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Thread: Duty of care?

  1. #1
    Forum Member Gillette's Avatar
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    Duty of care?

    This afternoon, social services kindly informed me that they have suddenly decided to leave me to try and sort out my own care package! They say they cannot find an agency because the care package is so big. Obviously they think I am a miracle worker! How am I supposed to manage, when I don't know where to start, when they have all the experience and cannot manage?

    I am angry, upset, bewildered, incredulous and lots of other things besides.

    I have been without any carers since leaving hospital on 06 August. My MND has been galloping along because of stress and my partner is struggling to cope. He has serious health issues of his own which his neurologist is investigating.

    I thought that Adult Care Services had a duty of care to vulnerable clients (I will not use the obnoxious term 'service user')? Have I got that wrong?
    Dina


    Trying to keep positive, but not always managing.

  2. #2
    Dina

    That's shocking! Terrible treatment!

    No wonder you're angry - and everything else.

    Apart from a huge electronic hug, I can't offer any practical advice. My contact with social services has been extremely limited so far.

    But you CANNOT be left to do this alone. You need to mobilise everyone you can: GP, MND nurses and I would hope the MNDA if only for advice about where else to go.

    I am so, so sorry to hear this!

    Doug x

  3. #3
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    Hi Dina

    Sorry to hear the situation you are finding yourself in. That's just awful and so unacceptable. Can you contact this MNDA Association ? I had thought they were patient advocates for those living with this illness ? I sincerely hope they can help you sort this out, and bring in the care you need.

    Wishing you the best
    CC xox
    .

  4. #4
    Forum Member Ellie's Avatar
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    So sorry for your horrific treatment Dina - simply OUTRAGEOUS

    Social Services have a statutory obligation to protect vulnerable adults.

    You should probably contact MND Connect in the morning to seek their advice but in the meantime, think about....

    Could you appeal to the person above the Jobsworth who dumped you?
    Have you a Social Worker?
    Are you linked to a hospice whose Social Worker can help you? Actually, if you aren't linked to a hospice, it's a good idea to do so.

    I'm sorry you're dealing with this on top of your partner's illness.

    Big hug,

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #5
    Forum Member Gillette's Avatar
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    Hi Doug,

    Thank you for your support. Hugs are always welcome. I did try ringing MND Connect but they couldn't come up with any suggestions.
    Dina


    Trying to keep positive, but not always managing.

  6. #6
    Forum Member Gillette's Avatar
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    Hi CC,

    Thank you for your support. I did try MND Connect but without success.
    Dina


    Trying to keep positive, but not always managing.

  7. #7
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Ellie View Post
    Social Services have a statutory obligation to protect vulnerable adults.
    Could you appeal to the person above the Jobsworth who dumped you?
    Have you a Social Worker?
    Are you linked to a hospice whose Social Worker can help you? Actually, if you aren't linked to a hospice, it's a good idea to do so.
    Love Ellie.
    Hi Ellie,

    Thank you. The jobsworth who dumped was my social worker!!! I have had contact with the hospice but not with their social worker. One of their nurses is due to visit me on Thursday, together with my OT, so I should be able to discuss the situation with them. I shall also enquire about CHC funding as I have deteriorated considerably over the past three weeks so may be eligible.
    Dina


    Trying to keep positive, but not always managing.

  8. #8
    Forum Member Lynne K's Avatar
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    Good luck with getting CHC Dina. Only just read about that. I'd do an official complaint to Social Services. Get in touch with the local MP too. Put pressure on them. They don't like bad publicity and those that shout loudest tend to be heard. Very insensitive (to say the least) of them to dump you when there's no healthy adult available to you to take over care even on a temporary basis. Lynne
    Last edited by Lynne K; 19th August 2019 at 22:59.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  9. #9
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    Hi Dina

    Not sure if your political system is similar to ours, but do you have a congressmen, or senator in the district you live that you can reach out too?

    My husband was being denied benefits, and he contacted our congressmen who was able to cut through red tape at the incompetency of the system denying him it, and was very successful.

    Politicians have a duty to listen to the concerns of their constituents, and is their job to assist, and help as needed.

    Be relentless don't stop until you have all your entitled too, if you can't do it maybe you have a family member or close friend who can be an advocate.

    CCxox
    .

  10. #10
    Forum Member Lynne K's Avatar
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    Hi CC, Dina lives near to me in the UK. No Senators or Congressmen. I advised her to contact our local MP (Member of Parliament). We have local Counsellors too but MPs have higher status. Lynne
    Last edited by Lynne K; 20th August 2019 at 08:56.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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