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.
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Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes -
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. -
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, communicated with eye gaze
Sense of humour intact throughout.
Sadly passed away peacefully 2/9/22Comment
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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 comesComment
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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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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 comesComment
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