Parkinson’s disease and Deep Brain Stimulation (DBS) Treatment in Ireland
Joint Oireachtas Committee Presentation
6th November 2014
Executive Summary
The Parkinson’s Association of Ireland
Established in 1987 The Parkinson’s Association of Ireland (PAI) is the National Patient
Support organisation for people with Parkinson’s, their family, carers and others. PAI s made
up of a national Office, based in Dublin and 16 branches spread throughout the country.
We provide a range of services and supports and see our role as advocates for those people
with Parkinson’s and their families. Our aim is to Unify the 9,000 plus people in Ireland with
Parkinson’s disease under one umbrella creating a stronger voice.
This paper sets out why we as an association believe a centre of excellence for DBS in
Ireland is essential and cites some specific examples as well s facts and figures. As part of
our submission we will also have a recipient of DBS address the Oireachtas.
Facts and Figures:
Parkinson’s disease (PD) is the second common chronic neurodegenerative disease after
Alzheimer’s, and it is progressive and disabling in its development.
It is estimated that Parkinson’s disease affects 1-2:1,000 of the general population, affecting
more men than women. This can be further broken down to 2:100 of the elderly. Based on
these figures we can assume:
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9,000 people in Ireland,
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1.2 million people in Europe,
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6.3 million Worldwide
(EPDA, 2011).
What is DBS and why do we need a centre of excellence in Ireland?
DBS is a brain (neurological) treatment in which mild electrical signals stimulate certain
areas of your brain. It is used for the treatment of the Motor symptoms of Parkinson's, such
as tremor, rigidity, stiffness and walking problems. The procedure is used only for patients
whose symptoms cannot be adequately controlled with medications.
In Ireland we as a Patient support organisation are frustrated that Ireland is the only
European country that does not carry out this procedure. We have seen first-hand the
benefits of this treatment and constantly listen to testimonials of those who have received
the treatment. One person’s daughter who saw her mum after receiving the treatment said
“mammy you’re as good as new”. What better way to describe the impacts that this surgery
can have on a person and their family. People who before the procedure had very bad
tremor or great difficulty in moving are now able to move with a significantly higher level of
fluidity. Quality of life has been restored and the individual has been able to lead a more
normal life.
Let us be clear, DBS is not suitable for everyone. However, for those for whom it is suitable
not everyone can access this service due to personal constraints. The HIQA report carried
published in 2012 and referenced in detail in the main body of the document states that
whereas today we have approximately 13 people per annum receiving DBS overseas, this
number could rise to 19 if we carried out the service in Ireland. That is 6 people a year more
who would have a better quality of life.
Across our network of branches we have people waiting on treatment and in many cases
due to the costs of travel and bringing a partner along our branches would where possible
would provide additional support. If we had an all Ireland approach this would be one
burden lifted.
The HIQA report (2012) highlights that the benefits of a national DBS service would include
improving access to treatment for eligible patients who may not be able to travel to the UK.
The value of having a local service whether in Ireland North or South would ease somewhat
the logistical challenges in terms of accessing emergency support in case of adverse effects
or complications. This is assuming that the need to obtain TAS approval and arrange
overseas travel at short notice would be removed in the setting up of an all-Ireland service
based in the North.
Summary
A centre of excellence for DBS in Ireland will should not only allow increased numbers to be
treated enhancing quality of life but will, one would imagine enhance the overall service
including postoperative care. It is an opportunity for Ireland to step up to the mark and
provide the same service as our European neighbours. We have the medical expertise, some
of the best in Europe now we need to provide the infrastructure to deliver this.
Ends