Experience of CP and abandonment by NHS

alanturner

Hi everyone, my name is Alan from Glasgow and I’m the father of Olivia who is 16 years old, and has quadriplegic cp and severe learning disability, Olivia is non verbal and registered blind, the reason I’m on here is because I’m looking for help as since Olivia has turned 16 it seems as if we have been left completely alone to get on with things ourselves, no community health visits, no paediatrician input. Two weeks after her 16th birthday she was admitted into hospital for a chest infection and was in a medical receiving ward full of geriatric patients and the nurses didn’t know how to look after Olivia, it was horrific for her, it left me close to tears, does anyone else have experience of this ???

second question: Olivia’s peg fed and her milk was recently increased going by her weight etc, but she’s put on lots of weight especially round her neck area and I think this is affecting her ability to keep her airway open as we have an sp02 finger probe and it frequently drops depending on her head position, could this be to do with the extra weight she has put on, again,  has anyone else had experience of this , thanks again, Alan

chiarieds

Hi @alanturner - I just wanted to welcome you to this community, altho' I can't offer any specific advice. I hope you understand that such queries would be better answered by a Dr.

I'm very sorry that Olivia, & therefore yourself, have experienced difficulties, to put it mildly, since Olivia has turned 16.

Might you ask your GP? Perhaps they will be in a better position to refer her to appropriate specialists in the adult sector, & look into getting local help too as you need ongoing support for her.

Please do chat here anytime too, & I'll ask @Richard_Scope our CP specialist for his input.

Richard_Scope

Hi, @alanturner
thanks for posting and it's great to have you here on the community. 

I would make contact with your daughter's G.P. as soon as possible to discuss the issues with the finger probe. The transition from paediatric to adult services is wholly inadequate in most parts of the U.K. 

As you guys are in Scotland I would make contact with our friends at Capability Scotland and Bobath Scotland

Chloe_Alumni

Welcome to the community @alanturner. I too have CP and can relate to adult services not being to the same standard as paediatrics. I hope the information Richard has provided will be helpful and please do let us know how you get on.  

WestHam06

Hi @alanturner, 
                          Welcome to the community and thank you for joining us. I am truly sorry to hear of the difficulties your daughter and yourself are facing. I would recommend following the advice provided by @Richard_Scope and contact your GP for help and guidance regarding appropriate services to best support Olivia. I too have Cerebral Palsy and found the transition from child to adult services difficult and I agree with @Richard_Scope when he says I think unfortunately this is the case across much of the United Kingdom. Please do let us know how things go. Thank you.