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  • dkjc2020
    replied
    Hi Lynne K, glad your OT has been a star, it is very disappointing that this is another postcode lottery scenario when anyone with a terminal illness should be treated equally and fairly no matter where they live

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  • Lynne K
    replied
    Strange that your OT won't refer you to wheelchair services DKJ. My OT referred me and gets involved with all of my needs. If she can't get things supplied she contacts the other services in her team. She got in touch with my physio who ordered and brought out to me my 4 wheeled walker a few months ago. They have regular care team meetings where my local Physio, Speach Therapist and OT (Occupational Therapist) attend. I only have to tell important news to one of them and its shared So it looks like it's joined up here, but sadly not in your area. My old and new GP had no experience of MND. So I'm glad that they haven't had any responsibility in my wheelchair, walkers and other gadget ordering. I'd be having to fight for everything. My OT is in touch with the Blue Badge team at the Council too. It was her that got my Blue Badge organised when I had been refused when I applied myself. She is a star. Lynne
    Last edited by Lynne K; 17 March 2019, 21:21.

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  • dkjc2020
    replied
    Hi Terry,

    At the moment no, I am planning for the work in September, regarding the hoists, my OT has stated that as long as they cost less than £1,000 then they would supply free. My OT would not refer me to Wheelchair Services said it was up to my GP, I rang MND Connect for advice about this and they said my OT is probably not the specialist OT who is able to refer so she was technically correct. I can still walk with aids and support as it is currently all in my left leg, but balance is my problem at the moment so planning all this in readiness, the frustration is all the red tape and post code lottery

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  • Terry
    replied
    Hi dkjc,

    Do you need everything soon?

    As others have posted, hoists etc should be provided free separately but it's worth checking out.

    Make sure you have been referred to the wheelchair services as their waiting list is long.

    Love Terry

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  • dkjc2020
    replied
    Hi Ellie,

    Thank you already on it

    Love Darren

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  • Ellie
    replied
    Hi dkjc,

    It's worth seeing if the MNDA will give you a grant - Every Little Helps as the saying goes...

    Love Ellie.

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  • dkjc2020
    replied
    Hi Terry

    Thank you, yes I have contacted my OT regarding shower chair, grab rails, and hopefully a bio bidet toilet and possibly ceiling hoist if they all come under £1,000.00

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  • Terry
    replied
    Hi dkjc;

    Sorry to hear that don't qualify for a grant and other help that is free to some others.

    It doesn't mean you can't get any equipment or small job under £1,000.

    Love Terry

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  • dkjc2020
    replied
    No didn't qualify either just got told I could contribute £140,000.00 ( I wish) and also told no further funding available for major adaptations from my council!!!!

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  • Pinkelle
    replied
    If that was you again terry or cc.... Thankyou very much x

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  • Pinkelle
    replied
    Exactly Terry, but seriously didn't expect anything to be honest as we are all in the same boat!! But thank you so much Xx

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  • Terry
    replied
    Hi Pink;

    I told you that I was tight, every little bit helps.

    Love Terry

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  • Pinkelle
    replied
    !!! Xxx just realised who's donated on my sons just giving page! Thank you so much cc and Terry xx

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  • Pinkelle
    replied
    He has Terry. Also last week a couple of colleagues put on a fundraiser for me as a surprise. One of them has a band and he wanted to give them an airing as they hadn't played in a while so they turned it into a fundraiser for me Raised £573!! So with the race night my other colleague did for me and other monies coming in I've got nearly £4000!!

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  • Terry
    replied
    It's not quite the amount that you need yet, Pink,

    But he has done well.

    Love Terry

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