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.