#1
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The mother at the centre of a political row over her disabled daughter's care said she hoped David Cameron would do more to help families in the same situation

Ms Vincent released a statement about her daughter after it emerged Mr Cameron had promised her more would be done in a pre-election meeting.

"The money the government has allocated for short breaks and respite care - £800m over four years - is not enough and worse still it's not going to be ring-fenced," she said.

Ms Vincent's six-year-old daughter Celyn is blind, quadriplegic and has cerebral palsy and epilepsy.

David Cameron had visited Ms Vincent and her family at their home near Bristol during the general election campaign.

Ms Vincent says there is such little help available she feels she has no choice but to put Celyn - named in some reports as Holly, an English version of the name - into residential care.

The mother of four was among the mothers who questioned Mr Cameron during a web chat in November last year.

She told him the number of nappies disabled children receive is rationed and challenged him to do more for families in her situation.

He said he would look into it and promised to visit her at home in Bristol - which he did in March.

But now she has discovered she cannot get extra care for her daughter in their own home and feels let down.

"He promised us personally before the election that my Holly and the NHS would be safe in his hands," she said.

"But clearly he has broken his vow and we feel very upset," she added.
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#2
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So then what are your views?
Your experiences in terms of help you get and what help you get and what should be done to make thing better?
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#3
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An breaking news statement reads as follows:

From Riven Vincent


I called my social worker to tell her I wanted to start looking for a full-time residential care home for my six-year-old daughter, Celyn, who has severe quadriplegic cerebral palsy and epilepsy. I'd just received a letter from social services saying they was no chance of any more than the six hours respite care we receive currently.

I never imagined I would get to this point and it's the last thing we want for her but we just can't see any other option. Caring for my daughter is relentless. She needs someone 24 hours a day. She must be tube-fed, is doubly incontinent, cannot walk, talk, sit up, or use her arms. She has to be lifted using a hoist from chair to wheelchair, between bed and bath. She doesn't grow up. I sleep in a bed next to Celyn every night, beside a monitor that checks her breathing. I've barely had an unbroken night since she was born and I am exhausted.
My sleeplessness leads to problems with everything else. I'm too tired to cook and give my three other children the attention I need to. Caring takes over your whole life.

And it's not just my family. Carers across the country are struggling the same way. It's not a new thing. It's been going on for years and no one government is to blame.
But I had hoped that after David Cameron came to visit me earlier this year following our exchange, he would have done more to protect families like ours. The money the government has allocated for short breaks and respite care - eight hundred million over four years - is not enough and worse still it's not going to be ring-fenced. So there's nothing to stop cash-strapped local authorities from using the money elsewhere.

I have no wish to put my daughter into a home. We want to look after her, all I am asking for is a little more support. Without this we simply cannot cope and nor can families up and down the country just like ours. We are crumbling.
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#4
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Hi well i know its really hard and do believe more should be done to help out families , i dont like the part that she said she would have to put her daughter into care . I'm sure their life is very hard on them but i believe you deal with what you have and can do . I know as a single mother with 2 children , my 1st is 14 years old and has no problems and a son who is 2 and a half with complex problems , who cant walk , talk or do a thing for him self at all , i dont have any help from his dad, my family or his social worker , every time i've asked for even someone to come to my house to help watch my son even for an hour i've had no help and been told i'll have no respite until he 8 years old . But i get on with it , their is days i feel like running away from it all . I know people in my own area who get everything given to them so it is unfair that different areas are treated different . Only help i get his from his dads family who would take my son once every 3 weeks to stay over night but that hasnt happened in months now due to an issue with his dad . I really do feel for people that find it hard at times but no matter how hard it gets i know i couldnt put my son in care , its a lot different when they reach being an adult . No-one ask's to have a child with problems but we find away of coping with it to give our children the best we can .
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012
#5
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I think this is just the start of how cuts will affect children with disabilities and it's a disgrace. We were told yesterday the commuity nurses who help us with Nate will no longer be available at the weekend due to budget cuts. We can manage, but it will mean frequent trips to hospital. I worry for the children who have more severe needs or are having palliative care at home, and how these things impact them.
This seems to be yet another example of society regressing. Without respite and other methods of support the pressure on parents in huge, especially where there are siblings too. it seems to be false economy and morally wrong as if parents can't cope emotionally, physically, or a Childs health suffers the only options are foster care, homes or hospital. So much for social reform and keeping children at home where they can be cared for and loved in their family environment. So much for an inclusive society. Hey i have an idea, why not introduce a way the poor, destitute or disabled can be housed, cared for, fed and supervised out of their home while helping the community, oh yes it's called a workhouse.
Rachel, Thea and Nate


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