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 • 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

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

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

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

• 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

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

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. Communication2. Respiratory support/mechanical ventilation3. Helper systems4. Transportation5. Research 6. Christmas-meeting