Cerebral Palsy
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Accommodation for my sister

bekkibekki Member Posts: 5 Listener
edited June 2018 in Cerebral Palsy
My twin sister is 36 & has cerebral palsy and still living with my parents. My parents are 63 & 65 & are winding down from farming after doing most of their lives. When we were 14 our older brother was hit by a car & devastatingly to us all he died. I know everyone has difficult times but I feel my parents deserve to be able to go on holiday and not long before retirement they don't want the worry of where my sister is going to live. They don't want to be in a situation where if they did she will just get put anywhere. They have been trying to get help from ss but have been utterly useless with her case being passed from pillar to post & nobody fighting for her. We have found somewhere that she is happy with to live but in a different county to be near myself & younger brother so that my parents have a bit more freedom to travel & if anything were to happen to them. We have been trying to get ss to take a look at the place to try & get funding but refused to look. They suggested somewhere in local area so after going there & finding narrow corridors & doorframes  & no space to turn corner into bathroom or room under sink for wheelchair to wash up plus place was filthy & place not registered Care Quality Commision & staff didn't seem to care there was no way she could go there. Since that's been said we haven't heard anything -apart from the social worker has moved her case to another sw. They keep saying they will help but NEVER do. Everything is such a battle with them. I really feel time is running out with my parents age. They used to be very fit healthy people but my mum keeps having falls & my dad is weaker & has so many aches & pains & I don't want them to have this stress nor do I want my sister to feel like a burden. Any advice on how we can help my sister's situation would be massively appreciated.

Replies

  • bekkibekki Member Posts: 5 Listener
    Just realised I may have put in wrong group! 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,257 Scope community team
    Hi @bekki
    Good to meet you and thanks for your post.
    Just to clarify, you have found a place where your sister is happy to live but this is in another country? May I ask about your sister's mobility level?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • atlas46atlas46 Community champion Posts: 827 Pioneering
    Hi

    I was in similar position with my brother in law.

    Being led a merry go round by social services, best thing I did was getting his MP involved.

    They soon changed their tune.

    Give it a try.

    If you are not happy about anything, do not accept it, otherwise you will be ignored.

    Good luck.

    Best wishes
  • bekkibekki Member Posts: 5 Listener
    Thank you @Richard_Scope. She has Spastic Cerebral Palsy so is in need of full time care. I could go on and on about the problems my sister & parents have gone through with SS about various things & are just feeling so tired & worn with it all. They have tried to say that does she really need full time care?  My parents have explained to them & its so obvious she does as she cant even take care of her personal needs herself & uses a hoist or rather her carer does. She has a carer 5 days a week currently at my parents home for about 8 hours a day but my parents care for her evenings & weekends. She found somewhere in another county (not country) about 1hr 15 mins away. 

    @atlas46 thanks for the advice. Will pass it on 🙂
  • bekkibekki Member Posts: 5 Listener
    The lady that assessed my sister was meant to visit this place but now today she has said she is moving the case onto someone else who wi no doubt want to assess her again which will take 3 weeks to set up then her paperwork transferred which will take a couple if weeks before that and will keep being dragged on with no one doing anything as this always happens. This place will have a space for her by end of year but I fear the chance will pass as ss haven't pulled their finger out!
  • Richard_ScopeRichard_Scope Administrator Posts: 2,257 Scope community team
    Hi @bekki
    It all sounds incredibly frustrating for your family. I would echo the advice given by @atlas46. Also, it wouldn't hurt to get the local press involved. I could look for local support groups for you as well. What area of the U.K. is your sister currently in?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • bekkibekki Member Posts: 5 Listener
    Thank you @Richard_Scope. Over the weekend I have written a letter to the local MP as advised by @atlas46. Fingers crossed something positive comes out of this! ☺
  • Richard_ScopeRichard_Scope Administrator Posts: 2,257 Scope community team
    Hi @bekki
    We're always happy to help as much as possible. 

    Stay in touch and keep us updated if you can.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • atlas46atlas46 Community champion Posts: 827 Pioneering
    Hi @bekki

    Just another thought.

    I got an advocate for my brother in law, who was very helpful, over and over again.

    Give carer UK a ring tel 0808 808 7777, Mon Tues 10 am - 4 pm.

    I will tag this for @Richard_Scope, to see if he has any ideas about how to get an advocate.

    Good luck.
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