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 15^th 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

Lorraine

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, 9^th 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