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Heather Mills - Amputee Forum
cherylm

Has anyone started a support group "from scratch?"

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There are an amazing number of amps living in northern Calif...it's an unexpected (but quite nice) part of my move up here. Most of us (at least most that I've met) are active and well-adjusted...but there's no real "system" in place for reaching out to new amps or to those who are NOT active and/or well-adjusted to this life. In fact, the most recent peer visitor assignment I got was to see an older fellow who is a new AK...it wasn't a good "match" at all, but when I mentioned that fact I was told that "we really haven't been able to find a male AK to see him."

So I visited the guy...and was able to find a male AK to come with me...and the fellow was so very appreciative to have the chance to actually see and talk to experienced amps. But it was such a random sort of occurrence, and it shouldn't have to be that way, especially in a county with such a noticeable number of amputees!

About this same time, my CPO was talking to a client who had started an amputee support group in her previous city and was considering trying to start one up here. Her concern is that she ran into a number of problems in trying to get her previous group up and running...mostly in the line of organizing goals and refereeing personality conflicts. The two of us have met and now we're BOTH considering trying to get a support group going in the area up above San Francisco.

But I'd sure appreciate some ideas, tips, and tricks for how we might make this a successful project! I'm pretty good at working with folks one-on-one, but I'm sure an entire group of folks dealing with various stages of amp-life and adjustment would be more of a challenge!

Soooooo.....if you've started a support group in the past--or even been a member of one--I'd sure be thankful for any input you might have on "what worked and what didn't." :blink::smile:

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I personally haven't used a Support Group Cherylm, but just wanted to wish you luck - keep us posted. The Limbless Association in the UK does good support work and they are a very approachable bunch. It might be an idea to drop them a line: enquiries@limbless-association.org

www.limbless-association.org

Good luck!

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Not started up a support group Cheryl, though over here in the UK we do have something called Limb User Groups. These Groups were initially the idea of the Gov, I think, who nowadays are often wanting feedback from people using the services and are usually set up by the prosthetic centre. I got involved with ours some years ago, primarily because I was having problems with the service, and got quite involved with it for many years. The user group tried to set up a peer support, such as you are suggesting and I remember visiting a few people but I don't think that side of things really took off, however as Kate says the Limbless Association in the UK does have a volunteer visitor system where experienced amputees meet with new amps etc., over here in the UK volunteers are required to have what they call a CRB check, this is a national check required for all people working with what they class vulnerable people, but think it applies to anyone who works with children, the elderly or visiting people to make sure they do not have a criminal record, or could be a danger to people they are supporting.

With regards to group meetings, I think a lot might depend on the age of the majority of people who attend, perhaps the way the meeting is organized etc. In the area of the Group I was involved with, there was a higher percentage of elderly amputees who enjoyed some of the activities like coffee mornings etc., but we very rarely got the younger amputees attend. It was also organized around a Committee, which a lot of people just didn't want to be involved with and I can't deny that we also had our fair share of personality clashes at times. However, I have been to other user groups around the country which were quite lively organizing all sorts of activities and also some had speakers at that meetings. I think a lot will depend on the location and the average ages of the locations amputees.

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Hi,

We are starting a self-help support group, run by amputees for amputees the limbless and their carers of all ages, Here in Norwich Norfolk UK.

I am ATK amputee and found support from other amputees more helpful than the medical staff, talking with others helped me to understand what my stump was doing, and that I was nt the only one feeling what I was, it also helped me come to terms with my new way of life, but once out of re-hab, I lost that comunication, OK I visited the prosthetic centre, and had the odd 5 mins, but no in depth convo, where I could share my progress, moan about my partner! (She's been brilliant through it all) and much more.

We started Walkon Crafters to help others before, during and after amputation and pass on information to the carers, family, freinds and employers if needed. As my partner and myself are into Jewellery making, Jewellery box decorating, Resin, Polymer clay and more, we decided to add Crafting to the group interests, offering all kinds of classes as an introduction, maybe a group funding excercise even business venture.

We opened a facebook page to see if there was any interest, and have found many amputees do some kind of Crafting from Knitting to Rag Rug making etc, willing to share their crafts with others.

We are at present in the process of gaining funding for our 1st meeting, We have not rushed into anything but have a few interesting people to contribute to the groups post... businessman from US involved with Prothetic art, a researcher who has writen 2 reports laqtely concerning amputees, we have support from a local co-op of other Norfolk based Charities and good causes, and Norwich City Council.

As stated above we have a FB page https://www.facebook.com/Walkon.Crafters.UK

where a warm welcome awaits all new visitors.

Good luck and let us know how you get on.

Chris

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Good luck with it all! I used to live in Norwich - where are you going to hold your meetings? If I'm up there visiting my daughter I could pop in.

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Thanks for all the comments and suggestions, gang! My co-conspirator in this possible support group has loaned me her records from her previous group, and I'm going through all of that right now....hoping it will give me some insight into the pluses and minuses of the support group structure. :smile:

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Reading some posts and wondering how you're doing with the support group. The Amputee Coaltion can be a great resource with support groups. If you haven't already tried it, that would probably be your best bet. Lots of luck.

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Marcia, we have a third woman in our little "planning committee" at this point. She's more interested in doing some sort of one-on-one phone or web outreach than in anything like a physical peer visiting activity. I've had things on the "back burner" for a while as I've been involved with A) having a new leg fitted and built (which took longer than any other of my legs, aside from the very first one); B) working on a crafts project for a local charity; and C) writing the script for, and performing in, my choir's spring performance. (Yeah...I get involved in a lot of stuff. :rolleyes: )

Anyway, I'd been hoping to get to Orlando for the conference this year and checking out the Support Group Leader training, but my schedule and finances conspired against me. The gal who has some support group experience in her past was trained and certified by another organization, but we both have some slight qualms about the background of the organization (which is basically tied to a single, specific prosthetics chain). She has had some contact with the Amputee Coalition as well; they've provided us with some of their "organizing a support group" literature.

Now that my leg is complete and my concert is over with, I'm hoping to get back to a real effort on the support group front. We have the possibility of one space for meetings (again attached to the one specific prosthetics chain), but I'm hoping that we might be able to line up a variety of spaces throughout the county, both to get away from the idea that we are "sponsored" by a specific vendor and to make it easier for people from other parts of the county to get to us.

Walkon, how is your group in Norwich coming along?

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