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  • Terry
    replied
    Hi Pink;

    It is very disappointing to have hope and then for it to be refused.

    It is the first thing I ask now , is it means tested and what are the limits. I applied to the Fire Services Benevolent Fund for some contribution towards a new expensive wheelchair, I have not had any help from them for six years. I was then asked to fill in forms, send bank statements, and jump through hoops only to find that any monies are means tested.

    Still, at least it's warm outside for your new wash dry loo, I have a big tent if you want some privacy.

    Love Terry

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  • Guest
    Guest replied
    Unfortunately we do not have any savings. If I did I would be able to fund a lot it if myself. The fact we have no savings gives us more stress. We were just starting to live more comfortably and putting a little aside, when this bomb shell was dropped. I agree about the ibc. I understand that quite a few projects were funded with the money, but surely not all of it?

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  • ccinjersey
    Guest replied
    Agree Pink, and no one should have to go thru their life savings when struck with an illness that needs so many modifications to have better quality of living when there are organizations out there that's sole purpose is to assist, and support those living with mnd

    These organization should not be stingy, especially when people gave so generously with their hearts and pockets to help those living with this illness in monetary donations.

    If this illness is considered rare divide up all those living with it and then calculate the charitable donations that the IBC alone raised, and that includes setting aside money for research. There should be an abundance of money that can be distributed solely to individuals and their families managing this illness everyday and the needs they face.

    The IBC was a fundraiser, where and how where those funds disturbed ? and makes me wonder just how much went into the hands of those that need it? I'm not bashing these organizations and all the wonderful work they do, just questioning why those in need are still left needing ??

    xox

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  • Sportingmac
    replied
    Certainly are not alone in your thinking. Much is made of the help you 'may' be eligible for - but in reality most of us don't qualify. I do get rather angry at some of the financial 'rewards' that are made - but hey - that is me being selfish.

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  • Guest
    Guest replied
    It's a tough one. I understand and don't expect handouts for everything. The thing is, to be dealt a life changing illness we deserve to have quality of life. This disease has snatched enough from us, can't we just have help to make life easier? I feel as if I have to fight for everything and justify why I truly need it! I expect I am not alone in this?

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  • ccinjersey
    Guest replied
    The Ice Bucket Challenge raised millions upon millions in my country, and yours, where is it ???

    Besides 'research' in should be going directly into the hands of those living and managing this illness on a daily basis for some basic needs this illness requires.

    There are some other resources that can be tapped into besides mnda, there is the 'ALS Guardian Angels' assisting those living with mnd and 'ALS Worldwide' could always be worth a try.

    So true Pink, true friends help pick you up when knocked down. Good luck I hope your fundraiser a huge success! xox

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  • John14
    replied
    That is disappointing, my application was dismissed in one phone call, you work all your life and build up some savings and a pension and then when you really need help diddly squat!

    Hey Ho,

    John

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  • Guest
    Guest replied
    Well, after alot of meetings, form filling and, assessments, looks like I won't be getting a grant. Very disappointed as the occupational health lady from social services was so supportive in trying to get my adaptations approved and funded. I am however able to have £5000 which will cover the washer dryer toilet I want installed. Also, hopefully having a stair lift which is being covered by the mnda up to £3000. A friend of mine has very kindly arranged a race night to raise funds towards the adaptions. It will be a start, and its so nice knowing people are supporting me. You find out who your friends are when you are knocked down don't you?

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  • Christoff
    replied
    I had a DFG assessment and it turns out I can contribute £175,000.00 to me adaptations. In short if you earn more than £10000 per annum you wont qualify!!!

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  • Guest
    Guest replied
    Thanks miranda. It all sounds complicated to me!!

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  • miranda
    replied
    Make sure you get advice on which adaptations are VAT exempt. It's a bit complicated.

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  • Guest
    Guest replied
    Well... The lady from social services came and assessed what I need to help me stay in my home and make it more beneficial to my needs. I have to wait for a financial assessment first to see what funding I can have. Crossing my fingers. Won't build my hopes up too much though. If it's anything like my critical illness policy (which was turned down, now in hands on ombudsman) they will probably say... 'computer says no!!' she's recommending access to front and back of the house and a wet room downstairs. Here's hoping!!

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  • Guest
    Guest replied
    Thanks loretto. I am hoping to qualify for a downstairs wet room and access to the garden as I love sitting outside but it's getting hard now as there are steps down to it x

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  • lorret
    replied
    Hi , not sure if you will find out straight away. We had them come about through the floor lift, they did let us know a week later, we were eligible for it but decided to use the grant amount for the extension instead. Lorret

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  • Guest
    Guest replied
    I have social services coming to see me on Thursday to assess for adaptations to my home. Will I know straight away if I qualify?

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