Danish ALS-counselors VI Nordic ALS Alliance meeting: ”Baltic Bridge” in Haapsalu, Estonia By Jette Møller

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

History 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 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

More History Centre for Neuromuscular Diseases close for users with ALS Two ALS-studies were carried through. Both government supported 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

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

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

ALS-counsellors first ALS-counselling scheme second ALS-counselling study 2003 a permanent ALS-counsellor team were established in Rehabilitation Centre for Neuromuscular Diseases

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

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

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

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

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

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

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

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

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

ALS-support-groups Regional day or evening meetings for persons with ALS, their spouses, children, helpers and professionals Meeting-themes can be: 1.Communication 2.Respiratory support/mechanical ventilation 3.Helper systems 4.Transportation 5. Research 6.Christmas-meeting