25/365 – Consultant Question Time

Yesterday I had my first appointment with my consultant since October. The last time I saw him I was apathetic after the lack of immediate results from my thymectomy. This time I had a long list of questions for him and I’ll go into some of the answers he gave over the next few posts. But for today I’m going to stick with the overall consultant experience.

Let me first say that I know I’m very lucky to be seen by a specialist. I may criticise the NHS from time to time but I would be lost without it. Also, none of the following comments are meant to be critical of my own consultant – just a reflection of my feelings.

From the first time I visited my consultant, when I had been waiting for months and was delighted that I would finally start treatment, the visits have left me feeling confused and low. We go through the same routine each time – a rushed ‘how are you doing’, a quick assessment of my vision and the strength in my muscles and then a re-evaluation of my drugs (normally an increase). Occasionally, to mix things up, I get four vials of blood taken. There is never talk of an overall plan nor is there talk of lifestyle factors unless I bring it up.

I must say yesterday was better because I ignored the voice in my head saying ‘you are keeping this very busy man from other more important work’ and asked him my questions. Those extra 5 minutes or so gave me a lot more food for thought, and more material for this blog, but I was still overcome by a low mood.

My MG feels black and white after leaving my consultant – still there or all clear. But anyone who has the condition knows hardly a day goes by without a new shade of grey revealing itself. It’s the day-to-day battles that make that frivolous ‘how are you doing’ at the start of each appointment near impossible to answer.

I guess the heavily scientific approach of consultants make hope, other than the next dose of drugs working, a challenge. While this is good in that there is never any false hope, for the same reason it is hard. Anyone with a condition like MG knows that some days you need to believe that you will get better because the alternative mindset is bleak.

So what’s the answer? Well, consultants are extremely busy people and I understand the job isn’t to provide counselling or spiritual guidance. While I’ve never been offered it, I know that the NHS offers counselling and alternative therapies to those who might find be suffering from depression or low moods as a result of their condition. I do wonder whether on these infrequent consultant visits, whether it might be worthwhile to have a nurse assess the more psychological side of living with MG before the doctor assesses the purely physical side of business. Again, a five minute chat about living with the condition might eliminate the patient’s feelings of being a medical experiment.

Today’s image is Charlie Chaplin and I who I ‘bumped into’ after my appointment. I needed some light relief and he was just the man to give it to me.

6 thoughts on “25/365 – Consultant Question Time”

  1. Oh I so agree with this! I always seem to come out in a low mood from the consultant as everything focuses on the negatives. Mine told me that my op hadn’t worked last time I went despite only having it 8 months ago. He asked if I would consider another op incase anything had been left behind! I told him I didn’t think I had been given long enough to see if it had as it takes over a yr to 3 yrs. I think in those snatched 15 minute appointments you don’t get to ask everything that’s been troubling you since last app. I’m a positive person though and feel that my mg has improved since op and my flare ups haven’t been as frequent or as bad. I hope your speech is ok now? Def one of the worst symptoms. Ivig works well to clear your symptoms has your consultNt suggested this? It’s expensive tho and think it’s a bit of a postcode lottery! Chin up and stay positive, Annie ๐Ÿ™‚

    1. Hmm, not exactly what you want to hear after an operation you probably weren’t massively keen on having in the first place?! How empathetic can you be (and wrong – as you say, up to 2 years for the full results to show is what I’ve been told)

  2. So glad to read this today as I wait for my re-referral to consultant after 2.5 years remission need May 2014. I dread visiting him as I always feel such a time waster, but this blog has helped me remember I’m being referred their because I HAVE a disease – I’m no time waster! Keep ’em coming!

    1. I’m glad to hear it – you are definitely not a time waster and should never be made to feel that way. I hope everything goes well with the appointment Amy – would thoroughly recommend a LONG list of questions ๐Ÿ˜‰

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