Cerebral Palsy
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Positive experiences of health care professionals and hospitals that are particularly good with CP

NoahNoah Member Posts: 430 Pioneering
edited July 2014 in Cerebral Palsy
Just thought It would be interesting to discuss positive experiences we have had.


  • nicebootsniceboots Member Posts: 196 Pioneering
    Recently I have had two very positive experiences with healthcare professionals.
    The first was earlier this year when I was referred for another short course of physio, the physio I saw was very honest with me from the outset, pointing out that I know what I need to do to keep myself mobile and comfortable, she put the cards on the table by saying that if I'm not willing to put the work in with stretching, then I'm wasting my time. That was the kick in to touch that I needed and from there on we worked well together. We reviewed my existing set of stretches, tried new ones and bounced ideas between us really well. In fact she was impressed at my inventive style of adapting stretches to suit me, and my use of equipment that she hadn't even thought of, such as weighted sandbags to use almost as an extra pair of hands to get a better stretch and keep my legs where I want them. This is a tip I picked up from a friend who's into yoga.

    The most recent positive experience I've had is with the new Orthotist I see.
    He really listens to and respects my knowledge and my point of view, Particularly regarding the problems I've had with my right afo. Having continually told other Orthotists that it doesn't fit properly and I believed it was cast at the wrong angle, I began to feel fobbed off as I kept being told that it was fit for purpose when clearly it was not...
    The new Orthotist listened to my concerns, took one look at it and agreed not only was it not doing it's job, but it was pretty much useless as I could bend it out of shape. He promptly made me an appointment to get it re-cast (which was yesterday). When re-casting he fully explained the materials he was going to use and the difference in strapping, what it would do and how it would help me.

    I can definitely say that these two experiences have restored the faith that I was beginning to loose in certain medical professionals....
  • NoahNoah Member Posts: 430 Pioneering
    edited July 2014
    Really great to hear, thank you so much for sharing your positive experiences Niceboots. Maybe we should start another discussion on the forum, on Good practical tips for Physio that we have found to work, as your idea does seem rather genius, and i'm sure there are others. What do you think? Thanks again. Keep us posted on how you get on sorting your AFO's. I've got a fitting in two weeks time to have a slightly different foot position and some air vents drilled, to help with this hot weather! I hopping very much that they will agree to fund a trail of carbon Fibre AFO's!

    Thanks again :-)
  • milomilo Member Posts: 164 Pioneering
    In my case the neuro physio I see has been a real godsend. She is incredibly proactive and seems to be able to get hold of any equipment I need at a moments notice. In addition she referred me to a fantastic OT who has been invaluable in arranging adaptations to the house. In addition to this, the wheelchair services in this area have been amazingly quick at getting me first of all a manual chair,and then a power chair which I've just started using today. I know from experience that it doesn't always happen this smoothly but the team in teesside have shown just how well a joined up service can work
  • NoahNoah Member Posts: 430 Pioneering
    Ah that's great to hear, thank you. Yes and so it it should work as you describe. Joined up! A neuro physio, that's interesting, how do they differ from a normal physio? Was it easy to get refereed to? :-)
  • milomilo Member Posts: 164 Pioneering
    The neuro physios only work with patients referred by a neurologist, so tends to be CP, ms and stroke patients etc. In this area they seem to have almost immediate access to equipment and facilities. Ie they have motomed bikes in local sport centre so I can use them between physio appointments. Otherwise very similar to "standard " physio except that they only deal with neuro based conditions
  • NoahNoah Member Posts: 430 Pioneering
    edited July 2014
    Thanks for that, great information, helpful. Are you able to tell me which NHS health trust that is, as I know areas do vary a bit. Very good to hear yours is doing a good job.
  • milomilo Member Posts: 164 Pioneering
    It's a service run by North Tees trust although the consultant is based in South Tees area. Having lived in various areas, this is by far and away the best service I've come across.
  • LizzieLizzie Member Posts: 2
    My GPs are brilliant in supporting me as I deal with issues related to and unrelated to my cerebral palsy and deafness. I have a lot to tell them and they listen and stand by as I keep learning about things : )
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