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  • Jacquij
    replied
    I get 1 hr each morning to help me get up, meds breakfast etc from an agency social care put in place, and 8 hrs to support me to go out for appointments access the community, which I have direct payment for, although I will now be a self funder. My husband has just been awarded 8 hrs a week as a carer which is not means tested so we can have someone help me go bed, so he can have an early night or to stay with me when he goes for his own health appointments, which will be via direct payments.

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  • kd1
    replied
    Hi Ellie,

    SDS is what I already get. But I'll check out the site, so thanks for that.We don't have much energy to spare for battles, do we?

    Kate.

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  • Mary C
    replied
    Hi, I don't need carers just yet but in my job as a hospital social worker I used to try and work out what help people needed .Its tricky as those with savings over £23.250 had to pay for all of their care package (until their money dropped below that level) Those will savings under £23,250 underwent a financial assessment to work out how much they needed to contribute to their package of care. Also their were a few people who met criteria for Continuing health care funding whereby its not means tested and the person doesn't pay towards their care package at all. The criteria is tough(Google it) and very few qualified. You have to demonstrate you have " an unpredictable and complex primary health care need) to get it awarded. If Going via Social Services there should be an assessment and agreed support plan and there are people who have many hours a week of carers if deemed essential. Whichever way its funded there are ongoing reviews. Of Course Social services route is seen as a service of last resort as if family members or the voluntary sector can do some input that needs considering. The needs as we know with MND change so people can request a review of their situation.
    IT IS COMPLEX.Hope it goes well to get the care you need.Best Wishes.Mary

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  • Bexxy
    replied
    Wow Ellie, that seems a massive amount compared to what we have. Think I will increase it to 5x1hr though so we have the morning call every week day.

    oh Kate that’s not good. I hope it’s not the case. I am from Scotland although I live in the south east now. I am always hearing how much better the care is in Scotland!

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  • Ellie
    replied
    Originally posted by kd1 View Post
    I've been told by both MND nurse and OT the maximum package I can get eventually will be 4.5 hours a day with two carers. It's alarming.
    That is scary, Kate - what on earth are you supposed to do???

    Have you been in touch with https://www.sdsscotland.org.uk/?fbcl...FTebt6ycBBfFWk

    Love Ellie.

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  • Ellie
    replied
    3 x 2 hour visits per day, all are 'double ups', two carers - morning, lunchtime, late afternoon.

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  • kd1
    replied
    I'm in Scotland - different system - live alone and currently have one carer in the morning for an hour, and one at night for half an hour. The agency is very good, mostly, but has little availability for increasing care rapidly as needs change. And I have to pay the difference between council package and agency fees, which will become considerable. I've been told by both MND nurse and OT the maximum package I can get eventually will be 4.5 hours a day with two carers. It's alarming.

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  • Bexxy
    replied
    Thank you for the response Ellie. Can I ask how many visits you have and what times of day? Just trying to think of different options to see what might work for us.

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  • Ellie
    replied
    Rebecca, I have carers in 38hrs pw, heavily weighted to Monday-Friday, not employed by me but from an agency. Usually I am on my own during the day - husband in work, kids in school - but weekends are more family time, so carers just come in to get me up & showered.

    It usually takes 1h 15 to get me from bed to chair (shower, dress, teeth & meds) by carers who know what they're doing. I am totally dependent.

    The other hours are for lunch, several loo trips, giving meds, pump feed, cleaning equipment, light housework etc.

    It was tough in the early days and I had some awful carers (asked not to return) but overall it has given me life, laughter and frienship, and has allowed my husband to work. It can have sticky moments but have clear guidelines of what is needed and communicate open and honestly from the get go stops issues festering.

    Good luck.

    Love Ellie.

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  • Bexxy
    started a topic Employing carers

    Employing carers

    Hi all, out of interest...how much help do people have in the form of professional carers coming in? We recently started getting carers in but currently only for an hour 3 days a week. They come early and get my husband up in the morning. He is at the stage of not being able to do anything for himself, no limb use, sleeps in a hospital bed with a ventilator, hoists for moving etc. I am interested in what arrangements other people have and how they find it all. Thanks
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