Cerebral Palsy
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Advice on connecting with people in a similar situation.. Liverpool area

Steve_83Steve_83 Member Posts: 2 Listener
edited September 2019 in Cerebral Palsy
Hi all, new to the forum. Father of a (nearly) 4 year old girl with suspected Cerebral Palsy and Global Delay. 

Neurologist not entirely ruled out a genetic cause for her condition and she has another MRI this week to look further at abnormalities in her brain.  But she presents as having cerebral palsy and so is having the associated care/therapies.

We have been in a bit of limbo for a while as doc has been back and forth on weather it be caused by a difficult delivery or a genetic condition.. had birth notes etc. She's affected in all limbs and has global delay so she is quite behind.

We are in the Liverpool area and wondering if anyone knows of groups that may run for people in a similar boat, not really got anyone to talk to other than eachother and starting to feel a little isolated with friends and family.. easy to get cut off or i guess.

Sorry for the big ramble 😄 thanks in advance 

Replies

  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Hello @Steve_83
    Have you tried Contact a Family?
    Here is their site https://contact.org.uk/advice-and-support/local-support/. Also ask your doctors whether they know of any local support groups you can join or not. If not look at support groups online.
    They can make all the difference to us. On bad days they can support you and on good days celebrate with you. It made me deal with things better especially in the early days when I was adjusting to my new normal. 
     
  • Richard_ScopeRichard_Scope Administrator Posts: 2,354 Scope community team
    Hi @Steve_83
    Welcome to the community. Scope has a national mentor service that provides emotional support for parents, called Navigate My colleagues at Navigate have lots of experiences from diagnosis to dealing with the day to day.

    I live with quadriplegic Cerebral Palsy and I'm around if you want to talk.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Chloe_ScopeChloe_Scope Administrator Posts: 10,673 Scope community team
    Hi @Steve_83 and a warm welcome to the community! Thank you for sharing this and please do let us know if we can do anything else to help. I too would suggest looking at the Navigate service that my colleague has suggested. :)
    Community Partner
    Scope

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  • Steve_83Steve_83 Member Posts: 2 Listener
    Hi all sorry for the late reply, and thank you for the welcome.

    I'll check out the navigate service, I'm also speaking to contact s family to see what's available in my area.

    Appreciate the help and guidance, don't really know what we're looking for exactly but we're open to see what support is available.

    Hope you all have a great day ahead of you. 

    Thanks
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,673 Scope community team
    No problem at all @Steve_83! Please do keep us updated and I hope you are able to find some support. If you have any further questions then we are always around. :)
    Community Partner
    Scope

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  • Richard_ScopeRichard_Scope Administrator Posts: 2,354 Scope community team
    Hi @Steve_83
    How are things? I have found some links that might be helpful:
    LivPac is a local parents and carers association

    Early Help Register This is more like a directory of services from Liverpool City Council.

    Liverpool Council for Disabled Children again, this is a directory to services in the wider area.

    Apologies for the delay in finding the information for you. It wasn't as easy to find as it should be!
    Scope
    Specialist Information Officer - Cerebral Palsy

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