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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?. Claudia Grave Spokeswoman for parents of children with rheumatic diseases.

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Claudia Grave Spokeswoman for parents of children with rheumatic diseases

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  1. „Up date“ Kosice 2004 What has happened within the parents groups of the German Rheumatic League since our last meeeeting at Stresa 2003? Claudia Grave Spokeswoman for parents of children with rheumatic diseases Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  2. 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 Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  3. 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 Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  4. 1. Public Relation Work • 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 Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  5. New logo Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  6. New booklets Natural science Parents for parents Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  7. Nutrition in rheumatic diseases Social system Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  8. Newsletter calling „Aktiv“ (Active)“ The newsletter will be published twice a year and shall inform journalists, polticians, sponsors about the activities of the GRL. Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  9. „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. Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  10. 2. Activities against a change to the worse for children with rheumatic diseases because of a nwe social system 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. Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  11. 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. Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  12. 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. Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  13. 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. Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  14. 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. Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  15. 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 Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  16. 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. Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

  17. 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 Up date Rheumatic League Germany, Kosice/Slovakia 09-2004

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