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 logo


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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

claudia grave spokeswoman for parents of children with rheumatic diseases

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