Community paediatrics rejecting baby with CP
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….
Comments
-
Hi @Lapin3 Welcome to the Community. I have tagged in @Lucy_Scope and @Richard_Scope who both deal with CP questions.
Take care.
1 -
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
1 -
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 .
1 -
@Lapin3. Will. please keep us updated.
0 -
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.
0 -
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
0
