The EPDA continues
to develop initiatives that improve quality of life.
The main focus of the EPDA
is to listen to the needs of the People with Parkinson's and their
families and to develop projects based on those needs. The influence of
the EPDA is the demonstration projects.
These projects gather the evidence
that persuade policy makers to effect the change necessary to improve
participation in life, some of which have been replicated in several
countries around the world:
- Evaluation of Physical
Therapies
- Economic and Emotional Cost of Care
- Flexicard (in 8 languages)
- Global Parkinson's Disease Survey (GPDS)
- Quality of Life Art Competition
- INFOPARK
- Participation in Life Survey
- PD MED
- Parkinson's CD ROM and Self care Manual
- Patient Information Leaflets (series of six)
- Younger People with Parkinson's Quality of Life
survey
What can we continue to do?
-
Ask people with Parkinson's and their carers what they need from
neurological services.
It is a key step to improving the management of Parkinson's, but one,
which is generally forgotten by healthcare planners. There have been
enormous shifts in patterns of care of chronic disease over the past
few years.
-
Encourage people to participate in the management of their illness,
which they can do, but only if provided with accurate information.
-
Focus more sharply on families
affected by neurological disorders so that their needs can be met
appropriately. Demographic changes mean that Parkinson's is set to
become more common with the rise in the number of elderly, putting even
more pressure on carers. By the year 2010, there will be one million
people over the age of 85 in the UK alone - and over half of these will
be unable to walk unaided and one in five will be demented. Populations
are living longer, and with old age come frailty and more evidence of
long-term neurological illnesses.
-
Combine
the knowledge and clinical observations of the healthcare professionals
with the experiences of those people living with, and impacted by,
chronic neurological conditions.
It is only then
that it will be possible to achieve an integrated picture of the
challenges of managing a chronic neurological illness such as
Parkinson's.
Gather Evidence. We need to gather the
evidence, which
will encourage our governments to look at the costs of care, so that
they can distribute services appropriately and where they are most
needed.
-
Change attitudes
This
is dependent upon education and training and it is vital for future
development that expertise is shared and that collaboration and
strategic alliances are encouraged. We can no longer work in isolation.
-
Develop strategic alliances that effect change
During
the last 7 years close partnerships have been forged between many
organisations: the World Health Organisation, World Federation of
Neurology, World Parkinson's Disease Societies, Asia Pacific Rim,
Movement Disorder Society (MDS), International Council of Nurses (ICN),
European Federation of Neurological Societies (EFNS), European Brain
Council (EBC), European Federation of Neurological Associations (EFNA),
healthcare professionals, pharmaceutical industry
-
Work together and share expertise.
In this way it is possible to effect the change necessary to
improve participation in life.
The EPDA takes this opportunity of wishing great success to all the
people and organisations that are preparing events to celebrate World
Parkinson's Disease Day and thank you for your continued efforts to
raise the profile and enhance public awareness.