IF Guidelines for Support Groups

Introduction

Starting a support group can help you take more control of your life. You can have more say in what happens in your and your family's life.

Who should start/join a support group?

Anyone who has Spina Bifida and/or Hydrocephalus in their family or who has these conditions:

  • child with Spina Bifida and/or Hydrocephalus
  • parents, partners
  • siblings
  • grandparents
  • other members of the family who may be interested in helping

Professionals should attend only by invitation, perhaps to give a lecture

Adults who have spina bifida or Hydrocephalus may wish to have their own group.There are separate notes to help them set up a group if they wish.

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Things to think about for your first meeting

There are many things that you need to do and need to think about when you are planning the first group meeting.

Where to Meet

Some groups meet in Community Centres, Church Halls, local clinics, Town Halls. Ask these places if they have a room you can use and how much it would cost. Often it is free to support groups.

Transport

Can people get to the meeting without help - perhaps by bus?

Could a friend help you to get to the meeting?

Note: If you need to hire transport to get people to meetings it will cost money.

How to get help with transport?

  • There may be Community Transport in your area
  • A disability organisation in your area may help
  • A local Church may be able to help through one of their own groups
  • Taxis - but these cost a lot of money

Transport must be arranged well before the meeting. If people are being collected from several places, they must be picked up early enough for all to be at the meeting on time

Announcing the meeting

  • Sometimes groups make up small posters or leaflets to give to people.
  • These small posters/leaflets can also be put up in public places to let as many interested people as possible know about the meeting.

What to put in the leaflet

  • Say WHEN the meeting is to be held and at what time
  • Say WHERE the meeting will be held - address and a map
  • a short piece ABOUT WHAT the meeting is for
  • perhaps some PICTURES to get people interested

Talking to people about the meeting

It is important to talk to people about what you are hoping to do at these meetings and try to get people interested in coming.

You might go to clinics, so talk to other families about the meeting. Tell the District nurse that you are trying to set up a support group and ask her to give the leaflet to other families with Spina Bifida and/or Hydrocephalus. Use the telephone to encourage people to come . Radio may be interested to talk about your group.

Things you might need for the meeting

  • Biscuits, tea and coffee
  • Milk, sugar, cups, kettle to boil water
  • paper, pens, list of things to talk about (agenda)

Things you could talk about in the first one or two meetings

  • When does the group want to have their meetings
  • How often does the group want to meet
  • Where does the group prefer to meet
  • Do people need help to get to the meeting
  • Why it is important to meet
  • What do people want to talk about at the meetings
  • Do they want a professional sometimes to give a lecture or lead a discussion

Agendas

An agenda is a list of things to talk about in a meeting.

Some groups make an agenda for their meetings, but the agenda could leave time for people just to chat to each other, as well as more formal items.

Here is an example of this type of agenda:

Support Group Meeting
  1. Introductions
  2. Notes from last meeting
  3. Matters arising from that meeting
  4. Speaker or Guest
  5. New subjects for discussion
  6. Any other business
  7. Date of next meeting
  8. Free time for informal chat. Select important themes like incontinence, mobility,administration etc.

Jobs to do for meetings

Some groups give people jobs to do; these jobs have different names.

If a person feels they need help to do these jobs, another member of the group could help them.

What the Chairperson Can do

In the meeting

  • welcome everyone to the meeting
  • go through the agenda for the meeting
  • read the notes of the last meeting
  • make sure everyone understands what is being talked about
  • help keep people on the subject under discussion
  • make sure everyone who wants to talk can do so
  • make sure that only one person speaks at a time

Outside the Meeting

  • help with ideas for the agenda
  • contact people and remind them about the next meeting
  • check that transport is available if needed
  • help the secretary to do the notes from the meeting
  • make contacts and write any letters needed

If the group has decided to have a speaker, contact the person to make sure they are available and willing to speak.

What the Secretary can do

In the meeting

  • take notes in the meeting
  • support other members of the group
  • help to fill in forms - for example if applying to Trusts for money

Outside the meeting

  • check who is coming to the meeting and who is not
  • work with the chairperson to do the notes of the last meeting
Other jobs

There are many other jobs that may need to be done. The group can decide who does these. It may be decided that there is a rotation (people take turns doing things).

Some examples are: making tea and coffee, washing up after the meeting, collecting money for tea, coffee and biscuits, opening up the building ready for the meeting, locking up the building after the meeting is over.

Support for your group

Your group may decide it needs support or help to do some of the work. That is fine, but do think carefully about who you want to support you. It is important that you choose who you want to support you. It should be someone who listens to what you want. It should be somebody who won't take over, but will help the group to run itself.

How to get money for your local group

Local groups need money for many things, such as transport, rent for the meeting room; office equipment; phone and photocopier, and later on a paid worker.

Send letters to organisations, Trusts, your local Town Hall, asking them to help you set up your support group.

When you are writing to them it is important to tell them:

  • who you are
  • what your group is about
  • what you need money for
  • how much you think it will cost
  • ask for their support

Example letter:

Kosovo, 15 May 2010

Dear Mr.Williams,

My name is Lisa Johnson. I am a parent of a child with Hydrocephalus and Spina Bifida and have set up a support group for people in a similar situation to myself.

The group offers support to families and individuals with Hydrocephalus and Spina Bifida and now needs money to enable the group to continue.

We attach a list of items for which funding is urgently required, together with the cost, and ask that you give consideration to supporting us in our work.

We would be very pleased to report on the progress of the group or come to your office to discuss in more depth our needs.

We look forward to your response and thank you in advance.

Yours sincerely,

Lisa Johnson