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."

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!