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The UKFibromyalgia Forums • View topic - Setting up a support group HELP!!!



Setting up a support group HELP!!!

Find a support group in your area or find out if there are others with whom you could start up a group.

Moderators: perseus, *Lisa*, FluppyPuffy

Setting up a support group HELP!!!

Postby Harley » Fri Nov 13, 2009 6:00 am

Me and a couple of other FM sufferers are in the early stages of setting up a new support group and I just wondered if anyone could give us some advice?

Did you set up in association with FMAUK or did you set up independently?

What sort of things do you cover?Our plan is to be a more information based group.

What do you charge? we obviously understand that we need to cover the cost of the room,refreshments and any speakers we might be able to get but we want to make it as cheap as possible.

How often do you meet and for how long?

What do you do to advertise your group?

Sorry for all the questions but we want to make the group as good as we can.
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Re: Setting up a support group HELP!!!

Postby *Lisa* » Fri Nov 13, 2009 2:29 pm

:wave:

You dont need to set it up with fmauk...

I know alot of groups that have formed themselves and just get together each week/month for a coffee & chat, they either meet at a coffee shop or each others houses or a community centre

You can advertise in the physio departments/doctors surgeries/pain clinics/local papers/leaflets etc...

Most organized groups meet once a month.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Setting up a support group HELP!!!

Postby shazq » Fri Nov 13, 2009 2:48 pm

I done a living with pain course at my local hospital a few months back, the course has now finished.
We all found it helped to talk to each other so we continue to meet up once a week.
We meet up in Tesco and have lunch and a chat.

It does not cost you anything to sit and chat either, we spend a couple of hrs chatting away.
As the weather is changing we are going to make it every two weeks.
If for health reasons we have to cancel it does not cost us anything, if you booked a hall you would still have to pay even though you have had to cancel the meet.

Good luck with it.
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Re: Setting up a support group HELP!!!

Postby Harley » Sat Nov 14, 2009 10:50 am

Thanks for the replies ladies :D

Lisa, we are still undecided about the FMAUK thing, our council requires you to be affiliated with a charity in order to rent one of their rooms at the subsidiesed rate but we are looking at renting a private room which means we could go it alone and govern ourselves. It's just that the council rooms average about £2.80 an hours whereas private ones are around the £15 an hour mark.

Shaz, I went on a pain management course and there was only me and a woman who had FM who spoke to each other for the whole 6 weeks, there were a few whispers when I started giving her a lift because she lives nearby but that was as friendly as they got :lol: but I like your idea.

There are 3 of us organizing it so if ones ill at least one of the others should be up to taking the meeting.

Thanks again for your input. 8)
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Re: Setting up a support group HELP!!!

Postby LinzWorld » Sat Nov 14, 2009 1:37 pm

Check the council wording. Does it have to be a registered charity? All support groups that have any structure at all, e.g. bank account, committees, constitution, are charities in their own right, even if they are not registered. A charity doesn't have to register with the Charity Commission until their income is over £5,000/annum but they are still subject to Charity law. So it's possible that if your council aren't demanding a registered charity number, that you could put the group down as the charity and just make sure that you get the constitution, committee and bank account sorted asap.

The Charity Commisssion now has an example governing document (constitution) for very small charities available on their website.

Have you asked your local hospital if they have any rooms you can use? Our local hospital lets voluntary groups hire meeting rooms for free when they are not otherwise being used (usually evenings).

Also, if there are any event venues near you that are often not used, ask them if they could let you have a room. Newbury Racecourse, for example, has let a new Brain Tumour support group use one of their boxes for free.
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Re: Setting up a support group HELP!!!

Postby Harley » Mon Nov 16, 2009 7:11 am

Thanks for the Linz. I was only told about the charity thing, I'm currently waiting for the council to send me a printed copy of their requirements so I can go through them properly so thanks for the Charity Commission info.
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Re: Setting up a support group HELP!!!

Postby Woodentop » Sun Nov 29, 2009 8:41 pm

I set up a support group 3 years ago and at the original meetings some people wanted to keep it informal- meeting at peoples homes etc. Eventually we split into two groups and my group went with FMAUK and the other stayed as it was.
My group is still going - we have help from a brilliant regional coordinator and plenty of info from FMAUK.Our membership has grown from around 10 members to 30 now.
The informal group came up against a lot of problems, not least meetings being cancelled because the person whose house they were meeting in couldn't accomodate them that month for various reasons. Also,because it was so informal it was rather like being at a party, with people in different rooms.
Our group meets once a month at an easy to get to local venue. We have to pay for the room,but we cover that with a yearly membership fee and a monthly meeting fee. We provide tea,coffee etc, we hold a yearly birthday party which is paid for by our funds and a Christmas lunch which the members pay only a deposit for and group funds pay the rest. All our stationery, printing costs etc also comes from this money.
When we first started out, we had only speakers who came free ( there are quite a few ) but now our group is larger we can afford to pay. We don't have speakers every month -we have plenty of time for members to talk to each other, we do quizzes and sometimes meditation, but the most important thing is we are a happy group and don't dwell on the downsides of FM. There is always laughter at every meeting.
Two of us run the group, so that if one of us can't be there for whatever reason, the meeting can carry on. We've never cancelled one yet!
Hope this is of some help to you- good luck.
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Re: Setting up a support group HELP!!!

Postby gillshutt » Mon Nov 30, 2009 8:06 am

Sounds like a great group Woodentop (welcome to the forum by the way :hugs: ) and having two people run it is a wonderful idea, I hadn't thought of that aspecyt which is stupid considering it's a group for fmers :lol:

Whereabouts is your group? Wish it was near me.
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Re: Setting up a support group HELP!!!

Postby Woodentop » Mon Nov 30, 2009 11:26 am

Hi Gill and thanks for the welcome. We are in Staffordshire and I know this sounds bigheaded and a bit biased, but we are a great group!! Running it with 2 people is not only a benefit if one of us is ill or has other probs, but we can bounce ideas off each other ( gently of course!) and it's a good excuse to meet up for coffee to talk things over. We don't have a commitee, but we do consult members about things and we have done some extra curricular activities such as gentle walking round our nearby forestry centre( they have walks to suit all abilities) which is part of the national forest.Also, some members have become good friends outside of the group and meet up with each other between meetings. That's really what it's all about.
I'm not saying it was easy to start with, there is a lot of work involved,but we got there in the end. I would recommend running a group to anybody, it's good for us as well as the members.
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Re: Setting up a support group HELP!!!

Postby Harley » Mon Nov 30, 2009 4:26 pm

Thanks you for the reply Woodentop and Welcome.

Your group sounds like it's exactly what we are trying to work towards so thank you very much for all the information as it means we know what we are trying to achieve is doable. :D

There are two of us setting up the group and we have decided to go along with FMAUK because the help and advice they offer will make the group better in our minds. We will hopefully be up and running in the new year and I just hope it goes as well as your group.
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Re: Setting up a support group HELP!!!

Postby Woodentop » Mon Nov 30, 2009 6:12 pm

Good luck with it all Harley. If you have a local CVS they can help you set up an initial meeting - probably on their premises - and will advertise it for you.You can take it from there and go the way you feel best after talking it over with the others who are at that meeting. Other than that, you can always see if there's a support group anywhere near you that you can visit and see how they do it.
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Re: Setting up a support group HELP!!!

Postby Harley » Mon Nov 30, 2009 10:05 pm

We do have a support group already in the city that we have both visited individually and let's just say that's why we're starting up a new one :shock: :lol:

Can I just ask what CVS is because I'm rubbish with abbreviations, even really obvious ones. :lol:
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Re: Setting up a support group HELP!!!

Postby bookworm » Tue Dec 01, 2009 3:44 am

Hi HArley

Sounds like a great idea and I wish you much success - as for rooms have you not tried asking at your doctors surgery if they have a spare room to start you off or a local clinic. There is also the option of the one of the pubs around you, especiallyas there is no smoking allowed in them now. I know that many around me have good sized rooms that are private which they let for free - not the most ideal place I know but it will save you some outlay initially.

I think CVS refers to the council for voluntary services - although I may be wrong :roll: I usually am :(

Best of luck to you I do hope it all works well :)
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Re: Setting up a support group HELP!!!

Postby Harley » Tue Dec 01, 2009 9:12 am

Thank you BW :D

I'm currently waiting to hear from the council about rooms in the centre of town but there isn't much on offer and the parking can be a nightmare so it's looking likely that it'll have to be in the suburbs, I have asked at the college I go to and they can let us have a room for £2.85 an hour but it's right on one side of the city. I'm also waiting to hear back about a room in a spiritualist church which is slap bang in the centre of town next to a multi story car park so here's hoping. :D
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Re: Setting up a support group HELP!!!

Postby bookworm » Tue Dec 01, 2009 1:42 pm

Sounds like you are looking in some good places Harley, also consider a local school - they often let out rooms for a minimal charge :)
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