Support Guidelines

National Credo for Support Groups

The Credo takes the place of a policy, as these are the ideals which the Foundation believes are relevant to assisting anyone suffering from Muscular Dystrophy or a Neuro Muscular Disorder. The Foundation will endeavor, at all times, to facilitate these ideals.

• Any person suffering from Muscular Dystrophy or a neuro muscular disorder in South Africa shall be regarded as a member of the Foundation.
  
• The Foundation must encourage branches to have as many support groups as needed and as can be serviced.
  
• Where possible, support groups should be disorder specific. Where numbers of affected persons of a specific disorder are few, General Support Groups should be formed. Within a General Support Group, if at all possible, age and interests should be addressed and approached separately.
  
• The Foundation, via the branches should provide a base for correct, up to date local and international information to be screened and passed on to members. The Branch offices could also provide venues for meetings or gatherings to be held, if premises are available.
  
• The Foundation will endeavor to provide funds for research and developing of procedures for diagnostic services and facilitate the performing of diagnostic services.
  
• The Foundation will facilitate the procurement of aids, devices, batteries, wheelchairs, motorised and manual, which will improve the quality of life of affected persons and strive to make them as comfortable and as independent as possible.
  
• The Foundation will endeavor to enable affected persons to attend courses to improve skills to enhance their work opportunities.
  
• The Foundation will at all times respect the privacy of the individual.
  
• The Foundation will facilitate training of the support group champions in order that they may provide non-directive and appropriate counselling.
  
• The Foundation will encourage support groups to validate and support the care-giver.
  
• The Foundation will endeavor to ensure that the affected person is clothed, fed, cared for, educated and mentally stimulated as a proud, independent member of the Muscular Dystrophy family and of society and in so doing will empower him/her to be a happy, confident individual.
  
• The Foundation will encourage Support Group members from all centres to meet telephonically or in person as often as is practically possible to facilitate understanding, growth and to exchange ideas.
  
• The Foundation should endeavor to communicate with Medical Aid Societies to facilitate optimum, improved benefits for affected persons.

Suggested Guidelines for running a Support Group

There is no one set way to start or run a support group

There are different approaches which will determine the start and growth of a Support Group. Whichever way is successful, is the correct way.

Motivation

Motivation however is the single element most needed by a leader and will determine the success of the Group.

Experience

The leader or facilitator needs to have knowledge of what affected persons are experiencing and of what lies ahead.

Facilitating Growth and Ensuring Confidentiality

Support groups could be started up simply by one person having the need for emotional support and reaching out to another person in similar circumstances. The elements are then in place for more people to join in and form a support group to grow in an environment of love, sharing and caring for each other.

Branches need to encourage contact between these persons and assist them to reach other similarly affected persons.

Where feasible support groups will focus primarily on obtaining research projects, diagnostic services and orthopaedic devices to assist their members.

The branch however may NEVER divulge personal information about members - but may only pass on the telephone number of the Support Group, allowing contact to be initiated by the affected person. The privacy of the individual is of prime importance and must always be respected.

Notices could be sent to special schools to circulate to parents about the existence of Support Groups and dates of future meetings. Community newspapers could also be used to advertise support meetings for adults.

The needs of the members of the Support Group will determine the path and the growth of the group.

Confidentiality on all levels of counselling is essential.

Basic Skills and Facilities Needed by a Support Group

• A motivated leader or facilitator.
  
• The leader should not be prescriptive but rather LISTEN to what the individual needs are and together they work out strategies to facilitate resolving problems.
  
• The group should have goals - both short term and long term.
  
• Correct, up to date information should be available to pass on to members.
  
• The leader should feel comfortable giving emotional support, but should not give directive counselling.
  
• The Branch should have knowledge of Doctors, Physios, Genetic Clinics, etc, available in the area who are best equipped to consult or advise and who have an understanding of the specific problems found in Muscular Dystrophy.
  
• Leaders should have access to regular counselling courses both for preparing them to deal with issues, professionally, as well as to allow for unburdening and re-energising themselves from time to time.
  
• Encourage and support the care-giver and find time to organise ‘time out’ for him/her.
  
• Be aware of needs of different family members and facilitate workshops/counselling courses where and when needed.
  
• Keep a database of suppliers of equipment, batteries, etc. and negotiate best prices through the branch and National Office when necessary.
  
• Keep a list of repairmen who are able to maintain equipment.
  
• Be aware of the needs of individual members.
  
• Keep a database of members, past and present and endeavour to keep in touch with individuals who may not at initial meeting or ever, want to be part of a support group.
  
• Upgraded fact sheets will be passed to Support Groups for members to read and for them to ensure that it can be clearly understood by everyone in the Group. Technical terms and phrases which might be difficult to understand should be highlighted and glossaries will be included with the fact sheet to facilitate better understanding on all levels.
  
• Identify and communicate their needs in relation to research projects, diagnostic services, orthopedic devices and financial requirements.

The above points are meant as a basic guide for Support Groups and as we know that the needs of the Support Groups will determine the direction and growth of such a group these points could be used as goals to work towards when starting up a Support Group.