Looking for a support group close to ... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Looking for a support group close to Solihull, West Midlands

SammyJ profile image
7 Replies

Hi I have recently given up work due to my ill health and I am interested in meeting up with people who understand my health issues to chat, find out alternative things not tried and generally to have a giggle and make some new friends who can relate to me. If anyone knows of any support groups close to where I live please can you let me know. I have APS, Lupus, sjogrens, Raynauds, thrombocytopenia, a pacemaker for Vasovagal Syncope!! I did attend a lupus meeting but I didn't feel that I was very welcome, I felt judged because I was younger than other people there which frustrated me. Any help appreciated thank you Many thanks Samantha

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SammyJ
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7 Replies

Hi Sammy

Our charity did try to organise support groups across the UK a few years ago, but it was impossible without people stepping forward to head them up and we really need an outreach support worker to make them successful. I know a few patients just meet up informally and that can make a difference, so perhaps ask if anyone is in your area and would like to meet up at a coffee shop or pub? Hope you can find a like-minded friend :)

MaryF profile image
MaryFAdministrator in reply to

Please let me know if you intend to do this again, as I did step forward and offer to do it in my area- East of England. Mary F x

Sadly not until we can get an out-reach worker who can spend time with the groups and help them organise and campaign. I think the funding is about £30K a year probably not including travelling expenses so we would have to apply for grant funding - again, I have a list as long as my arm for things I'm applying for!

However, the funding for the new GP leaflet was successful and we've just designed and produced a new GP leaflet which looks great - I delivered them from Winchester to London Bridge Hospital myself this morning so they'll be put in the GP goodie bags this Saturday. Apparently, they have over 330 GPs attending so that's going to help raise awareness, plus we have the LBH Health Matters article this November thanks to Steve, the patient case study :)

MaryF profile image
MaryFAdministrator in reply to

I would be happy to hand some out! MaryF x

Thank you! We're looking at encouraging all our supporters to help educate their GPs so are planning a co-ordinated effort. We've carried out research into how get awareness to busy GPs (who are probably going to be called Primary Care Consultants soon due to the nature of their job changing so much) and will be contacting everyone soon. In the meantime, I'm more than happy to post you some - how many would you like?

SammyJ profile image
SammyJ

Thanks for your help I would be happy to meet up with people in my area but not sure how I find those people in my area, was hoping some people close to me in the west mids may reply. Thank you

Adam_88 profile image
Adam_88 in reply toSammyJ

Hi Sammy. See this is an old post. But hopefully you will see this. I'm from Walsall in the West Midlands. I have recently had a pacemaker fitted. I'm only 26 and had it due to my mild muscular dystophy. I am too ill to work so now how you feel. I do feel lonely and that a lot of people don't understand so it would be nice to meet with someone similar. So if interested give me a reply

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