Community paediatrics rejecting baby with CP

Lapin3
Lapin3 Online Community Member Posts: 3 Listener
edited January 14 in Cerebral Palsy Network

I am a foster mum. Baby R is with me, 3 months old with emerging spastic cerebral palsy following birth trauma.., community peads team rejected him saying he needs acute care, ( as possibly I am Seeing vacant episodes and spasms). in the last 3 weeks we have visited 4 nhs hospitals and had 1-4nights in 2 of them… acute sector not want us… waiting lists for mri so long! What can I do in meantime….

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  • Bluebell21
    Bluebell21 Online Community Member, Scope Member Posts: 15,375 Championing

    Hi @Lapin3 Welcome to the Community. I have tagged in @Lucy_Scope and @Richard_Scope who both deal with CP questions.

    Take care.

  • Lucy_Scope
    Lucy_Scope Posts: 160 Cerebral Palsy Network

    Hi @Lapin3

    I am sorry to hear you are having difficulty obtaining a Cerebral Palsy diagnosis for your foster child.

    I would go back to the GP and push for a referral to a child neurologist.

    Is the child's Social Worker pushing for an assessment as well?

    Best wishes,

    Lucy

  • Lapin3
    Lapin3 Online Community Member Posts: 3 Listener

    thanks Lucy. With it being Xmas people have been away. I have emailed her urgent for when Social workers returns to work tomorrow… I will ask for neurologist referral. Being rejected by community peads has not helped! I still Need someone to Co-ordinate his care so that he gets full assessments. Thanks for reaching out. Will

    Chase tomorrow for referral .

  • Richard_Scope
    Richard_Scope Posts: 3,836 Cerebral Palsy Network

    @Lapin3. Will. please keep us updated.

  • Mary_Scope
    Mary_Scope Posts: 2,910 Scope Online Community Children and Family Specialists

    Hi @Lapin3

    This sounds like a very difficult situation and it's very understandable why you're feeling concerned and annoyed. You're trying to advocate for a vulnerable baby but the system is making it very challenging!

    If you haven't already then it can be helpful to document everything to do with Baby R's health. Keep a detailed log of every vacant episode and spasm you see including date/time/duration/specific symptoms etc.

    If you feel like the baby is being denied proper care, you can discuss with the social worker about filing a formal complaint or contact PALS

    You are definitely doing everything you can to advocate for this baby! Please let us know what happens next.

  • Lapin3
    Lapin3 Online Community Member Posts: 3 Listener

    pALS is a great idea! If I get get the 3 night stay at children’s hospital documented properly in discharge letter, then the referral to community peads team can happen . Thanks

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