BTF info for 13th sept 2014 meetiing

This article wasn't originally publishing properly, for some reason all the spacing was lost when it went live. I've now sorted this out so hopefully it will be easier to read:

I was on the panel at the 13th September BTF London Group meeting and am sharing my notes on BTF Activity for those unable to attend the meeting, below. It was a really good meeting. We followed a different format from anything we'd done before and I was quite anxious in advance about how it might go, but it was really a big success, as all the group's previous events have been. Well done to the group for creating this new Question Time format and for putting together a really good panel.

Even with three hours for the meeting we didn't quite manage to get through all the pre-submitted questions but we did most of them and as well as sharing what I know I learned a few new things as well and really enjoyed the day.

The event was filmed so the footage should be available on youtube soon. I'll post a link when I have it.

Meantime, the following may be of interest to anyone wondering what BTF does for thyroid patients. This info was sent to me from BTF HQ ahead of the meeting.  Much more info, of course, is on the charity's website .

 "Contents

1.  General info from BTF
2.  More info on the Hypthyroid Care Strategy Project 
3.  General info from BTF

 1/ In response to concern about lack of knowledge of GPs (and other health professionals) about diagnosis and treatment of thyroid disorders, we are working at improving awareness about all thyroid disorders amongst health professionals at all levels, including GPs. Below is a brief update about what the BTF is doing to raise awareness and improve understanding of thyroid disorders, including informing health professionals about the patient’s perspective:

Children

•  The BTF conference for children with congenital hypothyroidism (CHT) and their parents: we are working with doctors/nurses from the Leeds General Infirmary (who have already changed their practices as a result) and together are producing information on CHT and parent experiences at diagnosis which will be presented at a specialist nurses' session at the British Society of Paediatric Endocrinology and Diabetes (BSPED) meeting in November. See also BTF News 86, p 1. 

Thyroid Eye Disease

•  See executive report www.btf-thyroid.org/images/stories/pdf/TEAMeD_First_Report_Executive_Summary_4_page.pdf which describes the work being done to raise awareness amongst health professionals. 
•  Two-day meeting in Newcastle, May 2014: Thyroid Eye Disease in the 21st century (attended by the public, patients, pupils and international experts on thyroid eye disease), see: http://www.btf-thyroid.org/index.php/campaigns/thyroid-eye-disease/newcastle-thyroid-eye-disease-meeting

Pregnancy/Fertility

•  During International Thyroid Awareness Week (http://thyroidweek.org/en/) we issued a press release about fertility. 
• Working with a GP on a potential article on hypothyroidism and pregnancy

Thyroid Cancer

•  Short film on patient experiences of thyroid cancer – due for release in September 
• Thyroid Cancer booklet to be updated 

Hyperthyroidism

• Short film on patient experiences of hyperthyroidism – due for release in September 
• Invited to provide patient representation on working groups – Apitope (see BTF News 85, p 11) 

Hypothyroidism

• Short film on patient experiences of hypothyroidism – due for release in September.
• Worked with a GP who approached us to update a GP training module that appeared in Pulse on line – the most widely used training module amongst GPs; see: http://pulse-learning.co.uk/clinical-modules/diabetes-and-endocrinology/hypothyroidism-case-base-module 
• Investigating research opportunities 
• Produced a poster and leaflet with a list of hypothyroid symptoms which were displayed in GP surgeries in various parts of the country earlier in the year. This was done on a pro-bono basis by the company involved, and resulted in an increase in calls to BTF HQ and an increase in membership from the parts of the country where the poster/leaflets were displayed, plus requests from GP practices for further information from BTF. There has also been a 250% increase in hits to the BTF website in this period compared with the same period last year. The company has recently informed us that they have continued our campaign and increased the number of surgery sites; the information will be available until at least the end of November. 
• Endorsed the Thyroid Federation International (TFI) statement: http://www.thyroid-fed.org/tfi-wp/news/alternative-substitution-tfi-statement-2014/ 
• The 2015 BTF Research Award will be specifically for a study into hypothyroidism 
• We are in the process of drafting information for GPs and other professionals for the BTF website

General

•  Patients kept informed via our website of changes in supplies in medication 
• BTF Patient literature is being revised, taking into account updated information 
• There is an increase in medical queries; and this raises awareness amongst the medics of matters that concern patients and gaps in diagnosis/treatment 
• We set up a survey via our website to find out how patients have accessed the BTF and what services they would like from the BTF; we have 300 responses to date. The survey is on-going.
• BTF News 78, pp 8-10 featured an article on ‘Challenges of Hypothyroidism’ which you may find useful – interviews with endocrinologists conducted by Judith. 

 I hope all the above information helps with the meeting. There are many strands to our hypo project and we are still in the planning stage, which involves discussion with a wide range of people. As far as GP awareness is concerned we want to raise awareness of all thyroid disorders.

Re the Hashimoto’s search issue on the BTF site, I can see there is a problem with the apostrophe (a ‘\’ appears in the search box) and thus the word cannot be found as the word ‘Hashimoto\’s’ does not exist on the website; similarly ‘Hashimotos’ does not exist. But if you type in ‘Hashimoto’ or ‘hashimoto’ you will get results. I have passed on the apostrophe issue to our webmaster. Thanks for letting me know. "

Here is some Further info on key activities related to the hypothyroid care strategy with approximate dates. a number of them are already mentioned above but the below information came from a different person at BTF head office:

"Hypothyroid Care Strategy activities summary

•  2013 May Meeting with commercial firm about free distribution of targeted info in GP surgeries across UK Poster and simple leaflet design initiated 
• July Meeting with mid-career GPs to gauge their interest in and knowledge of hypothyroidism. They wanted a simple summary preferably issued by NICE and a CPD module. 
• Sep-> Investigation of CPD options for GPs – RCGP too expensive, PULSE already had module reviewed by M Vanderpump. 
• Dec Presentation by VR, JH and JT to BTA annual meeting about proposed hypo strategy – they endorsed targeting of GPs via CPD 2014 
• Jan-> Involvement in writing proposal for large scale clinical research project focused on hypo patients with persistent symptoms – awaiting outcome 
• Feb Lead article in BTF News about hypo strategy Piloting of enquiry forms to capture data about hypo patients 
• April Attendance at BSA seminar in Newcastle on qualitative non-clinical health research 
• May Leaflets finally distributed to GP surgeries initially until end Aug Analysis shows clustering of firm’s boards in W Midlands and Wales – subsequent monitoring show rise in enquiries, especially from these regions. Now extended to Nov. Simon Pearce and Scott Wilkes advising on strategy. 
• Jun-> Commissioning of Dr Tran article for PULSE – M Vanderpump updated module currently now available free 
• Aug Feedback to pharmaceutical company about patient experiences with levothyroxine."

The group goes on.... and why TSH is like the Richter Scale

Our meeting on 10th May went really well. When I get the time I will write up of some of the controversies discussed in Mr Lynne's talk and the Q&A session.  He talked for over an hour, was very open and shared a vast amount of information with us, we all learned a lot and it was a very enjoyable event.  He was a lovely man and brought along his equally lovely practice nurse, Patsy, we all really enjoyed meeting them both and are very grateful to them for giving up their Saturdays to support thyroid patients in London.

One of the biggest "wow" moments for me was learning that the TSH scale is logarithmic, like the richter scale, which would seem to explain why, for me, a seemingly tiny shift in TSH value = a massive difference in how I feel.

TSH log scale slide from Mr John Lynne's talk at the Royal Free, May 2014

I have now stood down as London Group Coordinator and would like to thank the remaining Team members who are commited to continuing.

What a relief that London will still have a support group for thyroid patients.

Upcoming events include a teddy bears picnic in Central London on the day of the London 10K run, on 13th July, which several group members, are running and the next Information Event is scheduled for 13th September.  Onwards!

Combating internet misinformation - Press Release - Thyroid Controversial Topics Event

Combating internet misinformation

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, 10th May 2014.

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 many cases, where treatment is not straightforward, it can have a devastating impact on people’s lives.  

Leading Endocrine Surgeon, Mr John Lynn, MS FRCS, will be giving a talk on Thyroid Controversial Topics.

Mr John Lynn, MS FRCS, Endocrine Surgeon

All past meetings of this local group have been extremely well attended and enjoyable 

 attendees at BTF London Group Feb 2014 event

This is expected to be a very popular subject, so many patients with thyroid conditions can become confused by controversy surrounding their illness, particularly if they have turned to the internet in search of answers, as many do in desperation. While they may often appreciate that the information they discover is likely to be of questionable quality still they yearn to get fuller answers about some of the controversies they come across and their doctors seem seldom to have the time or perhaps the specialist knowledge required to satisfy this need.  And not all doctors agree with each other about some aspects of thyroid care. Research in some areas is lacking. The good doctors will often admit they don’t have all the answers.  

Patients who are struggling to be well often struggle to find the best solutions amidst such controversy, even when they have sympathetic clinicians.  BTF provides excellent and comprehensive information, yet many patients remain frustrated and doubtful of what to believe.  

Dr Lynn’s long experience, patient focus and impeccable clinical credentials make him the perfect speaker to tackle this topic. 

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

Thyroid disease will be relevant to many of your«media_list_for_BTF_London_press_releases» 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, 10th May, from 10am to 1pm, in the Sir William Wells Atrium, Royal Free Hospital, Hampstead. 

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

For more information or to book a place  go to: http://btflondon.eventbrite.co.uk  

Notes for editors

Mr John Lynn, MS FRCS Surgeon, a fellow of the Royal College of Surgeons for over 40years,  previously Consultant Surgical Endocrinologist at Hammersmith Hospital and honourary Senior Lectureer in the Department of Survery Imperial College of Science Medicine and Technology is now in private practice at 9 Harley Street and has admitting rights and does ops in Weymouth Hospital, King Edward VII and the Lister Hospital: http://www.endocrinesurgeon.co.uk 

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 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 50 attendees and feedback on all events so far has been very enthusiastic. 

Lorraine Williams writes the increasingly popular Thyroid Hope blog, sharing her own experiences of thyroid disease and running the BTF London Group: www.thyroid-hope.blogspot.com 

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. 

Thyroid Controversial Topics

Just heard the news - Mr John Lynn, leading Endocrine Surgeon, has chosen the theme for his talk to our group this month - and it's a scorcher:

Thyroid Controversial Topics.

I'ts time for Auntie Margaret's disco ball, isn't it.....

click to play 
Auntie Margaret's disco ball 

Well I couldn't be more pleased. Looking forward to welcoming Mr Lynn to our group and to hearing his talk.

I've said it endlessly on here and it makes my blood boil, frankly that there is so much dodgy information out there on t'net, about thyroid disease (yes and about other illnesses and stuff in general too, I know).  So many people who are either misguided or seeking to profit from people who are unwell. Of course, also so many unanswered questions, so many grey areas, so much that is simply not known because sufficient research hasn't been done, or 100% proven and the whole thing is so complicated. The more I learn, the more I realise I don't know, even though I know quite a bit now. 

It will be refreshing to hear a clinician tackle this issue head on and give us the low down, as he sees it, on some of the controversies that do the rounds and that can be so confusing for patients, as well as sometimes dangerous and expensive for us. 

Oh I can't wait! 

Are you coming? You can book your place and learn more about our speaker: here 

Onwards, upwards, sideways....???

So great news, we had a brilliant meeting at the House of Lords last month and the British Thyroid Foundation London Group will continue! I am no longer the coordinator.  Phewweww, a relief. The vast majority of the stuff I've been doing has been divvied up and shared and my only residual responsibility is to chair the group and support those fabulous individuals who have taken stuff on. Call me a chair.

this artwork, gifted to me in 2008/9 at a Landmark Education event
is about how we relate to reality.

One day I'll explain the artwork above. For now, it just tickles me to include it.

Our next London thyroid patient information event meeting is 10th May 2014. Our speaker is Mr John Lynn, a very eminent endocrine surgeon.  He sounds great. Details including how to book a place are on this link.

I'm beyond grateful to all those who have stepped up to take on different aspects of keeping the group going. You know who you are. Let me know if I can add a public acknowledgement here - perhaps a link to your blogs and / or twitter pages....?

I think you'll be hearing a lot more from us in months to come.

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

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.