Cerebral Palsy
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Advice about my care situation

TCWTCW Member Posts: 4 Listener
edited April 2019 in Cerebral Palsy
I have just joined. I am seeking advice on what to do about my care situation.

I am an independent 29 year old woman with CP  who reeds 24 hour live in support.. I have an active lifestyle, I am in the process of setting up my own business and I am getting married in July. I basically like to live like any other young woman but I am struggling to find the right support. I have been having live in PAs for the past 10 years and have  mostly been using care agencies. .The problem with care agencies is the fact that they are not catered for young people who have full mental capacity. I have often been sent agency workers who have been trained to  be carers instead of PAs and have not been able to change their mindset. They try to make decisions for me and mother me when all I need is somebody to assist me with physical tasks.

People keep suggesting I go private.  I did employ private PAs for a while but I found it difficult  to manage them and I felt too much at their mercy. I really want to come away from using care agencies and start employing private PAs again but in a way that does not make me vulnerable. I have  been given a fair amount of information in regards to how I can get help finding PAs. The likes of UKCIL and the Disability Resource Centre have been mentioned to me. I was wandering if anyone else had used these and if so, whether they could share their experiences or advise me on what else I could try.

Thanks

Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,736 Disability Gamechanger
    Hi @TCW welcome to the community! 

    I completely understand where you are coming from, I need care 24/7 to help me with physical tasks too. I had such an appalling experience with carers who treated me like yourself as you have mentioned above.

    Unfortunately, I do not know about the services you have mentioned but hopefully someone from our community will know and will be in contact soon.

    Keep us updated and let us know if you have any further questions :)
    Disability Gamechanger - 2019
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    Hi @TCW
    Good to meet you.
    I have heard from a lot of people that their experiences with carers is less than perfect. Scope has some information on Recruiting Personal Assistants. People that I know have used Skills for Care.org.uk it is a good information resource for finding and retaining PAs.

    If, I can help further, please let know.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • TCWTCW Member Posts: 4 Listener
    Thank you for the links, I will check them out. I have started using UKCIL and they put my advert out on Tuesday but I have only had two applicants so far. Does it normally take more than a few days to get more applicants?
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    Hi @TCW
    Sometimes you have to be a bit patient. The ad has only been live for 3 days. I'm sure you will get more applicants :)
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • TCWTCW Member Posts: 4 Listener
    I am being patient but you have to understand my situation. I am with an agency who really don't cater for young people like myself, they are intruding on my privacy and treating me like an invalid. They are also sending different PAs all the time.I am trying to set up my own business and prepare for my wedding which is in July. The agency is being very disruptive  and I  am concerned that they will give me a stranger to assist me at my wedding. Everyday seems to be a struggle  at the moment. I don't need sarcastic messages from people like yourself
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    edited April 2019
    My comments were in no way meant as sarcastic. I completely apologise if they read that way @TCW. What I was trying to say was it can take time to get more applicants. Are the two PAs that have applied not suitable? Have you made a formal complaint to the agency for the disruptive nature of their work practices? 
    I understand that this is a stressful time for you.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • TCWTCW Member Posts: 4 Listener
    I have shortlisted one of the applicants but I am going to wait until after the weekend to see if I get more applicants before I invite them for an interview. I also have another applicant from a site called Eyja who I am interested in. I have spoken to the agency many times about how they work but they do not want to separate me from the rest of their clients who are mainly elderly.  They say that the agency workers are trained to take on more caring roles rather than just assist clients with physical tasks and they cannot just recruit specifically for me.  It is just a losing battle with them to be honest
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    Some of my friends from college hired friends. Is that something you could consider? Things will get better for you. You never know the best person may apply over the weekend.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    Hi @TCW
    Hope you had a good Easter, how is everything going?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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