Workshop 5 - "The Norwegian Model"

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Workshop 5 - Brainstorming & Policy Development session: Social Aspects
"The Norwegian Model"
Lisen Mohr, Frambu, Norway

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  • I know that the European Union defines it as less than 5 per 10,000 I have brought with me some information folders translated to English which you can get from me. Rarelink is a link collection for rare diseases. This site is a useful source for highly qualified information aimed at both patients and experts.
  • Read some of the results from my papers
  • When it comes to PWS most babies get diagnosed at the hospital very soon after birth. I Norway we also are very lucky because we have a very strong and active PWS Association. The PWS Association and Frambu have close collaboration. The PWS-association is a very good model which some of the other rare diagnostics groups in Norway can learn from. Networking is extremely important for rare diseases.
  • When it comes to PWS most babies get diagnosed at the hospital very soon after birth. I Norway we also are very lucky because we have a very strong and active PWS Association. The PWS Association and Frambu have close collaboration. The PWS-association is a very good model which some of the other rare diagnostics groups in Norway can learn from. Networking is extremely important for rare diseases.
  • Workshop 5 - "The Norwegian Model"

    1. 1. The Norwegian Model Lisen J.Mohr Frambu
    2. 2. Norway
    3. 3. Rare disorders in Norway <ul><li>About 5 million people </li></ul><ul><li>A rare disorder as pr. the Norwegian definition are having a prevalence of 1 pr. 10 000 or less pr. diagnosis. In Norway, that means less than 500 people pr. group. </li></ul><ul><li>Some 30,000 people in Norway suffer from rare hereditary or congenital disorders. </li></ul><ul><li>There are 16 different Resource Centres for Rare Disorders in Norway. </li></ul><ul><li>Several of the other Resource Centres serve one or only a few rare disorders. </li></ul>
    4. 4. National plan for rare disorders <ul><li>An area of priority in governments plans of actions for disabled </li></ul><ul><li>1990-1993 and 1994-1997 </li></ul><ul><li>Followed up and developed to meet current needs </li></ul>
    5. 5. The Resource Centres <ul><li>Money for the centres are established via the state budget </li></ul><ul><li>Services have been established for 300 diseases </li></ul><ul><li>A reorganisation is on its way by the Ministery of Health </li></ul>
    6. 6. Specific resources for rare diseases are outlined <ul><li>Caregivers (parents)of patients with rare diseases are permited training allowance. </li></ul><ul><li>These are designated for parents to attend courses at a resource centre for rare diseases. </li></ul><ul><li>Neonatal screening is routinely performed for PKU and congenital hypothyroidism. A new screening programme is prepared to include 23 disorders will be in place from autumn 2011. </li></ul>
    7. 7. Individual Plan <ul><li>personal overall plan for service provisions </li></ul><ul><li>Particular relevant to patients with a rare disorder </li></ul><ul><li>The plan will contain an outline of the services the patients requires </li></ul>
    8. 8. The 16 Resource Centres <ul><li>Several give only service to one or two diagnoses </li></ul><ul><li>Some are connected to a hospital and others to a centre for learning/developing disorders </li></ul><ul><li>Some of the other centres are allowed to use the hotel accomodation at Frambu when they are arranging courses </li></ul>
    9. 9. Frambu offer assistance to about 100 different diagnosis. Frambu is the only one with a hotel accommodation
    10. 10. What do we do at Frambu? <ul><li>Residential courses </li></ul><ul><li>Communication and Documentation </li></ul><ul><li>Outreach activities in users local community </li></ul><ul><li>Research projects </li></ul><ul><li>Summer camps </li></ul>
    11. 11. IMPORTANT <ul><li>To meet others who are able to understand them </li></ul><ul><li>a very positive experience </li></ul><ul><li>Contacts made at Frambu / or other resource centres have proved to be very important  </li></ul>
    12. 12. Friends
    13. 13. What do we offer to our users? <ul><li>No medical </li></ul><ul><li>treatment </li></ul><ul><li>No individual </li></ul><ul><li>follow up </li></ul><ul><li>or therapy </li></ul>
    14. 14. But … <ul><li>Some medical examination </li></ul><ul><li>Some advice </li></ul><ul><li>Some ideas </li></ul><ul><li>Counselling </li></ul><ul><li>Adjustment for different activities </li></ul><ul><li>Lots of experience </li></ul>
    15. 15. What can our users do for us? <ul><li>How to live a life when you have a rare diagnose? </li></ul><ul><li>The best life in spite of having a rare diagnose </li></ul>
    16. 16. Different ways of telling their story
    17. 17. Information to the local community
    18. 18. <ul><li>The most important people </li></ul><ul><li>Concerning the everyday life </li></ul><ul><li>Motivation </li></ul><ul><li>Courage </li></ul>
    19. 19. They are a part of the society
    20. 20. Information <ul><li>About the diagnose </li></ul><ul><li>A team of medical doctor, physiotherapist, nutritionist, special educator </li></ul><ul><li>When a child is diagnosed someone from the team visit the parents </li></ul><ul><li>They visit the kindergarden, school, work </li></ul>
    21. 21. Open line
    22. 22. Studies in Living with a diagnose: <ul><li>The Couple </li></ul><ul><li>Adolecence </li></ul><ul><li>Schoolchildren </li></ul>
    23. 23. Research projects <ul><li>Rare disorders in Norway: A in-depth study of 94 persons of 8 different diagnostic groups is carried out on the behalf of the Norwegian Directorate of Health. </li></ul><ul><li>The aim of the study was to shed light on how these persons experience their own life situation and how they had been treated by the health services. </li></ul>
    24. 24. Rare Disorders Facing Mistrust And Lack Of Understanding <ul><li>” Living with a rare disorder is largely a matter of being believed and taken seriously. For many people, the national centres are a decisive factor in determining the quality of the help they are given at local level,&quot; says Lisbet Grut. SINTEF 2009 </li></ul><ul><li>http:// www.sintef.com </li></ul>
    25. 25. The situation in Norway for rare diseases <ul><li>We have to keep on working. Several says that it still takes long time for a rare diagnosis to be made. Many feel that they are left to face their problems alone. </li></ul><ul><li>Because personnel in the general health services seldom or never come in contact with rare disorders it is very important to have networks and resource centers for rare disorders </li></ul>
    26. 26. The situation in Norway for rare diseases <ul><li>We have to keep on working. Several says that it still takes long time for a rare diagnosis to be made. Many feel that they are left to face their problems alone. </li></ul><ul><li>Because personnel in the general health services seldom or never come in contact with rare disorders it is very important to have networks and resource centers for rare disorders </li></ul>
    27. 28. Thank you!

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