The Thyroid Trust

Hmmm tis time for another from me. Apologies for somewhat neglecting this little blog recently but I have been busy busy as will become apparent.   I thought it was important to update you my dear blog readers so here goes:

Our group of thyroid patients in London has been offered funding to set up a new charity for thyroid patients. We are delighted and very grateful to our benefactor for the support since our meetings  are so important to us and we can see additional opportunities to do things for people affected by thyroid disorders which we are keen to be able to pursue.

Setting up a new charity is quite a lot of work however. We probably under estimated just how much when we started. But we're getting there!  The last few months have been intense.

We now have a name - The Thyroid Trust - a logo which we all really like - and a new website

Thyroidtrust.org 

And we are on Facebook and Twitter @thyroidtrust

We have been putting together our constitution, board of trustees, policies and registries etc. Mountains of paperwork but very exciting. Good governance is vital. 

We have registered to be stakeholders in the development of new NICE guidelines for managing thyroid disease and have been participating in that process.  Attending the initial scoping meeting and responding to the draft scope document, so far.

I also sent a personal response, about liothyronine, to the NHS consultation on items which should not be routinely prescribed in primary care and I know several of our other members did too, though we didn't manage to compile an organisational response as we  had too many other things going on and it didn't feel necessary as we are at such an early stage in our development. I was thrilled to see how many others connected with this process and particularly delighted with the Patients Association response which you can read here.

Our number one priority is keeping the London meetings going and getting good speakers, since so many people rely on being able to come to these sessions and we feel they are so important.

Our next meeting is this Saturday, details all on the website. If you're in the area, please feel free to come along. If you can't attend perhaps you'd like to spread the word. That would be amazing.

Yesterday the news broke about Concordia and liothyronine and was on all the main media outlets. Read here on the BBC. I am so grateful to all who campaigned determinedly to get this story in to the public domain.  I wasn't able to do much at all except send my own response in to the NHS consultation and speak to a few people about it. But here's the proof that patients have a voice and will not be ignored.  Over 24,000 people signed a petition on this issue and that is incredible. a testament to how the internet empowers us by providing information, connections and a platform to shout loudly about things that matter. I feel optimistic about the future.

Please keep in touch via Thyroid Trust, I'm not sure when I'll next blog on here but I will keep this blog going with posts from time to time of course.

Hope and love to all.

Future meetings

You can find out about our upcoming meetings on the group's website here.

All welcome.

ch ch ch change change

Ah dear friends, today there is some news to impart.

We have a new website for our thyroid patients' peer support group in London - please share far and wide with anyone you know who may wish to come to one of our upcoming meetings - or indeed may like to join us on a lovely seaside walk we are planning in East Kent in the summer. Full details are on the site. The next meeting is 13th May 2017.

Here's the link:

thyroidfriends.weebly.com/

With thanks to the lovely folk at I Heart Guts for allowing me to share the above illustration of one of their cuddly plush thyroid toys - you can buy one of these cute little thyroids directly from their website - they make a great gift for anyone with thyroid issues. 

Our group was established in 2010 and we know it is a lifeline for our members, certainly it is for me. We are excited about our next meeting which will take place on May 13 at Crown Court Church in Covent Garden. We really value the chance to come together and support each other and hear each other's stories. 13 May will also be a chance to plan ahead as we will be discussing how we work together as a Team, what topics to cover in future meetings and what speakers we would like to book for our sessions from July onwards.

There is also another thyroid related event taking place in London on the same day. The British Thyroid Foundation are holding a Children's Conference at the Abbey Centre in Westminster. Anyone who has a child with a thyroid condition may find this event extremely helpful. Find out more on the BTF site - I believe it is free but places must be booked in advance with a refundable deposit payable.  While I'm mentioning that - my friend's daughter, Danielle, was born with congenital hypothyroidism and shared her story on my blog some time back, you may like to read it here, it's very reassuring for anyone concerned about childhood thyroid issues, she is now a healthy young mother herself.

Our group is currently independent, since BTF have brought out some new guidelines for group coordinators which we haven't wanted to sign up to - they required one of us to agree to have our phone number published on their website and in their newsletter and since regular blog readers may recall this was something I agreed to doing some time back and ended up quite overwhelmed with callers from all over London and indeed further afield, none of us was up for doing that.  We are hoping that the charity may reconsider their position in time but for now we will just continue meeting regularly, doing our best to support each other and sharing reliable information (which we will continue to source from BTF) under the new group name, Thyroid Friends.

We are super grateful to all the lovely folks who have encouraged and supported us thus far, including: Thyroid MK,  Voluntary Action Camden, I Heart Guts and World Health Innovation Summit.

Thank you for sharing this news with any friends, family or professionals who may be interested. We look forward to welcoming regular members and newcomers to the May meeting.

And now I'm going to skip off to my jazz singing group followed by a blissful grounding meditation in a wonderful community garden just up the road from me before I do some work this afternoon. Counting all my blessings! Sayonara for now.

With HOPE and LOVE.

Just another Saturday in London town

On Saturday I'll be up in London again.

Bright lights, big city

It will be the first time for ages that I've been to a BTF London Group event.

Looking forward to seeing all who can make it. The group needs more help to keep running and when I heard that, I couldn't help but offer to do what I can to keep it going.

So it will be an early start and a Saturday away from my lovely husband and our beach life and a great chance to see some lovely thyroid friends I haven't seen for an age - and no doubt also to meet some new people.  Already, chatting to some group members and friends in advance of the meeting, I'm being reminded that it is so good to talk to other thyroid patients, to compare notes and just be there for each other.

Do come along if you would like to and can get there. All welcome.

This Saturday, 26th November. 10am - 1pm.

At Crown Court Church, Russell Street, Covent Garden, London WC2B 5EZ 

Click here for directions. 

This will be a support group meeting and a chance to discuss the future of the group.

If anyone else is interested in helping run this group please come along and join in the discussion.

As ever I feel it is vital that there should be a support group for thyroid patients in our capital city. People have travelled from all over to attend past meetings and for many members I know this group is a lifeline - because they have told us so. But it's a lot of work to make it happen and I for one am well past the point where I can take that on for no remuneration. My working capacity is reduced by my condition anyway and I have other voluntary commitments as well as paying clients that all require my attention and I have to be mindful of a sensible balance between paid and unpaid work. So we have to come up with a solution, ideally a way of working together as a Team, that will ensure the sustainability of these support meetings.

If you're coming I look forward to seeing you. If not - wish us luck please!  We need it.

*waving ever hopefully*

Light, air, space, time, breath

I haven't blogged on here for ages. I've been mostly quite well, that's why! So there is light at the end of the tunnel for anyone feeling rotten with hypothyroidism. I've got various projects on the go these days so very little time for thyroid stuff but I still intend to post on here from time to time and in particular I want to get closer to the hypothyroid care strategy project which BTF are undertaking and where I see lots of opportunities to make things better for thyroid patients. I feel I've learned a lot on my journey and believe those lessons can be put to some use to help others - as and when I have time around the edges of the rest of my life.

There was a point when my work with the London Group and handling telephone support calls for BTF was taking up a huge amount of my life. My husband was alternately proud of what I was doing and horrified that I was doing so much and not getting paid for it! As I slowly got back to a degree of reasonable  health it was a bit like having the structure of a job and I really appreciated having the responsibility for something that felt important and where I felt I could be of some use. But it got to the stage where it was taking up more hours than I could justify so I had to take a big step back.

I am so delighted and thankful that the group is ongoing and so thankful to the Team for continuing with it. And much as I very much enjoyed talking to other thyroid patients on the phone, as a support contact for the charity, I'm very relieved not to be constantly having those kinds of conversations any more as they are emotionally quite draining, especially when I was effectively on call all the time and listed as the main contact for the whole of London, the most densely populated part of the country!

I'm very happy to be able to flag up to you that the group have now announced a whole series of dates for meetings in London this year, which is brilliant. You can get details on the link at the top right of the side navigation, or here. Precious space and time for thyroid patients to come together, support each other, learn about our conditions and what we can do to help ourselves-and just have a nice time with good people who have some insight into what we're all going through.

I can't make the Feb meeting but will be at the one in March. I hope to see some of you there.

Signing off for now with gratitude to you for reading and being with me on my thyroid journey. It has meant the world to be able to connect with so many other people going through similar experiences and I intend to stay connected and continue to share both my own experiences and anything else I think might be of use to others with hypothyroidism. Because it's a tough old game and we all need all the support and reliable info we can get - right!

One thing I will do this year is write up the notes from the various talks we've had that I haven't had a chance to report back on fully yet.  If there's one in particular you'd like me to do first let  me know.

Sending smiles to you and yours.

And a nice beach photo taken this chilly February morning here in Broadstairs. I won't say anything about how cold it was but doesn't it look pretty!

Viking  Bay, just 1 hour 22 mins from St Pancras on HS1 

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.

The long awaited Nutritional Science event - press release

MEDIA RELEASE Weds 23 October 2013 for immediate release

Nutritional Science and Thyroid Function event for thyroid patients at the Royal Free Hospital, London, Saturday 2nd November

London thyroid patients to learn about nutritional science and thyroid function 

dried apricots and sunflower seeds - a healthy snack?

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, 2nd November 2013.

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

Leading Nutritional Scientists, Professor Margaret Rayman, and Dr Sarah Bath, from the University of Surrey MSc in Nutritional Science will be giving talks on nutritional science and thyroid function. This is expected to be a very popular subject with so many patients with chronic health conditions, as well as the public in general nowadays, extremely interested in knowing how nutrition might help them achieve better heath – yet often bewildered by the conflicting and confusing advice given from different sources.

Professor Rayman and Dr Bath are at the leading edge of nutritional science in this country and will be talking about the latest research findings as they relate to some specific nutrients and how they can affect thyroid function.

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 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, 2nd November, 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://btflondongroup.eventbrite.co.uk

Notes for editors

Professor Margaret Rayman has a doctorate in Inorganic Biochemistry from Somerville College, Oxford and has held post-doctoral fellowships at the Institute of Cancer Research and Imperial College. She is now Professor of Nutritional Medicine at the University of Surrey where she directs the highly respected MSc Programme in Nutritional Medicine. For the last nine years her work has focused on the important of trace elements to health, her research includes investigating the relationship between selenium, iodine and thyroid function and she has published widely, including in The Lancet. She is a registered public health nutritionist, an active member of the Nutrition Society and has been a Member of Council of the Nutrition Society since 2007.

Dr Sarah Bath is a post doctoral research fellow at the University of Surrey, Nutritional Medicine Programme. Amongst other affiliations she is a registered dietician with the Health and Care Professions Council and a full member of the Nutrition Society.

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

Thyroid Disease has been in the national press recently, see Ian Probert’s story in the Guardian (it was also featured in the Daily Mail):

http://www.theguardian.com/lifeandstyle/2013/sep/08/underactive-thyroid-was-slowly-killing-me

The BTF London group was launched in 2011 and meets around five times a year.

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 pu

Book your place: http://btflondongroup.eventbrite.co.uk

two steps forward, one step back...

I'm starting to feel like I'm doing a little dance. Two steps forward, one step back, you know the one.

I put on my (ancient) dancing shoes and.....

I saw my new doctor on Friday. He seems very nice. What a relief.

He thinks I might be anemic again.  Blood test done, awaiting results of that, full blood panel and thyroid function test, which is due again around now.  I'm  hoping that somewhere in these test results will be some clue as to what to do next... Less thyroxine? More? Iron tablets? Something else?

Because I'm tired, so tired, again. And it feels like I've felt like this a lot of this year which is passing me by in a bit of a blur. It's now October 2013. I was diagnosed August 2009.

My old doctor said that quite often people with hypothyroidism do not find their symptoms go away after diagnosis. She apologised that I had been told I could expect to feel well once treatment is optimised, she said the sad truth is that may not happen.

Well she's in the blummin bin as far as I'm concerned.  I won't be seeing her again, not because she said that but for all the other reasons already shared in previous posts. But I can't help but wonder if perhaps she was speaking the truth there. Is there perhaps not going to be a return to "full health". Do I just have to accept that my energy levels and cognitive function will be for ever a bit under par now?  Or was her saying that, just one more sign that she is in fact an uncaring and unsympathetic GP who does not take enough care of patients with chronic health challenges and I am better off not having her as my doctor anymore, because she is clearly not going to be much use to me with an attitude like that?

I have no idea.

I got an email from one of my fellow BTF London Group volunteers today. She said "the more I know the more I realise I don't know". Her and me both.

The Scottish Thyroid Petition ladies seem to be making some progress getting the Scottish Parliament to take some notice of the plight of those thyroid patients who are not easily returned to good health.  I'm impressed with their energy and tenacity, still have not got my head round all the science they are putting forward. I find it complicated. Still I feel their efforts are helping raise awareness amongst policy makers and health professionals and I think that's a good thing.

BTF also appear to be making progress with their hypothyroid care strategy project and I must speak to the lady leading that soon, to see  how/if I can help. Their approach sounds thorough and promising.

Our next London Group event is in a couple of weeks. There's a load of stuff to do to prepare for it. We haven't yet planned any events for 2014. I'm wondering if I really want to continue after the November meeting. I value the group but there's so much involved in making it happen. I wonder if I should be shifting my focus.

I was invited to speak on a panel at an event for Doctors developing their use of information technology. I had to decline. It was the Saturday after the above event. I will likely be tired. I need to take care of me. A shame though. I'd have liked to have participated. But I can't do everything.  I have to accept that.

I've had two long calls with people this week with tricky thyroid related health challenges and while I was able to help a bit by chatting to them and sharing my experiences I felt a bit overwhelmed with the responsibility and in both cases they sounded like  they really needed specialist help from an endocrinologist which they are struggling to get on the NHS. I feel a bit like Canute in the face of the ocean. So many people who need help and support and seemingly so little structure in our healthcare system to provide it things do not go as they perhaps should at GP level.

Hey ho.

I did manage to go dancing this week, that was fun. I was invited to a lovely charity do for Children in Need, because I'm managing a fundraising partnership that will hopefully raise a lot of money for them and some other good causes next year. It was inspiring to hear about some of the work they are doing, there were lots of great acts, a lovely dinner and thanks to a coffee and two chocolate truffles at the end of the meal I had energy to dance to Billy Ocean who sounded as fresh and upbeat as ever at the end of the night! A thoroughly uplifting evening.

So I guess I'm pondering my options at the moment.  Wondering what my next steps will be on this fascinating journey I'm on.  Lots to think about, meanwhile I keep dancing.

Billy Ocean, Pudsey Bear, Children in Need, Evening with the Stars, 2013

A few days later... decision made

A few days on from my last post, the dust (in my mind) has settled and I have reached a decision.

I'm changing doctors.

I've taken extensive advice from various local sources and I've chosen a practice with an excellent reputation which I hope will be better than the one I'm leaving. I've filled out all my forms and I dropped them off at my new surgery today. They've said they'll take me. Actually it was easy.

it's a new dawn.....

Why did I put up with all the problems with my old doctor? Why did I spend all that time writing letters back and forth trying to sort things out? Why on earth did I not do this months ago, or even last year? Heaven knows I've thought about it enough.

To be clear, my doctors's treatment of my hypothyroidism has been by the book and perfectly acceptable.  I don't have any complaints regarding her level of knowledge or competency. She also promptly referred me to an endocrinologist when asked, as she ought to have done according to the treatment guidelines from the British Thyroid Association for hypothyroidism.  So that's all fine.

My issue with her has been that I've often found her difficult to talk to (she interrupts, pulls faces and gets agitated) and also that she bizarrely sent me for an HIV Test when I didn't need one and she didn't bother to tell me she was doing it, which upset me. The whole HIV Test thing has brought things to a head. This is what I've been holding back sharing.

A June 2013 hospital blood test  showed that I had become anemic (due to my heavy periods) and it also showed a low white blood cell count. Due to a mix up with communications at my GPs surgery, my GP got the impression I was very worried about this white blood cell result.  In fact I wasn't at all - because no-one had indicated to me that there was any need to be worried, so why would I be?  But I called the surgery several times because I was expecting some advice, or an iron prescription, regarding the anemia, our messages to each other got lost in translation as the surgery message handling system is not very robust, so she decided I was worried. 

She therefore decided it was appropriate to send me for an HIV test - but she didn't tell me. I wouldn't even have known I was having the test if I hadn't asked the nurse what tests she was doing when she was about to draw my blood.  When she answered my question "full blood count [fine] and HIV Combo" [whaaaat? not fine!!!], I nearly fell off my chair. I had never considered HIV infection could be a possibility  it seemed that my doctor did think it could be, this was a total bombshell. Subsequent discussions revealed the test was not in any way appropriate or needed and I declined to have it.  There's nothing in my symptoms or lifestyle to indicate HIV could be an issue.  When I spoke to the doctor she said that the white blood cell count will probably right itself but that if it didn't it could be worth doing an HIV test as "that is the only viral cause of an ongoing low white blood cell count" (which indicates to me there may be other non viral causes but we didn't talk about this in more detail, who knows!) Funnily enough follow up tests of the white blood cells have been fine. She was just so bloody insensitive about the whole thing. Like I wouldn't want to have something like that explained to  me before just being given a test like that. 

I asked the Terence Higgins Trust if they thought it was reasonable for me to be referred for an HIV Test with no prior discussion. they said it was not reasonable, in fact my doctor, in their opinion,  had acted in a way which was unethical, insensitive and cavalier. I spoke to someone at NHS England for further advice, they said they agreed with THT.   Both organisations commented that it sounded like a waste of NHS resources as well, to run such an uncalled for test. 

So I complained. About the test, the communications mix ups and about the fact that she is often very difficult to talk to, making consultations more stressful than they ought to be. I'm glad I raised the issues. However it was stressful to do and I have not got the outcome I wanted - an improved relationship with her and an apology for the HIV test referral. 

I have at least achieved clarity,  I know now that I want another doctor. I tried everything to resolve things  and it became clear that my doctor is not going to change her behaviour or her attitude and that the way she behaves and her attitude are not what I want. 

I'm fairly appalled by how convoluted the NHS complaints procedure appears to be.  

First of all when I spoke to my doctor about my concerns she got in a total flap and insisted I put them in writing. When I did so I was promptly told the relationship had broken down (which I ddn't agree with) and told that the only way to have a discussion about it was through a formal mediation process which I reluctantly agreed to as I wanted to have the conversation. It then took ten weeks for that mediation meeting to happen and when it did happen it was just really stressful. The local complaints manager at NHS England basically told me that because my complaint had progressed to mediation with the surgery the only way to escalate it was to go all the way to the Parliamentary and Health Service Ombudsman. The mediation man told me that would likely be a tortuous experience which is unlikely to yield anything very useful and that I might want to put my own wellbeing first rather than going down that route. Indeed I do. I've been exhausted since the mediation meeting. It was stressful. Stress is not good for me. In the scheme of things this is a small matter and not something I want to waste a lot of energy pursuing. Frankly I just want my complaint noted and to move on.  But there's no point it only being noted at my GPs surgery because they've made it clear they just don't agree with me. Who is my GP accountable to?

Since the big restructure of the NHS earlier this year it's hard to work that out. PCTs don't exist anymore. PALs (Patient Advice and Liaison) Teams don't exist anymore. the Clinical Commissioning Groups who I thought were running the whole thing now are not involved in primary care, which instead comes under NHS England (a separate organisation). But... after  many enquiries, It turns out that there is a team of people within the Medical Directorate of each region at NHS England who are responsible for GP performance management. And I have now got the details to write to them. In fact I have the name and address of the Medical Director himself. It seems that, under this convoluted new structure, this team never get to see a lot of information relating to patient complaints but I'm told they'll be interested to see this and it might get as far as being included in my GPs next performance appraisal.  That's all I want. Someone who has some authority over her, telling her what I'm telling her, so that she has to take it seriously.  When the NICE Guidelines say that a patient has a right to give informed consent or decline an HIV test, that means you can't just organise that test and say nothing to them about it. 

I've also discovered that there is a facility on NHS Choices website where patients can post and read reviews of GP surgeries. Check it out (click the link above), if your doctor is good why not leave them a nice review, you never know when someone else might be seeking some reassurance about a surgery before registering with them. You could help. Likewise, it's worth sharing negative experiences to help people make their minds up about whether or not to give a particular surgery a go.  I've just posted a review on there about the doctor I'm leaving. It's interesting to read both reviews from patients and responses from practice managers. I think if I'd seen this before I registered with that doctor I would have gone elsewhere.  So hurrah for increased transparency.

I've also done a write up of the issues I've had for Patient Opinion.  This website aims to share feedback with the people responsible in the relevant bits of the NHS. 

I realise I'm in danger of looking a little bit obsessed and like I have too much time on my hands.  Ah well. I do probably have too much time on my hands at the moment and good patient care is something I am very passionate about. Having reached what has been a massive decision to move doctors I am determined that by hook or by crook my feedback will be heard and I hope that it can do some good. Perhaps at some stage my doctor will actually reflect on her behaviour and consider how she could do things differently. At the very least perhaps someone else will avoid going through what I went through because they will read my story and avoid that surgery.. 

According to the GMC guidance on good medical practice doctors must be polite and considerate and treat patients with dignity, allowing them to be partners in their care, they must listen to patients and take account of their views, they must be considerate sensitive and responsive. As I don't accept that referring me for this test without so much as a by your leave - and telling me that the relationship has broken down as soon as I protest -  is in line with these requirements, I'm just really cross. 

So that's that. The new surgery seem great. Let's see how I get on. It's so important to have a good relationship with a doctor when dealing with chronic health issues. Wish me luck. 

"Thursday, Thursday, Thursday...."

I had a meeting with my GP this morning, also the practice manager and a professional mediator. I found it quite harrowing but I'm hoping good things will come of it. Get me, ever the optimist....

I'm not dead yet!*

The background is that we had a mix up a couple of months back, I won't bore you with the details now, I may follow up with them in a later post. As well as the mix up I was getting fed up that I often find it really difficult to talk to my GP. She often interrupts me and doesn't let me finish what I'm saying and she often appears impatient. It's frustrating.

As a patient with a chronic health condition I need to be able to talk to my doctor. I need to feel she is listening and I need to have confidence I am receiving a good standard of care. When I don't feel listened to I become concerned that any treatment recommendations being made may be ill considered and that important factors may be being overlooked. I am mindful that as an autoimmune hypothyroid patient I will typically have multiple symptoms which may be linked to my thyroxine dose, or something else needing to be addressed - and I am liable to pick up other conditions too. Symptoms can be caused by the thyroid condition and also by other things which may be wrong.

I am fiercely determined to be as well as I can be and to advocate for myself to receive the best possible healthcare. I also feel passionately that many other patients with chronic health conditions also deserve the best of care and may not be in a position to advocate for themselves as strongly as I, with my years of experience as a professional communicator, can. So I am committed to holding medical professionals to account to provide a good standard of care for everyone.  Oh and of course, when I am not as well as I am now, my own communication abilities are debilitated and I simply can't be doing with every conversation I have with my doctor being a struggle.

Today's meeting came about following a series of letters exchanged between myself and the practice. Each letter I sent was hard work for me to write and was only done because I felt I had no option. I had kind of reached the end of  my tether with them. To their credit the practice have been totally on the ball and responsive with each communication. I have faith in their good intentions. I recognise they work with systemic difficulties which are not their fault.  I have faith that my doctor is a good, knowledgeable and committed doctor. But she unfortunately is working under extreme pressure so is constantly having to prioritise and work as swiftly as she can and that means the service she can provide may always be somewhat compromised.  In addition, I think that after today the penny has dropped for me that her sometimes unfortunate communication style is nothing to do with me but comes of being someone who is intellectually super bright but doesn't have strong interpersonal skills.  I had been worried that her behaviour towards me meant she thought I was a waste of space. I'm reassured after today that I don't think that's the case.

While I would love to have a doctor who is warm and empathetic I feel it is more important that I have one who is efficient and on the ball. Ideally I would naturally like to have both but at the moment, with the NHS in the mess it's in, I fear that might not be possible. I just don't know. Are my expectations too low? Certainly changing doctors, while an option, is no guarantee that I will end up with anything better than I've got now. *sad face*. Actually I'm being unfair, she is genuinely empathetic, she just isn't always great at expressing that empathy.

We had a big chat. I reached the conclusion that she will probably always be quite hard work but that she knows her stuff, medically and that she does have my best interests at heart.  We agreed to work at the relationship and hopefully over time it will improve. As this is what both sides want I am hopeful we can make it work.

The mediator and practice manager were both helpful and also seemed committed to achieving the best possible outcome.  I made it clear I will change doctors if I decide I need to and she said she hoped I wouldn't, as she'd see it as a professional failure and she cares about providing a good standard of care.

The whole thing was bloody hard work. A bit like life I hear you cry! Well yes, maybe. Maybe that's just how things are. It could certainly have been worse.

The "Thursday Thursday Thursday...." thing is the sticking point. I said - "I need to know you hear what I'm saying, it doesn't work for me when you interrupt me", she said "I need to filter all the different things that patients say to me, identify what's important and respond to that, if you were to sit in front of me and just say Thursday, Thursday, Thursday I wouldn't respond to that because I would know that it wasn't important". Hmmm, if I'm saying something important and she's hearing it as "Thursday, Thursday Thursday", that's no good is it? That's no good at all. And I don't go to the surgery to say things that don't matter, my time is worth more than that.

Do I trust her judgement on what is "Thursday" and what is important? That, for me, is perhaps the crux of the matter. I recognise that she knows a lot more than me about mecicine and she acknowledged that I will know more about my condition than anyone else.  She said that she values my input in decision making, which is a good thing. Hmmm. The theory is that after clearing the air today we have built some mutual understanding and she will listen to me more in future, mind you she didn't actually say she would. The "Thursday" comment was possibly quite telling.

After the meeting I felt quite frazzled. My lovely husband gave me a big hug and a bar of chocolate and my Twitter friends rallied round, one tweeted me a beautiful oil  painting of a tranquil sea he'd just finished, another took me out for coffee and a flapjack - and brought me home made honey and freshly laid eggs too! People are amazing. I feel supported. I'm grateful for that.

I have some more thinking to do and will post again about next steps, when I've had more chance to reflect on what they're going to be....

How about you, ever complained? Ever switched doctor? Ever wanted to? Ever used the NHS Mediation Service, or posted your experience on Patient Opinion, or pursued any other avenues to make things better between you and your doc? I'd love to know. You can comment below if you'd like to, I'd love it if you did.


*My friend from twitter who kindly took me out for coffee today suggested we meet by the Halloween display in The Range, Westwood Cross, there's actually quite a nice coffee bar there and she had some business to attend to nearby. I thought the gruesome display was hilarious - and kind of apt for today's post - at least I'm not dead yet and I've got lovely friends and I can still have a laugh! 

RIP blue man

I just saw this terribly sad story and was reminded of an alternative doc I saw in the nineties who wanted me to take colloidal silver. I'm so glad I didn't.

Click here for Daily Mail article  and the full story.

So sorry for this poor blue man who is now dead.

Paul Karason, RIP.

Home again and reflecting on another Information Event

What an interesting event.

left-right: Emma Thomas, Lorraine Williams, Mr Fausto Palazzo (and in background slide, Alaska Blue, Emma's gorgeous and beloved rescue sled dog, who featured in her talk, as a great source of support and inspiration through her illness)

Thanks to all who came along and to all who helped out and to our speakers and to the Royal Free for hosting us and the great catering team who did our refreshments and to those who have sent lovely feedback afterwards.

One person texted me yesterday to say:

“thank you for working so hard to organise such an enthralling lecture.”  

 I love these meetings. So much work goes into them but it is so worth it.

We learn such a lot and it is so good to meet and chat to other thyroid patients.

Thyroid surgery is not actually particularly relevant for me to know about. As someone with an underactive thyroid, as opposed to thyroid cancer, Graves disease (overactive thyroid disease) or a very enlarged goitre growing down into my chest, I won’t ever need thyroid surgery, unless something highly unexpected happens sometime down the line.

But I still enjoyed learning about it from eminent Consultant Endocrine Surgeon, Fausto Palazzo. And I enjoyed hearing from patient, Emma Thomas, who had her surgery more than 20 years ago, when she was just 21, even though she actually had a bad experience with complications, her story was inspiring as she has learned so much about how to manage the condition surgery left her with, hypoparathyroidism. And many of her lessons were relevant to anyone with a chronic health condition who wants to take responsibility for being as well as they can be.

We had been planning to have a third speaker, Louise Davies was going to give a talk on how yoga can be beneficial for people with thyroid disease, but I was concerned our programme was over full and our speaker was concerned about timings as she had to be somewhere else straight after our meeting, so we agreed to rearrange her for a future date (tbc) and we had a short relaxation session instead. That was lovely too. We’ve done relaxation sessions at previous Patient Voices events but this was the first time we’ve done it at an info event and it really worked beautifully. More of this in future I think. 

We also shared photos of our summer activities – the London 10K, Jill Liddington’s walk from Yorkshire to London and the London Group summer walk from Broadstairs to Ramsgate.  Some of our group had also been to a follow up session with the researchers at Imperial who wanted to canvas the views of thyroid patients on changes to how data is being used in the NHS.I hadn’t realised how busy we’d been till I stopped to pull all the information together.

In a couple of weeks BTF has 30 walkers taking  part in the Carrot Walk in London (as well as more walkers at events in Birmingham and Glasgow) organised by the charity Fight for Sight. And next year there’s going to be a special meeting in Leeds for parents, carers and children with thyroid disease. So we promoted both of those upcoming events too.

We finished with another epic Q&A session.

I’ve a lot to write up. And donations to bank. People as ever were very generous.

   

And I’m quite knackered, it’s a 150 mile round trip for me to get back to London these days and it’s a tiring day as you can imagine. But it’s all good. I’ll post again soon with write ups of the talks and some of the Q&As. 

If you came to the meeting and would like to share any comments on here please do, I seem to be very low on comments on these days though I know lots of you are reading the blog, please don't be shy - all comments are warmly welcomed! 

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.