Hi my name is Hope. I’m struggling with my cerebral palsy

h_harfield97

Hey my name is Hope I’m 24 and I have cerebral palsy. Arthritis and epilepsy. 

I’m struggling with my cerebral palsy at the moment and I seem to be getting no where with the doctors, I’ve spoken to my GP and he has prescribed me diazepam to help with my muscle spasms in the short term however neither my GP or rheumatologist know who looks after cerebral palsy in adult services so I was just wondering if anyone knows who I can turn to to help look after my cerebral palsy, no one has been assigned to take care of the cerebral palsy side of things since I left paediatrics. Many thanks 

janer1967

Hi and welcome to the community 

I will tag in our scope cp adviser who will be better to help you 

@Richard_Scope

h_harfield97

Thank you so much that would be really helpful ?

Richard_Scope

Hi @h_harfield97
It's great to meet you. I have CP too and you are most certainly not alone in your experiences with medical professionals and their lack of knowledge of CP after leaving paediatric services. I will include some information here that you can discuss with your G.P.

Adult Cerebral Palsy Care Pathway (your G.P. should know about this)

• Managing cerebral palsy in people aged 25 or over - NICE Pathways
• RJAH - Site Search
• Adult Cerebral Palsy : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk)

Fatigue

• Cerebral palsy and fatigue | Disability charity Scope UK
• What's Spoon Theory? - The Brain Charity
• Ageing and cerebral palsy | Disability charity Scope UK

If you need any further support with all or any of this please let me know. 

WestHam06

Hi @h_harfield97, 
                             Welcome to the community and thank you for joining us. How are you? I'm sorry to read of the difficulty you are facing from a medical perspective, though sadly as @Richard_Scope has said, you are not alone in these experiences. It can be difficult to find a medical professional who really understands CP and it is certainly concerning that once a person turns 18 and is discharged from paediatrics, that there is no clear path. It's something that needs to change and I hope that the information @Richard_Scope has been useful. Please, if you have any questions, do ask and we will do our best to answer. Thank you. 

WestHam06

Hi @h_harfield97, 
                              How are you? How are things going from a medical perspective? Thank you.