Wednesday, 29 May 2013

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.

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.


  1. Thanks for another interesting post.

    Becoming more patient focused can only be a positive thing. Our local GP practice is okay, a few things have been improved recently, you can now order prescriptions online (whoop whoop), but mostly it feels very old school. I expect the semi-rural location is something to do with it. I know the city practices use a lot more technology for communication and have realistic opening times to fit with people’s requirements. A recent hospital experience was a real eye-opener, to say they were stretched would be a massive understatement. I’m passionate about the NHS and hope the government find ways to keep it afloat.

    On a personal note, I’ve recently been told my T4 is an impressive 30 and TSH 0.01!! I’ve been stable for quite a while but just had a baby and its sent things haywire. The GP advised I drop from 125mcg to 100mcg, six weeks on and I’m feeling dreadful. So back to the GP for me, oh the joys ;-)

    1. thanks for commenting Claire, it means a lot to know that someone at least finds this blog interesting!

      I agree, an increasing patient focus in the NHS is undoubtedly a good thing - and I do think it is starting to happen, partly because the internet enables patients voices to be heard more than ever before and is a force for general enlightenment (when it's not the opposite). The pressure in the system is scary though. I too hope they will find a way to make it work before the whole thing and everyone in it collapses from the current strain some parts of the system seem to be under.

      My TSH was 0.01 for quite a while, when I was taking T3 medicine, there are apparently bone and heart risks to being so suppressed so I'm not surprised your GP wanted to drop your dose a bit. So sorry to hear you are now feeling dreadful though. What a pain. :(

      It seems that more and more people I talk to are on split doses - I take 125 one day and 100 the next and there's talk of splitting it even more subtly now, say 125 once every 3 days and 100 the rest of the time. If dropping 25mcg every day was too much for you perhaps a subtle split dose like that might be something your doc would consider.

      The BTF is talking to pharma companies about the possibility of getting tablets in smaller variations, as are available in the states. Seems like it could be a good idea!