Monday, 22 November 2010
For the last couple of weeks I’ve been in discussions with various people about starting up a London group for the patient advocacy charity, the British Thyroid Foundation.
When I was first diagnosed I felt utterly lost and confused and I really wanted a support group of some kind, but couldn’t find one anywhere in the city. There used to be one but it hasn’t been running for a while. There are a few groups in other parts of the country I couldn’t believe there wasn’t one in London. Now it feels like it’s time to do something about it, it feels important and I’m delighted that already I’ve been able to connect with some other people who agree with me and have said they will help get something off the ground. Massive thanks to everyone who has offered support already, you know who you are. If you’re reading this and would like to get involved – please get in touch!
So, what sort of group will it be? I’ve committed to the BTF that we’ll do at least 2 meetings a year with an external speaker and I’m aiming for the first one to be in March. That means I want to have an initial planning meeting with interested parties sometime in January. What I’d really like is to be able to help bring people with thyroid issues together so they can support each other and I’m hoping that these big information meetings may act as a platform for smaller groups to form. So ultimately I want to create something like a London network of people with thyroid issues.
I’ve seen peer to peer support groups operate incredibly successfully in other arenas and I see a real opportunity for thyroid patients to be connected in this way.
The other thing I really want to achieve is to help our voices be heard by the medical profession. Those who have chosen to make a career out of healing are often working under a lot of pressure and can sometimes lose sight of the patient perspective. I would love to be able to make a difference to how thyroid patients are perceived and treated by the medical professionals whose job it is to help them. I think it’s so important that people’s voices are heard and that we are treated with respect and consideration and that when we’re ill we are provided with the information we need, in a way that we can comprehend, to be able to make informed choices about treatment options.
I believe that better outcomes can be achieved by patients and practitioners working in partnership.
Oh and it would be good to help increase awareness of thyroid disease with the wider public. I’ve been professionally involved with campaigning for breast cancer awareness for the last few years, using the iconic pink ribbon so cleverly invented by Estee Lauder. It would be amazing if the butterfly symbol for thyroid disease could start to become something that more people might recognise and understand. I wish I’d understood more about my thyroid before I was diagnosed and I wish other people had a better awareness of what my illness entails, so many just don’t “get it” at all! I guess I’m hoping that mobilising a group in London might also be one small step towards that goal as well.
So I’m starting to seek other individuals and established groups who might be able to offer practical help or share their insights. I’m looking into possible venues and potential speakers for our first meeting, I’m thinking about how to divide up all the things that will need to be done to ensure the new group can run smoothly and not take up too much time to run. I’m feeling quite excited.
This weekend I went to visit the Milton Keynes group committee who have been established for 9 years and were meeting to plan their next big information event, which takes place on 4th December at the OU in Milton Keynes. They were a warm and inspiring bunch of women who gave me lots to think about and have offered to come down to London to help with our first meeting.
If you have any words of wisdom to offer, or would like to get involved, please get in touch...I’d love to hear from you.
Thanks so much for reading.