Statement from Riven Vincent on respite care
On Wednesday 19 January, longstanding Mumsnetter Riven posted on our Talk boards that she felt the lack of respite help left her with no choice but to ask social services to take her disabled daughter into care. Thousands of Mumsnetters replied to – and Tweeted about – Riven's situation, resulting in front-page coverage in the national press and a statement from Downing Street that the Prime Minister would be writing Riven a letter.
Thursday 20 January Riven has now released a follow-up statement to the media...
"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.
PM sympathises with mum denied more help for disabled child, Channel 4 News
The Mumsnet debate that became a national issues, Guardian
PM will look into care for disabled girl, Sky News
Mother who met PM asks to put disabled daughter into care, Guardian
PM has 'every sympathy' with family of disabled child , BBC News
Disabled Care Row Mother: 'We Are Crumbling' , Sky News
PM criticised on Mumsnet by mother of disabled child, BBC Bristol
David Cameron 'very concerned' over plight of disabled child, Telegraph
'PM's broken promise is forcing my disabled daughter into care,' says mother, Independent
"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 - £800m 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 neither can families up and down the country, just like ours. We are crumbling."
"I can't stress enough how significant today has been. Certainly since I have been working at EDCM, these critical issues for families with disabled children have never had such sustained media attention.
We hope that it will result in a high volume of people taking our action to challenge local authorities, and will signficiantly increase the political will to act to address issues for disabled children. I really hope that Riven gets the support she needs because of it. Please do pass on our good wishes to her. If she would like to take a legal challenge at any point (although it may well now not be necessary!), we have friends in the legal professional who would be happy to give preliminary advice.
And we would also like to say a massive thank you to all Mumsnetters! They (and you at Mumsnet HQ) truly are unstoppable."
Laura Courtney, Campaign Manager Every Disabled Child Matters, Council for Disabled Children, National Children's Bureau
The government recently allocated £800 million over four years to fund short breaks for disabled children - but this money isn't ring-fenced, so local authorities can spend the money elsewhere if they wish.