Support groups

If you are interested in setting up a support group please contact us to receive a copy of our guide, or ask to speak to one of our volunteers who is experienced in setting up a support group.

There are support groups throughout the United Kingdom and Ireland. Please click here to check if there is a support group in your area.

Starting your own support group

Starting up a support group can be daunting, especially if you have never done anything like it before.

  • Where do you find your members?
  • Who do you ask to come along?
  • What sort of group should it be?
  • How many times will you hold a meeting?

Setting up a support group brings many exciting challenges - the aim of a support group is to offer support by providing regular meetings where people can talk together in a supportive way. Having clear aims and objectives will give the group credibility, which can help relationships with nursing professionals and other organisations.

What a support group offers

Having a colostomy can turn someone’s world upside down. As well as dealing with the effects of the condition, people need to be able to meet others who are also 'Living with a Colostomy'. The difficulty of having a stoma is that it is a very private matter and some colostomates are unwilling to tell others how they are feeling. A support group can offer a safe and confidential environment.

Considerations when setting up a support group

Providing an environment where members can talk openly about their problems and express their doubts and concerns to others who have had similar experiences is high on the agenda, as is ensuring new and experienced ostomates never feel they are on their own. Some considerations you might like to apply when setting up a support group:

  • Devote time to welcoming people and get to know one another.
  • Assess what has brought people together and what experiences they have to share.
  • Ensure that there is good communication between the members.
  • Respect what others think and ensure all have a voice to state their opinions.
  • Clarify the group's common values and give meetings some structure.
  • Pay attention to the group’s make up, include everyone it aims to reach, in fact anyone who has a stoma and their family, carers and friends :
    • Colostomates
    • Ileostomates
    • Urostomates 
    • Internal pouch users
  • Ask the Colostomy Association for literature that you can display. There are leaflets on all subjects and the Association will be delighted to advise you on what is available.
  • Work out who would take on key roles for the group if people are away.

What kind of support group do you want to organise?

Once you have considered all the options and the practical implications of setting up a support group, you should have a clearer idea of what is involved and whether you wish to go ahead with the support group.

If you know your Stoma Care Nurse well, discuss with them the idea of your group and what you hope to achieve. They  may be able to suggest the way forward and how they feel new and experienced colostomates would benefit.

Set out a list of your intentions and be realistic. Decide whether you want your group to be informal e.g. a "tea and chat" group or a more structured group with visits from stoma care nurses, talks and/or question and answer sessions. Perhaps you want to invite manufacturers and suppliers along to exhibit their stoma products? Remember if you do invite speakers, check with them what they will need on the day e.g. projector and screen, audio equipment or they may be happy to bring their own.

Naming and promoting your support group

Decide on a group name and on how you will promote it to members and professionals. A well worded poster which includes dates and times of your meetings, how regular they are and organisers contact details, can be placed in doctor’s surgeries and supermarkets - anywhere that the general public will see it.

Finding the right venue

  • How many people are likely to attend?
  • Is the location convenient and welcoming for members?
  • Is your meeting place safe and easy to reach?
  • Are there tea and coffee making facilities?
  • Will you hold meetings in your own home until the group is established?
  • Investigate the possibility of your local hospital or community centre offering a room free of charge? Contact your local Borough Council Voluntary Action Group, who will offer advice on setting up a group in the area.

How we can help you

  • We have many volunteers who run support groups, please contact us if you would like to chat to someone
  • We can mail out your invitation to people who live in your local area at no charge
  • We can advertise your support group on our website and in the Tidings magazine

Running a support group - however small or large - is a worthwhile and satisfying venture. The difference it can make is enormous. A support group provides a welcoming community for the ostomate who need never feel alone.

For a downloadable copy of this information please click here.

Colostomy Association registered charity number: 1113471 All material © 2017 Colostomy Association. Reproduced by prior permission only.

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