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Discussion Starter #1
Hi I'm not sure if this is the right forum to post this, but are there any other lupies living in Northamptonshire, UK and would you be interested in a new Lupus Support Group that Lupus UK are trying to start up in the area? There is currently no such group and a few members of Lupus UK, myself included, have expressed an interest.

I think the idea is for an informal gathering so that Lupus suffers can get together and provide support to each other (I bit like this site!) and talk about Lupus and how it effects them. I also think a Consultant Rheumatologist would be invited to do a talk and Q&A Session.

It would be a good chance to meet people and have a coffee and a chat! Let me know if you are interested.

Hope everyone is well and thanks in advance.
 

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The Other Illinois Tammy
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jackster,
I don't live there but that is a wonderful idea. I hope that you get the support that you need to keep it going and that you have the chance to get a rhuemy to speak to you and share some helpful advise with everyone. It makes me want to move there just so I can go and be a wonderful part of a wonderful idea. I hope you are feeling well and doing better.
 

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When I was president of the PNW LFA chapter we had a monthly education meeting. I had doctors and other health providers to come talk at the meeting which also had a q & a session afterwards. It was well attended. When I left office, they let the meetings slack which was too bad as it filled a need.

Good luck at setting up the group. It is a lot of work to set up meetings. But it is definitely worth the effort.
Sally
 

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Discussion Starter #4
:bigsmile:Thanks Onetay and Sally for your messages of support, I hope to get something off the ground soon. You can both be honoury members! I'm not doing too badly at the moment and seem to be stable so I thought I would use this time and energy I have to get a support group going as we don't have anything in Northamptonshire at the moment.

Hope you guys are doing ok at the moment.
Thanks again and take care
 

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Good Luck with the venture Jackster. You might be able to get advice from LupusUK and the other regional groups, or even members of other groups here on what makes the best formula for success.

Maybe you are already experienced with forming groups but my advice is to start very small and work up. I have found that an active regular participation of one third of members is as much as one ever gets of any group. This is likely to be far less when it's a group of sick people who sometimes can't get out or make a regular commitment in person either organising or being present. A number of people will be willing to support in the general sense but aren't all that interested in meeting up with others with lupus. Some people might be willing to help with a newsletter or various fund raising activities. I would suggest informal get togethers first to test the waters.

Very often the founder of such groups ends up doing all the work as initial enthusiasm quickly dies down or projects simply turn out to be not feasible.

Just being realistic here :hehe: - all the best on a wonderful endeavour
Cheers
Clare
 

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Discussion Starter #6
Hi Claire, thanks for your message. Myself and another person, met with the Director of Lupus UK yesterday to see if we could get a group started and he said much the same as you! There used to be a Lupus UK support group in the area but it folded as the chairperson was too poorly, but hopefully we can restart it with the help of Lupus UK. I'll let you know if we have any success.

Thanks again
 

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good luck with getting a group up and running, we met with the Director at our local AGM which he attended on saturday just gone. I hope you get lots of support from other lupies and can make a real go and success of a new group.
 

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Discussion Starter #8
Thanks very much birdie, any suggestions/idea's you have would be very welcome. Is your group well supported?:)
 

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our group is supported to a degree, the only trouble we get is trying to get members actually partake in anything. We do alot of fund raising throughout the course of the year and as we all have lupus we understand that you cannot always say "yes I will help" as you never know what is round the corner, but I feel that perhaps we could have a few more helpers. Our biggest fund raiser last year was a Golf Day that our Chairlady organised with her family and everyone was amazed at how much her family raised on this day £7500. We do store collections as well. Our biggest fund raisers normally are during the summer when we have a garden tea party with fresh scones and cream with tea and a strawberry tea, these are normally well attended. In the past we have done balloon race but last year we stopped that as we heard of another company releasing balloons and the long strings were getting caught up in the wild life so we decided against that.

We also have a monthly drop in at our local hospital were newly diagnosed patients can come for advice and a friendly chat, we have lots of leaflets and also have an extensive library where members can loan books. Very informal just frendly faces, a cuppa tea and biscuit and a chat. We have a nurse and a doctor available during this time so if there are any questions that you would like answering they can do and everyone else can benefit from the answer.

I am sure once you get up and running it will be a success and with Lupus UK behind you, it will.
 

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Discussion Starter #10
Thanks very much birdie, sounds like you have an excellent group in your area, that's a lot of money to raise, well done. I like the idea of the strawberry tea/garden party and the library, we might have to borrow those idea's if we get off the ground! I think our plan is very much the same, a chance to meet informally for a coffee and a chat and hopefully some medical advice as well.

Hopefully our group will be up and running and written about in the Lupus UK magazine, but i'll keep you updated.

Thanks again for all the advice, its much appreciated.
 
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