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    Finding CHC providers

    Hi yes got the full CHC last week but who & how do we find a provider as we want to manage it ourselves ?

    #2
    Hi
    Olicana
    Forum Member
    Olicana the CCG should source care providers/agencies for you. They should support you if you choose a personal health budget. There should be a named link person. ๐Ÿ‘๐Ÿป
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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      #3
      LindaB
      Forum Member
      LindaB
      Mary C
      Forum Member
      Mary C I have to say that it's great to have ex Social Workers on the forum who readily give advice ๐Ÿ‘๐Ÿ‘
      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      โ€‹

      Comment


        #4
        [email protected]
        Linda B has given you the guidance about CHC question you asked.I suggest you ringCHC office after bank holiday and get a name, contact details of who is going to support you.

        You need to know their process and how they intend to keep you fully informed.You would hope they want to discuss the care needed, how they source providers including how to locate providers recent inspection reports.

        You need to ensure you are kept fully informed and that the care provider meets you both pre agreeing any care .

        Hope it goes well for you.
        Best wishes
        Mary

        Comment


          #5
          Hello Olicana

          If you get NHS Continuing Healthcare (CHC) funding you should be supported by a CHC co-ordinator or case manager, to plan the ongoing care. They will discuss with you (or your representative) what your preferences are. If your care will be delivered at home, you may be able to receive your CHC as a personal health budget.

          More information on NHS Continuing Healthcare (CHC) and Personal Health Budgets can be found in the MND Information sheets at https://www.mndassociation.org/app/u...Healthcare.pdf and https://www.mndassociation.org/app/u...-budgets-1.pdf

          Kind Regards
          Andrea
          MND Connect
          Contact us on 0808 802 6262 or at [email protected]

          Comment


            #6
            MNDConnect
            Forum Moderator
            MNDConnect hi Iโ€™ve just been turned down for CHC but they agreed that I need support care morning & night and showering, so I have to fill a finance form in, and itโ€™s very long form I donโ€™t understand most of it and even having trouble turning the pages ๐Ÿคฆ๐Ÿผโ€โ™€๏ธ I thought if you had a ds1500 you didnโ€™t have to fill these long forms out ๐Ÿคทโ€โ™€๏ธ Itโ€™s all too much stress. Janette x
            Janette x

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              #7
              My CHC was arranged by my angel at the council run community neurology department. I didn't know what CHC was before I was told I had got it. ๐Ÿ“ƒ๐Ÿ‘€๐Ÿ‘๐Ÿ˜xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

              Comment


                #8
                Originally posted by matthew55 View Post
                My CHC was arranged by my angel at the council run community neurology department. I didn't know what CHC was before I was told I had got it. ๐Ÿ“ƒ๐Ÿ‘€๐Ÿ‘๐Ÿ˜xx
                Glad you got your funding ๐Ÿ‘ thatโ€™s probably because you live on your own, I have Phil but heโ€™s not well himself now xx
                Janette x

                Comment


                  #9
                  Nettie
                  Forum Member
                  Nettie you can appeal the CHC outcome if you disagree.

                  All care provided by social services is unfortunately means tested....I'd always advise you need a social worker to support you through forms and liaise with other professionals on your behalf.

                  If the CCG are not providing your care then you need a social services assessment...Community Care Act assessment....to establish a robust support plan.

                  A social worker can also help you appeal the CHC decision๐Ÿ‘๐Ÿปxx
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

                  Comment


                    #10
                    Dear Nettie,

                    I am sorry to hear that you have been refused CHC funding. You can make an appeal if you disagree with their decision. I would suggest that you contact an organisation who can provide you with information on how to appeal a decision. Beacon will give you 90 mins free advice, which is funded by NHS England, their number is 0345 548 0300
                    It can also help, if you appeal, to submit written evidence and support from your health professionals. This helps to build a picture of how your condition is affecting you.
                    Although the DS1500 can help to fast track benefits, unfortunately it doesn't help with a financial assessment from your local authority.
                    Do you have someone who can help you complete the forms?
                    If you have any questions, please do not hesitate to contact us
                    Kind regards
                    Jacqui Anderson
                    Senior MND Connect Adviser
                    MND Connect
                    Contact us on 0808 802 6262 or at [email protected]

                    Comment


                      #11
                      Yes they said we can reapply when my needs are greater. And we already did an assessment when we applied for DFG for adaptations with the same council I donโ€™t see why we have to do it again, oh well I suppose I better crack on ๐Ÿคทโ€โ™€๏ธ
                      Thank you,will try and find somebody to help us. Janette x
                      Janette x

                      Comment


                        #12
                        Nettie
                        Forum Member
                        Nettie
                        Sounds like care will be arranged via social services which is means tested.
                        The forms are lengthy but a lot may not be applicable.Itโ€™s basically a form to determine income , expenditure, what assets you own.etc
                        Best wishes
                        Mary x

                        Comment


                          #13
                          Mary C
                          Forum Member
                          Mary C yes I might have another go tomorrow I wasnโ€™t feeling my best this morning ๐Ÿ™ Iโ€™ll see how I go on tomorrow thanks Janette xx
                          Janette x

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                            #14
                            https://www.continuing-healthcare.co...track-guidance

                            We all also need to consider fast track funding....see link. At some point it may apply....I know I'm like a stuck record but you can't beat having a social worker to support through the minefield๐Ÿ˜‡
                            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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