Starting a Barrett's support group - our approach

(This text is also downloadable at the foot of this page to print as an aide-memoire.)

This guide, based on experience, is offered to anyone considering starting a support group in their area.

A new group may be a regional group that can hopefully grow to encompass a whole county or more (eg Barrett's Wales) or a local group within an area of a regional support group (eg Barrett's Salisbury). If the latter, you will, of course, need the co-operation of the regional group.

1. You need volunteers to help. Although a couple of groups have previously been started by just one determined individual, it can be hard work.

2. You will need a venue, date, speakers and means to advertise.

3. Contact us. We can usually put you in touch with your local consultant gastroenterologist.

4. You need a budget. Typically it costs us about £500 to start a support group. If your plan sounds viable, BW may be able to provide this.

5. Prepare a timetable. Minimum time required is about 2 months.

6. An inauguration meeting will usually last 2 hours (see agenda below) but when booking accommodation, allow up to an hour before for setting up and half an hour after for clearing up.

Scenario 1:
Hopefully your local consultant can find a suitable date when he may be available as a speaker and book the lecture theatre at the hospital. He may also be able to provide a second speaker. The subject will be Barrett's Oesophagus and its treatment.
It may also be possible to advertise via the hospital's endoscopy patient list. See below.

Scenario 2:
You may need to find a suitable venue yourself - typically a local community hall that can accommodate up to 50 people. If necessary, BW may be able to find suitable speakers.
Unless the venue has this facility, you may need to borrow or hire a projector, to couple to a computer, and screen. BW may be able to help.

You may wish to consider refreshments. We find it best to provide our own tea, coffee, milk and sugar, apple and orange juice and biscuits. You will need a means of preparing hot water - either kettles and thermos jugs or an urn and disposable cups and teaspoons. It is best to visit the venue if possible to check the facilities when booking.

Scenario 1
Ideally this should be to the hospital's endoscopy patient list. If they have a suitable list, it will, of course, be confidential. To maintain patient confidentiality, the following approach is needed:
1. You need to know how many patients are on the list. (It can normally be 300 - 400.)
2. You need to agree an invitation letter with the consultant. (A suitable model, as used for the Barrett's Wales launch, is downloadable at the foot of this page.)
3. You need to have printed sufficient letters and stuff them into a sufficient number of ready stamped envelopes. (BW may be able to assist with printing and obtaining sufficient stamped envelopes.)
4. The stuffed and stamped envelopes need to be delivered to the hospital where someone will be able to affix address labels and despatch them. This does require a bit of work by the hospital, usually an endoscopy nurse, but if necessary admin time may need to be paid for.

Typically, you can hope to expect up to 100 attendees when advertised this way.

Scenario 2
You may have to rely on media advertising. You may need to haggle a bit with the advertising team of the local paper but a 15cm high x 3 column width advertisement ought to be less than £300 - and be sure to inform them that as a charity (using BW's charity status), this should be VAT free. (If the paper is part of one of the groups BW has advertised with before (eg Newsquest or Mirror group) they should have the details on file, otherwise we can provide the HMRC recognition required.)
The advertisement is best placed about 10 days before the event.
You may also be able to have it listed free in the What's on section of the paper's website and possibly on local radio.

Typically, you can hope to expect up to 50 attendees when advertised this way.

You should also try to get a press release to all local media outlets. A suitable model may be downloaded at the foot of this page but, in our experience, is most frequently ignored. If you can get the interest of a local reporter, however, that can be a great help.

Our inauguration meetings usually occur midweek between 6:00 and 8:00pm, though may be adjusted depending on normal local traffic conditions.

You will need one or two helpers to help with refreshments, display and handouts.

Setting up. You will need two tables: one for refreshments and one for displays and literature.
You may need to start heating water immediately - particularly if using an urn and if refreshments are to be available on arrival.
Displays may involve pop-up banners (borrowed from BW), and suitable printed and promotional material BW can provide - eg Action Against Heartburn's "Persistent Heartburn?" leaflets, BOUK's "What is Barrett's?" and "Treatment for Barrett's" leaflets, "Down With Acid" books and any of the leaflets BW produces - and can produce specifically for your new group. A couple of collection buckets (from BW) will be needed for any donations anyone wishes to make.

As attendees arrive, they should receive a programme, a membership application form and a pen. (These items can all be provided by BW.)

Depending upon the venue, it may be easier to make refreshments available whilst attendees arrive in which case the opening address may not be until a quarter of an hour past the published start time.
1. You will need to provide 5 to 10 minutes introduction welcoming attendees and explaining the programme.
2. This will be followed by one or two speakers for 20 minutes each talking about the risks of persistent heartburn and Barrett's Oesophagus and the treatment thereof. (The exact composition of the talks will depend upon the speaker.) You may need to provide the speaker with a 2 minute warning if it looks like they'll be overrunning.
Speakers may prefer to take 5 to 10 minutes of questions after their talks rather than a separate Q & A session later (though, if time permits, it is also a valuable to have that as well).
3. Up to 20 minutes' talk about the role of a patient support group and why attendees need to join. BW can provide this talk as a series of powerpoint slides and text for you or may be able to provide a speaker.
4. Optional 20 minute refreshment break according to venue.
5. Resume for final Q & A session.

Chris Robinson,
1 Apr 2018, 07:20
Chris Robinson,
1 Apr 2018, 07:20
Chris Robinson,
1 Apr 2018, 07:25
Chris Robinson,
1 Apr 2018, 07:36