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Respite care MNDA website

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    Respite care MNDA website

    My local hospice does not provide respite care so i tried looking on the MNDA website. I do not find the website easy to use and didn’t find anything useful. Any ideas people how to find suitable care? My husband will need a break at some point.
    Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

    #2
    Ask social services. They will do a financial assessment and decide on what amount of care and respite you can have. Though it does vary area to area.
    when i can think of something profound i will update this.

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      #3
      Coincidentally I have had a discussion with the lead CHC person from the CCG today and she asked if I wanted respite support.

      Keen not to refuse anything thats offered, given the difficulties experienced on here, I asked how much and she said 4 x weekly hours initially and if I need more to just ask.

      So hubby gets 42 hrs care per week x 4 = 168 hours of respite care to use as I wish (within reason) added to the budget and automatically paid into my personal health budget account, ( which is the same account I had as a direct payment when social care funded).


      Never got it from social services, made such a difference being CHC.
      Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

      Respiratory and blood gases still within normal range.

      No speech but sense of humour still fully intact.

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        #4
        What is CHC please? Thanks for advice. I have 7 x 45 minutes per day of care which isn’t much. Husband does all the rest. Hospice arranged the care and i don’t know who pays for it but it isn’t us.
        Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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          #5
          Originally posted by Hakuna View Post
          What is CHC please?
          Continuing Healthcare - CHC - is NHS funded care, based on need and is not means tested. You can read about it here xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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            #6
            Thank you. Must be what i get organised by the hospice social worker.
            Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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