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just seen the worse consultant ever!!

pantherpanther Member Posts: 251 Courageous
edited June 2014 in Disabled people
Hi All

Have just come back from a neurology appointment and it was with the worse consultant I have ever seen I nearly walked out on him!!

The gp reffered me to a neurologist to look and give advice on the pain I'm getting with my cp the tight muscles etc and also to look into these episodes I keep having. I have a history of non epileptic seizures usually brought on through stress and since the government have been talking about changing Incapacity benefit to ESA and sending disabled people back to work we think these seizures have come back but in a different format to before so the gp wanted them investigated.

Well this consultant watched a video on my partners mobile phone of one of these episodes and more or less dismissed it. Saying well she has non epileptic seizures that is what they probably are. He asked what was making me stressed. When we said all the changes to benefits and the governments plans to send disabled people back to work.

He replied with well so they should go back to work why can't you go back to work for the library service!!

During this time he talked over both myself and my partner the whole time. He then started asking about the cp he dismissed ageing and cp with a wave of his hand as rubbish. And all he could talk about was botulinum toxin injections.

I explained that I had concerns about the side effects of these injections and also the whole idea of the fact that it was an injection so if there were problems with it I couldn't reverse it but again he dismissed my concerns by talking over me the whole time.

He then examined me and saw the problems I am currently having with my toes as an after effect of my bunion surgery (I'm seeing the consultant at Oxford about this on Friday so look out for the next update).
He started saying about having botox in my toes and I told him I hadn't come to him about my toes so to leave them alone. I explained that I was seeing the consultant on Friday who had done the foot surgery so would get his advice then. The consultant today then accussed me of being a surgery junkie saying all I seemed to be intrested in was surgical proceedures and that wasn't going to stop my problems.

We then argued out the fors and against of the botulinum toxin injections with him telling me I shouldn't listen to things I hear/read and even though I pointed out that every doctor or physio I've seen so far over the years has advised me against these injections he still said I shouldn't listen to what I heard.

I nearly walked out on him and have ended up with him thinking I'm unreasonable because I won't consider being reffered to have the injections done and that is all he is prepared to suggest and me hoping I never have to see this man again ever.

It was almost as if he'd made his mind up before we went in and that he couldn't cope with someone that knew their condition and answer back. Oh and I nearly forgot after talking over me constantly he dropped into conversation I don't do spastic cp I do dystonic so how is he suppose to understand my concerns!!

That's all guys just wanted to rant about how rubbish this appointment had been lets hope my appoinment on Friday goes better at least I trust that consultant. Wouldn't trust this one as far as you could throw him!!



  • acrossthepondacrossthepond Member Posts: 36
    Hi Helen,

    I'm sorry you had such a bad experience. I had many of those until I found my first neurologist that specialized in movement disorders. Even then, I have discovered since I moved across the country, not all specialists are equal. You know from what I mentioned in other posts elsewhere on this site that I have had many different experiences similar to what you are describing.

    You mentioned a few things though that I want to address. Your consultants comment that he does only dystonic CP and not spastic is bizarre. I have spasticity and my diagnosis is dystonic CP and my neurologist treats both! I have gotten botox injections since 1998 and they do help me. They relieve my muscle tension and help with my balance issues and pain. They aren't a cure but they are the best thing available that I know of. I still need PT and medicine but I would function much worse without them. I haven't experience any side effects and in fact my doctor just injected my foot to see if it helps my curling toes. We did one foot to start and it seems to help but my experience tells me that it takes my body two rounds of injections for me to see the real results. In addition, my dosage level remained the same until recently when we expanded the areas we were treating. My new doctor injects my legs and now my back (and feet ?). In all this time I haven't had any trouble with side effects. Some people like me need injections every 3 months but others, like a friend of mine, needs it once a year. Everyone is different but I wouldn't know what to do if Botox was taken away.

    The one problem I have encountered since my original doctor left the medical field is that every doctor has a different take and does injections differently. Some inject more deeply into the muscles than others, some use an EMG machine as a guide while injecting, some use a topical spray to numb the area before injecting, some don't. so as I said before...you may have to kiss alot of frogs before you find the right doctor. Don't give up or in. After all, we live with this condition! Our doctors get to read and observe it. In this case, life trumps sight, if you ask me. Keep in touch. Regards, Joyce
  • PeteHPeteH Member Posts: 7
    I find this slightly concerning as i have my very first appointment at Oxford at the end of this month to try and figure out why my symptoms are getting worse at 36? I don't know much about my condition as it is very mild and as such i would not argue with the consultant. What should i do?
  • pantherpanther Member Posts: 251 Courageous
    Hi Pete H
    Don't worry you'll be fine at Oxford which hospital are you going to the Nuffield or the John Radcliffe?
    The consultant I saw yesterday was a nuerologist that was doing a clinic at the Chalfonts hospital not sure where he is normally based I think either High Wycombe or Amersham.

    I have been seeing a foot and ankle surgeon at the Nuffield Orthopaedic hospital in Oxford because that is where I had my bunion surgery done a few years ago and I've also seen physios at the same hospital and they've all been really good and I'd trust them completely.

    I'm going back to see the foot and ankle person on Friday because I'm having some problems after the last lot of surgery but as I've said at Oxford I know they know what they are talking about so I'm in save hands and so will you be if you are going to the same hospital sorry I worried you!!
    If you are going to the John Radcliffe I don't know that hospital I have never been to that one so can't advise you on what the staff there are like.
    Good luck with your appointment hope they are able to help you. Just a thought have you looked on this website at the cp and ageing factsheet? You can get it if you go to the information section. I'm the same age as you and my cp is also mild but I have found this information sheet a godsend to help me understand why there are some days I feel more like someone in their 70s due to all the aches and pains, it's also a useful information sheet to take along to hospital or doctors appointments as a starting point. I've lost count of the number of copies I've printed off and given to doctors, physios, consultants etc

  • SteveESteveE Member Posts: 54 Courageous
    You should make a complaint to the trust PALS and definitely g back to your doctor and ask to have a second opinion even today with all of the changes over the last decade you are entitled to this. However you may not be able to go back to the trust for this department.
    PAOLS have an office in the hospital and they can advise you about what to do next. They can look into your problem and it can be kept in the hospital though by this it will be kept between you Pals and Patients Leads whose responsibility it is rto report as a third party reporting to governace of the trust without you being named.
  • pantherpanther Member Posts: 251 Courageous
    Hi Yes I know I can speak to PALS and put in a complaint and I might do I'm not sure yet. I'm going to see my gp tomorrow to tell him all about it and to make sure I never get sent back to that doctor again so will see what happens tomorrow.
    Although at the appointment yesterday the doctor did agree to send me for an EEG and the laughable thing is for the EEG I have got to go where the gp was going to reffer me to in the first place, before he decided to ask one neurologist to look at these episodes and also give any advice on my cp. So I'm almost going full circle
  • PeteHPeteH Member Posts: 7
    Thanks Helen,

    I am going to the Radcliffe, i think i will do as you suggested and take a printout of the fact sheet. maybee it will help as my doctor (very good doctor i might add) is now questioning the diagnosis because she told me that CP does not get worse over time, this seems to be quite a big debate at the moment. not sure what the consultant will say? I just want to get my life back on track and know what to expect from the future.
  • SteveESteveE Member Posts: 54 Courageous

  • Katherine HaywardKatherine Hayward Member Posts: 74
    Hi Helen, just read about your experience. I live in Madrid and my parents live in Wallingford, Oxfordshire and have been concerned by my experience I had with a neurologist at the Nuffield in Oxford last year. I went to him for follow up after physio and my parents came with me. I have spastic tetraparesis CP, hydrocephalus with a VP shunt and am partially sighted.
    He talked over me the whole time, I have convulsions and muscle spasms and he referred to the involuntary movements a person with dystonic CP would have and was referring to dystonic CP the whole time. My carer here is my fiancee, and I have a good neurologist. The specialist there dismissed all the efforts of my fiancee and neurologist who
  • KatieR2KatieR2 Member Posts: 28

    that is appaling! I would put in a complaint explaining why that attitude puts me at risk. You don't necessarily have to follow it through. But I would just say something because also he is putting other people at risk. Cutting corners like that is not the way...
  • dunglassdunglass Member Posts: 1
    just joined ,bit late to reply to this report,but have to say it anyway,apart from the appalling neuro, don't have botux injections particularily if you have cp.
    my daughter had it and she totally lost all her muscle control it didnot just affect the one muscle it was intended for and it took 3 months for the affects to wear off,but worse is to come because some years later my daughter was suffering a lot of pain and was getting stiffer another specialist talked us into doing it again,saying she must have had to high a dose and that botux never has reactions-it took 2 years to get over this lot and of course inthat time the muscles did what they liked so she was worse off.
    be warned
  • pantherpanther Member Posts: 251 Courageous
    Hi Katherine
    Thanks for your reply I'm sure if you are looking to move back to the UK you would be fine at Oxford. As I've said in an earlier post the neurologist I saw was from Amersham hospital in Bucks. I believe he works from the Chalfont hospital, Amersham hospital and High Wycombe all of which are in Bucks.

    I have no expierence of the neurologists at Oxford. My appointments at Oxford have all been with the foot and ankle department and the treatment I have received there I couldn't fault.

    Good luck if you do come back to the UK.

  • pantherpanther Member Posts: 251 Courageous
    Hi Peter

    Thanks for the warning I decided a long time ago that I would never do Botox injections as I always have bad reactions to tablets. It's taken my gp years to actually find tablets that I don't get a bad reaction to, or something that works for longer than 3 months before I'm back in his surgery saying the tablets are no longer working.

    Because of this I've always said that I wouldn't let them inject something as I would just have to wait for it to wear off and at least with tablets I can just stop taking them.

    Thanks for the warning though.

  • pantherpanther Member Posts: 251 Courageous
    Hi All

    Just a quick update on this post for you. I went to the hospital last week for a follow up with the neurologist, my partner and I went ready to find after what previous appointments had been like but we didn't see the neurologist I don't like but one of his colleauges.

    She was the complete opposite to the first neurologist we explained to her what was happening, also that my EEG was inconclusive and that the previous neurologist had put me on anti convulsants and that since being on these tablets I had 13 episodes when I took the dose as he had wanted it taken of 200mg in the morning.

    I explained that after talking things over with my GP my GP advised changing the dose to 100mg morning and night and since doing that at the beginning of June I'd only had 2 episodes. The doctor at the hospital said that clearly showed the dose worked better for me that way. And also said that the descriptions of what are happening sound like classic complex partial seizures. My partner also thinks the same as he works with people that have got epilepsy.

    We explained to the doctor we were seeing why we didn't like the neurologist and she looked horrified. She went and checked with him though as the best course of action and came back saying that he had agreeded with her that I should stay on the tablets as I'm taking them twice a day for another 6 months and they will review the situation then and make a decision on if they are epilepsy or not though it now seems more likely that they are.

    So now have to wait until Januaury. Will keep you posted after that appointment.

  • Katherine HaywardKatherine Hayward Member Posts: 74
    Hi, did put complaint in but didn
  • KatieR2KatieR2 Member Posts: 28

    thats still worth it because it supports someone else if they complain too. Its brave of you...
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