Hi, my name is LibbyJ! — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Hi, my name is LibbyJ!

LibbyJ
LibbyJ Member Posts: 4 Listener
edited May 2021 in Cerebral palsy
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
Tagged:

Comments

  • janer1967
    janer1967 Member Posts: 15,233 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
  • LibbyJ
    LibbyJ Member Posts: 4 Listener
    Thank you! How do I find the CP specific group? 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,266 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.'   



  • poppy123456
    poppy123456 Member Posts: 28,525 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.
  • Ails
    Ails Member Posts: 2,256 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_Scope
    Adrian_Scope Posts: 8,572

    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.
    Community Manager
    Scope

    Tell us how to make the community better for you. Complete our feedback form.
  • LibbyJ
    LibbyJ Member Posts: 4 Listener
    Many thanks everyone for being so welcoming and for any advice ?
  • Richard_Scope
    Richard_Scope Posts: 3,115

    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 and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • LibbyJ
    LibbyJ 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. 
  • matthew2909
    matthew2909 Member Posts: 22 Connected
    LibbyJ said:
    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
    Hello Libby I dont have cp But i have got dyspraxia to how is your daughter fiding it 

Brightness

Complete our feedback form and tell us how we can make the community better.