Saturday, 9 April 2011

Initial reflections on our first meeting....

Woooh, my brain's swimming, just been up on the roof doing some pseudo yoga/pilates stuff to stretch out my muscles (can’t do any proper yoga/pilates stuff right now as I haven’t quite got the energy for it, but I’m getting there). It’s a beautiful sunny day. Lovely.
We had our event this morning, so I’m pooped!  Not sure how many people turned up as I think we slightly lost count. That doesn’t mean there were millions, we think about 40 or 50 maybe. But generous souls that they are they gave us some lovely donations and we raised £145.29, including two new memberships for the BTF. And there were some great comments, lots of people saying how much it meant to them to be able to connect with other people with thyroid disorders, to access reliable information and particularly to hear Mark’s talk.
Mark was brilliant, his talk on the UK’s iodine status was fascinating and he answered a huge number of questions. Unfortunately there were so many written questions submitted and he answered them so thoroughly that we didn’t have a lot of time for further questions from the floor so there wasn’t as much two way dialogue or time for attendees themselves to speak as I would have liked to have seen.
Our programme was quite packed in the end, I’ll say more about what else went on in my next post.
We got everyone to fill out evaluation forms and I can’t wait to see what they said on them. Another Team member is typing them up this week so she took them home with her. My husband saw a few though and thought they looked broadly positive.
For my part I couldn’t focus brilliantly on the talks because my brain was a bit fluffy! Which is a shame but I can watch them on video at a later stage, because the wonderful Lindsay and Scott from Refinery Productions captured the whole thing for us on camera. Thank you guys for your incredible generosity in doing this for us! Assuming I can work out how to upload film files you too will be able to see the whole thing in due course!  
Stand by for a video stream, but don’t hold your breath, it may take me some time to do (apparently there will be a few things I need to do with files before the youtube stage so you might need to bear with me).
Once the dust has settled I know there will be lots we can learn from today about how to do an even better event next time.
Several of us were very taken with the idea of doing an Expert Patient course together so we will be looking into that as a possible group activity.
We also gave people the opportunity to vote for what topics they would like to see covered in future meetings. By far the most popular was “how to get the most out of your doctor”.  Many of us, sadly, have experienced communication difficulties at one time or another with the medical profession.
And it was noted that sometimes people with thyroid problems can seem difficult for professionals to communicate with, because we can suffer from impaired cognitive function which might cause us to appear super sensitive, depressed or not very clear about what we want to say.  So this feels like a very hot topic and something I hope we can address to help our group members develop productive partnerships with their doctors and access the best possible care.  It is a shame that the onus seems to be on us as patients to improve OUR communication skills! But we are nothing if not tenacious and resourceful, so we soldier on!
I think an Expert Patient course, entirely for people with thyroid disease, could be a brilliant step towards this! Something exciting to think about!
We already have a date in the diary for our next Endocrinologists talk. Graham Williams from Imperial will be discussing his speciality, thyroid and bones on 15th October, which I think will be fascinating.
But perhaps we can do more between now and then. A few new people today indicated they might be interested in getting involved with the Team so it will be great to consider our next steps together with possibly some fresh input, at the same time as reviewing today properly.
I will post again when I’ve had a chance to think about it all a bit more, I feel I’m going to have quite a bit to say about this event, but just wanted to  get this up today and say – hurrah! We did it!!
The London Team have got our first event under our belts!
Thanks for reading and for your support and if you were there today – why not comment below on your impressions – I’d love your feedback (especially as I’m still to see those evaluation forms!)
Hope J



  1. I'm so glad it went so well and rather smoothly!
    I'm a few hours ahead of you (I think around 11 hours) and all day yesterday (sat 9th) I was thinking of you and wondering how it was all going and I wake up this slightly cool sunday morning and see this update...yay!! :)

    The Expert Patient course sounds awesome!! Hopefully your fluffy brain co-operates a bit more for the next one!! :)

  2. Ah Natalie - so kind of you to be thinking of us!! I'm still waiting for my colleague to send through the evaluation forms but have had some emails mostly very positive but also a couple of people who were less satisfied and had some constructive feedback that we can hopefully use to improve our next event. I'm meeting Expert Patients on Tuesday to plan something with's all happening! how are you? xx

  3. Constructive feedback is always useful, points to improve on are always handy!! Hopefully tuesday is a day of brainstorming and planning and overall constructive.

    Ergh, well, not so great over here at the moment. Thyroid was going well up until about 10 weeks ago when I started having issues with blood clots (in my legs) and the stress on my poor body from the clots has sent me hyper. I fired one doctor who was being totally useless and met with another who is amazing. So, slowly things will get back on track.
    How are you doing?? xx

  4. Hiya Lorraine! I also have a blog about Hashimoto's disease if you are interested in reading it

  5. I'm sorry that I couldn't come to the event - was otherwise engaged - but I would be very interested in the 'Expert Patient' idea. I was born with no thyroid gland, and received excellent care from paediatric department at our local hospital until I was seventeen. However, since then it has been quite difficult, as different GPs have very different views on how to treat my condition. I have been in the UK since 2005, lived in four different places and had four different GPs. Again, they've all been very different in their approach - quite "experimental" really! I now realise that my condition is potentially quite serious, and I think it needs more careful management, but this is hard to establish. I am otherwise a fit, healthy person, but I would like to talk to an expert on my condition, and see if some aspects could be managed better!

  6. thanks Nat - so sorry you have been having such a tough time, delighted to now be connected with you on Twitter! Hopefully the new doc is working out?

    thanks Crystal, I've signed up to your blog and read the latest post today, looking forward to reading your whole story. :)

    Hi Corrina, I've never heard of that before, I wonder if you ought to be referred to a specialist perhaps. have you been in touch with the British Thyroid Foundation for some advice? they are really knowledgeable and helpful I'm glad to hear you are otherwise fit and healthy. If you're in Camden you could come to the next Expert Patient meeting with me...but you probably aren't, see my next post. glad you found my blog, let me know how you get on with BTF if you contact them, I'm sure they could give good advice on your situation.