Thyroid Patient Voices, Feb 2014, London event write up

Most of the attendees at the Feb 2014, BTF London Group meeting
thanks to Darren Holman for taking this picture

Thirty of us attended the British Thyroid Foundation Patients Voices meeting at the Royal Free in Hampstead this weekend.  It was amazing, as these meetings always are. Sadly it may be my last one. I told BTF in January that I will be standing down as London Coordinator after this meeting and since then I’ve been trying to arrange for another coordinator to carry it on. Though there are lots of other London volunteers now, who have got involved in the group since it was set up, no one else has thus far said they feel confident to take over running things.  And I’m not surprised, it’s a lot of work, which is why I’m standing down.  I’ve been doing it for three years now and it’s time to move on. I’ll continue with this blog and if the London Group continues I expect I’ll continue to have some involvement and I certainly anticipate staying in touch with the many wonderful friends I’ve made. I hope there may be other ways I can support BTF. But enough is enough.  Being a local coordinator, especially for our capital city, well it’s a big job. I can’t continue to justify the amount of my time it takes.

I’ll be meeting soon with the other London based volunteers to see what we can come up with in terms of a plan for the future.  Watch this space for updates. At the moment we have dates in the diary with the Royal Free for future meetings to take place in May, Sept and November (details on BTF website) so I do hope those meetings will go ahead. Time will tell.

On Saturday everyone had a chance to say a bit about themselves and their journey with thyroid disease to date. Some were newly diagnosed and slightly anxious, seeking information, what to expect and what could they do to help themselves. Some had been ill a long time and had some bad experiences but were now at a point when they were relatively well, a couple were very disillusioned with the medical profession but most, it seemed to me, had found doctors they could work with, who were supportive, even though they may also have had some previously who were not very good. Some people there were really struggling. I think we all found it helpful to be together and share our experiences.

Judith Taylor, chair of trustees for BTF and also the editor of the BTF newsletter and thyroid cancer booklet etc, so a very knowledgeable lady, who told her personal story at one of our previous meetings, came along, which was great. Although we didn’t have an expert speaker for this event it was good to be able to refer some questions to Judith who knows so much.  

We like the Patients Voices events as much as the Information Events, it’s good just to be able to talk to each other.

The key issues that came out of our first group discussion and were identified as subjects for further exploration, in smaller groups after the break, were:

1.     Managing symptoms (lifestyle and diet, etc)

2.     Getting the most out of our doctors

3.     Psychological Wellbeing

4.     Having a Career with Thyroid Disease 

Each group then fed back their key insights and issues to the group as a whole.

One interesting action point that came out was a suggestion to BTF to develop a leaflet for employers to help them understand thyroid disease and how they can support employees with a thyroid disorder. One of the attendees is an employment lawyer who deals with disability law and she and Judith are going to take this idea forward which I think is a great initiative and many members welcomed the idea enthusiastically.

It was also interesting to note that many attendees had quite high powered jobs, as I did too, once upon a time.  Hence the discussion group we created about having a career with thyroid disease – this was a major concern for many of us who felt our capacities to perform somewhat diminished and find ourselves sometimes struggling to manage our work lives. I worry often about the millions of thyroid patients who are perhaps less naturally dynamic than this self selected and very proactive group who have all sought and found help for ourselves – and yet are still often in difficulties. I do feel the NHS – or someone - should be doing more to provide these sorts of groups more proactively to a wider group.  I would love to be making this happen but I have to draw a line under how much of myself I am prepared to give.

The comment I kept hearing – and I could identify with, particularly harking back to when I was very unwell -  was “I’m so glad to hear I am not the only one having X or Y or Z experience/symptom and now I know I’m not going mad!”  Being able to meet and chat with other thyroid patients was just wonderful, as it always is.

Everyone really enjoyed the discussion groups. It would have been good to have had more time, but running an event like this is tiring so I have always limited them to half a day and I think that’s been the right thing to do, for my own and the other volunteers’ wellbeing.

Anyway. I’m happy that we had another good event. Thanks to all who came, particularly those who helped make it happen.   Who knows what will happen next with this group. Hopefully we can find a way for it to continue.

Thyroid Hope, my first post

I've been thinking about creating a blog about my experiences with hypothyroid for a while now. I'm active on a patient support site, www.medhelp.org and I've read a lot of different stuff from different people online and in books, in an attempt to educate myself about this frustrating illness. I'm a member of the British Thyroid Foundation, the organisation for thyroid patients in the UK which is affiliated to the British Thyroid Association, the organisation for medical professionals and I'm a patient at my local health centre (which is a fantastic practice but I’m not going to name here as I want to protect my anonymity) and UCH London.

I'm no medical expert and recognise that I'm unlikely to become one any time soon. I'm a little bit sceptical about just about everything I read. Clearly there's little consensus on treatment regimes for hypothyroid when the standard Thyroxine therapy doesn't appear to do the trick - and the good doctors that I've dealt with in the last year or so have acknowledged that. I'm shocked at the lack of solid knowledge around T3 therapy, for example.

I've been unfortunate enough to come across a couple of doctors who didn't appear to be so good, who certainly were not great communicators or did not appear to be very patient focussed. I came away from those consultations distressed, frustrated and even angry. I recognise that no-one's perfect and hard pressed doctors perhaps need to be cut a bit of slack, but I feel that poor patient care should be addressed. I feel so vulnerable with this illness and I think that's one of the things that it does to people, so I think being treated with consideration and sensitivity is terribly important. I’d like to be able to raise awareness of that with doctors.

I've had some experience with alternative therapists and for now have pulled away from going down that route though I don't rule it out for the future. I’ll say more about those experiences in a future post.

I have found myself really turned off by what I see as the negative and hysterical tone of some high profile "thryoid patient advocates."  I feel there's a real need for a calmer dialogue between thyroid patients and medical practitioners. Who knows, perhaps I'll eventually end up as frustrated and angry as some of those other voices out there. I'm going to try not to though. I'm going to try and address my illness and it’s treatment in a positive and constructive way.

I hope this blog might prove in time to be of interest to fellow patients and to doctors working with hypothyroid patients. If you're reading this it would be great to know why you are here and what you'd like to read about in future posts. I’d be so happy if we could create a dialogue here that would help even one hypothyroid patient or practitioner working in this field.  I think we patients get such a lot out of sharing our experiences and I’m pleased that the medical profession in the UK is increasingly recognising the validity of listening to patients in order to improve standards of care.

Right now I’m particularly interested in the emotional and mental effects of a malfunctioning thyroid gland, so I think that will be the subject of my next post.

Thank you so much for reading this, I hope you’ll come back and even get involved in the conversation if you’d like to.

Hope