Oireachtas Joint and Select Committees

Thursday, 6 November 2014

Joint Oireachtas Committee on Health and Children

Deep Brain Stimulation Treatment: Discussion

11:25 am

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.

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