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. :) 


Monday, 15 October 2012

Event press release, 10th Nov, Thyroid and Pregnancy

Welcome to my blog. This post consists of the press release for an event I'm organising next month - perhaps you could share it, it's on an important topic - thyroid and pregnancy.... read on..... 

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 - and particularly their effect on pregnancy - at the Royal Free Hospital, London on Saturday, 10th November 2012.

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 can have a devastating impact on people’s lives.

Thyroid disorders are prevalent in women of child-bearing ageUncorrected thyroid dysfunction in pregnancy affects both fetal and maternal well-being. 

We need more thyroid hormones during pregnancy and in some cases a previously unnoticed thyroid disorder can be worsened when a woman becomes pregnant, risks include pre-eclampsia and miscarriage. 

All women considering pregnancy, and all health care professionals working with pregnant woman, should be aware of possible thyroid related issues.  Patients with thyroid disease need to be closely monitored during pregnancy.

The effects of thyroid dysfunction can also extend beyond pregnancy and delivery to affect intellectual development in the early life of the child.

The speaker at this event will be consultant, Dr Stephen Robinson, of St Mary’s Hospital in Paddington, who will be talking about “Thyroid disorders and pregnancy,” and will also answer questions from the floor on all aspects of thyroid disease.

Dr Stephen Robinson has a breadth and depth of experience in endocrinology and general internal medicine. He has contributed to specialist working groups at the Royal College of Physicians and Obstetricians, contributed to the confidential enquiry into maternal health and is also Chair of the thyroid cancer tumour working group.

Where and when

The event will take place on Saturday, 10th November, from 10am to 1pm, in the Sir William Wells Atrium, Royal Free Hospital. For more information or to book a place, contact Lorraine Williams on Refreshments will be provided. Donations will be welcomed, with a suggested minimum of £3 per person, to help cover the costs of the event.

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 public transport.

Notes for editors

The BTF London group was launched in 2011 and this will be our sixth event. We usually get around 40 attendees and feedback on all events so far has been very enthusiastic. For more information about this event or future activities, or to access thyroid patient case studies and feature ideas, contact Lorraine Williams on:

Lorraine writes a popular blog about her experiences with thyroid disease and running the BTF London group Thyroid Hope

TheBritish 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 closely with medical professionals from the British Thyroid Association and the British Association of Endocrine and Thyroid Surgeons. Website

More information on thyroid and pregnancy can be found via The British Thryoid Foundation, Thyroid in Pregnancy Campaign