Wednesday, 21 November 2012

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. 


  1. I find the whole concept of talking on the phone with people who are struggling so refreshing. It is nice to hear of people out there starting a phone support system. I have been researching a lot about thyroids recently (specifically hypothyroidism) because my mom has it. I find your blog very informative. Thank you very much for updating it as often as you do!

    1. thank you for those encouraging words Kloppy! I hope your mum is doing okay and it's smart of you to gen up for yourself, both with her interests in mind and potentially also your own as the illness does sometimes (not always) run in families. It's good to be informed and good to share. *waving and smiling*

  2. I was told at 35 that I was "not as young as I used to be" and that being tired all the time was "just one of those things...." after all my blood results were normal!
    ps - personally I'd be practically comatose with a TSH of 6.9 - anything over 1.5 and I'm struggling.

    1. wow, at 35, that's even more shocking. how are you feeling nowadays? thanks for stopping by and commenting.