Ms Nicola Moore:

I am here representing Parkinson's UK and the nearly 4,000 in Northern Ireland who have Parkinson's. I will not go over all the information that has been given about the benefits of DBS and the difficulties that people with Parkinson's face, but will focus on what we would like to see from this. Parkinson's UK fully supports this proposal that we have an all-Ireland service for people living with Parkinson's, to have access to a very beneficial surgery. Ms Tufts has already spoken about what it was like to travel over to England and the committee will have read a story from Bill, a gentleman from the North of Ireland who has very complicated conditions as well as his Parkinson's. Through exceptional circumstances we were able to arrange for him to have DBS in Northern Ireland. If he had not been able to have it in Northern Ireland he would not have been able to go through with the surgery. He is in immense pain. He cannot leave the house on a normal basis. Even to contemplate travel anywhere outside Northern Ireland would have been impossible for him. Mr. Quigley carried out that procedure. Thankfully we could do that locally for Bill, but we are here to represent all the thousands of people who do not have that opportunity.

The stress that people undergo in travelling to England cannot be underestimated. If one sees someone with Parkinson's, one is generally seeing them on a good day. The days one does not see them are the days they are in the house and they cannot move. If we want people to be able to access this surgery, we must have equity across Ireland. As Mr. O'Rourke said, we are the only place in the EU that does not have access to this service. From a UK perspective, in Scotland alone, with a population that is over 1 million smaller, there are three centres operating DBS, while in Ireland we have none.

We cannot believe, in Parkinson's UK, that we are asking people who are already very unwell, unfit and sick, even to contemplate travelling to England. I have to do that regularly for work and it can be quite stressful getting through airports, etc. To expect anyone who is in any way poorly, not even to the extent of the people we represent, to even contemplate that is too much for them. Aside from the cost implications that Ms Tufts has mentioned for people in the South of Ireland, people just do not have access to that finance backing either.

We just want to ensure that people can access this service. There is a two-fold benefit; if we could have this service locally it would mean that people who either do not want to or physically cannot fly could access it, but it would also mean that we could save money. At the moment in Northern Ireland, we are paying for people to go to England for this surgery. There is an extortionate cost associated with that travel. Generally people are also unable to use public transport. On Tuesday we heard from a gentleman who must get up at four o'clock in the morning and, I hope Ms Tufts does not mind me sharing, but if one is travelling at that time one must get up a few hours earlier to take one's medication to be able to get out of bed, to get to the door, and to get to the airport. This gentleman then had a 16-hour day to travel to England for one day, for assessment or surgery or whatever he needed. It is not fair to ask people to do that.

We have talked about new patients and putting new patients through the surgery here in Ireland but we also have many legacy patients for post-operative care, battery changes, and all the things associated with the surgery. The committee will have read from Ms Tuft's story the amount of time she and her husband spent in England and the cost associated with that - a week for surgery, coming back for assessment, a one year review, a two and three year review, and coming up to her five year review. We are expecting people to travel for these considerable amounts of time, away from family and friends. That is also a problem for the carer or the person accompanying the patient - they are on their own. There is no support for them and there are complications associated with the DBS.

As Mr. Quigley said, this could actually save money. We are paying to have people go for this surgery outside Ireland. If we were to provide the service here, we would save money. Most importantly from our perspective, we would also reduce the undue pressure and stress placed on people when they were expected to travel to England.