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How to start and run a support group  

Starting a support group needs motivation, enthusiasm and a good helping of determination. You may be a patient or a partner of a patient and, through your own difficult experience, feel you would like to help other patients and to raise awareness and knowledge of PBS/IC in your country or region.

Let me assure you that the fact that you may have no experience in this field is no reason not to go ahead! Many support groups around the world have been set up by patients who have never done anything like this before in their lives. Although it’s not easy when you are a patient, it is nevertheless very fulfilling to know that you are contributing towards helping other patients get the right diagnosis and the right treatment at the earliest possible stage. And that you can help people to cope with their illness and bring about a change in their lives for the better.

Before making a start you need to do some “market research”.


Take a look at PBS/IC support groups around the world and also any other patient organisations for different disorders that may exist in your country. See what they offer their members, what kind of subscription they charge and how they present themselves. See what information you can obtain from any umbrella organisations about setting up a support group in your country and your culture. Every culture requires a different approach and every country in the world has different medical facilities and treatment available and above all a different economy!
2. When you first start, you will be faced with two main tasks: a) raising awareness among patients, health professionals and the general public and b) providing patients with information and emotional support.
3. Although there’s nothing to stop one person, a patient or partner or other interested party, going ahead alone, it is definitely easier if there are two or three of you. Gradually you can build up a working committee. Don’t try to do everything yourself, learn to delegate and to pace yourself or you will end up with burnout! Above all, prioritize.
4. One important aspect is to have one or more supportive doctors and/or nurses who will help you through the medical maze and serve as a basis for a medical advisory board. Have at least one urologist behind you who is willing to help out with writing medical information for patients or speaking at a patient meeting. This doctor may also be able to put you in touch with fellow-sufferers who would either like to help organise a group or become a member. He could hang up an advert in his waiting-room calling for enthusiastic patients.
5. Before advertising your group publicly or doing magazine interviews etc., have some simple information ready: at least a basic leaflet or fact sheet explaining what PBS/IC is (see our basic IPBF information leaflet). Once you have your leaflet or fact sheet, you will need a contact address, email address, telephone and/or fax which patients can contact. It’s handy if your leaflet has an application form for potential members to fill in and send off. Leaflets and fact sheets can also be used for potential sponsors, patient information centres in hospitals and for handing out at urology meetings. All of these things can be made on a computer at home. If there is no computer available, perhaps there is a typewriter around or maybe your local hospital or health centre will have computer or copying facilities you can use.
6. Money: you’ve got to get some financial support to start off, even if it is only to pay for postage stamps and telephone calls. Potential sponsors are pharmaceutical firms who produce or distribute medicines or other products (i.e. catheters) for PBS/IC patients. Once you get some members paying a subscription, you will have a small income to expand your activities.

You may find that your country has some kind of umbrella organisation or a subsidy office in its ministry of health. It’s a long shot but worth investigating. You could always try a Kidney Association or Incontinence Foundation to see if they have any funds to spare or could help out in kind or share facilities. You will also need a bank account in which to keep this money. And a treasurer to look after income and expenditure.
7. One formula for setting up a group that has proved successful in the past is to get your supportive doctor(s) to help organise a first meeting of IC patients, perhaps with some financial support from a sponsor. It could perhaps be organised in a local hospital. First collect a list of names of patients and send these an invitation. Ask urologists to advertise the meeting in their waiting room. Together with your doctor arrange 1 or 2 speakers and then during the meeting try to form a first committee. All of this has to be adapted to your local situation.
8. At this stage you must think about giving your organisation a legal form as a charitable support group. Ask your local lawyer or notary about the different options and how much it will cost. Your chamber of commerce can also produce information about foundations and patient associations. It is difficult to obtain government help or other sponsoring if you are not a registered charity.
9. Nobody should think that they cannot sit on a committee because they are a patient and are often ill. All patient committees have this problem and they therefore ensure that if one committee member is ill or in hospital, there is someone else to take over their tasks until they are well enough again. If patients don’t feel well enough to function as a full committee member, they can perhaps provide help with individual projects.
10. You have to decide on an amount for an annual subscription for patients who wish to join. Do some market research and find out what other patient support groups charge. You need to cover basic expenses but don’t want to ask an exorbitantly high subscription that will exclude many poorer patients. You could charge a low subscription and ask wealthier members to make an additional donation.
11. Think about a simple newsletter. Don’t be over-ambitious at the start. One or two pages are enough to keep in touch with your members at the start. If you have members with email, they can be sent the newsletter by email, thereby saving postage costs. And don’t forget your disclaimer as legal protection for yourself and your group.
12. Talking about computers, a committee needs to have at least one computer these days and preferably email and a fax. All your patient information can be designed and printed on this computer. A few home-made business cards, run up on the pc, are useful for committee members too. You can make your own letter heading on the pc as well. This will make your sponsor applications look professional and show the sponsors you are businesslike, without incurring excessive costs.
13. Decide what your group is going to offer its members. PBS/IC patients often need contact, moral support, want to talk about their problems. This can be very tiring and emotionally stressful for the person taking the calls, so think about this aspect very carefully before giving out a telephone number. The ideal situation is to have a rota of telephone “counsellors”. Someone needs to organise this. And the people doing it may need some basic training since you may receive calls from very suicidal patients. The alternative is to have patients send in their questions by letter or email. If the problems are very medical, you will need a willing doctor who is prepared to help out. A urological nurse with experience of PBS/IC patients can be a tremendous support here.
14. Only when you have some of the above in place should you think about advertising or interviews with magazines or on TV or radio. Because once an article appears, you may have hundreds of people contacting you within a very short space of time. If it is an article in a magazine or newspaper, give a postal address for contact, unless you have a team of people willing to answer the telephone.
15. A website. Some patient groups start with a website before actually setting up a group. A website is useful to provide information in your own language and to tell PBS/IC patients and their families what your group can offer. You may be able to find a patient or a friendly doctor who can build you a simple website. Or perhaps a sponsor who will do the job for you.
16. Think about organising an annual contact day for patients, with speakers from the medical world, urology nurses, physiotherapists, dieticians and many others. How you do it depends on the money available. But you could ask a (small) entrance fee to cover your expenses. Look for suitable accommodation that is easily reachable by patients – and in the case of PBS/IC patients this also means accommodation with plenty of toilets available – total up the costs and estimate what the minimum number of attendees is likely to be. Then work out what you need to charge to cover your costs. A useful way of attracting new people is to get a local free newspaper to put in a free article advertising your contact meeting along with information about the patient group.
17. Educate yourself and your committee. Find as much information about PBS/IC and the latest treatment and developments as possible. It is particularly important to know what treatment is available in your specific country. Books are available on all aspects of PBS/IC, but mainly in English. Scientific medical information can be found in the urology journals that may be available in the medical library at your nearest medical faculty. Or ask your friendly urologist to photocopy any interesting new articles. Internet provides a wealth of information for those with access to it. Try to ensure that one committee member attends any symposiums or presentations on PBS/IC and reports back to everyone else. There are many possibilities both nationally and internationally. But first start small and learn the basics, gradually building up knowledge within your group.
18. Depending on what country you live in, some or even most of the above may be way beyond your possibilities. You may be faced with cultural taboos. You may have patients who are illiterate and have to find different ways of communicating with them. In such a case, it may be an idea to concentrate on raising awareness among district nurses and request their support. You can adapt everything to what is available right there where you live. And we would love to hear from you about how you are doing it, because your practical experience can help other people around the world.

This is just some basic information. We at the IPBF are always willing to help out, provide some basic starter information that can be translated into your own language and own culture or help to find someone who is willing and able to translate this kind of material. Not forgetting some moral support as well as practical assistance! Above all, always remember that if we could do it, you can do it!




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