Has anyone ever been to or set up a support group for allergic parents?

[OHforDUCKScake]

Has anyone been to an allergy support group or set one up?
My local surestart centre/childrens centre has allowed me to start up a support group for parents of allergic/intolerant children. They are giving me a room every other monday with their full support, full use of their play room (which is magnificent!) and someone to create flyers and posters for me.

Problem is, I figured Id just advertise in hospitals and doctors surgeries and via health visitors but Im told that advertising for a support group in hospitals and doctors surgeries may not be allowed?

I just called my surgery and its closed for lunch.

Any experience out there?

Thanks.

P.S the group is in the Brighton area. 15 minutes from.

I think what you're trying to do here is great, and I have often wished there was a support group in my little provincial city.

However, I do think you need to be very careful....

Are you doing this through the anaphylaxis campaign? I think they provide training, and possibly resources.

I have some experience of providing official breastfeeding support at hv clinics and children's centre (nothing to do with allergies). For that reason, I think that:

1. You might need some basic counseling skills. Parents often need to offload a lot of stress, and the way you listen is very important.
2. You will need to make sure that any information you give is accurate and up to date. Parents will see you, the leader of the group, as the expert. That's quite a responsibility.
3. You will need to make sure you are giving information rather than advice (an important distinction!)

4 You must make sure that you are able to recognize when you need to signpost parents to other organisations which can help them. This is about knowing your limits and keeping children safe. And of course you will need to know who to signpost them to...

1. You'll need to manage the group quite carefully, with tact and wisdom. For example, what will you do if you hear one mum telling another mum that kinesiology really helped with her daughter's dairy allergy?

I can understand why doctors and hvs might be reluctant to advertise a group which is not officially sponsored by a recognised professional body in the relevant field. (For example, in the world of breastfeeding support, I have heard of support group mums giving each other advice which is totally inaccurate and sometimes downright dangerous for the baby - and that kind of support group should absolutely not be advertised by hcps!)

I've seen you around these boards for years, and I am sure you could make a great job of organising a support group. But I really do recommend going through the anaphylaxis campaign, allergy UK etc

Thanks Green its not through AC but I have just completed an NVQ through the childrens centre with regards to volunterring which has covered everything you have put.

I dont think they would have allowed me to set the group up otherwise.

Im hyper aware of pointing them in the right directions and absolutely not giving medical advice or such like.

At the end of the day Im there to say Ive been/going through it and I know how hard it is to be cooped up at home alone because you have a crawling baby anaphlactic to the biscuit crumbs or toast and butter in the usual play groups.

Its a group to feel safe in and socialise with other like minded mums.

Im taking it seriously.

That said, I will call Anaphylaxis Campaign next week to get their advice on it.

Ive heard the anaphylaxis campaign does things very differently.

Ive been talking to several people who have been to different AC groups and they are formal adult meets.

This is totally not what this is, its a playgroup for the babies/toddlers in a safe environment where the parents can get support from one another or just moan etc.

It's a great plan , I keep meaning to start an informal group in my area - not for medical advice , just for support and to swop recipes etc .
I already know lots of families in our area through chitter chatter .
There's a huge need for support groups - it can be hard coping with the pressure , only a family with similar will get it .
Good luck

This sounds amazing and is something I would like to set up too. Like you I would love to do a group where the kids can come and everyone can just give each other a little moral support and advice. I don't know anyone in rl with children with allergies and it feels very lonely sometimes

Sorry my last post sounded so preachy. I do think it's a great idea to have this kind of group.

When ds1 was very little, there were so few baby and toddler groups I could take him to safely. Everything seemed to resolve around snacks and food activities, and it was so stressful that I just stuck to a couple of safe church groups.

Sounds like your local children's centre is great, and its wonderful that they are supporting this.

I do think you will need back up and support... You may be dealing with mums who are very stressed, and also with mums who give each other dodgy information within the group. But it sounds like your children's centre is able to provide that support.

Good luck with this.