advice plz

[stuart]

As a new OSA suferer, i have been trying to find information in my local area regarding support groups. I have found nothing. Therefore i have decided that it would be in the interest of people like myself and their families for my location that a support group is needed. does anyone have any advice on how this can be achieved. I have no idea where i can get leaflets and how i would go about contacting people to get their backing.

when i was diagnosed with OSA i was not given any information from the sleep clinic and spent the best part of 3 weeks studying about it on the internet.

I also want to be able to find help for those who cant afford the treatment as in my home town of Portsmouth, UK, the cpap Machines are not available through the NHS, and we have to purchase them and some people cant afford to buy this life saving equipment.

Any advice from those who attend groups or run them would be appreciated

you can leave an answer here or contact me via my email [email protected]

[Joe McManus]

Nice e-mail address, I wonder if that puts people off joining

You've probably come across this list here and indeed, Portsmouth or nearby areas aren't represented. You could visit one of those once to see what goes on and what's involved in starting your own. The people who list those groups should be able to help you start one too. Just ask them and see what they say.

Because such groups are so fragmented and some too small to sustain a proper effort, I decided to start a website instead. The reach is far beyond that of such a group, but less personal of course. Most people have internet access nowadays and like you, it's the first port of call for most people when looking up new information. Not saying support groups aren't a good thing by the way, real interaction beats most things 'online' for sure. Showing equipment is much easier in such a setting too.

If you'd like to contribute to the blog etc. (could be a post looking for people in your area to hook up with) just let me know!

[JackTheSnorer]

You could also contact the sleep clinics in your area. (Joe made a map here.) Maybe they can put you in touch with other patients or know whether such groups exist locally. Or you can put up leaflets there if they let you.

[stuart]

thanx for the reply............i have no idea where to start.......i have already creted leaflets and information sheets..........not sure what is meant by contribute to the blog.................plz advise

[Joe McManus]

I meant that if you feel like writing your thoughts and ideas on here - http://blog.cpap.co.uk/ - I can give you access to it so you can publish OSA and CPAP related stuff on there. Anything from product reviews to usage tips and industry news would be great. Or when you are ready to launch your group you could have a 'press release' on it. The blog gets quite a bit of visitors so it may help you getting in touch with other Hampshire based patients.

If you ever come across anyone who is not sure they have sleep apnoea, you can send them to this sleep test website I made. It uses the Epworth and Berlin test to help them screen for Apnoea. It could help them decide to go get a proper test done.