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!