CP treatment and equipment help for daughter.

LauraLil

Hello,

Wondering if i can get some advice as I feel im lost in how I can best support my 3 year old daughter with her treatment and equipment needs for her Left side Hemi Cerebral Palsy.

She is currently having NHS physio once ever 6 weeks, sees an Occ Health every 6 months and is on waiting lists for Othotics and surgeon apps.

Its not enough.

I have emailed today to ask Physio about her getting a wheelchair however, he has come back saying NHS wont provide unless she needs it indoors, she knee walks so i would argue she needs indoors when she starts school, or he can support a charity application but I need to know make and models of chairs???

I have no idea where i would find out information such as types of chair.

I asked if she could get botox but apparently its not the done thing on the nhs.

Ive privately bought AFOs at over 1k as so sick of waiting on nhs.

I naively thought once she had a diagnosis we would get some support or guidance on how to source items for her or be given a treatment plan.

I feel like im letting her down as every avenue is stopped or i should know how to provide items, which as a layperson I dont!

Can anyone advise me on how i can find out more so i can help her.

Thank you,

Laura xx

Lucy_Scope

Hi Laura,   

I am sorry to hear you are having difficulty accessing support for your daughter. I think many people in the CP Network feel your frustrations with advocating for care that we need for ourselves, and our loved ones - you are not alone. You are absolutely not letting your daughter down, and we are here to help 😊  

Botox 

Botox is on the NHS (that is one of my spastic management options) and can be used as a management tool for children as well. It may not be suitable for every child, but this can be identified through an assessment.  Here is some more information about Botox on our Scope page. 

Wheelchair  

Your daughter is entitled to an assessment by your local Wheelchair Services your G.P. and Pediatrician should help with this. It is also worth noting that there might be a significant wait for this service.  We have some information about Finding and Buying the Right Wheelchair that might be helpful to you. We also have a Parents of Children with CP Facebook group that you could join to speak directly to other parents. Also, our friends at ActionCP, Pace, and CP England would be good for you to reach out to. 

 I know this can all seem overwhelming and exhausting but you are doing a great job! stay in touch. 

Take care,

Lucy

LauraLil

Thank you Lucy! X