Cerebral Palsy
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Hi, my name is LibbyJ!

LibbyJLibbyJ Member Posts: 4 Listener
Hello,. I’m looking for advice. I have a 19 yr old daughter who has an EHCP in place. She is profoundly dyspraxic but every physio she has been under has suggested that she may have mild cerebral palsy. We’ve never investigated this avenue as with her other needs/ diagnosis, she was getting the correct amount of support/ understanding at specialist school. She’s now in a more mainstream setting where the understanding of her needs is not so great. She would now like to see if she does have CP... any advice on how to get the ball rolling? Thank you

Replies

  • janer1967janer1967 Member Posts: 9,092 Disability Gamechanger
    @LibbyJ Hello and welcome to the community, I am sorry I don't have an answer for you.

    Have you consulted your daughter's GP about a possible referral. You may also find some useful information in our CP specific group.

    I am sure other members will be able to give you some advice
  • LibbyJLibbyJ Member Posts: 4 Listener
    Thank you! How do I find the CP specific group? 
  • chiariedschiarieds Member Posts: 7,898 Disability Gamechanger
    Hi @LibbyJ - Welcome to the community. There are different sections here online, which you can find using the 'All groups' link near the top right hand of the page. Here's the link to the one about Cerebral Palsy: https://community.scope.org.uk/categories/physical-impairments-and-cerebral-palsy
    However, I'm not sure these links will shed much light on this. As suggested above, I think seeing your daughter's GP is the way forward to get an appropriate referral if your daughter wishes to pursue a diagnosis.
    The following website may prove useful, as Scope have been involved with them from their inception. Please see: http://adultcphub.org  where you might find a specialist with an understanding of CP in their 'Professional Directory.'   



  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI and welcome,

    I'm sorry i don't have an answer for you but i'll tag one of our admin team and he'll be able to advise you further. @Richard_Scope could you advise here please.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @LibbyJ and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I'm sorry to hear of your daughter's health struggles and hope you find the above information given by members to be useful.  Please stay in touch and let us know how you and your daughter are getting on.  We are here to support you on the forum so if there is anything you need help/support with then please just ask.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Hi @LibbyJ and welcome to the community.
    Our CP information officer @Richard_Scope isn't around this week, but I'm going to tag him in here anyway so he can check in with you when he returns as I'm sure he'd like to introduce himself and help if he can.
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • LibbyJLibbyJ Member Posts: 4 Listener
    Many thanks everyone for being so welcoming and for any advice 😊
  • Richard_ScopeRichard_Scope Posts: 2,723

    Scope community team

    edited March 2020
    Hi @LibbyJ
    Good to meet you and thanks to everyone for tagging me into the conversation. 
    It's not unheard of for people to receive a diagnosis of CP in later life. You should make an appointment with your G.P. and request a referral to a Neurologist. 
    There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation).

    Let me know how you get on?

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • LibbyJLibbyJ Member Posts: 4 Listener
    Thanks so much Richard, I’ll get the ball rolling by making a GP appointment. I’ll certainly keep you posted. 
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