PIP assessment. Argh. Any positive stories?

Had my sons yesterday. It was terrible. My son gets so scared he doesn’t do them and never has. He is disabled too and has been since birth. Every three years they put us through hell. He’s scared about not getting his blue badge because of not getting PIP and in turn puts me under weeks of stress. He can’t cope with the “brown envelopes” through the post so I have to have them addressed to me so he doesn’t see them.

They asked me what kind of house I had, I said what do you mean, detached? She said yes. How is that relevant? She asked who diagnosed him with autism. I said Dr V who’s from CAMHS and the leading physiologist in the country. The government has years and years of all this information. Hospital letters and diagnoses but still I feel under scrutiny as if I’m making it all up. 

i got off the phone to my son saying that his life is over and he can’t go back to his job (that he works at from his bedroom) and it’s ruined his day and his weekend. He told the women that and i asked him to tell her what would happen to me whilst we wait, he told her that he wouldn’t be able to cope and I could only keep talk to me. Being autistic he will worry and worry and of course will have to talk to me over and over again. I got off the phone and cried. I knew my life would be terrible for weeks now while we wait. My son can’t help but put on me now. They don’t understand this. I tried to tell her but she just said that she understands that. But of course she has no idea what it’s like for the carer of an autistic and disabled person. 

Why if someone has been under the children’s mental health team, couldn’t access mainstream school, went to the Priory Lodge school, had to have support carers, had a PA, went to the transition Mental health team and adult mental health team, was under the fracture unit for all of this childhood, is on morphine, progabaline, anti depressants, ibuprofen and co-codamol and goes to the pain clinic, should be made to feel like rubbish every three years. Why should they have to have a phone call from someone who has no understanding, only to pass that information onto someone else who just looks at it and make a “decision”. The system is broken. 

She asked whether he had taken time off work. I said yes. She said when. I said last year. She want specifics. I couldn’t give her dates. I said she has access to his medical information, she said that they don’t. Why not? If they looked at that they would see how much time he’s had off and how many times I’ve gone to the doctor not coping. I told her that he had been told by his work that if he takes and more time off work he will be “shown the door”. He’s taken that literally so even if he has a bad day he has to work. 

There is so much for people with disabilities have to cope with during their lives but cannot express it enough so someone like this lady so they can truly understand it.

Many of the questions felt like I was being lured into a trap. It was awful .  

I have been his carer for years and even had to get my MP involved when the schools said they could teach him as he was too anxious and would sit under the table. I was told when he was 5 that he will eventually end up in a wheelchair. He’s on crutches the majority of the time and when shopping or trips out he has to go into a wheelchair but it was like she didn’t believe it. There are times he doesn’t use crutches but that’s because he’s had to have loads and loads of painkillers or have alcohol (he’s 25) in order to go out. 

She asked if he goes out. He explained that he does but only goes to places he knows or with people he knows. She asked where does he go. He said the gym. Well that was it! She was on his case making him feel like he can’t go out and try and do some exercise. It was the same with going out with friends, she made him feel like he wasn’t allowed a life. Now he doesn’t want to go out. His world is small enough already because people judge him and frown at him parking in a disabled bay because he looks like a good looking young man. People (elderly) have had a go at him for using lifts so it made him scared to go out, so he goes places he knows or with someone he knows. 

i could go on and on (sorry I’m angry and frustrated)

Someone like the BBC should pick up these stories as I’m sure thousands of genuine disabled people are being put through this every 3 years. The system is terrible and puts genuine disabled people through weeks of hell. 

Had my sons yesterday. It was terrible. My son gets so scared he doesn’t do them and never has. He is disabled too and has been since birth. Every three years they put us through hell. He’s scared about not getting his blue badge because of not getting PIP and in turn puts me under weeks of stress. He can’t cope with the “brown envelopes” through the post so I have to have them addressed to me so he doesn’t see them.

They asked me what kind of house I had, I said what do you mean, detached? She said yes. How is that relevant? She asked who diagnosed him with autism. I said Dr V who’s from CAMHS and the leading physiologist in the country. The government has years and years of all this information. Hospital letters and diagnoses but still I feel under scrutiny as if I’m making it all up. 

i got off the phone to my son saying that his life is over and he can’t go back to his job (that he works at from his bedroom) and it’s ruined his day and his weekend. He told the women that and i asked him to tell her what would happen to me whilst we wait, he told her that he wouldn’t be able to cope and I could only keep talk to me. Being autistic he will worry and worry and of course will have to talk to me over and over again. I got off the phone and cried. I knew my life would be terrible for weeks now while we wait. My son can’t help but put on me now. They don’t understand this. I tried to tell her but she just said that she understands that. But of course she has no idea what it’s like for the carer of an autistic and disabled person. 

Why if someone has been under the children’s mental health team, couldn’t access mainstream school, went to the Priory Lodge school, had to have support carers, had a PA, went to the transition Mental health team and adult mental health team, was under the fracture unit for all of this childhood, is on morphine, progabaline, anti depressants, ibuprofen and co-codamol and goes to the pain clinic, should be made to feel like rubbish every three years. Why should they have to have a phone call from someone who has no understanding, only to pass that information onto someone else who just looks at it and make a “decision”. The system is broken. 

She asked whether he had taken time off work. I said yes. She said when. I said last year. She want specifics. I couldn’t give her dates. I said she has access to his medical information, she said that they don’t. Why not? If they looked at that they would see how much time he’s had off and how many times I’ve gone to the doctor not coping. I told her that he had been told by his work that if he takes and more time off work he will be “shown the door”. He’s taken that literally so even if he has a bad day he has to work. 

There is so much for people with disabilities have to cope with during their lives but cannot express it enough so someone like this lady so they can truly understand it.

Many of the questions felt like I was being lured into a trap. It was awful .  

I have been his carer for years and even had to get my MP involved when the schools said they could teach him as he was too anxious and would sit under the table. I was told when he was 5 that he will eventually end up in a wheelchair. He’s on crutches the majority of the time and when shopping or trips out he has to go into a wheelchair but it was like she didn’t believe it. There are times he doesn’t use crutches but that’s because he’s had to have loads and loads of painkillers or have alcohol (he’s 25) in order to go out. 

She asked if he goes out. He explained that he does but only goes to places he knows or with people he knows. She asked where does he go. He said the gym. Well that was it! She was on his case making him feel like he can’t go out and try and do some exercise. It was the same with going out with friends, she made him feel like he wasn’t allowed a life. Now he doesn’t want to go out. His world is small enough already because people judge him and frown at him parking in a disabled bay because he looks like a good looking young man. People (elderly) have had a go at him for using lifts so it made him scared to go out, so he goes places he knows or with someone he knows. 

i could go on and on (sorry I’m angry and frustrated)

Someone like the BBC should pick up these stories as I’m sure thousands of genuine disabled people are being put through this every 3 years. The system is terrible and puts genuine disabled people through weeks of hell.