Starting a Support Group

I am thinking of starting a support group in Norfolk and would like some info on just how much needs to be done to get it started.

Have searched on this site but no joy and on the Thyroid UK site. Don't want to get myself into something that I am not capable of seeing through so thought it would be a good idea to do a bit of research.

Can anyone advise please? Thank you

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  • Hi Ellarose

    Drop an email to enquiries@thyroiduk.org for info..

    Xx

  • Thanks Louise!

  • i'm in Waveney and there is nothing here either, the head and neck services @ JPH have been great but there is no support group :-(

  • Not sure if I dare take it on but will at least look in to it. Wonder what you do if you put an ad. in the paper and you get 300 replies????? There are so many confused people out there. I was at the hairdressers yesterday and within about 5 mins of talking about thyroid problems with one lady half the other clients were joining in with all types of questions. Most of them totally ignorant about helping themselves or their relatives. That's what made me think of starting a group.

  • I'd be up for joining! I'm based in Norwich!

  • the lead oncology nurse for head and neck @ JPH also wanted to start a group specific to thyroid issues but i think her work load is already to big and she wont have time, there is a team of 3 that deal with patients at the hospital. its not much considering like you say the amount of people who actually suffer with this and have no support, maybe opt for a website rather than ad in paper, at least you can acknowledge an email if there is a massive response, what about asking those who volunteer @ the big c centre @ NNUH they maybe able to help??

  • A website is a good idea. I can do that myself. There's a bit more control then.

    I'll get the details first and then seriously think about it. Thanks for the ideas and please keep in touch janey. Will pm you with my email.

  • Keep me posted!

  • Will do :)

  • You could consider doing a Facebook page rather than a separate website -- we set one up for our local group (Glasgow) last month, and just a few days ago one was added for West Lothian, so new, much-needed support groups are springing up all the time! It's very easy to be visible to your locality on Facebook as well. Good luck with the group!

  • I have considered a web page as I could manage my own site, and also a Facebook page but wonder how either could be useful when there is the HealthUnlocked site available to everyone anyway and there is so much information on here, although I suppose pointing people in the direction of this site (HU) would be a great help. Could you give me the name of the Facebook pages you are referring to so that I can see how they operate please?

  • I think the Facebook pages help publicise the existence of HU and TUK for those who haven't come across them, and provide a purely local forum for engagement. The sites I mentioned are West of Scotland Thyroid Support Group and West Lothian Thyroid Support Group.

  • I think a Facebook page is a good idea. Trouble is that it misses out the older generation who very rarely use it. I am worried about putting myself in a position where people think I have answers to medical problems and of course I don't. I have experience but we are all different and I would never deem to advise. I do agree that some way of pointing them in the direction of TUK and and HU is the way to go. Website or Facebook??? A notice in the local paper every so often about a Local Thyroid Website might be less worrying to people who would never touch Facebook. Even the "oldies" are getting used to looking at Websites and realising their potential. I'm not being ageist...I am 74! I have been using computers since before "Windows" was thought of though so I have an advantage. Maybe a Website with a Facebook link is the way to go. I am on holiday for a couple of weeks with my son who is a website expert. I will get some ideas from him. I will definitely do something :)

  • There is a Facebook group already, one of the founders invited everyone a while back. Search for Great British Thyroid. :-)

  • I was thinking of a local one. Did you mean there was one in the Norfolk area? There are quite a lot about, at least two in Scotland.

  • Yes it's national, just thought I'd mention it in case you didn't know :-)

  • Yes, that's true, however that page is for thyroid disorder suffers in the whole of the UK. There's several more "global" sites on Facebook, like Stop the Thyroid Madness, Hypothyroid Mom, Hypothyroidism UK, etc. Ellarose's would I think be generally specifically for the Norfolk area, and would perhaps be linked to encouraging attendance at a local support group.

  • Although I too have been working with computers since before the web or windows, I and many others are Facebook refuseniks. And not only older people.

    I don't want other people to be able to know what music is on in the background when using Facebook - mainly, I suspect, to push others into buying either the music or products that have some reason to be pushed to people who listen to certain music...

    A plain, simple website is perfectly adequate for most small groups.

    Rod

  • :) I knew I would upset someone! I'm not sure I understand the "music in the background" bit , have never heard any music myself, but I respect your reasons for not liking Facebook. It's here to stay though and the word being spread can be good as well as bad. Facebook is a bit like "religion politics and washing machines" discuss them at your peril...preferably not at dinner parties!

  • :-)

    Facebook have launched/are launching something that uses the microphone on your phone to pick up the music you are listening to or is simply in the background. That is then identified and either a link to the music itself or a related product can then automatically be in some way liked or recommended to your "friends".

    My approach would (probably) be to have a group website - pretty simple and plain - and, if I felt the need, a Facebook page to effectively point at the website.

    Rod

  • Good grief I hadn't heard of that one. I just like keeping in touch with all my grandchildren and children who are rather scattered about. Even if they are too busy to let me know what's going on I can see for myself! Also I run one for my old school which keeps us all in touch from all over the world. Always someone takes advantage of things and turns it into a problem.

  • Facebook is a TSH110 refusenik - I am proud to say I was booted off Facebook probably for being too much of a leftie. if I had known more who runs it I would never have joined in the first place! Web site - much better

    :-)

  • Ah, you remember the good old days of DOS, do you? Happy times ... Still, a Facebook page would cost nothing, would attract those in your locality that do use Facebook, and you could link to the other website from it, as well as vice versa. I have also put an A4 poster on a local shop's advertising board, which is another way of attracting people. You're right to be wary about giving medical advice, and most thyroid support group will have a sort of "disclaimer", such as "The links displayed on this page are not intended as a replacement for professional help. Your own GP should always be consulted in the first instance." I always recommend to people that they post a question on HU, unless it's something very straightforward.

  • Yes they were good old days..nowadays it seems as though the computer is controlling me rather than the other way round:)

    I think the simpler the better for a Webpage with links to those sites that are a great help (HU, TUK and many more) and books as well. All those things helped me so much. I'm quite friendly with the Local Paper and could get a mention there. A notice in the local hairdressers might help! Just generally try to spread the word to the poor devils who are suffering mostly from ignorance and doctors who just....well I won't go there.

    If enough interest forces a meeting then I suppose it could be organised but I still worry that people will want answers to questions I cannot give.

  • I think hairdressers have the potential to be very useful. After all, who knows as well when someone's hair has changed, dropped out, thinned?

    I *think* that somewhere thyroid issues are part of hairdresser training? Maybe France - they are very hot on hairdresser training there!

    Rod

  • Can you believe I got booted

    off

    Facebook? They accused me of harassing friends. All my friends were gutted when I was shut down so I guess they liked being harassed! It is supposed to be run by a bunch of ultra right wing nasties anyway.

  • I'm In Cambridge but my partner is in Norwich so I'd be interested if there were any meetings at the weekends. I guess it could be quite relaxed? Cafe at Earlham park is nice

  • My hypothyroid whippet could attend!

  • Wonder if your whippet would get on with my 20 year old hyperthyroid moggie? :)

  • We have had two cats and they (I have 4 whippets) were fine with the moggie as part of the family they even cuddled up together on the sofa! See one on the street - oh dear it is a different story - my arm gets ripped off holding them back from a good chase - although Billie (the hypo one) is not that bothered about them.

    I think they'd be best hypo mates....if introduced properly :-)

    That is an impressive age for a cat btw!

  • Oh dear that's a bit worrying. Any trouble and I would be out!

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