Thursday, 31 March 2011

A new group for London - all set for our first event

A few months ago I vowed to set up a support group for thyroid patients in London. When I was first ill I really wished there was somewhere I could go to connect with other people who might have some inkling of what I was experiencing. But there was nothing. I spoke to one of the telephone support contacts at the British Thyroid Foundation and she was really nice and helpful but I still felt very isolated and confused by what was going on.
I spent quite a bit of time on thyroid discussion boards and I certainly found a community there but I got fed up with it over time, some of the people on there were very forceful about their opinions around the correct treatment for my hypothyroid and as it happened their views didn’t always tally with what my doctors were telling me.  So ultimately that became quite unsatisfactory. The more I learned for myself the more I came to realise that I couldn’t just accept what these self appointed amateur experts were telling me. I found myself wading through a real hotchpotch of different and sometimes opposing positions.
And I noticed that a lot of them just seemed to be total gloom merchants and scare mongers. I remember one telling me when I first logged on, that I must expect that my doctors would be unsympathetic and that I would have to fight them every step of the way. Well I’m glad to say that hasn’t been the case although I know that some people do have a very rough ride with their doctors and I have actually had one or two hiccups with mine along the way (see previous post about the crazy letter one sent me the other month for example!). On the whole, my doctors have been good and I am more inclined to value professional medical training and experience over someone who just happens to have the time to dominate an online discussion board.  
I’d pick and choose what was helpful for me on those boards and some of it was but I ultimately I realised that the original advice from my doctor made a lot of sense – reading random medical opinions on the net is not advisable!
I reached the conclusion only to trust information from accredited sources. Not to say I won’t listen to anyone other my doctor, I’m always open, always interested in what people have to say. But my b*s**t detector is pretty finely tuned these days.
Once I started to feel a lot better I started this blog and I also started to put the wheels in motion to set up a support group, working with the British Thyroid Foundation whose links with the medical profession and impeccable professionalism made them the obvious choice.
I’ve been lucky enough to find some fantastic people who are now working alongside me to make this happen. We have been holding planning meetings in the wonderful Royal Festival Hall foyer since December (top tip if you need an informal meeting space for small groups in London and don’t mind being in an open plan space, it’s super central and very nice).
London BTF volunteers at our third planning meeting

Our first information event is now less than 2 weeks away, 9th April, 10am – 1pm at the Royal Free in Hampstead. We’re expecting a good turn out, there’s been lots of interest already. Eminent endocrinologist, Mark Vanderpump, is speaking, unveiling the results of the recent UK Iodine status study which he chaired. Judith Taylor, thyroid cancer survivor, BTF Trustee and editor of the BTF Newsletter is also speaking. A wonderfully generous filmmaker has offered to come and film the talks so that we can hopefully to put them up online afterwards.
We’re excited to be working towards creating a space for a mutually respectful and positive dialogue between thyroid patients and medical professionals in London, and a space where thyroid patients can connect and share their experiences as well as access good quality information.
If you want to come along please drop me a line to book a place. It would be wonderful to meet you there.  
I’d also love to hear about any experiences you might have had with other support groups, of any flavour, what are the key elements for success, are there any potential pitfalls you’d advise us to look out for? I’d love to hear from you.
Thanks for reading. J


  1. Ohhh....I'm so excited for you for the first meeting on the 9th!! Sounds like quite a good session you have planned. I'd love to attend, but, you know, geography gets in the way lol!!

    Good to hear that bulls**t detector is finely is mine!! It does me well! lol :)

    Thanks for the latest update...Good luck from all the way over here for the 9th...I'm sure it will all go smoothly and very well.

    Take care xx

  2. I just wanted to wish you good luck for the 9th Lorraine.

    For as long as there is hope we have a chance.


  3. Oh oh oh, thank you both! :)))

    It's looking like it's all falling into place. I'm really hoping we will be able to film it so people who aren't able to attend will still be able to access the presentations.

    It means the world to have your support!

  4. Hi,
    I discovered that I had an under-active thyroid in mid 2008 and went through a nightmare until late last year, when it seems, the medication finally started working. My own feeling is that I'd had the condition since 2002.

    But I'm appalled at the lack of understanding from the medical profession about my condition, especially its effects on both mind and body.