As a patient I have been both private and on the NHS (this is because my private insurance does not cover "observations" and I can't afford £120 to see a private consultant). Though my Neurologist (Dr Gibb) actually works for both! So an appointment was made for me to see him on the 19th of December, through the NHS, to see him.
Due to their wonderful NHS systems, someone decided (not either of the consultants) that I was going to wait too long to see a Neurologist, so my appointment was moved to 20th of November and at a location further away. I attended this appointment with concern.....
So my appointment was for 16:00 and one of the first things I noticed were a marked increase in signs and notices - one referring to "If you have to wait more than 30 minuted then talk to someone.about it!". I hoped I would not have to wait anywhere near that long, however I arrived at 15:50 and it was 16:25 before I was seen. I was not best pleased!
The first thing the new consultant said to me was "Now could you please tell me about what has happened to you, as our notes seem incomplete?" - at which point I was even less pleased. In the first place if I saw the same consultant then they would know and in the second place it should be on their system, so I should not have to go through it all again! In his defence, as I had been part private and part on the NHS, the NHS did not have visibility of my private records, but even so, the actual information he had about my treatments and status were woeful. Thus I gave him an abbreviated version, in not to polite a manner and expressed my concerns.
I explained, that whilst I can walk better than before I was not walking properly (for me) and thus my right knee was in pain every time I took a step, which though I could stop with strong painkillers meant that if I did that I would be on them for the rest of my life, so I just get on with it and ignore it as much as possible. What I really need to do is work out how to walk like I did before CIDP and then it would be fine.
We went through the usual, pin prick stuff and the relax your legs and push/pull and the "Oh your right foot seems very different to the left.....!" (Sigh! - so I explained about my accident when I was 9 and that thus my right foot was three sizes smaller - Again!). I really do think that this needs to go on my file as it is an important contributor to some of my issues and I keep pointing this out and they ignore it and ask stupid questions every time.
I then asked two questions:
- Why do I get sharp pains in my lower legs/feet at night, that wake me up and thus only get 4 hours of good sleep?
- Why do I get so tired every day and just can't do much at all either for exercise or for work, it was like a battery running down and needing a re-charge and the weekends were only for re-charging thus life was not "fun"?
Now the answers he gave I found condescending and completely unhelpful.
To the sleep/pains he stated that as I was getting older people generally got less sleep and due to the sleep cycles about 4 hours was what I was likely to get. He also stated it was not the pains that woke me up (and reckons this has been proved). thus I woke up and then got pains (not at all convincing to me and my daughter wakes up with severe foot cramp, so according to him she wakes up and then gets severe cramp) borrocks!
To the second point on feeling tired, he also put this down to getting older and nothing to do with CIDP!!!!!!!! (What Rubbish! What a Pillock!). I did try and explain about my survey of over 500 patients and that nearly everyone had fatigue issues, but he just wouldn't listen. He ought to try having this illness!!!
Thus my visit to the consultant was a complete waste of time! Well not completely....
He has stated he would arrange another appointment for me with Dr. Gibb, though for 12 weeks time!
