There are currently very few support groups in the UK. The chances are that there won’t be one near you. If that is the case, you may want to start one yourself. They can be extremely useful, providing an environment where people with hepatitis C can stop feeling isolated, afraid and stigmatised because they are with others who identify and understand.
Support groups can also be very valuable places for exchanging information. Typically, conversation can cover the whole spectrum of hepatitis C. Examples of the kind of topics discussed are - symptoms, alternative remedies, coping with treatment, unhelpful doctors, good hospitals and special diets.
However, support groups do require energy to set up and run. A number of support groups have been established over the past 10 years by people with hepatitis C themselves. Often started by one person with the best intentions, some of them have disappeared because that one person just did not have the energy to do it all by themselves.
It is also important to be aware that people with hepatitis C are very varied. There are people who have contracted the virus through intravenous drug use and are comfortable within that culture and community. There are people who have been infected by intravenous drug use but a long time in the past and who no longer want to be associated with the stigma of drug abuse. There are also people who have been infected in other ways, by blood products for example. These groups may have different attitudes and aims and won’t necessarily always see eye to eye (irritability can be one of the symptoms).
Below are some tips that may be useful in setting up a support group and avoiding some of the pitfalls:
It helps if you know other people in your area personally to help you get the group off the ground. It may even be useful to form a little committee to share the work involved. This means that it does not all depend on you and, if you are ill or just can’t get to a meeting, the meeting will still happen.
A place to meet is obviously a key element to a support group. It has to be available to be used regularly and easy for people to get to so that enough people can attend to make the group viable. It's also helpful not to be charged for the space, as money can become a complicating factor. You don't need anything flash, just a private room with movable chairs will do.
Churches, hospitals, colleges, libraries, Social Service organizations and recreation centers are all possible places.
How often the group meets can be decided on over time, i.e. what the group wants. However, in the beginning it is probably good to make the meeting in the early evening for an hour or two, once a month.
There is much information available on hepatitis C that is either simply out of date or just plain wrong. It can be a useful idea to assemble a large ring binder of information and keep it current as you go along. Members of the group can be encouraged to bring articles from newspapers and journals and print-outs from the internet (please feel free to print out anything from this site). It is a good idea then to have it checked, perhaps by a nurse specialist or cross-reference it with reliable sources. Try to make sure your information sources are accurate and up to date.
It is important to make the effort to let people know who, what and where you are. Local newspapers are always keen to write small articles on a new local group. Get in touch with a journalist and send them the details. This way the information stays accurate and the journalist doesn't have to do much work.
Send the details to relevant websites. This site features a list of support groups. You can also make a new simple A3 poster every month, which includes time, place, date and a contact number. The local GP surgeries, libraries and the liver unit of the local hospital are all good places to put up a poster, but get permission first. Let us know the details and we will be happy to add them to our website, newsletter and helpline resources.
There is no one right structure for a support group meeting. You may want to let it develop over time. Here are some suggestions for running a group:
- greet members as they arrive and introduce them to other members
- establish the ground rules and agenda for the meeting then take a subsidiary role deferring to all the members
- start with the latest news about hepatitis C that you or other members have come across
- be aware of each member's participation or lack of it and try to make sensitive or well-timed remarks to draw members out
- do not answer questions you don't know
- be a role model of acceptable group behaviour
- explain that what is said during the meeting should stay in the group - confidentiality between group members is essential and discretion should be used when talking about local services, GPs, consultants etc.