Dr. Niall Pender:

There is a will. Most of the work with Huntington's disease patients in Ireland is done currently by way of goodwill among the people involved, including the clinicians. I still cannot understand how the Huntington's Disease Association does it on a day-and-a-half basis, as it is there for every patient we recommend to it. It is always there for people. Most of the services we provide in Beaumont are done through the goodwill of staff out of existing resources. People stay on late and come in early.

It is impossible to meet families affected by Huntington's disease and not be moved and want to help, but that only gets one so far. We need posts and people employed to provide the service. We need funding to set up a clinic where patients can see a dietician, a speech therapist and a physiotherapist who can look at their needs and monitor them as their disease stage changes. It will change at different rates. Sometimes a patient will need a psychiatric service, while at other times he or she will have movement issues, physical issues or dementia. In terms of the staging process, there will be many years when the patient will be well, depending on when he or she gets the gene tested. It is an astonishing burden to have to bear when, for example, one gets the genetic test in one's early 20s and is then waiting.

That in itself needs support for people who have to watch every twitch, fall and stumble, waiting for the disease to become apparent. After a test, a person may have five or ten years with emerging symptoms and maybe have another five years of care needs as their condition deteriorates. The life expectancy in care depends on the quality of the care. At the moment we do not have it. It is primitive and we need funding in this area.

We do not have a service in Cork. We suggest the best care model would be three clinics across the country, a model based on those in other jurisdictions. We are scrambling to get like-minded clinicians and others together while we get funding for posts and long-term care.