Hi, my name is joanna319 Needing help... — Scope | Disability forum
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Hi, my name is joanna319 Needing help...

Hi, I am reaching out to anyone out there..I am struggling to cope alone with severe ME, which leaves me more or less confined to the sofa or in bed. I am failing miserably at looking after myself or my home, and despite being awarded 6 hours DP, cannot find any care. I am lonely, frustrated, very depressed and overwhelmed trying to run my life when constantly incapacited. I am trying to find any help to get things sorted before I lose my home, if anyone knows where I can turn to...? 


  • letay57
    letay57 Member Posts: 3 Listener
    Have you tried citizens advice bureau? They can be very helpful. Hope things improve for you soon Joanna.How about your local social services department? They might be able to put you in touch with some care agencies. Hope this helps. 
  • williay
    williay Member Posts: 5 Listener
    Depending on your age there are a number of voluntary agencies who are out there that could help...if you use a computer Google local voluntary agencies in your area and see what they can offer...some examples are befriending services or positive steps run by Red Cross. Good luckx
  • Chris_Alumni
    Chris_Alumni Scope alumni Posts: 689 Pioneering
    Hi Joanna, welcome to the community, and sorry to hear of your difficulties. If you need any advice regarding benefits, please do visit our 'benefits advisors' discussion page. You might also like to give the free Scope helpline a call on 0808 800 3333 (mon-fri, 9am-5pm)
  • Debbie_Scope
    Debbie_Scope Member Posts: 944 Pioneering
    Hi @joanna319,

    Welcome to the community.

    So sorry to hear how you're feeling right now. It can be quite difficult to get the right care in place. Have you considered using an agency to get some cover in place now? It can be difficult to recruit Personal Assistants for such a small amount of hours each week and this is where agencies can be quite handy to fill those gaps. Even if you use them as a temporary measure until you can find something more permanent, it will help take the pressure off a bit. It's also worthwhile registering with an agency in case you need emergency or short notice cover in the future.

    You mention that you need to get help in before you lose your home, can I ask what reason/s it is that you feel you might lose your home? Maybe I can help with some information to assist you.

    Look forward to hearing from you.

    Best wishes
  • joanna319
    joanna319 Member Posts: 5 Connected
    Hi, thanks for replies, have felt so alone. I have reached out to voluntary agencies as suggested. Social Services wont deal as i am under Mental Health services. They did provide care agency in March, but they refused to come back again because of the state of my home. I dont know how someone who needs help with personal care is expected to be able to keep pristine house!?! Since then I have approached 8 agencies, 4 never replied, and 4 visited, promised care package no problem then not contacted. After chasing them they all said couldnt fit into rotas?? Had 1 agency that randomly sends 3 guys who have cleared rubbish but wont provide my hours. So exhausted to go thru process again. As for my home, my ex partner/carer was removed by Domestic Violence after 3 yrs of systematically stealing my life savings that supplemented my disability benefits to live on, with violence and threats.  Been left with debt and not enough income to cover my mortgage or bills. Have seen CAB but now they all calling debts in. At the moment, have £1.23 to my name. Am cashing in pension due by march, just got to survive until then
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
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  • joanna319
    joanna319 Member Posts: 5 Connected
    Thanks, will have to try find someone can cm to me as cannot get out and very ashamed that look so unkempt..not been able to bath or wash hair in months and it is long and matted, and got no clean clothes. I used to be a professional Social Worker, very neat & well presented, cannot believe come to this.
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
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