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This Blogging Life

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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Hey @Lucy411 sorry to hear about your current situation. I do think it would be a good idea to either write about it on your blog or on Twitter. I think Twitter is the most popular social media platform to hear about other's experiences. If you do share it on Twitter, please let me know and I will do what I can in sharing to my followers too. :)
    Disability Gamechanger - 2019
  • Lucy411
    Lucy411 Scope Member Posts: 74 Courageous
    I think its a good idea to blog about it because I think alot of people  have the same problem  with funding  I had funding for 40 hrs a week  which social services said I needed  but didn't need that much I  dropped my hours the 2nd year  and finished haveing care on the third year 

    I live in Wales and found when my mum came to stay with me for three months the help they wanted to put in was incredible  but my brother is still fighting to get care for her in  wolverhampton  so is paying for private care  

    I expect  you have already had an occupational  therapy assessment   to see how many hours of care you need  social services try and cut back on care  on one of the calls I had as a carer in the community I had 20mins to prepare dinner and fo personal care  thats why I did PA work in the end 

    The only suggestion I have if you need  more hours is ask social services  for a review of your csre hours which you have a right to fo 

    Blogging  about  it is a good idea though 
    Constant case open for 2years plus! Never heard of anyone getting more than they need. That's fantastic though :)
  • Lucy411
    Lucy411 Scope Member Posts: 74 Courageous
    Ami2301 said:
    Hey @Lucy411 sorry to hear about your current situation. I do think it would be a good idea to either write about it on your blog or on Twitter. I think Twitter is the most popular social media platform to hear about other's experiences. If you do share it on Twitter, please let me know and I will do what I can in sharing to my followers too. :)

    Thanks, I'll write a blog post and share via Twitter, not sure what angel to write it from to be useful to others though.
  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Hmm ? if it was me writing the post, I would start by sharing my experiences with employing a PA, then go on to say about how a PA has/would benefit my independence. Then briefly outline your care needs/aspects you need assistance with and mention youre actively seeking a new PA (or however many you need)

    Then you can finish by asking your readers to share their experiences and if they could kindly recommend anyone/company/agency. I'd also use this question on Twitter, at the end of you tweet. My reason is because there may be some people who don't have a spare 5 or so minutes to read your blog post but if you ask a question instead, they would be more likely to answer.

    Hope this helps :)
    Disability Gamechanger - 2019
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    How many hours do you get now  40 hrs a week was to much  for me becsuse I went back to work  my pa was still doing my csre and  tskeing  me to work I told them to give the hours to some  one who needed  the hours 

    Social services get  it so wrong  sometimes  and my pa was getting money  for hours he hadnt work  which I didn't think was fair 

    Hope you get something sorted out  the  other thing you could do is complain to the  CIW thst you don't think your getting the hours you need  you can also get in touch with disability rights 


  • Lucy411
    Lucy411 Scope Member Posts: 74 Courageous
    Ami2301 said:
    Hmm ? if it was me writing the post, I would start by sharing my experiences with employing a PA, then go on to say about how a PA has/would benefit my independence. Then briefly outline your care needs/aspects you need assistance with and mention youre actively seeking a new PA (or however many you need)

    Then you can finish by asking your readers to share their experiences and if they could kindly recommend anyone/company/agency. I'd also use this question on Twitter, at the end of you tweet. My reason is because there may be some people who don't have a spare 5 or so minutes to read your blog post but if you ask a question instead, they would be more likely to answer.

    Hope this helps :)

    Good point @Ami2301, thank you for the advice.
  • Lucy411
    Lucy411 Scope Member Posts: 74 Courageous
    How many hours do you get now  40 hrs a week was to much  for me becsuse I went back to work  my pa was still doing my csre and  tskeing  me to work I told them to give the hours to some  one who needed  the hours 

    Social services get  it so wrong  sometimes  and my pa was getting money  for hours he hadnt work  which I didn't think was fair 

    Hope you get something sorted out  the  other thing you could do is complain to the  CIW thst you don't think your getting the hours you need  you can also get in touch with disability rights 



    I have contacted people and everything is in progress, thanks @lisathomas50. I get more than 40 hours but less then what I need without my parents filling in. I'm pushing for 24hr.
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    Sorry I couldn't help and hope you get what you need where I live they have a group of voluntary carers  who fill in the hours you cant get from social services 

    I dont need carers all the time very rarely do I need help now but if I am haveing a bad with my lupus I can phone them and  they come and help me  I donate to this group  because I want to  but it was started up three years ago by myself and two other carers  becsuse of problems like yourself  are haveing

    I no longer do care  I stopped at the beging of the year because I had corona virus  I havent worked since then I dont know if you have got that sort of thing where you live ? 
  • Lucy411
    Lucy411 Scope Member Posts: 74 Courageous
    Sorry I couldn't help and hope you get what you need where I live they have a group of voluntary carers  who fill in the hours you cant get from social services 

    I dont need carers all the time very rarely do I need help now but if I am haveing a bad with my lupus I can phone them and  they come and help me  I donate to this group  because I want to  but it was started up three years ago by myself and two other carers  becsuse of problems like yourself  are haveing

    I no longer do care  I stopped at the beging of the year because I had corona virus  I havent worked since then I dont know if you have got that sort of thing where you live ? 

    @lisathomas50 no problem at all. I appreciate your suggestions. What is the voluntary service called, please?
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    @Lucy411 if you go on line and type in voluntary services  for your area it should tell you I live in Wales and only know what is in my area  of wales 

    I have four organisations here hoyle and voluntary care services  and help u care and community voluntary help  I have had to have help today for a few hours  your doctor may also know of some where  different areas have different things  and different types of help  your local council may also know 




  • Lucy411
    Lucy411 Scope Member Posts: 74 Courageous
    @Lucy411 if you go on line and type in voluntary services  for your area it should tell you I live in Wales and only know what is in my area  of wales 

    I have four organisations here hoyle and voluntary care services  and help u care and community voluntary help  I have had to have help today for a few hours  your doctor may also know of some where  different areas have different things  and different types of help  your local council may also know 




    @lisathomas50 thanks, I'll have a search. This has got a bit off topic but I think it's given me a new post idea :).
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    Glad I could help even if its  in a small  way  other than that I don't know  my brother  lives in the west Midlands and he got in touch with a befriending agency to help him with my mum that is voluntary  and they do quite a bit fir my mum but it depends what  your needs are 

    If I think of something else I will let you know you can advertise for voluntary  help  if uou felt comfortable doing that  thats another option 
  • Lucy411
    Lucy411 Scope Member Posts: 74 Courageous
    Glad I could help even if its  in a small  way  other than that I don't know  my brother  lives in the west Midlands and he got in touch with a befriending agency to help him with my mum that is voluntary  and they do quite a bit fir my mum but it depends what  your needs are 

    If I think of something else I will let you know you can advertise for voluntary  help  if uou felt comfortable doing that  thats another option 

    It's personal care so no, but thanks.
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @Lucy411 Thanks for sharing, I'll give that a read :)  How are you doing?  
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  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    @Lucy411 I read your blogs you shared they are very good  best of luck with everything  
  • Lucy411
    Lucy411 Scope Member Posts: 74 Courageous
    edited January 2021
    @Lucy411 I read your blogs you shared they are very good  best of luck with everything  

    Thank you, Hope you're well?
  • Lucy411
    Lucy411 Scope Member Posts: 74 Courageous
    @Lucy411 Thanks for sharing, I'll give that a read :)  How are you doing?  

    Thanks, hope you like it. Things are tough but I'm putting my best wheel forward. Take care.
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
    @Lucy411 I am about as good as I can be like most people thanks for asking ? 

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