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.