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Ageing with CP and twice being rejected for higher rate mobility

2cats252cats25 Member Posts: 4 Listener
edited December 2019 in PIP, DLA and AA
Hi everyone,
I'm 60 and have had CP ( Left sided Hemiplegia) since infancy after a stroke. I have no fine motor skills in my left hand and suffer Arthritis in both hips, as well as major problems with blood circulation in my left foot/leg. My right side is overused and I have Arthritis in my right thumb/hand, as well as major pain in my arms/ neck and left shoulder. I lost my mobility car in the transition from DLA to PIP and my health has nosedived as a result. I have been rejected twice for high rate mobility of PIP by DWP because of the 20m walking rule. I have difficulty using a walking stick because of Arthritis in my right hand (unable to use it with my left hand). DWP will not accept the problems I have in mobilising repeatedly, safely etc. I have to push myself because I'm dependent on taxis and buses. I'm afraid when I'm outside, it's so exhausting. I'm afraid of uneven pavements, passers-by etc, as I fear I'll fall flat on my face as I won't be able to save myself with my hands.
I've had a few major falls indoors and have taken to my bed for days. I live alone and now worry about the future. Social services acknowledge my need for help but nothing happens because of funding etc.

Any ideas on how I can stay mentally healthy while dealing with bureaucracy?? I really am starting to feel the physical effects of ageing but acknowledge that limited funds must go to the most needy. I do have someone I could nominate as a driver if HR PIP awarded, but they are not available to help me every day. After a lifetime of looking at possibilities in my life, my limitations are looming large and it's scary. Any coping tips would be welcome.

Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @2cats25   Pleased to meet you welcome.

    Thank you for joining and sharing.

    I am one of the team of community champions.

    Please may I suggest speaking to your local wellbeing community health unit. Under your local council.

    They can advise on diet, nutrition and look at a programme to suit you.  Often have lifestyle courses and lots of health ones to use for those who have a need.

    I used them regarding my own health issues.

    Also look at AGEUK. website.

    https://www.ageuk.org.uk.

    Informative website lots of information.

    We have a CP member of the team.

    @Richard_Scope hope he can suggest anything else.

    I am sure he will be in touch.

    Please take care.

    @thespiceman  






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  • Richard_ScopeRichard_Scope Posts: 2,719

    Scope community team

    Hi @2cats25
    It's good to meet you and I'm sorry to read that you are going through such a tough time. We are here as a community to listen and support you. I live with quadriplegic CP and use a wheelchair, I can also vouch for how my mobility has changed as I have gotten older.
    Have you considered using a mobility aid like a scooter or powerchair? I know it's not ideal but it is a good option to have as a backup to make you feel safer when out and about.
    Are you going to appeal their decision again?
     
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • 2cats252cats25 Member Posts: 4 Listener
    Hi Richard, Thanks for getting back to me.
    I'm considering an appeal, but in all honesty I don't know how else I can explain my problems with balance to DWP. They don't acknowledge that people use their arms to help with balance, never mind understanding the pain and fatigue of walking with spasticity in feet/legs. I haven't researched getting a scooter. I fear I might lose whatever mobility I have. Also, because of the weakness in both hands/arms, I wouldn't be able to get a scooter over the extra steps the council put outside my house. The judge at my last PIP tribunal was harsh. He wouldn't let me explain anything. He wanted instant, speedy concise answers, as if he was trying to catch me out. I don't want to go through that again, I found it degrading. I believed CP was on DWP 'severe conditions' list. They must have some idea how it impacts on the ageing process. I wonder how many people have seen a decline in their health after being awarded 10 points for mobility! Can DWP still decide to reduce my benefit, even though their reply to my MR request says they will pay it for the next 3 years?
  • Richard_ScopeRichard_Scope Posts: 2,719

    Scope community team

    Hi @2cats25
    I don't think they can reduce your amount once they have agreed on it. However, I will move your post to our PIP discussions where hopefully, people who have experienced similar can offer their advice.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @2cats25, how are you getting on? :)
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  • 2cats252cats25 Member Posts: 4 Listener
    Hi Chloe, 

    I'm feeling better thank you. I have submitted an appeal with more details of my start/stop walking and the effects of walking on the rest of my body (fatigue, breathlessness etc). Hopefully I will get a fair hearing this time. Still no progress from social services but they say they're on the case. Fingers crossed. 


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