Confusion - you just won't believe me.....

From time to time I like to roll out Auntie Margaret's disco ball so you can have a jolly soundtrack while reading this blog.

Confusion - New Order

I hope you will enjoy New Order's Confusion. It's a tune from my youth, rather stuck in my head at the moment, read on and you will find out why.....

The NHS changed on 1st April 2013. I went to a conference last year where I found out quite a bit about the vision and commitment behind the changes and actually came away feeling cautiously optimistic. I could see the strong desire to become more patient focussed. There were a lot of fine words. The new NHS Constitution really makes a lot of sense.

My concern was that NHS resources are so stretched, the system so Byzantine and the changes being pushed through at such a fast pace that it may prove very difficult to realise the ideals supposedly being pursued. Also, my natural suspicion of politicians' motives made me wonder whether actually the whole restructure project is really in service of a totally different agenda - basically the dismantling of our NHS by creating something so totally unworkable that staff and patients will simply exit the system in ever increasing numbers. Is it really possible that our government could be so cynical they would actively seek to destroy this wonderful institution which we all care about so passionately and which has so much going for it? My optimistic soul hopes fervently this cannot be the case.  But you know, sometimes I can't help but wonder.

So what is going on? Total and utter bloody confusion on one hand. Some very determined, intelligent, committed individuals trying to do something really good on the other.

I went to another meeting yesterday - the board meeting of the governing body of my newly created local clinical commissioning group (CCG). It was open to the public, in the spirit of transparency and welcoming patient voices. It was interesting and yet again I came away feeling cautiously optimistic.

I was quite excited to meet a chap on the board who's a professor of endocrinology and was very encouraging about the British Thyroid Foundation getting more involved in lobbying CCGs around the country to improve standards  and consistency of care for thyroid patients. He even indicated there  may be some funding available to help the charity do this. He said that GPs should have greater access to specialist knowledge to help their hard to treat thyroid patients, under the new structure. And he kindly offered to send me some documentation that will help me understand where things are going, with (I'm  hoping) the potential for the charity to influence things going forward.

(I hear on the grapevine that BTF will soon be launching a three year Hypothyroidism Care Strategy, more on this in future posts....)

He and all the other CCG governing board members who were there appeared to be bright as hell, highly motivated and very much focused on  improving patient care, listening to patients and effective resource management in order to provide the best possible quality of integrated care. Impressive.

Rewind to the real world - a month ago I asked my GP to find out why my endocrinologist had sent me a blood test form which was a duplicate of one I already have which he had previously told me to use before my next appointment with him (due in about 5 months time).  It had arrived via the post with no accompanying note so I don't know if I have it in order for him to monitor me between appointments, perhaps depending on how I feel ( that would make sense)  or if it's just a duplicate been sent in error (perhaps more likely). A month later I chase for a response because I have a sneaking suspicion I should possibly be having the test fairly soon, particularly as I still don't feel quite right (about 6 weeks after my last test), the receptionist confirms that the GP sent a letter to the endo the day I spoke to her but no response has come back. Apparently the letter was sent via COURIER.

The last time I tried to ask a question of my endo I had gone direct to his secretary (naively assuming that was the best way to contact him) and had quite a weird experience as she ended up telling me to reduce my medicine without seeming to take his advice on the matter and I ended up (a few months later) quite unwell because the dose reduction was too much. It was a bit of a complicated scenario. I was feeling over medicated so thought a reduction was the right thing to do and after trying and trying to get the docs view on it I finally gave in and just did as I was told by his secretary, she basically capitulating to what I was saying I thought I probably needed to do. Subsequently (many months later when I saw him and by which time I was proper hypo again) the endo said he would have advised a more subtle adjustment.  Not good really is it? He also told me if I had any questions in the future I must go via my GP as she would be able to get an answer by going through the correct channels.

Anyway - the learned professor, at the forefront of the brave new NHS, with all it's efficiencies and openness and patient-centric approach,  had told me that GPs can now access information from specialists via the Choose and Book system. Apparently it's not just for booking appointments, it's also a communications channel that should enhance the quality of the care we patients get. The key to quality care for thyroid patients, according to the Prof (and I agree) is GPs listening to symptoms, not just looking at blood test results - and conveying quality information about those symptoms to specialists, who can advise them on what tests to order/treatment to try, if they are unsure themselves what to do. The key to success is quality information.

My GP's surgery have never heard of Choose and Book being used in this way. Perhaps it's a new thing coming in and has not actually started yet. Anyway. The fact is that last September because I was unable to access specialist advice I started taking a lower dose of meds than I should and by March this year I was very unwell again. And I am still not as well as I was before so I still want some specialist support for what to do, or not to do about it and my GP has been unable to get a simple to answer to a simple question of whether or not I am supposed to get my blood tested for over a month.  The chances of there being any transfer whatsoever of quality information relating to the actual symptoms I am experiencing being relayed to my endocrinologist seem remote. the last time I saw my GP she appeared so dismissive and almost hostile seeming, with no interest whatsoever in hearing about any of my symptoms I am almost at a loss to know how I should approach her to try and get her on side and helping me work out what I should be doing now.

And I'm so mystified about why she seems this way because I honestly think she's mostly a good doctor and very conscientious - she sent the query to the endo the same day I saw her. I know she works long hours and takes a lot of time with many of  her patients, she obviously cares about her job and often gets rave reviews.  I don't know if there's something about the way I present in surgery that gets her back up. I try not to be a nuisance but at the same time I am probably a bit more challenging as a patient than perhaps she's used to. I ask questions, I have opinions, sometimes I get tearful, usually when my thyroid hormones are out of kilter.  I don't know. I appreciate that the long hours she works just might mean she sometimes feels under pressure and her communication style suffers as a result. I try to be understanding of that.  I stick to the facts and do my best not to get emotional. But it's hard, being ill. I wish the system was a little bit more supportive of that than it sometimes seems to be.

So today I'm confused. thank heavens for early '80s classic pop, always a comfort in times of uncertainty. :)

How are things with you, what do you think of the NHS changes? What's your experience been recently of navigating the system? What do you think of the latest offering from Auntie Margaret's disco ball?

In solidarity.

Thyroid Hope.

Never Give Up - Thyroid patients London meeting, Feb 9th 2013

So I woke up late, precisely 20 minutes after I was supposed to be on my train on the way to London for our event. And there’s only one train an hour. Yikes.  Fortunately I’d been aiming to be there very early, so I still got there before kick-off, just.

the pretty Kent countryside, seen from my train, 9th Feb 2013

My wonderful fellow volunteers had everything under control when I arrived. I am so lucky to have found such an amazing bunch of people to help run the BTF London Team. I always get a bit worried beforehand because I’m never sure how many other volunteers I’ll have but so far it has always worked out perfectly, we don’t always have the same people on the Team, as some have to reduce their involvement due to health or other commitments from time to time, which is totally fair enough, but other people always seem to come forward and lend a hand. I love the Team. They are all amazing.  I do worry though that the group is such a fragile thing, held together purely by our collective good will.

We had 76 attendees confirmed so there was quite a bit to do, setting out the literature,  putting up signs, registering everyone who arrived, manning the information table, testing the A/V set up, etc. Fortunately the Royal Free catering team were taking care of our refreshments. Doing drinks for so many people at these events would just be too much for us to handle ourselves so we bite the bullet each time and pay for catering on arrival and in the break, counting on donations to cover the cost. 

 

Professor Colin Dayan arrived just after me, as did our other patient speaker. Phewwew. We started more or less on time and the next 3 hours flew by, seeming all to go very well.

I did a talk about my own experiences of psychological symptoms and managing my psychological wellbeing with thyroid disease then our other patient speaker did the same. Our stories were very different but both had similar themes of having been very unwell, struggling with it, feeling out of control and very unnerved/frightened by the whole experience, ultimately finding that a combination of mainstream treatment (which we had both spent a lot of time being suspicious of) and mindful self management have led us back to being able to function and feel pretty well, though in both our cases it has taken quite a while.

Then Colin Dayan gave his talk which was excellent and well received, though it had a lot of graphs and data in it which were sometimes a little challenging to follow. Colin took an unexpected but very interesting approach to the subject. He basically asked us to put ourselves in his shoes and pretend we were doctors, for the duration of his presentation. Then when we had the Q&A session, he said, we could go back to being patients and he hoped a fruitful dialogue could be had, to help work out some of the conundrums around thyroid disease and psychological wellbeing.

He then set about presenting the facts as far as they are known according to current research, including that of his own team in Cardiff. He shared that research in this area is a global effort, with teams around the world looking at different aspects and sharing information over a period of years, slowly building up knowledge and seeking answers that will help thyroid patients.

It seemed that his team have a particular interest in a subgroup of patients which initially I felt I belonged – hard to treat hypothyroid patients.

As far as I understood the data that was being presented, it seemed that there is, potentially, a significant proportion of hypothyroid patients who are being treated with thyroxine yet are more likely to be depressed than either the general population or hypothyroid patients in general.  Some of the questions researchers are asking are:

• Is this coincidental or somehow linked to thyroxine treatment?
• Could combination treatment (with T3 and T4 meds) be better for these patients?
•  Is there a genetic marker that could help identify these patients and get them on optimum treatment sooner rather than later in the future?

The BTF London group were fascinated to learn about this work and so grateful that the scientific community is taking some of our issues seriously and investing time, money and effort in trying to come up with some answers that will ultimately help thyroid patients.  The applause his talk received was heartfelt.

Colin is seeking funding for more research. I don’t know how much he needs, it’s probably lots. As some of you know, in a previous life (oh, it seems so long ago now), I did some significant fundraising for cancer research. Maybe one of these days helping thyroid researchers get the funds they need to do more work in this area might be something I could do. To be honest though it seems like a daunting and not particularly appealing task. I know from my past experience just how expensive serious medical research can be. And fundraising really doesn't float my boat as much as doing other things does. Still, food for thought.

The other thing is, while I recognise the value and importance of work like this and I applaud those who do it, it seems to be just scratching the surface and I know how long it takes for medical research to deliver changes for patients. There are so many issues, beyond how much and what kind of thyroid hormone to give a patient, that affect our psychological wellbeing.

For myself, I know that treatment with Vitamin D and subsequently changing my diet have been highly significant in my recovery. Everyone is different of course, what worked for me is not necessarily going to be helpful for someone else. But so few patients are steered to consider dietary changes or even tested for Vitamin D deficiency by their healthcare professionals. And so few are offered counselling or CBT, or if they’re offered it the potential benefits may not be explained properly and it can come across as if they’re being told their illness is all in their heads which is the last thing we need to hear when we are doing the best we can to take care of ourselves and stay sane. It seems there remains a vast gap in proper medical knowledge around psychological wellbeing, gut health, vitamin D and other potential autoimmune connections.

Equally, perhaps mainly because of stretched resources and cultural issues, the experience that so many patients seem to have of not being listened to and not having their experiences properly acknowledged, never mind effectively addressed, by their doctors,  was reported by attendees yesterday as being a huge factor affecting their psychological wellbeing while ill.

As another thyroid blogger (@hypo_man) put it to me on twitter the other day: 

“being denied treatment has impacted my psychological wellbeing. Self-doubt this has caused is unforgivable”

I know the new NHS Constitution is supposedly working towards a massive culture change in healthcare delivery in this country which sounds great and I believe needs to happen, but I have many misgivings about whether that whole agenda is actually just a smokescreen for government cuts. And anyway, the issue here is not just about the paternalistic and dismissive attitude that some doctors exhibit towards some patients, thereby making their situations worse not better in some cases - it’s actually about knowledge standards and consistency of care for patients who’s lives are being impacted to a ridiculous extent, in some cases over a very prolonged period of time.

It was interesting that Colin’s research measured only depression. Brain fog, which is entirely distinct and seems to be a major concern for almost every thyroid patient I talk to, didn't appear to have been considered at all.  I had very foggy brains for at least a year, but did not score on any measure of depression, because - amazingly - I was never actually depressed. 

So I feel a little sad after yesterday. Although thrilled the event went so well and feedback was so generally positive. And although I’m incredibly grateful for Colin’s work and to him for giving up his Saturday to come and talk to us and for being such a total super star, sharing so generously and answering so many questions so thoroughly and charmingly. He really was a great guy.

It just seems medical science is a long way from being able to make a very meaningful difference for thyroid patients who struggle and we simply have to continue fumbling in the dark, doing the best that we can, trying different things, thinking positively, keeping an open mind and being patient, for the foreseeable future. At least I can happily report that, for now at least, by doing all those things I seem to have recovered a good degree of physical and mental wellbeing. I can think clearly, I have lost weight, I can exercise, I feel good overall.  I celebrate that.

At least the good doctors will acknowledge that they don’t have all the answers and are prepared to work collaboratively with their patients to try and find the best solution or combination of factors that will make the most difference for each of us.

With thanks and good wishes to those good doctors I’m referring to and very special thanks to Professor Colin Dayan for yesterday.  Let’s never give up. 

A story from the front line of providing volunteer patient phone support

As many of you know I provide volunteer phone support for thyroid patients.

It’s not something I particularly wanted to do but when I offered myself as a volunteer local co-ordinator to the British Thyroid Foundation, which I did because I was ill and needed a support group in my area and there wasn’t one so I was determined to set one up, it turned out that part of the role was to have my number listed and to take calls. It didn’t appear to be negotiable.

Anyway, I get on average one call a day, sometimes more, sometimes none, and I’d much prefer to be able to manage the time I spend on it it, so that I was only “on call” as it were, say once a month for half a day, or once a week for an hour or two, (I do a lot of other stuff for BTF, it’s all time consuming) but the charity don’t have the resources to set up such a system so instead they list phone numbers for all the different volunteers around the country and people needing help take pot luck ringing these numbers and hope they catch someone at home and able to support them. The list says if there are particular times people are most likely to be available and also what conditions they can talk about from personal experience.

I find that I appear to be providing a valuable service - I think literally everyone I’ve spoken to so far (I’m guessing 500+ individuals) seems incredibly grateful and tells me I have been helpful - and the people who ring are generally so lovely and often so distressed that it seems to be an important thing to continue with.  

Earlier today I spoke to a lovely lady on phone, she has been feeling very tired and unwell for several months, describing lots of symptoms that sound like hypothyroidism but could of course be something else. Her doctor has been monitoring her TSH for 6 months and says he expects that she will soon need thyroxine but he will not prescribe it until she has gone above a TSH reading of 6.9. He has not offered to do ANY other tests (not even T4 to see if that is low in the range, never mind B12, Vit D, calcium, iron, etc...). Her latest blood test results say that her TSH has come down rather than gone up, still around the five point something mark. She still feels rotten.  

Her doctor apparently told her nothing can be done, she's getting old, at 47, and just has to live with feeling crap!  

This is sadly not an untypical call for me. What can I advise? Some GPs may be inclined to give a trial of thyroxine with the symptoms and TSH reading described. It’s a judgement call. If they’re not going to do that - and it is not by any means necessarily the best thing to do as prescribing thyroxine when it’s not needed can cause all sorts of problems - my understanding is that they should certainly be looking for other causes of the symptoms.  I told her that.

I had in fact spoken to her previously and sent her a leaflet I have, about how to talk to doctors, as I know that sometimes you have to be smart with your communication skills to get a doctor to listen to you and be on your side and she had expressed difficulty in getting the man to listen to her before.  On this conversation we agreed that it sounded like she had tried to do everything right on the communications front. She had been clear and specific and non aggressive.

The lady reported that her doctor seems concerned about the cost of everything and unwilling to listen. She described feeling that he just wasn’t interested in her symptoms.

She said she was considering going private because her quality of life is so badly affected and she is desperate to get some treatment that will help.  I hear this a lot from people. It breaks my heart.

I said that she is entitled to a good quality of care on the NHS and shouldn't have to go private. I said I felt the doctor wasn’t following best practice if she didn’t feel she was being taken seriously. I told her it sounded totally unreasonable to me for her to be told she is “getting old” and can’t expect to feel well now she has reached the age of 47 (that’s not “old” is it??). I said that it was not reasonable in my opinion that the doctor was not conducting further investigations to get to the root of the problem. I told her that there are moves afoot in the NHS, with the reorganisation and strengthening of the NHS Constitution, to make doctors more accountable for the service they give their patients and that really it would be a good thing to give some feedback to the practice manager or the PCT as if the doctor doesn't get any feedback he may not realise the negative impact he is having, but that I understood she probably didn’t feel up to going down that route. Complaining is a very scary thing to do when you feel unwell. I know. See my earlier post on this subject.

Ultimately I told her that she is entitled to both further investigations and a second opinion and I would advise her to ask to see someone else - either another GP at that practice or through a referral to a specialist - and that if there isn’t a GP at her practice that she feels will listen to her, if I was her I would be seriously considering switching GP.  She was concerned that another GP at the same practice would likely “side with” his colleague. I hear this concern time and time again from people who ring me. I guess it depends on the individual doctors whether that will apply or not, but the fear amongst patients seems very common. 

She thanked me a lot.  She said the information I was able to share was helpful and that it was reassuring to have someone listen to her concerns. She will talk to her husband and decide what to do from there.

I felt so cross on her behalf I came off the phone and sent a tweet about it.....

 @lojinks: “just spoke to a lovely lady on phone, feeling very tired and unwell, doctor tells her she's getting old at 47 and just has to live with it!”

My next post will show how a conversation then developed on twitter, with both health professionals and patients commenting. It was very illuminating and I’m hopeful that as well as connecting with other patients online I may have made some valuable new contacts within our healthcare system, with whom it will be worth engaging further with, with a view to sharing insights and working towards positive changes for patients with chronic illnesses (not just thyroid patients)

Relevant hashtags are:

 #nhbpm (yes I’m still trying to keep up with this WEGO Health campaign, posting more in November than I usually do, though I haven’t managed every day!)

and #NHSChange (a new conversation I discovered today, check it out)

I’ve written enough for one day but have much, much more to say– will follow up soon. Tomorrow if I can manage it. 

Au revoire for now, my lovelies. If this story has struck a chord for you I’d love to hear your thoughts. 

A brave new world, giving feedback to my doctor

Today I did something I've never had the confidence to do before.

Let's start by reminding ourselves who I am. A fairly assertive woman on the whole. Some might say more assertive than most. I'm Scottish for a start and after more than twenty years living in England I've come to realise that culturally the Scots are generally more upfront than the English tend to expect. If I've got something to say I think of myself as someone who will generally say it. Occasionally friends will thump me on the back and say how impressed they were that I spoke out about something other people had been keeping quiet about and that needed to be said. Naturally outspoken, that's me. And I believe passionately in the power of giving and receiving feedback as a fantastic way of bringing about positive change. 

Yet, I have held back on giving a great deal of feedback to my various doctors over the last three years because I have been too afraid. 

I've been afraid that if I gave feedback or complained about things I was not happy about, that my treatment will be compromised, that I will be viewed as a complainer rather than as a vulnerable patient with valid care needs. That the professionals I perhaps should complain about will resent me, that they may even spitefully discharge me and refuse me treatment. I've been afraid that the precious and very limited time I get with my health care professionals could end up becoming an adversarial discussion, focused on their insecurities and need to defend themselves rather than working to find solutions for my debilitating symptoms.

This may seem silly, but I have spoken to so many thyroid patients who sadly have had very bad experiences when they have tried to raise concerns about their care. I have treated all the healthcare professionals I have dealt with with the softest of kid gloves. As I've said before, I find my self using "every inch of my professional communications skills" in each appointment, to try and keep them on side and not allow them to feel threatened by my stubbornly hard to treat condition. Call me a scaredy cat, I don't care, I've been ill, I needed to take care of myself. 

I think on the whole most doctors are good and do their best by patients. I am vehemently against the scaremongering and doctor bashing that goes on on many so called thyroid patient advocacy sites. We need to have good relationships with our healthcare professionals and to respect their expertise. However, I acknowledge that there are too many cases (one case would be too many) where patients who desperately need help are treated, frankly, appallingly, for whatever reason. In some cases it seems that some GPs are not as knowledgeable as they should be about the treatment guidelines for hypothyroidism, in many other cases it seems that doctors are highly stressed and short of time and not giving the attention to the individual patient's care that is needed. Often patients feel fobbed off and frustrated and in some cases years can go by with their activities of daily life severely affected as they languish under ineffective treatment and lack of support. This needs to stop. 

I've had a few unfortunate experiences since my diagnosis. Some I've shared on here (remember the outrageous letter I got from UCH that couldn't go unchallenged as they'd put in writing that I was so tired and forgetful I'd stopped taking my medication entirely, which was nonsense!), many I haven't. Like I said, I don't want to be seen as a complainer and if I complained about everything that has not been right this blog would perhaps have rather a different flavour to it.  I know the effect that reading endless complaints from other people (usually on those other negative sites referred to earlier) has on me, it makes me feel anxious and comes across as counter productive. Negativity is not the way to improve anything. People have a tendency to stop up their ears to criticism, if given it has to be given carefully and selectively, if you want the other person to take it on board. 

So now, ta daaa! I feel much better. And I have my new endocrinologist in part to thank for this (new since the start of this year). He is the one who persuaded me to trial a reduction in my T3 medicine and then to stop it entirely. He did this very gently, taking into consideration my fears of becoming unwell again as I believed the T3 was helping me. He explicitly told me I can go back on it if my health deteriorated without it and he gained my trust. So far so good. I am glad I listened to him. Coming off T3 meds has been a revelation.  I realise that I have less joint pain and I my energy levels and temperature both feel more normal without it. I hope being on it for so long has not set me up for long term bone problems. 

I say I only thank the endo in part because I also believe that changing my diet has had a very significant impact on my health overall and it is coincidence that the two major changes happened around the same time. When I was on thyroxine only before (aug'09 - July'10) I was not well at all. Now I am on thyroxine only and also gluten free, low carb and eating very little sugar I feel pretty good, so I think the extrapolation that the dietary change is significant makes sense (though I accept it's not proven and I may be wrong).  And I'm none too impressed that this course of action was never seriously suggested to me by any of my doctors, I had to discover it for myself. But that's not what I complained about today!

The reason I complained today is because I recently read the new NHS Constitution and also had a couple of very interesting conversations with the newly appointed Director for Public and Patient Voices at the new NHS Commissioning Board.  You may scoff but I found both totally inspiring. I am very concerned about resource levels in the NHS but I believe that the new constitution outlines a vision and determination  to transform it in a way that has a chance of turning out to be very positive for all of us. And one of the things that this transformation is dependent on is a culture of feedback.  Patient voices need to be heard and can make a real difference.  Doctors and patients should work in respectful partnership and both sides need to take responsibility for what they can change and make better. 

I'm not even going to bother telling you what I complained about. Not in detail anyway, it's not that interesting. I'll just say that I had an experience of trying to contact my doctor which was frustrating because he basically didn't respond and I ended up being given medical advice by his secretary which I believe was perfectly good advice and was in line with what I believed was the right thing to do, so I'm doing it, but I felt that as a level of care from the clinic the whole thing was not what it should have been. And while I'm an assertive and relatively knowledgeable patient and so was able to navigate the situation and come away with a solution which I believe will be fine, I dread to think how someone less confident or knowledgeable may have fared, or felt. So I told his secretary to give him the feedback that I was not impressed (which I doubt she'll bother to do) and I also told PALs, to be sure he got the message.

I did it because I felt well enough to do so, whereas in the past, when I was a little soggy brained poorly thing, complaining was just beyond my capabilities, and because the NHS Constitution tells me it is my duty as a patient to give feedback so that doctors can reflect on the care they are giving and perhaps change how they operate in the future. It's all about trying to make things better for everyone. 

I'll let you know if he discharges me, or gives me a hard time about it when I see him next! (in January.)  I do have a teeny bit of residual fear but hope that I'm just being silly. Hopefully it won't be an issue and perhaps the next patient may have a better experience if they have a concern and contact the clinic about it as a result of me speaking out. 

What do you think? Have you ever complained to your doctor? What was your motivation? What response did you get? Was it worthwhile? Have you seen the Patient Opinion site and considered using that as a way of giving feedback? Have you read the NHS Constitution or otherwise tried to get your head round the massive new structural changes taking place in our NHS? Please feel free to comment or leave any other feedback below. 

*waving and smiling*

Getting better all the time. :) 

Hope