Mother who met PM asks to put disabled daughter into care

Mother who met PM asks to put disabled daughter into care

'I can't cope,' says Riven Vincent after receiving letter telling her no more respite help is available for six-year-old Celyn


* guardian.co.uk, Wednesday 19 January



Just before midday today, a Bristol mother called Riven Vincent announced to the internet: "Have asked social services to take dear daughter into care … They have refused extra respite. I can't cope."

The public revelation of her desperate situation became an instant internet cause celebre, and swiftly attracted a flood of over a thousand messages of sympathy and dismay. The online outrage quickly mounted when it emerged that David Cameron had visited Vincent at her home during pre-election campaigning and assured her that if he became prime minister he would not do anything that would harm disabled children.

Vincent cares full-time for her six-year-old daughter, Celyn, who has severe quadriplegic cerebral palsy and epilepsy. As her daughter grew older her caring responsibilities became more arduous, so she turned to social services hoping for extra support. When she received a letter today telling her no more help was available, she decided that her child would be better cared for in a residential home.

Sounding tired, and unhappy to find herself at the centre of a storm over government policy, Vincent said tonight that she was disappointed by Cameron's failure to deliver on a personal commitment. "This is a side-effect of the cuts," she said. "He could have protected families with disabled children from a lot of this. I would be angry, if I wasn't so tired."

Vincent sleeps in a bed next to her daughter every night, beside a monitor that checks her daughter's breathing. After almost seven years of interrupted sleep, her own reserves of energy have become very depleted.

"It will be devastating for me as a mother. I want her here, with her family," she said. "I never imagined I would get to this point. I don't want her in a residential care home – it would destroy me. But without extra help, I find it hard to see how we can meet her needs at home." She called her South Gloucestershire Council social worker today to tell her she wanted to start looking for a full-time residential care home options for Celyn. Then she posted her decision to friends on the Mumsnet website. Her message was instantly circulated around Facebook and Twitter.

Charities who campaign on behalf of carers looking after disabled children joined the online debate to warn that council budget cuts and the imminent removal of a ring-fence around the funding of respite care, could mean more parents struggling to get the respite support they need.

The decision is a complex one, and has not yet been made conclusively, but Vincent said today that she could no longer see how to avoid handing over her daughter's care.

Caring for her daughter is "relentless", she said. "She needs someone 24 hours a day. She doesn't grow up." Celyn 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.

"My sleeplessness leads to problems with everything else. I'm too tired to cook, so the food in the fridge goes rotten," she said. Her three other children are deprived of her attention. "Caring responsibilities take over your whole life."

Vincent is already aware of the power of the internet as a tool for lobbying politicians. When Cameron visited the Mumsnet headquarters, also as part of pre-election campaigning, to talk online to parents, he was forced to admit (in response to questioning from Vincent), that he did not know how many free nappies the NHS had provided for his own son, Ivan, also born with cerebral palsy and epilepsy. She invited him to tea to discuss the issues, and was surprised in late March to be told that he was coming.

At that private meeting, he also promised to write on her behalf to the local primary care trust, to demand that the expensive incontinence nappies should be provided according to need, and not rationed to four a day. "I think he did write to them, but nothing has changed," Vincent said.

It would cost the local authority between £2,000 and £3,000 a week to look after Celyn in a home, Vincent estimated, compared to £15 a hour for a carer to help at her own home.

By this evening, the prime minister's office had been made aware of the latest developments in Vincent's situation. Cameron's spokeswoman said he would be writing to her and would be putting as much pressure as he could to make sure that the local council is doing all it can for her, but this, she stressed, was "a local council issue".

"We are committed to continuing to improve respite care for carers of disabled children. We have said that we will provide £800m in funding for short breaks for carers of disabled children over the next spending review. This represents an increase in year on year funding from 2010," she said.

Charities welcome this funding, but are concerned that the removal of a ringfence will mean that the money risks being diverted elsewhere.

David Congdon, head of campaigns and policy at Mencap, a charity for people with learning disabilities and their families, said: "Given that this money is available, there is no justification for cutting these services. As local authorities tighten belts we expect to hear more and more concerns from parents about respite care. Families and carers love the people they care for. They care for them willingly, but they need help to do so."


Respite care in Guernsey has been cut to 28 days per year including parents being able to go away on a holiday break....if you have 14 days holiday per year you would only have another 14 days to use for much needed respite..this is due to a shortage of beds for adults with disabilites ,a shortage of staff and hssd budget cuts...what will happen if all parents decide like the lady above we cant cope with our disabled son or daughter any longer and need to put them into fulltime care....

Those that make the decisions to cut this should be made to steps into the shoes of a carer for a few weeks .this I am sure would certainly open their eyes to what is needed .
Anyone who cares for their child who has special needs ,needs to have a break from it all .
I know of some who never get help,only if a grandparent helps them.
the systems need reviewing and help given where needed .

so very true kat. i would love to see a deputy cope with my daugjters probs on a fulltime basis for a month or two x

I would also like to see someone take care of my grandson for a week with out help!
some deputies have no idea .
but there are a few who would understand like Barry .