Friday, 26 October 2012

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. :) 



  1. Hello Lorraine
    A VERY interesting post - I did complain about an endocrinologist once, he was completely dismissive about my symptoms (apparently not thyroid related) and the way my life was falling to pieces because of my condition (again, nothing to do with my thyroid apparently). I went through PALS and was told that he had 'moved on' from the hospital. I saw him again about 2 years later while I was 3 months pregnant - he told a room full of medical students "of course the risk of miscarriage and still birth is greatly increased with this condition" without even looking at me or my little bump (who is now at school and doing very well btw). I know that I should have complained at that point, but I was exhausted and pregnant. So I didn't. I had completely lost faith in the medical profession and for many years later I attended meetings with numerous doctors and endocrinologists grinning and bearing it as I was measured and patronised and told I was 'normal' when it was quite clear to everyone who knew me that I was not... whilst frantically looking to alternative medicine for answers. Eventually a very nice endo referred me to a very human surgeon who talked to me like a human being and took my problems seriously and took my thyroid out, which is probably what should have happened in the first place. At that point my health had deteriorated to such a point I was having psychotic episodes (because of hashitoxicosis). My point is.... if I had had endos and doctors who had LISTENED to me and BELIEVED ME when I voiced my concerns I would not have had to endure 7 years of misdiagnosis and the wrong medication, thyroid bone disease, postnatal depression, psychosis and breakdown..... (not that I'm complaining, I am a much better person for it!!!)
    But making a formal complaint was just TOO HARD when I was ill... maybe I should do it now?

    On another point - diet - I am convinced that it is key to the absorption of thyroxine in the gut. Obviously I don't know the chemistry or the biology - I'm not an endo - but after a 3 day fruit fast I had more energy than when I was eating 'normally' - and I think that gluten, dairy, and most importantly SUGAR have a lot to do with it... still a lot to work out for myself... good luck with your explorations.

    1. Hi Furneaux Fan, wow, your story should be a salutary tale for doctors in medical school when they are taught about the importance of listening to patients (do they even get taught that at the moment). It seems to be a doctor you have to be so academically bright that perhaps they are disproportionately less likely to have high levels of emotional intelligence. Thank god for the good ones, and for the moves to improve standards which are so badly needed.

      I'm so glad you can look back now and your little girl is fine and you can reflect on what you've gained rather than dwell too much on the awful side of things.

      But what happened to you is awful and maybe it would be worth writing to the lead consultant at the trust concerned to share your experience with hindsight, so they can be aware of the impact of how things were and possibly take steps to reduce the likelihood of it happening again.

      I agree with you, the diet issue does seem to be key for a lot of us. I wish I'd known this earlier, I wish doctors were more aware and would spell it out to us - as diet is something we can address for ourselves beyond prescription medication. Even better, how good would it be if there really was tailored, specialist dietary advice available for thyroid patients who ask for it. Unfortunately when we talk to the specialists it seems to be such a controversial area, it's very difficult to work out who's advice to follow! Like you, I'm trying to work out a lot for myself, the good news is I feel I'm making progress.

      Sugar is a substance I struggle to give up. it's clear I have some kind of addiction to it though I only eat it very moderately these days, if I have some I invariably want more soon after and I need to be super careful around it. You're probably right, it's probably a big factor and one I need to be even more mindful of than I already am. but hey ho, it's a learning journey. We keep moving forward.

      good luck to you too, come back and again, I'd love to compare more notes.

      with smiles

  2. the question of how to complain effectively so that it's not just wasted effort remains....the Patient Opinion website? PALS? Direct to the Trust, or clinic concerned? A specialists governing body. I wonder........