Epilepsy is a very good example of this. My colleague, Professor Colin Doherty, with funding from the Sláintecare pilot programme, also looked at engagement with homeless services. He worked very closely with general practitioners to try to improve access for vulnerable groups that might otherwise not be able to access services. This is within a community setting.

The middle conditions are not rare but not overly common and require neurological engagement. Multiple sclerosis and Parkinson's disease are examples. Much of Parkinson's occurs over the age of 65 and it is co-managed by colleagues in medicine for the elderly. Some people with Parkinson's develop neuropsychiatric symptoms and need the engagement of old age psychiatry. Multiple sclerosis and Parkinson's need rehabilitation, which is in community rehabilitative services. Parkinson's with cognitive impairment falls under the national dementia strategy. They may engage with the National Dementia Office services. This is completely separate to the clinical design programme.

Rare diseases include Huntington’s disease and motor neurone disease as well as many others such as muscular dystrophy. In fact, about 40% of neurology concerns rare diseases. These require tertiary and quaternary services and many of these people require integration with other disciplines as well, such as psychiatry in the case of Huntington’s disease, neuropsychiatry for some forms of motor neurone disease, or palliative care, which is really important, along with community services and implementation of the rehabilitation programme.

The Deputy is absolutely correct, therefore, that the focus on quality care is probably better mediated through the patient journey than through the sub-specialty or discipline. That is a significant challenge in Ireland because we are very siloed such that a neurologist might work in neurology in a hospital, for example, and therefore not in the community, and someone with a palliative care problem is not really considered to be that neurologist’s problem. In order for us to enhance how we deliver care, we need to consider the journey and the issue of the money following the patient. The work we are doing with the scheduled care transformation programme involves mapping that out. Deputy Cullinane asked about community diagnostics, and that is part of the solution. If a general practitioner can access diagnostics rapidly, that can significantly reduce the wait time in the case of somebody who may have an early diagnosis of multiple sclerosis, for example, or somebody who just has a headache and who may not need to come to a specialist service any more.

Examining the programme in the context of the money following the patient is what we are trying to do with respect to the scheduled care programme. It involves mapping out these four exemplars, namely, rare, ultra-rare, relatively common and common and capable of being managed in the community, and putting a price tag on them in order that we can work out the cost and work out where the resourcing should go in order that, ultimately, the money will follow the patient. That is the ultimate objective, in my opinion.