Mr. Pat O'Rourke:

The Parkinson's Association of Ireland would like to thank those who have organised this meeting. We greatly appreciate the opportunity to put forward, on behalf of people with Parkinson's disease, the particular issues affecting them. I will give a little background on the association. It was established in 1987 and has headquarters in Carmichael House. We operate with 16 branches throughout the country. Nationally we are involved in providing a helpline service five days per week. We are also involved in assisting the funding of nurse specialists who provide a service in various hospitals, in addition to a telephone service. We are very conscious of the fact that we do not receive any Government supports so all the initiatives we are involved in must be carried out through fund-raising. At branch level, our volunteers provide a vast range of services that enhance the day-to-day well-being of people with Parkinson's disease. It is the job of our association to be the voice of those with the disease and their families.

As an association representing people with Parkinson's disease, it is important that we anticipate the evolving incidence of the disease.

The first challenge and source of frustration we have as an organisation is that it is not currently possible to state definitively how many people are affected by Parkinson's disease. However, we work according to the percentage of the population who develop the disease. This measure has been used in other countries. Based on this, it is estimated that in the Twenty-six Counties there are 9,000 people affected. On the island of Ireland as a whole, there are between 10,000 and 12,000 affected, and some 1.2 million people are affected throughout Europe. Worldwide, there are 6.3 million affected. Therefore, the disease is significant both nationally and globally.

The incidence of the disease, based on analysis carried out, is such that it affects over 0.4% of people over 40, 1% of people over 60 and 2% to 3% of those over 65. Generally there is a higher proportion of male sufferers than female sufferers. It is important that in planning for the future, we assume those figures will increase based on extended life expectancy.

We fully support the concept of deep brain stimulation. We have listened to the stories of lay people who have benefited from it. The daughter of a person whose mother received the treatment said, "Mummy, you are as good as new". That clearly indicates the impact at individual level. What better way to describe the impact of surgery than to point to a person who is able to regain dignity and quality of life? As part of our presentation today, we have brought along a patient who has received the treatment and who will talk at first hand about the benefits of receiving deep brain stimulation.

Another example of the benefits of deep brain stimulation is based on a patient who received the treatment recently and who works in a voluntary capacity in the head office of the Parkinson's Association of Ireland. This would not have been possible had the surgery not been carried out. As stated, deep brain stimulation is not suitable for everyone. However, for those for whom it is identified as suitable there is very compelling evidence to suggest their having to travel for treatment is a considerable impediment. HIQA and others have identified that if we had an all-Ireland centre of excellence, the number receiving deep brain stimulation at present, amounting to 13, would increase to 19. That has been proven beyond any shadow of doubt. That is the challenge. Obviously, when the service would be developed, more would avail of it.

The Parkinson's Association of Ireland would welcome any initiative that would bring deep brain stimulation treatment to more people in Ireland who could benefit from it. We have seen at first hand, and will later hear at first hand, the benefit. While we understand there is an additional cost, we urge the committee to bear in mind the quality of life for people living with a debilitating disease such as Parkinson's disease. As stated, by having the service I describe in Ireland, we could potentially increase the number of patients receiving the treatment by in excess of 50%. As the number of people with Parkinson's disease will increase, there will be more need for this life-changing surgery. Would it not be better, therefore, to have it available on the island of Ireland? A centre of excellence in Ireland is possible and the relevant expertise exists. We believe in and support enthusiastically such an initiative. Why is Ireland the only country in Europe that does not provide deep brain stimulation? We have the necessary medical expertise and believe it is the best in Europe, so we hope today will start the initiative whereby the infrastructure will be made available on the island of Ireland.

I will hand over to Ms Breda Tufts to outline her experience.