Hi
I am worried as my son turns 16 in October and the dreaded PIP forms will be heading out to fill in etc.
I want to be his appointee as his condition is rare in a child and he has V bed memory problems and cognitive issues, he has had MS for 10 years, it’s progressing and he has had cognitive and memory testing done twice in the past 3 years and well it’s not good and when he’s ever asked by his neurologist at appointments how are things all he says is”fine” and wants to go. He knows they (DWP) are sending someone out tomorrow, he’s not understanding much of why they are now expecting him to apply and talk to them after he’s 16, he just says ok and can he just say hi and go back to his room?
Any tips on what I can say to who they send out to let them allow me to be his appointee?
As I said my son was diagnosed 10 years ago and we/he has always been under neurologists at a well known city children’s hospital as his condition is rare in children, his neurologist isn’t transferring my son to an adult neurologist/hospital until he’s at least 18, even then it’s getting done slowly and I’ve to be there until my son until they see if he can ever talk about his symptoms getting worse or new ones happening.
I’m really worried about tomorrow, is there anyone that can give me advise so the guy who comes understands my son isn’t able to represent himself, it upsets me so much as this person doesn’t know my child, doesn’t know the hell hes been through regarding his MS and his future with MS, sorry to sound nasty but a mother is protective of her child but a mother who has a child with a long term progressive illness is as protective as you can get and it’s upsetting me so much that they think over night on his 16th birthday he’s an adult like any “normal” 16 year old, well he’s not going to be.
Thanks for any replies
The way I’m feeling when I open the door I’m going to burst of crying and tell the guy to go and learn about childhood MS then come back!!!
I am worried as my son turns 16 in October and the dreaded PIP forms will be heading out to fill in etc.
I want to be his appointee as his condition is rare in a child and he has V bed memory problems and cognitive issues, he has had MS for 10 years, it’s progressing and he has had cognitive and memory testing done twice in the past 3 years and well it’s not good and when he’s ever asked by his neurologist at appointments how are things all he says is”fine” and wants to go. He knows they (DWP) are sending someone out tomorrow, he’s not understanding much of why they are now expecting him to apply and talk to them after he’s 16, he just says ok and can he just say hi and go back to his room?
Any tips on what I can say to who they send out to let them allow me to be his appointee?
As I said my son was diagnosed 10 years ago and we/he has always been under neurologists at a well known city children’s hospital as his condition is rare in children, his neurologist isn’t transferring my son to an adult neurologist/hospital until he’s at least 18, even then it’s getting done slowly and I’ve to be there until my son until they see if he can ever talk about his symptoms getting worse or new ones happening.
I’m really worried about tomorrow, is there anyone that can give me advise so the guy who comes understands my son isn’t able to represent himself, it upsets me so much as this person doesn’t know my child, doesn’t know the hell hes been through regarding his MS and his future with MS, sorry to sound nasty but a mother is protective of her child but a mother who has a child with a long term progressive illness is as protective as you can get and it’s upsetting me so much that they think over night on his 16th birthday he’s an adult like any “normal” 16 year old, well he’s not going to be.
Thanks for any replies
The way I’m feeling when I open the door I’m going to burst of crying and tell the guy to go and learn about childhood MS then come back!!!