Claudia Grave Spokeswoman for parents of children with rheumatic diseases
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Transcript of Claudia Grave Spokeswoman for parents of children with rheumatic diseases
Up date Rheumatic League Germany, Kosice/Slovakia 09-2004
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Claudia Grave
Spokeswoman for parents of children with rheumatic diseases
„Up date“ Kosice 2004
What has happened within the parents groups of the German Rheumatic League since our last meeeeting at Stresa 2003?
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The parents groups were founded in 1980 in order to give help and
information for parents of children with arthritis
We are part of the German Rheumatic League, which is the largest
national voluntary association within Germany (about 250.000
members)
About 140 parents are „working“ on the local level
Three parents on the national level
And five „Rheumafooner“ (special telephon advisers)
Assisted by some professionals, the groups are running by parents,
honouraryly
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What did we do 2003/2004
1. Public Relation work
Website
Logo
New booklets
newsletter
Preparation of a campaign starting now in september:
„school is starting-for children with arthritis, too
2. Activities because of a change in our social system
3. Participation on 5th P.A.I.N workshop
4. Jubilee: 10 years rehabilitation for children with rheumatic diseases
5. Workshop for spokeswomen and spokesmen
6. Education weekends
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Within the last year we did a lot of Public Relation work
Revision of our website
• It is now much more clear
• Much more easier to use
• Special rubric for journalists
It leeds to a lot more visitors on our website
www.rheuma-liga.de
1. Public Relation Work
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New booklets
Parents for parents
Natural science
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Social system
Nutrition in rheumatic diseases
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Newsletter calling „Aktiv“ (Active)“
The newsletter will be published twice a year and shall inform
journalists, polticians, sponsors about the activities of the
GRL.
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„School has been starting –
for children with arthritis, too
under this topic we prepeared a campaign
from 13.-25. september in order to pay more
attention to children with arthritis at school.
Included into this campaign there will be
an internet forum whre everybody can ask
a question to physicians, health professionals
and parents.
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Within the beginning of 2004 we had an important change in our
social system as well for inpatient as outpatient.
In community with this change are a lot of cuts of the medical care.
Therefore we had/have to fight against a change for the worse for
children with rheumatic diseases.
2. Activities against a change to the worse for children with rheumatic diseases because of a nwe social system
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A very important change are the DRGs (diagnostic related groups).
Hospitals will be paid a specific, predetermined amount for each
Patient.
The amount which will be paid depends primarily on the diagnosis into which the patientis classified.
This system (coming from Australia) can leed to an insuffcient care
of children with rheumatic diseases, because the amount for children
is the same as for adults but the costs are higher.
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3. Participation in P.A.I.N workshop
(Pain Associates‘ International Network)
The fifth international P.A.I.N. Workshop (Pain Associates’
International Network) took place from the 9th to 12th May 2004 in
Valencia, Spain.
It was organised in co-operation with the „Sociedad Española
del Dolor“ (SED).
Participants were European physicians, health care
professionals with different specialisations, quality managers,
pain patients and media.
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A main objective of P.A.I.N is to establish and consolidate an
international network of persons being involved in the
treatment of pain and palliative care as e.g.
professionals, patients, healthcare officials, pain organisations
and media.
The general aim of the workshop in Valencia was to elaborate
a practical, internationally valid and outcome-oriented
management concept regarding age-related pain in children
and the elderly, which can be used for the improvement of
pain management processes in clinical practice.
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The results of P.A.I.N. 5 will be published and should
motivate professionals and patients to develop their own
improvement measures by using the described techniques.
Everybody, who is interested can look at
www.pain-workshop.com
were you can find the first draft in discussion.
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4. Ten years with rehabilitation programmes, especially for children with rheumatic diseases
In Germany we created a special rehabilitation for schoolmates with rheumatic dieseases
They can participate in the programme every year
for three weeks during school holidays.
They are accompanied by a paediatric rheumatologist and health care professionals specialised for rh. d.
They also get the special education programme (see later)
And they have a lot of fun!
The rehabilitation is organized by the German Rheumatic League of Brandenburg
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5. Workshop for spokeswomen and spokesmen
Every year there is a meeting of parents speakers
One speaker from every county as well as physicians, psychologists and/or socialworkers from the paediatric rheumatism centers come together.
One year parents and young people with rheumatism are participating together the other year parents and young people are seperated.
In november 2003 parents and social workers met for the
topic: Counselling and supervising
These meetings are also very important in order change experience of our work within the social league.
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6. Education weekends
Again we organized three education weekends for families
We are educating in three different groups
• Parents
• Children
• Juveniles
Every weekend includes two modules
1: What means rheumatism in childhood
2: How to treat rheumatism in childhood
3: Physiotherapy
4: Occupational therapy
5: Psychological support
6: Social system