During the run up to the general election David Cameron went to Riven's house to talk to her about improving care for disabled children accompanied by the Telegraph - where he talked about improvements he wanted to make for parents of disabled children.
However, despite their child's problems being some of the most difficult it is possible to have, they are still only entitled to SIX hours respite care a week, and have just had requests for extra care and a link family turned down.
They are exhausted and considering putting her into social services care as they are struggling to cope.
Parents should not be forced into this position just to get some desperately needed help!
Please help support Riven and other families who are suffering from the lack of respite available. Any family can have a disabled child and any parent could find themselves in this position.
Statement from Riven
Thurs 20th Jan
"Yesterday, as has been reported, 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 on Mumsnet, 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."
After Riven's press release we are no longer asking people to contact the PM about her case. However please consider emailing David Cameron to ask him what he is going to do to help other carers in this awful situation all over the UK, and the cuts to Disabled Living Allowance (blogger's note: more details to come):
firstname.lastname@example.org Or: email@example.com
For a guaranteed response write a letter to either his consitituency address:
10 Bridge Street
OX28 1HYOr at Downing Street:
10 Downing Street,
If you have the time please contact your local MP, this DirectGov link will tell you how to find and contact your local MP. It doesn't take very long and could make a huge difference to the lives of people struggling right now.
If you want to tweet about this issue please use the #care4carers and http://tinyurl.com/65zsofx which will direct people here at respiteforriven.blogger.com You can really help raise awareness about what is a shockingly poor amount of care available in some parts of Britain.