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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
    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

    Comment


      #3
      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

      Comment


        #4
        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 Spinal (hand) Onset.
        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          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.

          Comment


            #6
            Hi CC,

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

            Trying to keep positive, but not always managing.

            Comment


              #7
              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.

              Comment


                #8
                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; 19 August 2019, 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.

                Comment


                  #9
                  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

                  Comment


                    #10
                    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; 20 August 2019, 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.

                    Comment


                      #11
                      Hi Dina

                      I am really sorry that my suggestions yesterday weren't helpful. If it would help, I'm happy to ring your social worker to explain the situation to them and see if we can come up with a solution. If you would like me to then please do feel free to send me a private message on the forum or email me at [email protected].

                      You can of course ring me again on 0808 802 6262. There are two of us covering the phoneline today so if I'm not the one who answers then please just ask my colleague to ask me to give you a call back.

                      Best Wishes

                      Rachel
                      MND Connect Adviser
                      MND Connect
                      Contact us on 0808 802 6262 or at [email protected]

                      Comment


                        #12
                        Hi Dina,

                        So sorry to hear about the situation you are in due to Social Services letting you down very badly.

                        I would have thought under the 'Care Act 2014', the Local Authority can't insist someone takes on the responsibility of arranging their own carers (unless that person has opted to receive 'direct payments' from their personal budget, because they want to arrange the care themselves).

                        Even if I have interpreted the law incorrectly, it would be an unacceptable situation if a Local Authority says 'yes' you do have care needs BUT if you don't have the ability to organise the care yourself, then tough luck, that's your problem!

                        Not everyone has the ability to organise their own carers and not everyone knows someone who can do the organising for them - and I thought that even if someone was 'self funding', the local authority had to offer the service of arranging carers for them, or at least help to find suitable care agencies etc (although, the LA can charge a fee for these services).

                        Sometimes, CHC can be fast-tracked and so it might be worth checking at the meeting on Thursday if your CHC application can be. As CHC is funded by the NHS rather than the Local Authority, hopefully the provision of carers under that scheme is much more efficient!

                        I hope things get sorted out for you quickly and carers are put in place for you very soon.

                        Love,
                        Kayleigh x
                        Last edited by Kayleigh; 20 August 2019, 20:40.

                        Comment


                          #13
                          Hello Dina,

                          I have just read about your predicament and like others I am appalled at how the system is failing to meet your needs. I hope the powers that be can fast track your application for CHC.

                          By all means contact your MP but don’t expect immediate action. In my area we had a specialist neurological nurse who’s position was made redundant and several people with MND complained. The nurse would visit at home and assess the patient needs with prompt action. The MP wrote to the CEO of the regional health authority and following 3 letters confirming their investigation and 15 months later, the original decision to cease the role stands.

                          I post below a link to NICE which may help when you argue your rights.

                          https://www.nice.org.uk/guidance/ng4...ciplinary-team

                          Hugs and best wishes,

                          Barry x
                          I’m going to do this even if it kills me!

                          Comment


                            #14
                            Hi Dina,

                            Like others, I am shocked at the lack of carers for you. It is totally unacceptable and extremely worrying, to say the least. You must feel so distressed, vulnerable and anxious. I am also very sorry about your fast progression at the moment.

                            I really hope your application for CHC is fast tracked and you get some answers to this awful situation.

                            Sending you hugs and thinking of you,
                            Love Debbie x

                            Comment


                              #15
                              Hi Dina,

                              This is appalling - I am so sorry. We have quite enough to cope with - physical challenges and psychological ones - without the stress of feeling abandoned when your need for help is acute. I do hope one of the lines suggested pans out.
                              Kate

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