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


Tuesday, 5 April 2011

Radioactive Iodine Film preview at our event!

Well how exciting!!

Only a few days to go to our event and today we have agreed with the Nuclear Medicine Department at the Royal Free that they are going to preview a new Patient Information Film they're making for
patients considering having Radioactive Iodine Therapy treatment.

Our attendees will be invited to give feedback in advance of the final edit! The completed film will not be available for at least another six weeks.
  • The aims of the film are:-
    • To help patients understand the information that they are given before considering the treatment
    • To inform patients about how safe the treatment is and how easy it is to take.
    • To help patients understand the simple precautions which protect their friends and family for the first few weeks after treatment.
    • To provide a resource that patients can refer to if they want to review their precautions or any other information they have been given.
This is a short post because I've been doing quite a lot of preparation stuff for Saturday already today and I'm a bit tired :) but I thought it would be good to put a note of this most recent development.

We will also have literature and a representative from Expert Patient attending. It's all coming together. Are you coming along? You will need to email me to book a place.

I'll add some  links to this tomorrow. Now I'm off to cook some pasta for my tea. :)