In Southampton, we have shown the need for local support groups but there aren't many around. See the Barrett's Oesophagus UK directory site for details of support groups from other charities around UK. Meantime, could you help start a group?
How to start a new group.
There are many roles support groups may fulfill. (See this video from Prof Laurence Lovat.)
Although most gastroenterologists would love to spend more time discussing the condition with their patients, they don't have enough time to give the support they'd like to. A support group can help fill that role.
They help to raise awareness, encouraging others to seek advice where necessary.
They act as a swap shop for tips and suggestions.
They can act as a collection / distribution point for helpful literature and leaflets.
They provide the opportunity for the newly diagnosed to discuss the condition and problems with the more experienced.
Where a need is identified, they can help raise funds towards meeting that need.
I don't know enough to help start a support group!
What do you need to know? We can help every step of the way as described below.
We can provide you with fact sheets that will help answer the most frequently asked questions. These may also be downloaded from our FAQs page.
And if anyone asks a question you cannot answer, refer it to us and we'll respond quickly.
Doesn't it take a lot of organising?
Not unless you want to.
But I don't live in Wessex.
Support groups are needed elsewhere too. We're happy to help you start a group wherever you are.
OK. Tell me more.
There are various types of support group:
FORUM tab, is considered the best.
We are not looking for new on-line support groups. If, however, you consider there is a role for another, contact us and we'll discuss your suggestions.
This is the easiest starting point and can be started by just one person.
You will need to choose a venue. We tend to choose tea rooms at garden centres as they are usually fairly accessible with car parking but it could be a café, a pub or, if you're happy with it, your home.
You will need to choose a time that is convenient for you that you think others could make. We have chosen afternoons but are aware there may be some working who would prefer an evening meeting.
Plan for a series of sessions – perhaps once a month for three months to see how it goes.
You will need to make yourself identifiable. Although our yellow t-shirts are easily identified, you may prefer not to dress too brightly and conspicuously. Leaflets on the table may be sufficient. We can supply you with an A4 sized laminated poster to stand up on the table.
You may need information leaflets. We can provide these and they may be downloaded from our FAQs page.
You need to advertise the meeting. Perhaps you can put up a poster on a community notice board or your local paper or radio station has a what's on section. If you are publicly advertising the meeting at a venue such as a garden centre, it is best to ask the manager's permission first. I haven't found this a problem. They are happy they may get a little extra business. You don't need to pay for special accommodation – a table in the cafe will usually be quite sufficient.
You may also advertise the event on the forum.
On the day, take a book. Don't be disappointed if no-one turns up. We have days when no-one turns up to the drop-in sessions we hold regularly. But they may come next time.
Apart from the information sheets, take a pen and paper to write down names and contact details of those turning up and any questions you cannot answer but need to refer to us.
If you get two or three extra people who are interested in helping with the support group, you may be ready to consider the next option.
It will help to get your local specialist gastroenterologist consultant or nurse interested. You will need to arrange a meeting with him to talk about your ideas and plans. We can help put you in touch with him, arrange a meeting and accompany you to the interview if you wish.
A free public lecture should be planned.
A venue such as a hall needs to be booked. Hopefully your hospital will have a lecture theatre or meeting space you could use. Otherwise a local community hall will suffice.
A main speaker should be arranged. Your consultant may agree to provide such a talk but we can provide speakers. A speaker from Barrett's Wessex may also be able to talk about the charity.
A programme needs to be arranged with plenty of time for questions and answers. We can help you with this planning.
In addition to any other information leaflets we can provide you with, you will need a supply of registration forms to collect details of attendees wishing to join the group and indicate whether they would be willing to join a committee. It may be preferable to arrange to see anyone so willing at the close of the main meeting to arrange a date for an initial committee meeting.
You will need to appoint a chairman, secretary and treasurer and we can provide you with a constitution.
Although we like support groups to be as autonomous as possible, there will be some rules to abide by as we have a legal responsibility as the charity under whose name you operate.
If you wish to be engaged in fund raising, Gift Aid may be reclaimed from the government by the charity on donations you receive.
An independent group can gain charitable status and be able to reclaim Gift Aid themselves.
We can help you with the process of charitable status application.
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