What is H.A.S. SSO?
During the Greek National Stoke Conference 2016, organized by the Hellenic Society of Cerebrovascular Diseases, in Thessaloniki Greece, the stroke patient organization held the first ever platform meeting on calling for better stroke care and prevention across Greece. H.A.S. SSO (Hellenic Alliance/Action for Stroke - Stroke Support Organization) was established as a member of the Stroke Alliance for Europe, SAFE (1) with the major goal of echoing a national awareness campaign on primary prevention and treatment of stroke to avoid needless mortality long-term impairments, and discrimination as well as mandate better stroke training for the community at large.
The
organization emphasizes the cooperation of local, state services and to meet
the ongoing needs of individuals in order to unify those individuals with
stroke as well as family members. Emphasis is on support outreach and promotion
of scientific research on stroke, on the field of prevention, treatment,
rehabilitation and quality of life issues (2,3,4) including quality of
communication (5).
Following the regional meeting of SAFE in Athens 2016,
H.A.S. continues to develop with aims to establish good communication and
cooperation between members, to exchange experiences, views and knowledge in
order to disseminate this information throughout the county. To achieve these
goals participation in a wide variety of activities- stroke related internet
based support group (6), lectures, speeches, conferences, debate, seminars and
social events should be mandated. Online social support groups, are more
preferred even from live groups (7,8). With web-based supportive intervention,
care givers are more informed about disorders and could more effectively
communicate with their stroke patients as well as their family.
H.A.S. hopes to open up a discussion about establishing
guidelines and a new framework for the Greek government and spread good
practice with regard to prevention of Stroke and ways of helping individuals
with strokes and their families once it has occurred. One area of immediate
importance is to apply pressure for better organization of the treatment of
strokes because, in Greece, the development of STROKE UNITS is particularly low
and there are currently very few of them throughout the country. Issues of
concern for H.A.S. are that it is unlikely that any major investments in Greece
can be made in the next few years, in view of the recent crisis and capital
controls.
Furthermore, group support is not common practice and/or
non-existent throughout the country. This creates “lack of trust” and hinders
further involvement in the organization’s structure and activities, which
overall results in difficulty in achieving unitary health care. Thus, a better
sense of community as it relates to stroke is on the agenda. These as well as
cultural differences should be taken under formal consideration.
Establishing a support forum is a big challenge for the
nation and even more so globally. This forum may be expanded on in other
countries where such structures do not exist. Compare corresponding findings
and knowledge to Balkan and Mediterranean countries, like Spain, Portugal,
Italy in the area and internationally and enhance its broad application. This
is especially viable for other countries that do not have established stroke
guidelines. It is important to emphasis
the improvement of prevention and quality of care will reduce the physical,
mental social as well as financial costs of stroke for the country and Europe.
References
(1) Levy S. SAFE: The Stroke Alliance for Europe. Sandra
Levy. 2010 International Journal of Stroke, World Stroke Organization Vol 5,
December 2010, 483.
(2) Kontodimopoulos, N., Niakas, D. & Pappa, E.
(2005). Validating and norming of the Greek SF-36 health Survey. Quality of
Life Research, 14, 1433-1438.
(3) Lin, K.C., Fu, T., Wu, C.Y., Hsieh, C.J. (2011). Assessing
the Stroke-Specific Quality of Life for Outcome Measurement in Stroke
Rehabilitation: Minimal Detectable Change and Clinically Important Difference.
Health and Quality of Life Outcomes, 9, 5-13.
(4) Carod-Artal,
F.J., Egibo, J.A. (2009). Quality of Life after Stroke: The Importance of a
Good Recovery. Cerebrovascular Diseases, 27(1), 204-214.
(5) Paul DR, Frattali CM, Holland AL, Thompson CK,
Caperton CJ, Slater SC. (2004) The American Speech-Language-Hearing Association
Quality of Communication Life Scale (QCL): Manual. American
Speech-Language-Hearing Association; Rockville
(6) E.P. Kouki,
M.H. Kosmidis, H. Proios, The usefulness of Facebook or Website for Information
about Aphasia, Encephalos, 53, p.76-83, 2016.
(7) De Simoni Anna, Shanks, Andrew, Chantal
Balasooriya-Smeekens, Mant, Jonathan, Stroke survivors and their families
receive information and support on an individual basis from online forum:
descriptive analysis of a population of 2348 patients and qualitative study of
a sample of participants. BMJ journal, Volume 6, Issue 4, e010501; D01:10.
(8) Rosa Spierings, Andre. Burden of Stroke Board
Meeting, short presentation, Amsterdam 2016.
