Guidance on setting up a rare disorder support group

What is a support group?

A rare disorder support group is a gathering of interested people who come together on a regular basis to provide a support network. This allows people dealing with similar challenges to share information, knowledge and support.

Support groups can be based in a specific city or town and focus on a defined rare disease. There may be options to group together similar disorders that have overlapping features. A support group may be unable to meet easily but can still connect regularly using technology.

Benefits of a rare disorders support group

  • Sense of connection/fulfilling the need for belonging to a community
  • Being understood by others who ‘Get It’ as they have been there; sharing experiences of real life situations
  • Offering each other support and strategies for wellbeing; creating a central place to gather and share information
  • Sense of reward from helping others
  • Increased feeling of control over your situation
  • Meet new people, feel less isolated and alone
  • Feel better equipped to support friends or family with the condition

Setting up a support group (1)

Important considerations for setting up your new support group include:

Who

  • Who is the group for? Who can attend? Are support people such as partners and children able to attend?
  • If the main facilitator is not available who will cover? Can you plan to train another member to take on this role?

Why

  • Are you clear about what the proposed group is going to do? Do you have a clear group vision and intention? What do you want to accomplish? A support group should not be used as a therapy group unless it is led by a health professional.
  • Have you checked whether there is somebody already doing this? Could you connect with them and perhaps develop or add to its work? Setting up and running a support group takes time and effort so if you can partner with an established organisation this may make things simpler. Check with NZORD’s directory of current rare disease groups in NZ to see if there are other groups operating (2).

Where and when

  • Frequency and time: How often do you want to meet? What time of the day will the group meet, what suits the members most?
  • Location: Where will you meet? Is there parking available? Does it have heating/cooling system installed? Church halls, community centres, schools, cafes, schools, sports clubs, local libraries are all options to investigate.
  • Accessibility: Is the location accessible to all members, does it have accessible toilets?
  • Security: Does the location have good security, well-lit during winter and have an alarm system?
  • Refreshments: Do you wish to serve refreshments or shared food at mid-point or following meeting?

Planning and structure

How

  • Constitution: There are many ways of constituting an organisation (establishing a body with formal rules). Thinking ahead to what can work best for your group will minimise complications later. It makes sense to keep things as informal as possible in the early stages then you can investigate registration options as things take off. For example, will an informal unincorporated group be sufficient? Or will you need something more formal, such as an unincorporated group with detailed written rules, or an incorporated society, or a trust? Other options include: incorporated societies, trusts, charitable trust boards, companies, etc. (3)
  • Charitable trust: Do you want to become a charity? Are you aware of the legal obligations involved? Charities Services offer a thorough checklist and online navigator to determine if becoming a charity is the right option for your group (4,5). This free assessment shows a group’s strengths and weaknesses through looking at areas of direction, governance, leadership, people, administration, finances, communication, evaluation and relationships.
  • Finding members: There are many ways to spread the word about your group, you can register with NZORD and be added to our support group directory. You may choose to use flyers, notice boards, social media, personal invitation or let key health professionals know about your group so they can refer (1).
  • New members: How are new members going to be registered and introduced to the group? Have a plan of how to welcome new members e.g. assign a buddy, email contact.

What

  • Type: What type of support group do you want to set up? This depends on the needs of others in the group and could include peer to peer, clinical support group (run by a health professional), online support group and cultural support groups.
  • Skills: What kind of skills do you have and are you able to incorporate other members to offer balanced expertise, for example, accountancy, management, administration skills. Some specific roles could include facilitator, secretary or treasurer. There may be legal requirements here, depending on your type of activity and type of constitution chosen. Is a committee required or a sole group coordinator?
  • Funding and resources: What resources are you going to need? Money, premises, equipment, materials. How will the costs of running the group be covered? What sources of funding will you seek? Will your group have a membership fee or seek donations for things like room rental, snacks, photocopies, welcome folders, etc. Other ideas include: Corporate sponsors, grants, bequests, Givealittle page etc. (5)
  • Insurance: Whether or not your group needs insurance depends on the way it is structured or affiliated with other organisations. The Charities Commission offers information on personal liabilities for charities (6).
  • Length of life of the group: What would be the ideal length of time for this group to last? Not every group has to last forever. There may be benefit in having the group continue for a set amount of time with a review period established where people can recommit if they wish.
  • Agenda: What will you be doing during the meetings (7)? Do you want a set agenda of topics to work through each time? Do you wish to have time allotted for people to share and network? Will you have a slot each meeting for speakers to attend from the community to share their expertise? Guidelines on running a meeting can be found in a booklet by Mid-Central DHB and partners (8).
  • Topics and areas of interest: Ask members what they wish to learn in relation to their challenges or condition.

Guidelines and policies

A list of clear and concise guidelines creates the foundation and structure for a group. Such guidelines may be based around a specific model such as ‘te whare tapa whā’ – the four cornerstones (or sides) of Māori health. An example of a guideline to create emotional safety for sharing within the group may look like ‘Feelings are neither right, wrong, good or bad. All feelings are OK and do not require any judgement.’ Setting other respectful boundaries is essential to keep the group moving while at the same time limiting interruptions or monopolising behaviours in a kind and compassionate way.

Once guidelines are amalgamated they can form your terms of reference (TOR). This is simply a description of the aims and structure of your support group. Each member of the support group should be given a copy.

Your TOR should address:

  • Vision and objectives of the support group
  • Members, roles and responsibilities
  • Resources, financial plan

Tips for a successful support group

  1. Clear purpose and direction with good governance, leadership and mixture of skills.
  2. Strong guidelines – create emotional safety with clear boundaries, expectations and confidentiality policies. Briefly restate these when new members join the group.
  3. An online presence – this could be a website and Facebook group. The website can offer people detailed information and facts, while Facebook allows ongoing conversation and sharing.
  4. Good planning to find new members and maintaining an email list of all support group members.
  5. Minimise distractions and following the agenda as much as possible. Chairing the meeting to prevent going off track with varied questions or views.
  6. Good communication and follow-up with members after or between meetings.
  7. Keep the group fresh and interesting by involving speakers or experts in the field.
  8. Have clear opening and closing process – you may want to open the group with your purpose or vision statement and close with offering thankfulness to members for attending, or with a karakia or waiata.

References

  1. Starting-a-Support-Group.pdf [Internet]. [cited 2018 Jun 19]. Available from: http://www.connectgroups.org.au/wp-content/uploads/2016/10/Starting-a-Support-Group.pdf
  2. NZORD – Find a support group [Internet]. [cited 2018 Jun 19]. Available from: https://www.nzord.org.nz/support-groups
  3. Choosing the right legal structure for your group [Internet]. Community Law. [cited 2018 Jun 19]. Available from: http://communitylaw.org.nz/community-law-manual/chapter-3-community-organisations-and-the-law/choosing-the-right-legal-structure-for-your-group-chapter-3/
  4. Charities Services | Considering registering as a charity? [Internet]. [cited 2018 Jun 19]. Available from: https://www.charities.govt.nz/apply-for-registration/considering-registering-as-a-charity/
  5. Fundraising Institute [Internet]. FINZ. [cited 2018 Jun 25]. Available from: https://www.finz.org.nz/about-us
  6. Charities Services | Personal liability [Internet]. [cited 2018 Jun 19]. Available from: https://www.charities.govt.nz/im-a-registered-charity/officer-information/officer-kit/personal-liability/
  7. Self Help and Support Group Development Resources | ConnectGroups [Internet]. [cited 2018 Jun 19]. Available from: http://www.connectgroups.org.au/resources/self-help-and-support-group-development-resources/
  8. Starting-a-Health-Support-Group_2016_C2244.pdf [Internet]. [cited 2018 Jun 19]. Available from: http://www.midcentraldhb.govt.nz/HealthServices/AdvocacyServices/Documents/Starting-a-Health-Support-Group_2016_C2244.pdf
James