Patients and neurology specialists are campaigning for a surgical treatment for Parkinson's disease to be carried out here. Sylvia Thompson reports
Ann Keilthy (55) plans to do the Women's Mini Marathon this year. A sufferer of the neurological disorder, Parkinson's disease, since 1996, Keilthy was "cured" of the constant tremors in her arms and legs when she had surgical treatment known as deep brain stimulation four years ago.
Before the treatment, she says she couldn't walk without assistance. Nor could she do many household tasks and carrying a tray in a self-service restaurant was impossible.
"I lost my independence. I was 44 years old when I was diagnosed with Parkinson's disease. My younger daughter was 15 and one of the hardest things for me was that I couldn't even go to the parent/teacher meetings in her school."
Keilthy travelled to Bristol, England, to have the surgical procedure under the current scheme in which patients with Parkinson's disease are selected for treatment by their neurologist. They are funded by the Health Service Executive (HSE).
While happy with her own treatment, Keilthy is now campaigning with neurologists and neurosurgeons to have deep brain stimulation made available in Irish hospitals.
Keilthy, who is also a member of the Parkinson's Association of Ireland, says: "The improvement in my quality of life is enormous. I want every patient who will qualify for deep brain stimulation to be able to have it here. The problem with having it abroad is that you have to go back at six weeks, six months, one year and two years to have everything checked."
About 7,000 people in the State suffer from Parkinson's disease and deep brain stimulation is deemed suitable for 10-15 per cent of these patients.
Steven Young, neurosurgeon at the National Neurosurgical Unit in Beaumont Hospital, is adamant that deep brain stimulation could be carried out in Irish hospitals more cost-effectively than under the current scheme where patients are sent abroad for treatment.
"Neurologists have been campaigning for 10 years to have this introduced into Ireland. It is available in every other western European country, including Portugal which has a similar population base to Ireland. There are 250-300 patients with Parkinson's disease who would benefit from it right now."
He estimates that the equipment required for each deep brain stimulation implant would cost about €20,000 per patient.
Speaking about the surgical procedure itself, Young says, "It's technology-driven. The surgical procedure itself is easy and relies on the ability to localise the nucleus which needs to be stimulated. The key is that it requires a team of people including a neurologist who carefully selects the patients who are suitable for this form of treatment."
Studies have found that patients continue to benefit from deep brain stimulation 10 years after the implant has been put in place.
Drug therapy is the current treatment available here for those who suffer from Parkinson's disease.
Dr Tim Lynch is a neurologist who specialises in movement disorders at the Mater Hospital. He says the problem with drug therapy is that as symptoms get progressively worse, patients need more drugs.
"The drug therapies that are available are oral drugs, skin patches and subcutaneous pumps which are complemented by other medication." He estimates that annual drug costs are €20,000-€40,000 per patient.
While it is difficult to compare costs directly (surgical procedure requires the services of a multidisciplinary team and follow-up appointments), neurosurgeons and neurologists suggest that they could carry out deep brain stimulation procedures at lower costs than sending patients abroad for the procedure.
Ann Keilthy says: "In my case, I couldn't tolerate the gold standard drug therapy, levadopa [the drug which replaces the levels of brain hormone, dopamine, the reduction of which is responsible for the movement disorder] so I had no other option but to have deep brain stimulation. But most people with Parkinson's have problematic side effects from drug treatments."
Neurologists and neurosurgeons have approached the HSE with detailed reports on why deep brain stimulation should be introduced into Ireland.
"I would like to see it introduced into the National Neurosurgical Unit in Beaumont for all patients who need it," says Young. "The problem is that no one in the HSE seems to be pressing the button and saying start now. It's terribly frustrating."
Asked if there were any plans to introduce deep brain stimulation into Irish hospitals, a HSE spokeswoman said: "It is a recognised treatment with a good evidence base so there is a good case for introducing it into Ireland.
"There is an ongoing HSE assessment of neurology needs and there is greater demand for services for those with acquired brain injuries and other motor diseases," she says.
"It's a case of putting things in perspective and, for the moment, we will continue to fund treatment with deep brain stimulation abroad."