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Danish ALS-counselors

Danish ALS-counselors. VI Nordic ALS Alliance meeting: ”Baltic Bridge” in Haapsalu, Estonia 20.-22.08-2010 By Jette Møller. Presentation. 2003-2007 An interview study on the choice of mechanical ventilation and coping strategies to people with MND 1996-2003 ALS-counselor

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Danish ALS-counselors

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  1. Danish ALS-counselors VI Nordic ALS Alliance meeting: ”Baltic Bridge” in Haapsalu, Estonia 20.-22.08-2010 By Jette Møller

  2. Presentation • 2003-2007 An interview study on the choice of mechanical ventilation and coping strategies to people with MND • 1996-2003 ALS-counselor • 1993-1996 establish support groups for people with ALS/MND • 1986-1993 Leader of two studies about ALS in Denmark • 1976-1993 counsellor for people with neuromuscular diseases incl. ALS/MND

  3. History • 1976-1984 few Persons with ALS used Muskelsvindfondens Guidens- and Treatment centre • ALS was Called “Galloping MS” and many patients were not told their diagnose • 1984 Muskelsvindfonden made the first folder about ALS • 1984-1988 about 50 new persons with ALS asked for help in “Muskelsvindfonden” • The counsellors knew very little about the special problems in ALS and needed more resources to cope with the speed of the progression of the disease

  4. More History • 1988-1996 Centre for Neuromuscular Diseases close for users with ALS • 1988-1992 Two ALS-studies were carried through. Both government supported • 1993-1996 a part-time ALS-counsellor in Muskelsvindfonden organized meetings for persons with ALS and their families in cooperation with members with ALS and hospital staff

  5. First Danish study about ALS • 1990 a study concluded that Denmark had good facilities to help people with ALS, but very little knowledge about the disease. • The study ended with a conference for the staff in neurological wards • Two books came out in Danish, one about the disease and the results from the study the other mainly about the disease and hospital support

  6. Study with ALS-teams • A study was made with two multidisciplinary ALS-teams. One in a university hospital, the other on in a smaller regional hospital. • After that ALS-teams were organized in connection to all neurological wads, where the patients were diagnosed

  7. ALS-counsellors • 1996-1999 first ALS-counselling scheme • 1999-2002 second ALS-counselling study • 2003 a permanent ALS-counsellor team were established in Rehabilitation Centre for Neuromuscular Diseases

  8. ALS-counselling team in RCfM • 2 Centers (Copenhagen and Aarhus) • 1 physician • 3 nurses • 2 + 1 parttime occupational therapists • 1 psychologist • 1 social worker • 2 part time secretaries • About 140 new users a year

  9. Visitation to RCfM • All persons with ALS who wants to be in contact with an ALS-councellor are referred to RCfM from the ALS-team or their private physician. • RCfM is a specialized hospital in the Danish Hospital system and free of charges for the users

  10. Home visits • The first meeting between the person with ALS and the ALS-counsellor is in the home of the person with ALS (and the family) • ALS-counselor is the guest • The family members tells what they think are the most important topics • The counsellor get some knowledge about how the family lives and how suitable the environment is for a person with physical disabilities

  11. Cooperating • At the first home-visit a representative from the local authorities will be invited • Agreements about future cooperating between the family, the local help-system and the ALS-counselor are made • The ALS-Counselor cooperates with the local authorities and the ALS-team in the hospital all trough the course of the disease

  12. Report • After the first home-visit the ALS-counselor writes a report with information about the disease, problems and resources in the family, the special needs for the person with ALS and the family • All agreements with the family and the local authorities are in the report • The report is send to the person with ALS to be accepted and corrected before it is send to all professionals involved in support and treatment

  13. Teaching • In all Danish communities are nurses, occupational therapists, physiotherapists, and other helpers to support people with disabilities to live in their private homes. • ALS-counselors teach these local professionals about the disease, the progression in ALS, and the special needs witch is connected with having the disease

  14. Coordinating • ALS-counselors participate in the ALS-team meetings in the hospitals in order to coordinate the support and treatment between the hospital and the community. • Because so many professionals are involved in supporting a person with ALS it is very important to have a local coordinator

  15. Family courses • Every year all new people with ALS- and their families are invited to at least one week-end course • The aim of the course is: • To meet others in a similar situation. • To learn about the help an compensation witch are available for people with ALS • To learn how others cope with the disease

  16. Theme days • Three days residential courses with a few families in similar situations • Families with young children • Still working businessmen with ALS • Bachelors with ALS

  17. ALS-support-groups • Regional day or evening meetings for persons with ALS, their spouses, children, helpers and professionals • Meeting-themes can be: • Communication • Respiratory support/mechanical ventilation • Helper systems • Transportation • Research • Christmas-meeting

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