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Better care for adults with CP

BeccyJBeccyJ Posts: 59Member Courageous
edited October 2017 in Cerebral Palsy
Over the last few years my mobility has decreased significantly.  Friends always ask me why I don't go to my doctor to get more help.  They are really surprised when I tell them I have tried to but can't get any help.  The other day I came across this petition and thought that there might be some people here who would be willing to get on board.  Link is below:

https://you.38degrees.org.uk/petitions/better-care-for-adults-with-cerebral-palsy




Replies

  • BeccyJBeccyJ Posts: 59Member Courageous
    Can someone from Scope please confirm whether Scope is willing to support this?  There is next to no research being done on issues facing adults with CP.  All the focus seems to be on children.  Children become adults.  It's sounds obvious but it doesn't seem to be obvious when it comes to CP.  We don't just disappear when we become 18.  Just briefly looking at this forum would show anyone who is remotely interested how common it is that adults with CP have to deal with deteriorating mobility etc and how they almost inevitably hit a brick wall when it comes to getting any treatment or advice.  I have asked for help on several occasions.  At its worst the advice has been "What do you expect, you have CP.". At its best I had a short course of physio from a neuro physio who, although very kind, specialised in treating stroke patients, and, by her own confession, knew next to nothing about CP.  What is Scope actually doing to help to champion this issue which is being faced by so many adults with CP?
  • BeccyJBeccyJ Posts: 59Member Courageous
    Hi.  Just an update on this.  I moved my request to the Events and Research forum.

    This is the link

    https://community.scope.org.uk/discussion/33360/better-care-for-adults-with-cp#latest

    If as as many of you as possible could sign this it would go a long way to helping.

    Emma has said she needs at least 500 signatures to stand a chance of this being taken seriously.  I think if we could all state why we have signed (personal experience of lack of support from NHS etc) it would really add weight to Emma's arguments.

    Even if you haven't yet had personal experience of the brick wall that is adult CP services, you might do in the future.

    If you have a child with CP, as things stand, your child will find themselves out in the cold once they get to 18.  Doing something now will help them in the future.  They will spend most of their lives as an adult battling inadequate services!

    Please help
  • BeccyJBeccyJ Posts: 59Member Courageous
    Hi everyone.  

    Just an update on this.  If you'd like to read more please take a look at the thread below.

    As I mentioned in the last post, this is a massively important issue for anyone who is affected by CP.  If you are affected by CP or are a parent of a child with CP, please consider supporting @emmaliv.  

    https://community.scope.org.uk/discussion/33360/better-care-for-adults-with-cp

    Thanks!
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