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Thread: Respite4Riven

  1. #1
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    Respite4Riven

    Has anybody seen this story?

    I think it's getting proper coverage tomorrow, my mother told me about it as she's a mumsnetter. Riven is a mumsnetter who has a severely disabled daughter who needs 24 hour care. Riven talked to David Cameron (before he was PM) on a live chat about it, and he ended up going to her house to discuss how the nhs can improve respite services (DC's firstborn having had a similar condition). In the interim, DC became PM and did nothing to improve respite care. Today, Riven called the social services to ask them to take her daughter into care. Mumsnet went nuts about it, have made a facebook group, emailed the PM and twittered a lot. This is being picked up by the daily mail and the guardian tomorrow apparently - anyway. Join the group. Having done some one-to-one care for severely disabled children in a nursery, I'm glad this issue is going to get some attention.
    Last edited by smaug; 20-01-2011 at 01:44 AM.
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  2. #2
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    Bump. I think this is a really interesting issue, I'd love to hear your views.
    Never say no to a HUG

  3. #3
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    I can't say I have really strong views on this as I've not had to deal with ot, thank god.

    It's a shame but bot uncommon for politicians to go back on their word, plus it can be hard to provide the extra funding needed with our deficit...
    ‎"Anyone can achieve their fullest potential, But who we are might be predetermined, the path we follow is always of our own choosing, we should never allow our fears, or the expectations of others to set the frontiers of our destiny. Your destiny cannot be changed but it can be challenged. Every man is born as many men and dies as a single one."

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  4. #4
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    A nation is judged by the way it treats its vulnerable.

    This isn't about a individual politicians, it's about an entire society closing their eyes and pretending that they cannot see.

    That said, I'm not jumping on this bandwagon. I do my point making with my actions. I would ask anyone who signs and petition or joins up to any Facebook group to take a long hard look in the mirror and ask themselves exactly what they have previously done to help people in this position. Then turn away in shame.






    NB Last comment not aimed at the OP
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  5. #5
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    im going to ask about this at work. i wish i knew more about how they work out what families get what hours of support in regard to respite. im a healthcare support worker for children with complex needs, we provide respite in the home, and one of the familes i work with get night care 7 nights a week for their child, even though theres two parents, and in my honest opinion the child isnt too severely disabled. so the fact that this lady gets so little seems really strange.
    they are loaded with prejudices, not based upon anything in reality,but based on... if something is new, they reject it immediately because itís frightening to them. what they do instead is just stay with the familiar.

  6. #6
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    Quote Originally Posted by FireyFirenze View Post
    so the fact that this lady gets so little seems really strange.
    It's probably do with budgets. That was social services reason for taking months to assess me and I've still not been properly assessed.

    The story in the OP is on BBC:
    http://www.bbc.co.uk/news/uk-england-bristol-12239905
    http://www.bbc.co.uk/news/uk-england-bristol-12237100

  7. #7
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    Often what happens in the ones who shout loudest get most, regardless of need.
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    Quote Originally Posted by Scary Monster View Post
    Often what happens in the ones who shout loudest get most, regardless of need.
    it's certainly that way with statements.

    MoK - I really think we should jump on this bandwagon. This issue is finally getting the attention it needs and with the PM getting somewhat flamed for it, there's a fleeting chance some good might come of it. As someone who is unqualified, has shit all money, and doesn't work in the sector that much anymore, what else can I do?
    Never say no to a HUG

  9. #9
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    theres fuck all help out there for the ones who need it the most

  10. #10
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    I hate to say this, but the reason why there is so little help available is because people are generally too "British" about what they actually need.

    My previous job was working as a community care legal adviser, which basically involved advising people on what they may be entitled to, ensuring that they were assessed properly and haranguing social services until things were done properly. Quite often it was the children of elderly people who contacted us to try and help their parents, but the parents were far too proud to want to make a fuss or get the help they needed. They were struggling badly alone in houses, to the extent they couldn't get up or down stairs, and yet they still didn't want to cause trouble to anyone. It was heartbreaking.

    With carers, they would often claim that they were coping when really they were not. This was especially true for carers of disabled children; rightly or wrongly, they were too worried about permanently losing their children to say that they couldn't cope. If you're coping you don't get respite care.

    It is true that people who shout loudest get seen first, and my job was to help those who couldn't shout for themselves get heard. Even then it was sometimes really hard to get social workers to listen and understand; they would assess, but it was always grudgingly, and we were told on several occasions they were only doing it "because they don't want to be sued". Never mind that the client in question is 87 and falling down his stairs every day, and hasn't had a bath in two months because he can't get in without falling. Obviously we were only doing it to make money.

    But having a whinge on Mumsnet or on Facebook isn't the same as shouting. Provision IS there for people who have severe care needs (due to funding most councils only provide funding for categories 3 and 4 care needs, the most severe ones, now) and I genuinely can't understand why this parent cannot get care for her child. This probably comes off as quite rude, but if she spent less time moaning about it on Mumsnet and more time on the phone to a community care lawyer who could actually do something about it, things would probably be sorted out quite quickly.

    As for questions about how we treat our most vulnerable people, it is a question we need to answer now as things will only get worse. With more and more people needing care and support, because they're living so long, someone has to pay for it. And it's not cheap, even basic adaptations such as handrails for a bath cost £1000 or more. But suggest that older people pay for their own care, out of the value of their home, and the same children who are adamant that their parents "cannot cope" suddenly start ranting and railing about how everything is disgusting.
    Last edited by Arctic Roll; 21-01-2011 at 09:55 AM.
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  11. #11
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    its weird the way it works though.
    Ive been offered respite in the holidays for my autistic 3 year old (not my autistic 10 year old though for some reason) even though theres many people who could do with it a lot more than me.

    Mind you, theyve said this woman is getting respite care, its just not enough.
    For a child with 24hr a day needs, she probably needs a lot more than respite. She probably needs someone in to help her full time, and she'll have a damn struggle on her hands to get that. I dont think anyone would get that, and theyd probably suggest residential care before that

  12. #12
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    Wow Kermit, that's a fascinating insiders perspective there,and a lot of stuff I ddnt know,I agree with the whole proud thing, my mum is disabled and it took so long for her to even admit she had a problem and needed help.
    ‎"Anyone can achieve their fullest potential, But who we are might be predetermined, the path we follow is always of our own choosing, we should never allow our fears, or the expectations of others to set the frontiers of our destiny. Your destiny cannot be changed but it can be challenged. Every man is born as many men and dies as a single one."

    --Timothy McGee
    (NCIS)

  13. #13
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    Quote Originally Posted by SuzyCreamcheese View Post
    its weird the way it works though.
    Ive been offered respite in the holidays for my autistic 3 year old (not my autistic 10 year old though for some reason) even though theres many people who could do with it a lot more than me.
    This something my mum has never been offered - yet, at some point my brother managed to really hurt her.

    I've never been offered any help either. I only got a little bit of help this time because I said that I was going to make a complaint about the "service" I was given. And I think I'm going to need to ask for more help again - don't want to; but I know I need it.

    With carers, they would often claim that they were coping when really they were not.
    This is the impression I got last year from a friend of mine. He claimed he was fine - yet, it was obvious that he wasn't.

  14. #14
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    i had to pay for it, although it was subsidised. I think its probably because he attends a special needs nursery and it was through them, and my eldest attends mainstream so thats probably why he wasnt offered anything

  15. #15
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    What complicates things with people with severe disabilities is that different organisations have different responsibilities.

    If the care needs are primarily medical (e.g. taking medication, IV tubing) then the PCT foots the bill. If the care needs are primarily non medical (e.g. feeding by mouth, bathing, mobility) then social services foots the bill. If the care needs are both then the two organisations should liaise to settle the bill on a proportional basis.

    In times of severe budget cuts, this means that anyone who has both medical and non-medical care needs gets caught in a pissing contest between social services and the PCT about who pays the bills. That may well what be happening in this case.

    Suzy, residential care is rarely the preferred option for care provision now, usually they will attempt to supply care provision through the Independent Living Fund first. This is a scheme where the cared-for person receives money and they directly employer a carer/carers to provide that care. The advantage is flexibility- if a cared-for person wants more support than assessed, they can purchase it easily. The disadvantage is that if a carer fails to provide a sufficient level of care, it is nothing to do with the social services department who give out the money.
    Can you hold me like you held someone you shouldn't have let go?
    Can you keep me deep inside like the regrets that burned a hole?
    Can you love me like you loved someone you loved so long ago?

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