Support groups- Have you started one?

dori2o

Has anyone here started, or been involved in the startup, of a support group.

There are no groups locally that I can find but I know of 3 people who suffer from similar long term conditions as me, and whilst we could be a group with just the 3 of us meeting up once a week/fortnight/month, it would be nice to try and get it running on a larger scale.

Obviously without the proper people involved the group wouldn't be able to offer medical advice, but I suppose that somehow we could incorpiorate it into our group if we had someone who was properly trained.

Any advice at all.

LunaLady

I run a support group in my area for parents of children with additional needs. We meet one evening a month in a local pub.

We have a FB page too, this acts as a way of letting people know when we are meeting. Sometimes we have quite a few people come, other times not so many.

We dont offer medical advice, mainly support and sympathy.

We advertise at medical centres and at the local childrens clinics.

dori2o

Cool.

When I mentioned about giving medical advice at the end of the first post, what I was getting at was bringing someone in for a 'talk' etc.

A bit like the Union meetings, we always have a guest speaker.

Ideally I would hope to be able to hold the meetings in the local community centre, or in our local Library who have days/times set aside for such events where people can talk freely without the need for total silence.

The community centre would be ideal and it's cheap. Then we'd have the room to be able to maybe get in someone to talk and give advice, or maybe get in someone to do yoga or some exercises etc.

I may have to look into starting a FB page or similar.

GlasweJen

I've never started a group but I've been involved in admin of a support group. If you ask the library they can sometimes provide a room for free. Coffee shops are also sometimes happy to lend you a room as long as no one brings coffee in a flask with them!

I find that support groups that happen in a place like a pub or coffee shop are better because people can splinter off from the main group if they want.

Try to avoid the whole "my name is Jennifer and I'm disabled" sitting in circles and telling stories type setting - I've been to a few of these and they are beyond depressing.

kazzah60

Hi Dori
I am chairman of what started as a very small support group 20 years ago and have been involved for 19 years now

the condition we support is quite unique ( a disability arising from a difficult birth which leaves the arm paralysed)
when we initially started it was to offer support and a listening ear for families
since then we have actually forged excellent relationships with the two leading centres for the treatment of the condition and due to their kindness in sharing their expertise we can explain what medical options MIGHt be available to them - always with the proviso that they DO need to seek specialist help

we have now produced a range of information sheets about the various treatments available ( the hospitals concerned read through our information and verified it all for us) and like wise our leaflets on benefits and legal remedies - have all been verified

We have a very active facebook page and keep in touch with our members through a quarterly newsletter - in which we feature personal stories, achievements, guest articles etc

the main advice I would offer is to find out what your "members" expect from the group ( a questionnaire or Q&A session is helpful) and then to try your hardest to provide that informaiton

despite only having a membership of about 1500 members nationally our members are great at fundrasing for us and our annual income is normally around £45-60, 000 - from their efforts and events - obviously we are a registered charity and that helps

Contact your local Voluntary Services Council - they usually have and advisor to help people set up new groups or charities and can sign post you to local community funds which can enable you to pay for room hire etc and to offer travel expenses to guest speakers

I have never regretted getting involved with our group - it has been hugely rewarding for both me and my son who has the condition and the people we have met have been inspirational

please feel free to PM me if you have any questions and I will try my hardest to offer you some advice
Karen