why is it so hard to find a support group

[lollierai]

have tried searching for local support group and am finding it almost impossible ...have of the net searches are online groups or you have to join and pay membership fees to get a list and they might not have one in your area...anyone know of a group in or near colchester essex ??

[MaryF Administrator]

Hi there, groups are starting to be set up across the UK, this site in terms of the online forum is still fairly new. I am hopefully going to be setting up one in the Woodbridge area of Suffolk, which will be nearer to you. These things will evolve, however the online support is good, I will contact the charity to find out progress myself starting one up. Best wishes. Mary F x

[paddyandlin]

Hi lollieral,

Finding groups can be hard and I know as nary said we trying to organise this and I know that Kate from hsf has a list if local groups set up the issues is some of them are mire active than others if you email Kate at [e-mail] you also have us here on the group that is willing to help. Are you going to the patients day on 16th may as you will meet a lot if us there WWW.Hughes-syndrome.org have a look and book your self on.

This is a issue of clear support in the UK but hsf do a great job we just need to get more local people supporting

We always here to help

Paddy

[Hidden]

Hi Lollieral

The problem with support groups is that they rely on very kind and energetic patients who are willing to be volunteer leaders - many also have very busy lives themselves so not many people come forward to set them up.

However, there is a group in Essex run by Sarah Pearson and she can be contacted on: [e-mail]. But please note she runs it for the whole of Essex and not just Colchester.

There seems to be a lot of patients in Essex - someone contacted me last week wanting to set up a group for Basildon Hospital as there are over 30 patients there.

[SassyOne]

I had a hard time finding a forum I don't think Canada has one. So happy you guys have one. I doubt there will be any support groups near me. It seems like nobody has even heard of it. Very few Dr's have heard of APS or know much about it. Canada really needs some awareness! I can't imagine how many lives would be saved if there was more awareness. thank god for my new GP, he doesn't know much about it but I'm almost 30, have had symptoms since I was a child and I am just now finding out.

This site is so helpful! Thanks everyone!

[MaryF Administrator in reply to SassyOne]

Very pleased you have found this one! Mary F x

[Hidden]

Very pleased to have you here too but there was a Canadian group set up by Jenny Ma - [e-mail] - but that was some years ago. I do know there was also a Canadian FB group called the Lupus Anticoagulant (I think there was confusion about the actual name for a while) but that seems to have disappeared.

[london-lass]

Hi there

I don't know how mobile you are, but I run the London Support Group, and several members come into London from outside it because it is easy to travel to London. We would love to see you. I am just about to post for the next meeting which is on April 25th at St Thomas. As has been mentioned, why not come to the Patient's day in May? That is a great time to meet others.

Blessings Ann

[london-lass]

Actually, I wanted one so set it up myself. Not difficult! Maybe consider it?

Ann

[margaretjo]

Ive had the same problem . When I received the pack from Hughes Foundation I contacted the person it listed as the contact for a local group and have recived no respponse, I

[Jade]

I am in Yorkshire and answered a message about meeting up with a person who I know is very near, last year but I too never got a any replies.

[Hidden]

This is the other problem - people say they would like to set them up in all good faith, but then disappear without telling us due to personal circumstances. Marfaretjo - can you remember who you contacted? I will try to follow up what's going on.

Jade - this is often the case, some people simply aren't interested in meeting others with the same condition or they become ill and can't make the meetings. Ann's London group is so successful because she is very dedicated to it and make sure it meets once a month in a public place without fail. Not many people can do this - we did have a really good similar one in Brighton for a few months but then the group leader moved ...

In the future, the HSF would like to employ a dedicated staff member to manage local groups and act as an out-reach worker. However, time and money is too stretched this year but we may apply for the grant next year. If we had a full-time person to do this, they could organise talks with doctors etc in your areas, run events/fundraisers, distribute information in local hospitals, surgeries etc. The scope is huge but then so are the resources needed to do it! - but it is on our radar.

[paddyandlin]

As is a whole load of other projects sadly with a limited resources you have to plan what you can do, but it will all come out in the wash.

Paddy