Dr. Gavin Quigley:

I thank the committee for the invitation. I am a consultant neurosurgeon in Belfast along with my colleague, Dr. Neil Simms. There are two of us in Belfast. I am unique in that I worked in Beaumont Hospital in Dublin for three years as a consultant and therefore have a reasonable understanding of the way things work here.

Some of the points I wish to make have already been alluded to. Essentially, deep brain stimulation is a reversible procedure. Historically, we performed lesions in the brain. We put electrodes in, heated them up and burnt the area of the brain that we believed we did not need. The problem with that is self-evident. If one happens to be burnt in the wrong place or if the lesion is made too big or small, there is a problem. Deep brain stimulation is reversible. It is not a cure and we are not suggesting it is, but there is a very good evidence base for the procedure.

Members will see the photographs that have been provided. Neurologists such as Dr. Walsh will select patients who are willing to come forward and we will talk to them. What we really need are patients who are motivated to have the procedure because it requires quite a lot of effort on the patient’s part. One can see from the photographs that the patients are fixed in a box, and we make it into a three-dimensional box. We get an X-Y-Z co-ordinate and we are able to pick our target. The problem is that our target is quite small. For Parkinson’s disease, it is probably 4 mm by 7 mm so we need good imaging and some time to perform the procedure. The procedure itself is not a huge technical challenge but one has to get the electrode in the right place.

One will see from other photographs that what I describe is essentially what all the patients listed have gone through. They have a frame attached and electrodes inserted in their brain. Members will see a picture of the device and that is pretty much what gets implanted inside every patient. There is a battery, two extension leads and two leads that go into the brain. The batteries can be rechargeable or non-rechargable. The latter clearly need maintenance and to be replaced, and the patients are currently going back and forward to have this done every three to five years.

The committee will see a picture on the slide of what, in essence, is implanted. The patients have a programmer and they can turn their stimulator on and off. We can check the settings on that and find out whether the batteries need replacing.

It is difficult to give an exact number of people affected. We do not have robust population data; we have best estimates. We anticipate as neurosurgeons that between 18 and 25 patients in Northern Ireland would be suitable, and there should be about 40 to 60 people in the Republic who are suitable for deep brain stimulation. We know that patients do not come forward. That has been alluded to before. Patients are reluctant to come forward because they know they will have to travel. That is true of both jurisdictions.

Some of the information on this slide has already been covered. It is a very standard treatment, with a strong evidence base. There is class 1 randomised control trial evidence; this is not something new or experimental. The island is the largest region in the EU that does not perform deep brain stimulation surgery. There are 6 million people on this island who do not have access to deep brain stimulation services. At present, both jurisdictions send patients to providers in Great Britain. I deal with patients in Northern Ireland who cannot travel, so I am dealing with the most complex cases. Over the summer we have replaced batteries for about seven patients from the Republic who were not able to travel for various reasons. It is relatively straightforward for us to do that. The surgical results in Great Britain are excellent. There is no criticism here of Bristol, Oxford or London. They have a fantastic service that works well, but the practical difficulties for the patients are enormous.

In essence, we are proposing a North-South collaboration. We propose that patients would undergo surgery in the Royal Victoria Hospital in Belfast, but the work-up and the ongoing assessment would be with their neurologist, close to home. We anticipate that centres like Cork, Galway, Dublin and Sligo would have a network of nurses who would be able to look after these people and the neurologist would have access not only to the settings, but also the medication and where the leads are. When batteries need to be replaced, it would be a simple matter of emailing and we could bring the patient up and replace the batteries. There would be routine data collection. The data is relatively straightforward - there is a set assessment protocol and clear rating scales for Parkinson's, dystonia or tremor patients who come to surgery. Patients are recorded on video, rated and scored, they have surgery and it is repeated in a year. There is nowhere to hide from the surgical results. I cannot fake my surgical results; they are obvious to everyone. We hope to have yearly meetings where we could present in rotation around the country, Belfast, Dublin, Galway and Cork. We can come forward and present our results and everybody will have access to that data.

What Dr. Walsh and I are asking for, in some ways, is some nursing support, to co-ordinate the service. That is the most important thing. The patients need access to someone they know who can organise battery replacements and changes in medication. They need a way of getting to that. With the numbers we are talking about, we are looking to develop a second surgical centre in the medium term, as numbers increase. That would most likely be Dublin. If we have the infrastructure in place it would be relatively straightforward to separate the population into those two centres. There would also be a huge cost saving. We have already worked with the HSE to look at the figures and we anticipate that it would cost about 20% less per patient to come to Belfast and have the surgery. There is a reduction not only in the length of the patient's travel but also the costs associated with that travel. There is much easier access whenever there is a problem. There are two surgeons. We would have the infrastructure in place to do that. We anticipate that people like Dr. Walsh would have their own data. They would have the surgical settings, where the leads are, and what the programming is. They would not need to contact us. Overall the service would be safe and sustainable.