Professor Orla Hardiman:

We have thought a lot about this in the context of the scheduled care transformation programme. In fact, we have been working with Dr. Siobhán Ní Bhriain, the clinical lead in integrated care, on identifying the pathways. We have set ourselves the task of mapping out pathways for rare neurological diseases. We have mapped out the motor neurone disease pathway because it is well established, although it still requires some resourcing.

The pathway for Huntington's disease and other rare conditions - and we are using Huntington's disease as an exemplar- is much more complicated for a number of reasons. The services that are required are cross-disciplinary and across a number of different funding structures within the HSE, which is very challenging. Huntington's disease also comes in under the young onset dementia programme, which is under the remit of the National Dementia Office. In our consideration of what this might look like, one of the things has been to really determine the need to establish a working group with all of the stakeholders. That would include the National Dementia Office, the neurology clinical lead, me, representatives from psychiatric services that are hospital-based and community-based, genomics, representatives from the national genetics programme, representatives from palliative care and, finally, representatives from the national physical and sensory disability programme, because with Huntington's disease and similar conditions, where there is a progressive degeneration there is also a need for long-term care. Many of these people are under the age of 65. The resourcing that is required comes out of the national physical and sensory disability pot of money, which is under the control of the local regional disability managers and which means that there is a limit to that money.

In order for us to develop a programme that is meaningful and impactful, we need to look at the overall cost to manage somebody with a condition like Huntington's disease from the time that he or she is pre-symptomatic and has a gene variant that we know is going to cause the disease, right the way through to end of life. That is a very big programme that requires many different stakeholders. It is possible. We could certainly map it out and we could definitely put a price tag on it. However, the challenge is going to be how to resource that in the current iteration of resourcing within the health sector, which is, unfortunately, not yet that the money follows the patient, it is being able to dip in an doubt of the various different funding pots that are available, and that leads to many tragic situations. In conversation with the Deputy, we elucidated one very tragic story of a young man who has fallen out of the system and has nowhere to go. There is no funding for him to go into long-term care in an appropriate setting.

I suggest that we ask this committee to think about these types of overarching strategic developments that would require multiple stakeholders. We have the support of my colleague, the lead in integrated care, Dr. Siobhán Ní Bhriain, in this regard to set up a working group with very clear terms of reference, timelines and deliverables to come out with a plan and a price in terms of what it would look like to provide an integrated service for people with Huntington's disease.

in the context of Huntington's disease, there is a charitable entity, Bloomfield Health Services, which is located in Deputy Lahart's constituency. Bloomfield has expertise in dealing with the later stages of Huntington's disease. We need a system within neurology to allow us to develop high-level service level agreements at national level. I know from my conversation with representatives from the IMNDA that there is a service level agreement which the IMNDA has with the authorities in Dublin north, but the service and reach are national. If we are going to do this effectively, we should have a HSE system whereby we can generate an overarching service level agreement with the expert entities that are outside the HSE system but within the voluntary sector, yet are proven to have an expertise and a skill set that is beneficial to patients. That is very difficult to establish at the moment with the structures we have.

There are two things. One is to develop a system where we commit to the money following the patient, where we can map out what needs to happen and identify a funding source that does not involve seven or eight different funding structures. The second is where the expertise is available but not within the public sector but within the charitable sector that we can access that expertise with an overarching service level agreement. Those are the two take-homes from this meeting that I would like to leave with the committee, in addition to the messaging around nurse specialists. It is the integration of delivery of care between the service that I provide, as a public HSE-funded practitioner, and the integration that I have in my practice as a representative with the voluntary sector.