What next? What can I do that will be most powerful?

Thinking about some of the thyroid related things I would like to do once I've stopped running the BTF London Group.

While I need to move on with my life and don't want to be forever harping on about all things thyroid, I still feel passionately that it's important to raise awareness of thyroid disease and things that people can do to help themselves, also to raise standards of care for thyroid patients who are currently not always being treated consistently or well.  And while I salute BTF for all that they do, I feel there is scope for a great deal more to be done and as they are so under resourced and seemingly so slow to get themselves resourced up to do more, well it just seems like there's a glaring gap that needs to be addressed, so maybe I will give myself a project....

Will I:

• Write a book? 
• Pitch articles to magazines and periodicals?
• Pitch talks to groups of medical professionals?
• develop this blog as more of a resource?
• collaborate with a science writer to provide more articles on latest scientific research?
• Seek to influence Mind (the UK's leading mental health charity) to start to provide more information and support for thyroid patients, because they currently don't think it falls within their remit?

Ouch, so many possibilities, I could in fact quite easily spend my entire life on this stuff. And that's not going to happen. So I have some thinking to do and some decisions to make, what to do, what not to do, where to focus.

In the shorter term I am off to the House of Lords next week, to meet with my fellow BTF London Team of volunteers, kindly hosted by our wonderful patron, Lord Borwick of Hawkshead, who is also taking us on a tour of the House which will be exciting.

We will be seeking to find a way to keep the London Group going with me not running it any more. I am excited that nine enthusiastic and wonderful people are coming to that meeting, between them I'm sure they'll find a way to prevent the group from folding. The challenge is that everyone is either not very well, or super busy, or both. But the plan is to try and split the tasks so the load is shared, and perhaps to do things differently in future so that the whole thing can maybe be simplified and become less onerous to do.  

The House of Lords, Westminster

It's a little  ironic, to be going to such a seat of established power as the House of Lords and at the same time trying to decide what subsequent action I can take that will be most powerful in the face of what seems like an overwhelming challenge - how to make things better for hard to treat thyroid patients in this country.  I hope that this meeting can be a catalyst for meaningful change, somehow, someway. It signifies me moving forward powerfully into the world. Giving up the admin headache of running the group and freeing myself up to do something bigger.

Of course I may decide to leave thyroid things alone for a bit. I have a lot of other things going on in my life. Very many competing priorities. I may decide to focus on something else entirely. Perhaps my letting go of the group is also time to let go of the wider challenge and trust that other people are going to be able to bring about the changes that need to happen.  The BTF Hypothyroid Care Strategy Project is underway now after all, and I was one of the people who pushed for that to begin.

One of the many wonderful friends that I have connected with on this journey now seems to have entirely moved on and is pioneering an important campaign for muslim feminists. Her example inspires me. I feel I need some space to think and breath and the answer, to the question of what I want to do next, will come to me.

Hope

Breaking news about thyroid disease

Today's prompt for Health Blog Post Month (#nhbpm) is to write a news style post, here goes:

Read all about it! 

This Saturday, 10th November, leading endocrinologist Stephen Robinson, will give a talk on the issues around pregnancy and thyroid disease at the Royal Free Hospital in Hampstead.*

The meeting is organised by The British Thyroid Foundation (BTF), a tiny charity with a massive challenge..  

Many families are directly affected by thyroid disease. It is very common - one in 20 of us in the UK have a thyroid disorder - yet they will have seen little in the media about it.  It is largely a hidden disease though in some cases has a devastating impact on people’s lives and can lead to miscarriage or pre-eclampsia if not properly treated in pregnancy. 

Anyone wishing to attend this meeting should contact Lorraine Williams to book a place. 

High profile thyroid patients have included the popular writers and broadcaster Clare Balding and boy wonder of the 2012 London Paralympics, Josef Craig.

The thyroid gland in your neck produces hormones for the cells in your body to work normally. When it goes wrong it can have wide-ranging effects.  Up to 20% of patients have symptoms that prove difficult to resolve.  Thyroid disorders can run in families; they tend to occur mainly in women, but anybody - men, teenagers, children and babies - can be affected. 

While often these disorders are easily managed, this is not always the case and many specialists agree there is still a great deal more we need to know about the thyroid and how it works.

Recent research has highlighted the very real hardship and distress that can be caused by thyroid disease, yet many doctors admit they are not as sufficiently well-informed as they need to be to fully help their patients. The internet can be full of rogue information and scare mongering about thyroid disease which can lead to confusion and distress among those affected.

Raising awareness about thyroid disease and supporting patients is vital. Most people would benefit from being better informed and prepared to deal with thyroid disease, should it happen to them or someone they are close to. 

Set up 21 years ago and still operating from a tiny office in Harrogate, North Yorkshire, heavily reliant on a team of volunteers around the country, BTF operates on a shoestring budget.  The charity desperately needs more funding to grow; to support the increasing numbers of thyroid patients who contact them, by providing information about their illness they often cannot find anywhere else, and to help fund more research into thyroid disease.

BTF works closely with the medical profession and other organisations[1], funding and supporting crucial research projects, doing their best to influence medical practice on thyroid disorders, ensuring patients’ voices are heard and creating a strong nationwide volunteer network.  But more needs to be done to meet the growing need from patients for information, support and advocacy, as well as to provide more funding and support for further research.

To find our more, or to make a donation click here to visit the BTF's website. 

*For details of how to register for Saturday's event click here

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[1] BTF is a National Institute for Health Research (NIHR) partner organisation and collaborates with the following: British Thyroid Association (BTA), Society for Endocrinology (SfE), Association for Multiple Endocrine Neoplasia Disorders (AMEND), Butterfly Thyroid Cancer Trust, Cancer 52, Thyroid Eye Disease Charitable Trust (TEDct), Thyroid Eye Disease Amsterdam Declaration Implementation Group UK (TEAMeD), Addison’s Disease Self-Help Group (ADSHG), Hypoparathyroidism UK, and Sense about Science.