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 surgery, London patient event 7th Sept 2013 - info

The London group of the British Thyroid Foundation (BTF), a national patient charity, is organising an event for thyroid patients and people with an interest in thyroid disorders at the Royal Free Hospital, London on Saturday, 7^th September.

Leading Consultant Endocrine Surgeon, Mr Fausto Palazzo, he will be talking about thyroid surgery and answering questions on all aspects of thyroid health.  

Mr Fausto Palazzo, Consultant Endocrine Surgeon, see bio below

The event will also be an opportunity for patients to share their experiences and connect with each other.

Thyroid disease is very common and usually easily treated - one in 20 people in the UK have a thyroid disorder - yet it is largely a hidden disease and some cases can have a devastating impact on people’s lives. 

Thyroid surgery is used in managing several disorders of the thyroid gland and there are several different kinds of surgery. Complications are rare and usually treatable but can be significant. To avoid complications, thyroid surgery should always be performed by an experienced surgeon who regularly performs thyroid operations.

Thyroid disease will be relevant to many of your readers and a real problem for some of them, we would be thrilled if you could write about our event to help reach out to those who could benefit from it.

Where and when

The event will take place on Saturday, 7 September, from 10am to 1pm, in the Sir William Wells Atrium, Royal Free Hospital.

For more information or to book a place, email lorrainewilliams@btf-thyroid.org.

Refreshments will be provided. Donations will be welcomed, with a suggested minimum of £3 per person, to help cover the costs of the event.

 Notes:

Mr Fausto Palazzo is a Consultant Endocrine Surgeon at Hammersmith Hospital and Honorary Senior Lecturer at Imperial College London where he is Clinical Lead for Endocrine Surgery. He trained in general surgery in London and in endocrine surgery in Oxford, Sydney and Marseille. He has one of the UK's largest practices in thyroid, parathyroid and adrenal surgery and in 2012 performed over 350 procedures including 160 parathyroidectomies and 40 laparoscopic or retroperitoneoscopic adrenalectomies. His specialist interest is thyroid cancer, re-operative parathyroid surgery and minimally invasive endocrine surgery. He teaches on national and international courses and has published extensively on all aspects of endocrine disease and surgery. 

The British Thyroid Foundation (BTF) is a national patient support charity dedicated to supporting people with thyroid disorders and helping their families and people around them to understand the condition. It has been established for 21 years and works with medical professionals from the British Thyroid Association and the British Association of Endocrine and Thyroid Surgeons. Website www.btf-thyroid.org

The BTF London group was launched in 2011 and meets around five times a year. We usually get around 40 attendees and feedback on all events so far has been mostly very enthusiastic.

The Royal Free Hospital is six minutes walk from Belsize Park underground station, 14 minutes from Hampstead underground station, and just four minutes walk from Hampstead Heath railway station. The meeting will be held in The Atrium which will be clearly signposted from the main entrance. Parking space is extremely limited in the local area so attendees are encouraged to use public transport.

You are warmly invited to attend this event, just be sure to email me to book your place in advance. 

The next event after this one is 2nd November, on nutritional medicine and thyroid disorders, with speakers from the University of Surrey MSc in Nutritional Medicine. 

A somewhat smaller Big Summer Walk

After meeting Jill Liddington the other day, at the end of her epic trek from Yorkshire to London in aid of the British Thyroid Foundation, I almost hesitate to mention the rather littler Big Summer Walk I am organising and taking part in this weekend, from Broadstairs to Ramsgate.  But mention it I must, how else would you know about it, or be able to get involved?

view of Viking Bay at Broadstairs, our start point

Members of the London Group did this walk with me last year and we raised over £900 which astonished all of us and we were so grateful for that wonderful support. It's amazing how generous people can be when they see you doing something that matters to you.

This year we are doing the same walk on 10th August, setting off around 1pm from Viking Bay, we want to make this a regular annual thing.

If you're in the area and you'd like to join us, please feel free to get in touch, it should be another lovely day out and this year coincides with Broadstairs Folk week - an amazing festival with Morris Dancers, Hooden Horses and all sorts cavorting around the town!

I'll post a write up and some pictures afterwards.

In the meantime here's a link to our fundraising page, just incase you feel inspired to make a small donation or leave a cheering message. http://www.justgiving.com/BTFLondonTeamWalk.

All donations will be received with massive gratitude and every penny raised will go straight to BTF to support their work for thyroid patients.

Ramsgate Royal Marina, our end point

The Big Summer Walk campaign is something anyone can get involved with, why not organise your own walk, it's a wonderful way to spend time with friends, get some exercise and raise money for this little charity that does so much and needs all our help to be able to do even more for thyroid patients. See the BTF website for more info.