Joint Committee on Health and Children debate -
Thursday, 6 Nov 2014

Deep Brain Stimulation Treatment: Discussion

Chairman

This second session is a discussion of the benefits of deep brain stimulation treatment. I welcome our witnesses and guests. I ask witnesses and those in the Visitors Gallery to ensure that mobile phones have been switched off as, even when in silent mode, they interfere with the broadcasting of the proceedings.

I welcome all our witnesses who have travelled to be here. I acknowledge and thank Deputy Ó Caoláin for his contribution and assistance in helping to arrange this session and for his proposal for the work programme. Dr. Tony O'Connell and Ms Angela Fitzgerald from the HSE were invited to attend the committee, but due to an unavoidable calendar clash with another meeting in this building, they have had to forgo attending this meeting. They have agreed to attend another meeting on either 27 November or 4 December to discuss this issue. They send their apologies to members.

I welcome Mr. Gavin Quigley, consultant neurosurgeon, Royal Victoria Hospital, Belfast; Ms Nicola Moore, country director, Northern Ireland, for Parkinson's UK; Dr. Richard Walsh, consultant neurologist and clinical senior lecturer, Tallaght hospital; Mr. Pat O'Rourke, chairman, Parkinson's Association of Ireland; Ms Breda Tufts, a recipient of deep brain stimulation treatment. The committee appreciates that the witnesses have taken the time to attend this meeting.

I advise the witnesses that, by virtue of section 17(2)(l) of the Defamation Act 2009, they are protected by absolute privilege in respect of their evidence to this committee. If they are directed by the committee to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given. They are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing ruling of the Chair to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable.

Dr. Richard Walsh

I thank the committee for the invitation to speak about the benefits of introducing deep brain stimulation to Ireland, which I strongly support on behalf of my colleagues and the patients we treat.

Deep brain stimulation is a treatment for movement disorders.

These are a group of neurological conditions that result in loss of normal voluntary movement, which is something we all take for granted. These disorders manifest in a loss of movement or excessive involuntary movement, and in the extreme examples which we see in our clinics, loss of independence and loss of normal integration into family life and society.

We have learned over the past 20 years that we can treat these disorders using deep brain stimulation. This is using very discretely delivered small amounts of electricity to discrete areas of the brain which can modulate abnormal circuits which are misbehaving in these conditions to produce these symptoms.

Parkinson's disease is probably the condition that is most well associated with deep brain stimulation in the public eye. Parkinson's disease affects probably in excess of 8,000 persons in Ireland at present. Approximately one third of these patients have what we would call advanced Parkinson's disease. This is a form of the disease that no longer responds to the medicines we have in a reliable and predictable fashion and these patients often spend many hours a day where they are unable to move and many hours when they have excessive involuntary movements. Deep brain stimulation can smooth out the roller-coaster these patients experience throughout the day to return them to normal occupational activity and normal integration within society. There are significant advantages on personal and societal levels.

There are alternatives to deep brain stimulation. There are pump therapies that the HSE quite correctly funds within Ireland. We must carefully select which patients are most suitable for pump therapies, where drugs are pumped in throughout the day through the abdomen through the skin, or for deep brain stimulation. The committee will see from the submission documents that over a five-year period, in a diagram from a Spanish study from 2013, the cumulative cost of these pump-based therapies is significantly more than that of deep brain stimulation and it is not true to consider deep brain stimulation as an excessively expensive therapy. There is certainly an upfront cost in developing a centre, but the cumulative cost is significantly less than the alternative pump-based therapies. One could consider this therapy paying for itself after two years because we can reduce drug costs by between 50% and 60% after surgery.

Essential tremor is another common movement disorder that we can treat effectively with our neurosurgical colleagues with deep brain stimulation. This is a common movement disorder. Approximately 1% of the population, maybe 5% of those over 65 years, are affected by essential tremor. This is a movement disorder that affects hand movements, often to a disabling degree for some patients who present to our clinics. These patients often cannot write their name. They have difficulty brushing their teeth and shaving. They cannot hold a glass or cup without spilling, and often drink using a straw. The patients who are most severely affected are significantly disabled and rely on assistance from carers or family. We can say to these patients that they will improve in the order of 50% to 70% with deep brain stimulation, a compelling indication for this surgery in patients who are most severely affected.

The third condition I will mention today is dystonia. This is a less common disorder, but no less disabling. Approximately 3,000 persons in Ireland are affected by dystonia. It affects one in young life or in older years. In children who are affected, it often affects their entire body. Dystonia is a syndrome of involuntary muscle contraction and spasms that twists part or all of the body into involuntary postures and movements which are disabling. In children, it can give rise to skeletal malformations as a result of these involuntary movements, bed sores and, in the most extreme example, complete dependence. In older life, we see persons with a focal dystonia affecting one part of the body, most commonly the neck. The committee will see from the documents in front of us examples of a gentleman with a generalised dystonia pulling his neck into painful maladaptive postures and a lady with cervical dystonia - she had 20 years where she could not look straight ahead or to the right. Both of these patients whom I cared for in a different country underwent deep brain stimulation and the committee will see, from the subsequent photographs available, that the gentleman, above, had a striking benefit two and a half years after deep brain stimulation and the lady had normal head posture 12 years after deep brain stimulation.

I hope I have been able to show the committee there are compelling and evidence-based indications for deep brain stimulation. Currently, in the Republic of Ireland we do not have access to deep brain stimulation. Our neurosurgical centres are not resourced for it and we do not have surgeons performing this surgery on a regular basis. Hence, there is a good rationale for looking at an all-island approach because in Belfast there is a neurosurgical centre and surgeons, such as Mr. Quigley, who are performing these surgeries already. There is a rational argument to be made for looking at this on a more Thirty-two County level where we can provide a surgery for these patients.

At present, we are sending our patients abroad. These are patients who find it difficult to walk from the hospital waiting room into my consulting room because of their disability and we are asking them to take a pilgrimage four or five times to in the United Kingdom with a carer at considerable personal inconvenience and cost. They visit good centres in the United Kingdom but it is a stressful situation for them to have to undertake. They travel back and forth by plane, with flights often booked at the last minute at significant expense, and stay in the United Kingdom centres to undergo assessments and post-operative programming, which is a large part of the procedure.

What is more difficult and distressing as a neurologist treating these patients, and no less for the patients themselves, is where they run into post-operative complications. If their battery fails, they get post-operative infections or there is a lead failure, there is a scramble to contact the neurosurgical centre to get them over. We have to scramble to get E112 treatment abroad approval. The patient sometimes sits in an accident and emergency department, in Dublin or elsewhere in the country, waiting for this urgent transfer to the United Kingdom. This is really not satisfactory. We are delighted to work with our colleagues in the United Kingdom but, taken in the whole, it is not satisfactory for either neurologists or patients.

I would submit to the committee that the ideal situation is an Irish movement of neurologists, of which we have a large number now trained within the country who are adept and experienced in dealing with these conditions. They would work with colleagues in Belfast and, I hope in the medium term, in Dublin or Cork, in centres where the service is provided in a multidisciplinary fashion. We could meet our surgeons instead of working blindly in a parallel fashion with neurosurgeons in the UK. If post-operative complications occur, we can pick up the telephone and speak to a surgeon, such as Mr. Quigley, and say a patient is in trouble and request that he be brought up today. That would happen and then we could manage the complications efficiently and compassionately for the patients with problems.

There are rational arguments to be made for the Thirty-two County solution. We have a critical mass of neurologists and neurosurgeons who can provide the service. Undoubtedly, if the service became available in Ireland, patients now not undergoing the procedure would do so. Since 1997, we have sent about 150 patients for the treatment. A conservative estimate is that two to three times that number would benefit greatly from the procedure. Local awareness of the procedure would undoubtedly bring people into the sphere of treatment who are currently not receiving it.

It is critical that we bear in mind that deep brain stimulation is not a new or experimental therapy. It is well evidence based. It is expanding exponentially through a number of different indications, outside movement disorders into the management of pain, epilepsy and even cognitive disorders, such as Alzheimer's disease. Interesting information is emerging from research in this area. It is important that we realise we are left behind within the sphere of deep brain stimulation and thus we are doing a disservice to our patients for the future. I will be happy to take any questions.

Ms Sian Muldowney

We work across the north and south inner city to provide a range of services, including after-school programmes, employment supports, jobseeker assistance, adult education services, breakfast clubs, drug addiction services and senior citizen supports. We also work with tenants in local authority flat complexes and manage community employment, Tús and job initiative schemes. We look after community buildings and community spaces and provide crèches, early childhood education services, supports for migrants in new communities, youth services and community training centres. These are just the 15 projects organised within the co-operative.

Chairman

I welcome Mr. Pat O'Rourke, chairman of the Parkinson's Association of Ireland, and invite him to make his presentation.

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.

Chairman

I welcome Ms Tufts and thank her for being here.

Ms Breda Tufts

I will give a brief note about my journey. I am 72 years of age and was diagnosed in 1998 at the age of 56. I suffered from a very severe tremor in my left arm and left side of my body. Initially this tremor was controlled by medication but as the years went by, despite increases in the medication, the tremors continued and the disease was progressing.

In 2009, 11 years after diagnosis, my consultant, Dr. Brian Sweeney, put forward the idea of deep brain stimulation, which neither my husband nor I had ever heard of. However, I had total belief in Dr. Sweeney and, following my decision to go this route, I was called to Frenchay Hospital, Bristol, for an assessment in October 2009. The assessment involved a two-night stay in the hospital. Having met neurosurgeon Steven Gill and his team, I had total confidence and had surgery in December 2009. The surgery was extremely successful and my medication was reduced immediately. I am extremely privileged to have been selected for deep brain stimulation.

The downside to having the surgery abroad is the immense stress involved. This arises from the travelling, the cost of accommodation and the possibility that the surgery could be cancelled for some reason or other - for example, if a bed is not available. I will not go into detail on the numerous journeys to Bristol for follow-up assessments as the members already have it in the documentation.

I am very fortunate to have the financial means, in addition to the emotional and practical support, needed to cope with the stress involved. However, we are both getting older and the fear is always present that travel overseas might not be possible. I am awaiting dates for my five-year assessment, and my pacemaker is due for renewal in the next few months. It would massively reduce worry and stress if one could sit in a car and drive to a centre of excellence in Ireland.

Having spoken to others, I am aware that some people have difficulties finding somebody to accompany them. It must be very difficult and distressing having to go through such an ordeal alone. Expense is also a factor. While I am extremely grateful, I am fully aware that the costs involved in deep brain stimulation, accommodation, travel, etc., all add up to a fairly significant outlay.

There would be a medical benefit to having the procedure carried out in Ireland in that the reprogramming of my stimulator would be so much more effective without the time constraints associated with having the procedure carried out in the United Kingdom. One gets a limited amount of time at Frenchay and no real time to evaluate and rebalance one’s new settings with the re-introduction of the medication.

Chairman

I sincerely thank Ms Tufts for her very powerful testimony.

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.

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.

Chairman

I will give the perspective of the committee before asking members to speak. We will reflect on the presentations and suggestions made. To be fair to the delegates in advance of the question and answer session, the proposal made merits consideration by the committee in private session at its next meeting. We need to reflect on how we approach the matter in the light of the compelling argument made. While I do not want to prejudge what other members might say, I thank our guests for the sobering presentations they have made.

Deputy Caoimhghín Ó Caoláin

It has been a great privilege and honour to hear the respective contributions of the delegates. It is the culmination of some work done by a small group of people. I thank the members of the committee who have been hugely supportive since the proposition to meet the delegates and hear what they had to say was first posed. I say this sincerely because Government and Opposition Members of both the Seanad and the Dáil are present in this small number. I thank all of them sincerely.

I heard a fine tribute to Mr. Quigley in the course of the contributions made earlier. Mr. Pat O'Rourke referred to him as the best in Europe. That has to apply to Mr. Quigley, his colleague and team at the Royal Victoria Hospital. I would have no other view and nobody should. It would be absolutely wonderful if this facility could be sited in the second city on the island. All of the reports have been hugely complimentary and encouraging.

I wish to put a number of questions from a layperson's position. At what point in the life passage of a person dealing with Parkinson's disease, essential tremor or dystonia is it deemed most appropriate for him or her to access deep brain stimulation? Perhaps we will focus on Parkinson's disease initially, as its greater prevalence means that it accounts for the greater number of those who would benefit most from deep brain stimulation. Is there a profile of who is the most suitable? I address that question not only to Mr. Quigley but also to the other panellists. The Chairman will ask each of them to respond at the end. Can they give us a sense of whether there is a particular point in the life experience of someone dealing and coping with Parkinson's disease at which deep brain stimulation becomes most appropriate?

I would like to ask about the costs and savings in the health budget. It was suggested a saving of some 20% in the cost of the procedure would result if it were located here on the island of Ireland, as against having to access it overseas. The NHS is applicable in the Six-Counties on the north of the island. In that sense, I presume it is open to all patients. Perhaps Dr. Walsh and Mr. O'Rourke might tell us what the position is here. Is it covered for medical card holders under the terms of the HSE? Will they profile those domiciled in the State who can access deep brain stimulation? Is it a private commitment only that is covered, or is it covered under the general medical services scheme? Is that another complication we would have to address?

Ms Tufts has highlighted that if this happens, not only will there be a saving in the health budget but there will also have to be significant savings for individuals and families. This aspect of the matter has come across in each of the contributions made. Would any of the panel like to comment further on this aspect?

I would like to return to the question of the number of people travelling to Britain from the North and the South. I want to get a sense of the number of people who are accessing deep brain stimulation outside the island of Ireland. Are there locations other than Britain providing deep brain stimulation services to people resident on the island of Ireland? If so, perhaps it is more likely that the people in question come from this part of the island than from the North. I am not sure if that is the case.

I would like to ask Mr. Quigley about the capacity of the Royal Victoria Hospital. What would he expect? Obviously, it stands unquestioned that there would be a greater take-up if the opportunity were to be provided here on the island of Ireland when it would become much more affordable. What does he expect the potential annual throughput would be? What level does he expect the hospital to cope with in the initial period and over a period of years? How soon could we expect this proposal to come to fruition and be delivered on? How quickly could we move on it? Dr. Tony O'Connell, the national director of acute hospital services, and the assistant national director have apologised for being unable to attend this meeting. Unfortunately, they are both at another location in this institution this morning. We were hoping they would be with us, but all of the indications from a HSE perspective are very positive, which is very encouraging. Do the delegates have any sense or idea of how quickly this proposal could come to pass?

Would it be possible for Dr. Walsh to expand on the point made on greater male prevalence? Why is the prevalence of Parkinsonism greater among males than among females? Will Dr. Walsh indicate what percentage of those with Parkinsonism are males and what percentage are females?

I heard the points made about opening other locations on the island of Ireland in the medium to longer term. Initially, the critical point is to have the service started. The Royal Victoria Hospital is prepared and ready and clearly has the support of its professional counterparts throughout the island of Ireland. I look forward to hearing the further contributions of Dr. O'Connell, engaging with the committee and encouraging the Minister, the Department of Health and the HSE to engage at the earliest opportunity with their counterparts north of the Border.

I was taken by the recent decisions of the new Minister for Health on the provision of cardiac services for children north of the Border. More and more, people are thinking on an all-island basis when responding to the health needs of the people for whom this island is home. That is a very wise step for all of us to take. I hope that, in this instance, we can provide a further example of the benefits of such an approach that can accrue for each and every one of us.

I would like to conclude by reiterating that Ms Tufts has made a wonderful contribution to the meeting. I thank her and her husband, Christopher, for joining us. I know that it was suggested she was going to make a little demonstration. I do not know whether she would like to do so, but we will leave it to her to make that call. Perhaps the Chairman might invite her to do so at some point. I again thank Mr. Quigley, Ms Moore, Mr. O'Rourke, Dr. Walsh and Ms Tufts.

Senator Jillian van Turnhout

I thank all of the delegates. I did not know anything about this issue until last week when Deputy Caoimhghín Ó Caoláin gave us some advance information to help us to prepare for this meeting. I found the presentations very compelling at a medical and personal level. I would like to add two questions to the serious questions asked by Deputy Caoimhghín Ó Caoláin.

As I listened to the presentations I kept wondering why Ireland was the only EU country that did not offer this service. Why is it not happening here? That seems to be an obvious question. Where is the blockage? Is it the case that Ireland was late coming to and understanding the issue? I do not understand why it is the last country in the European Union not to provide deep brain stimulation services.

The deputation has made a good case for advancing on these issues on an all-island basis, which makes absolute sense. Airports are only for those who are fit and healthy. A person has to be in the best of health before any travel. Where there medical issues involved, it is difficult not only for the person concerned but also for the family. There is often nervousness and the question of what if something should happen. I am wondering about the current position. Ms Tufts referred to travelling to Bristol. On the basis of probability, some people will encounter difficulty. What happens if a person has a difficulty after coming back? That is all the more reason we should be doing it here. I am a little stunned to find that people have to do this and obviously the deputation has my full support. We will do whatever we can to help. Perhaps we might discuss the issue in private session.

Chairman

Deputy Dan Neville has conveyed his apologies. He had to leave to attend another meeting. Before I call Senator Colm Burke, I welcome Mr. Tufts who is in the Visitors Gallery, as well as Mr. Oliver McKenna and Ms Eithne McKenna.

Senator Colm Burke

I thank the deputations for their comprehensive presentations. As someone who had to travel to the United Kingdom for medical treatment, I have an idea of what it is like. In many ways, it is a lonely journey. A person needs a good deal of support and I fully understand from where people are coming in that regard.

The HIQA health technology assessment of 2012 suggested the upfront cost was too high for the service to be established in Ireland. Have we moved on from that assessment? What are the upfront costs? When that assessment was made, was it purely from the point of view of providing a service in the Twenty-six Counties? We are now discussing adopting a Thirty-two Counties approach, which is obviously the most logical way of dealing with the matter. Taking this into account, can we get over the hurdle where in 2012 the service was identified as not being cost-effective? By approaching the matter in the way we are approaching it, are we able to get over this problem?

Reference has been made to the upfront costs and the need for additional staff. What are the numbers of additional staff required? Is the expertise available in Ireland or is it a case of having to recruit from outside it? Do we need medical and nursing staff or nursing staff alone? We seem to have a good deal of medical expertise, but what else do we need? When will we have all of this information? The 2012 analysis presents a problem in the sense that it in writing. We have to get over that problem. The presentations were comprehensive and persuasive. This is about ensuring we can use the process for people's benefit and to develop a service. Perhaps we might receive some clarification on the matter.

Deputy Catherine Byrne

Again this morning we have the privilege of listening to the contributions of a group of people who have made a presentation on the impact on their personal lives, in particular Ms Tufts. I had to go outside for a while, but I have read about her journey to freedom, Her journey has given her the ability to perform in her daily life, which is wonderful. It involved a great deal of travelling, which was most inappropriate. That much jumped out at me last night.

I thank Mr. Quigley and Ms Moore for joining us and taking time out of their busy schedules to be here in Dublin. It is a real privilege to have them here and hear that we have such wonderful people, North and South, who have such a great interest in the issue.

In the past year a friend of mine was diagnosed with Parkinson's disease and I know that it has affected her greatly. It has also affected her family. Like Senator Jillian van Turnhout, I was rather surprised to hear of such a thing; I had never come across it before. Since I am not in the medical profession, some of these things slip away. When we are worrying about housing people and everything else, it is lost in the mix.

I thank Dr. Walsh for his presentation, particularly the diagrams, as sometimes a picture paints 1,000 words. That is certainly the case in this instance and it shows what can happen when people have this treatment.

Some of these questions may have been asked already, but how many patients travel from Ireland, if any? What is the cost and is it covered by the HSE? I think that question may have been asked by someone else. The deputation stated it was not a cure and although it may not be, it helps people in their daily lives. What are the risks involved in the surgery and can it be used on children? Who chooses the patients to undergo the treatment?

Senator John Crown

I welcome our guests. I am sorry I did not hear their presentations.

There is a great logic to trying to undertake several initiatives on an all-island basis. I will be a little partisan. I want to ensure we have not been put on too much of a long finger in the South by the authorities in the HSE. I would have guessed from what the deputations have stated that, in truth, the population of the South was probably be large enough to sustain a unit of this kind. There is a logic to it and we will be supportive of it, but it says more about a country that is so desperately short of neurologists, neurosurgeons and neurology services. We have heard about it this morning. We have hospitals to which people with head trauma can go and never see a neurosurgeon. We have unconscionable waiting lists. Perhaps Dr. Walsh might give me a quick thumbnail.

I will finish with a question that I ask with boring regularity of all our guests. Approximately what is the ratio of neurologists per head of population in Ireland, the United Kingdom and internationally? It tends to follow a trend.

Deputy Sandra McLellan

I thank the deputation for its presentation. It was the second to be made today and extremely compelling and very emotional. In particular, I thank Ms Tufts for relaying her personal story. When we hear someone's personal story, it brings it home to us. She painted a picture of sick people travelling abroad, depending on others to travel with them and having to foot the bills themselves. What happens to those who cannot afford to travel and do not have the means to do so? What is the cost of ongoing medication treatment for those who cannot afford to access this service? If people could access the service, would there be cost savings? What happens to those who receive initial treatment and then, owing to a change in circumstances, perhaps financial, health-related or otherwise, are unable to return to the United Kingdom?

I wish to highlight the issue of voluntarism. We seem to have a great number of fantastic volunteers within services here; this is certainly true in the case of Parkinson's disease.

Reference was made to the 2012 HIQA health technology assessment. Aside from the fact that the report stated it would be cheaper to send people abroad, it also stated it would place extra demands on existing resources. Like Senator Colm Burke, I am keen to know if the position has changed since 2012.

Chairman

We will start with Mr. Quigley and work back across the table.

Mr. Gavin Quigley

I will leave the issue of when to Dr. Walsh.

Reference was made to the cost saving involved. We are not allowed to make a profit in the NHS. That is certainly the case in Belfast. That leads me somewhat to the HIQA report, in respect of which I played a part. Fundamentally, the problem is the unit cost - the cost of staff here. Staff costs are high in comparison with those in Belfast, Bristol and London. Part of the reason is the starting point here is more expensive. The cost of devices is largely the same.

That is why it is cheaper in Belfast. They pay me less. It is covered in terms of the medical card. Patients can go and the HSE funds that.

In respect of the numbers, I always work on a guesstimate. For every million people, about ten people with Parkinson's tremor or dystonia are suitable for surgery, regardless of whether they come forward and have it. That is the best guess - somewhere between ten and 15 per million.

In respect of capacity for the Royal Victoria Hospital, it should not make any significant difference to my service. We initially proposed to treat ten patients from Dublin, look at them after a year, make sure that everybody was happy, the surgical results were good enough and the neurologists here were happy, and then try to roll that out. Most of the work up would be done locally so the assessment and pre-operative screening would all be done in Dublin. Professor Tim Lynch is not here. He and I have been working to try to push this forward for about five years. Professor Lynch has been the driving force for much of this. The idea would be that patients would be worked up locally, there would be a set protocol that they would follow and, ultimately, I or Mr. Neil Simms would come and meet them in Dublin, so we would save them the initial journey as well. We would meet them, speak to them and go through the surgery. They would come up, have their surgery and go home. People like Dr. Walsh would do the programming and we would divest ourselves of that so that we are pushing the control of the patients back towards the local neurologist. In terms of bed implications, we are probably talking about a five-day stay in the Royal Victoria Hospital. I do not think this will have a huge impact on the numbers we are talking about.

Conceivably, I could start ramping up to do it next week if that was the desire but it really is not an issue. The infrastructure exists in the Royal Victoria Hospital and we do not need equipment, staff or anything like that. However, we do need two nurses to co-ordinate things in order that we have one North and one South who would be responsible for assessments, following up patients, looking up data and making sure the whole thing is co-ordinated.

The all-Ireland solution would be a means to dividing the country in two in terms of population because we undoubtedly have the numbers for two centres. I think Senator Crown alluded to it as well. Even if one divided the country in half, one has three million for each centre and a sustainable population at that level.

Why has this not happened previously in Ireland? That is my answer. I did not really have one. Historically, we provided lesioning surgery in Belfast and, as deep brain stimulation came in, the surgeon who did that retired. I was off training in places like Liverpool. When I came to Dublin, it seemed to be expensive and there was a reluctance to do it. Dr. Walsh might allude to it. Most of the neurologists have been away to do this in their work in Dublin.

What happens if patients get into trouble? Currently, there are many phone calls. The trouble mostly arises over Christmas and bank holidays. It involves things like a battery going flat and how to get it replaced. The logistics of having to book a flight for the following Tuesday to get from Galway to Bristol are very difficult. We have certainly had phone calls over the summer. We just brought the patient straight up to Belfast and fixed the battery and the patient was able to go home the next day. It should be relatively straightforward.

Surgical risks include a risk of stroke. Bleeding can occur when the electrode is put in. The risk is probably less than 1%. Wound infection is the largest single problem because one is putting something foreign under the skin. There is possibly a 2% to 4% risk of infection. That is where a local surgeon is easier because one can easily let someone have a look at it. If someone has to go all the way back to Bristol to be told their wound looks fine, it is a pointless journey. I think those are probably all the questions I can answer.

Most of the children with dystonia, to whom Dr. Walsh alluded, are currently being sent over to Evelina London Children's Hospital, which is part of Guy's and St Thomas' NHS Foundation Trust. Again, this is probably something that is going to expand. We have a children's hospital on site. It is something we can gear up to do but, ideally, that is something for the future. It is probably best at this point for them to be sent to Guy's.

The neurologists choose patients. I am a technician in all of this. The neurologists are the ones who own the patients. They look after them, deal with them and change their medication. In general, the less surgical interference with that, the better

Ms Nicola Moore

I think Mr. Quigley has answered more questions than I could answer. I will clarify a point made by Ms Tufts about having to pay for travel or additional costs. There is a bit of a difference with Northern Ireland in that this is covered for patients if they need accommodation and all the extra costs are covered. There is that outstanding question of what happens if people cannot afford to travel.

Mr. Pat O'Rourke

I will not repeat answers to questions. From a patient's perspective, the key message we would hope to convey today, particularly with Ms Tufts, is what I would describe as home and away. It is challenging for the patient if there are technical difficulties and this is compounded if they have to travel abroad to get treatment as well as the fact that there is a procedure relating to the treatment abroad scheme. This is an added challenge.

The other area I would like to expand concerns volunteerism. Any organisation advocating on behalf of its members looks to see about getting Government support in the Departments and association, both North and South. We must bridge the gap on the basis of nurse specialists. There are a number of areas that we, as an organisation that collects donations from the public, co-fund because we see the need. While it would be fine if we could wait for Government support, what happens in the intervening period if the patients need it today? As a result, we have also provided training for nurse specialists in order that they are in a position to do that. The key driving force in respect of deep brain stimulation is that anybody who sees it can see the huge benefits and the improvement in the quality of life. It is frustrating when one sees that it is possible to do it. Of all the analyses and presentations, an all-Ireland approach is the best way because more people will benefit on the basis of cost. A question was asked whether we could do it in the Republic of Ireland alone. Yes, we would have done so but when one brings the two together, one has scale, the economics and a centre of excellence from which everybody will benefit.

Dr. Richard Walsh

I will deal with questions that were not dealt with previously. They concerned Parkinson's disease, demographics and patient selection. There was an interesting question about the male-female divide. The simple answer is that we do not know. There is a lot we do not understand about Parkinson's disease and about why the ratio of male to female is nearly 1.5 to 1. We do not understand whether it is due to hormonal factors. We see that a lot in medicine when we may see male or female problems. I must plead ignorance on that interesting question but there are many ongoing studies into the influence of hormones and disease penetrance and manifestations.

We certainly see a lot of Parkinson's disease. In my clinic yesterday, I saw three new diagnoses of patients. This is because we are seeing the population hump within the Republic of Ireland and presumably in Northern Ireland as well moving in that direction. It is a neurodegenerative disease so it is a disease of older age and a disease where we see lots of neurons at a faster rate than expected in normal ageing. With our ageing population, we are going to see the numbers of patients with Parkinson's disease probably double by 2030. It is imperative that we look to provide rapidly a service for this condition and other neurodegenerative conditions because we are going to see the resource requirement increase significantly.

Thankfully, not all patients with Parkinson's disease need deep brain stimulation. Probably only about 5% might require it. The one good thing we can say about the therapies we have for Parkinson's disease is that they work quite well early on. Typically, patients will respond very nicely to the medicines that are available in Ireland. Thankfully, we have access to all available therapies.

There is a subset of patients for whom their response to medicine becomes erratic and unpredictable. Typically, by the time we consider discussing so-called advanced therapies they will have reached the scenario where they take their tablet at 9 o'clock, it takes them until 10 o'clock before they can put my trousers on, so they have an hour of good time where they can run around the house and do some housework. However, by 11 o'clock they notice themselves slowing down and the tremors returning, but by watching the clock they know their next pill is at 12 o'clock. People fit their basic activities of daily living around small hour-long periods while they take their tablets every two and half to three hours. It is to that kind of patient we are saying they need to move beyond tablets and it is when we think of the pump therapies such as Levadopa-carbidopa intestinal gels. A pump therapy can be infused through the abdomen or subcutaneous apomorphine. There is a discussion to be had as to who is suited to which type of therapies.

Deep brain stimulation can be done through two pump therapies. To benefit from deep brain stimulation, generally patients need to be younger than 70 years and need to have very few thinking complications as a result of the disease. Patients who have some thinking complications as a result of Parkinson's can do worse after therapy. Therefore, patients need to have less thinking complications and take their tablets frequently. That is the kind of patient who is suitable for deep brain stimulation.

A question was asked about the cost of alternatives. The upfront cost is broadly similar in the first year. Pump therapies vary between €27,000 and €37,000 for the first year. An important fact to remember is that the cost is a year-on-year recurring cost as long as the patient requires treatment. In the first year deep brain stimulation is a little more expensive in terms of the cost of a surgical episode. Mr. Quigley can tell us a little more about the detailed costings. I wish to emphasise that this is a once-off cost. The therapy results in a reduction in medication which means there is an inherent yearly saving. Batteries must be replaced - which is an additional but smaller surgical cost - after three to five years.

In terms of access and payment for deep brain stimulation, thankfully it is available for all patients. Private insurers cover the cost or some of the cost of deep brain stimulation. The HSE pays upfront for those patients and it recoups the cost. Thankfully, whether a patient is a public or private patient does not act as a barrier to access.

As will be familiar to many Members, access to the treatment is the main barrier in Ireland. There is a huge waiting list to gain access to a neurologist in Ireland. As Senator Crown asked about it, the ratio of neurologist to population is awfully poor here. There has been investment over the past five years. Thankfully, I am one of the recently qualified neurologists who managed to be included in the latest group of neurologists recruited. The unpublished 2002 Comhairle na nOspidéal report recommended one neurologist for every 100,000 population. That ratio would be inadequate and we are well beyond it. We probably only have one neurologist for every 150,000 here while in the UK there is one neurologist for every 30,000, depending on the region.

Like many of my colleagues who trained in North America, the Toronto hospital that I trained in had more neurologists and MRI scanners than we have in the whole of Ireland. We are woefully under-resourced here. It is unacceptable to wait a year or two years to see a neurologist to check for Parkinson's and a raft of other neurological conditions. We need to boost the number of neurologists.

In many areas of medicine, once a patient is in the system in Ireland, he or she does quite well in terms of the treatments we have available. The key access piece is where we fail.

As we have said, deep brain stimulation is not available in Ireland. A question was asked about why it was not developed. That is probably due to a number of issues. I am sure resources again are the bottom line. Historically, the two neurological centres, one in Dublin and one in Cork, have been under-resourced. There is a huge amount of daily work spent dealing with head traumas and tumour cases. I am sure a large part of this problem is due to the staff and resources not being available to provide deep brain stimulation. That is why we have tended to export the problem and why we are here seeking for it to be brought back to Ireland.

As I said in my statement, we must ensure our neurosurgical trainees and trainee neurologists are trained to provide this treatment. Until we have it in Ireland we will never train our local neurologists and neurosurgeons to deal with it and access will continue to be a problem.

Patients in trouble are the last thing I will mention. As has been mentioned before, it is a very difficult scenario when a patient who has had deep brain stimulation gets into trouble. Last Tuesday I experienced this scenario in my clinic because a patient arrived who had received deep brain stimulation for a particular condition. His battery had failed and I had no idea from the medical notes what operation he had received and no idea of the battery's settings. The battery had failed and could not be read. I had to spend two hours in my busy outpatients clinic trying to contact the surgical centre in the UK where the patient was treated. They were very helpful once we had made contact and the patient will now be dealt with in the UK centre. It was a very stressful situation for the patient and it was very time consuming for me to deal with it. It would have been great if I could have contacted a surgeon like Mr. Quigley or one of his colleagues to see the patient on the same day. It would have meant the situation could have been dealt with in far more efficiently. This is a non-argument because everyone would agree this is what should be doing here in Ireland.

Mr. Pat O'Rourke

I want to add a supplementary comment from an awareness point of view. We really appreciate this opportunity to put forward the needs of people with Parkinson's. I wish to highlight how dependent patients are on medication and it has become quite clear that medication is essential.

A number of patients have informed us that when they go into hospitals for a routine procedure, such as to repair a broken ankle or whatever, hospital policy is to withdraw all medication, which leads to horrendous consequences. The medication regime for people with Parkinson's needs to be understood by hospitals when they treat patients for other ailments. We have launched a campaign called "Meds on Time - Every Time" and we want the policy applied to nursing homes and general hospitals. We have heard about a very disturbing case where a person went into hospital with a broken ankle but was taken off medication. Clearly, there was no understanding of the importance of the medication because the patient fell out of bed and dislocated a shoulder. This issue is about awareness, and incidents like the one I have outlined should not happen. The Parkinson's associations of Northern Ireland, here and the UK are highlighting the issue.

I thank the Chairman for the opportunity to present and to increase awareness among the members, as legislators, about what we believe would enhance quality of life for people diagnosed with Parkinson's.

Chairman

Ms Tufts will have the final word.

Ms Breda Tufts

I was asked about turning off my stimulator. I have never turned it off except in a hospital situation. Does the committee wish to see my brain stimulator?

Chairman

I thank Ms Tufts for the offer but we completely understood what she said. I thank each and every one of the witnesses for being here and participating in a very informative, educational and awareness raising session. I also thank Deputy Ó Caoláin for his contribution. Does he wish to make a final remark?

Deputy Caoimhghín Ó Caoláin

I join all my colleagues in thanking each of the witnesses for their presence. I hope our question to Ms Tufts was not upsetting. We had been given to understand she might demonstrate the machine but I fully understand, appreciate and accept her explanation. It is wonderful that she was able to make her presentation. The manner in which she has done so is sufficient evidence for any of us here. I thank her so much.

Ms Breda Tufts

I thank the Deputy.

Deputy Caoimhghín Ó Caoláin

I wish the Parkinson's associations, North and South, every success in their continuing work on behalf of this very special cohort of our shared population across this island. I believe the Chairman made a little request earlier.

Chairman

Yes. It has been arranged to take a photograph at 1 p.m. on the plinth, so I suggest we leave here.

Deputy Caoimhghín Ó Caoláin

I can inform our guests that the plinth is the raised area located at the front of the building.

Chairman

Next Thursday we will have our quarterly meeting with the Minister for Children and Youth Affairs. I also remind members that the Select Sub-committee on Children and Youth Affairs will meet next Tuesday at 5.30 p.m. to discuss and probe legislation entitled the Protection of Children's Health (Tobacco Smoke in Mechanically Propelled Vehicles) Bill 2012.

The joint committee adjourned at 12.50 p.m. until 11.30 a.m. on Thursday, 13 November 2014.