'I just want some time to myself'

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By Jane Elliott Health reporter, BBC News

Julie cares for her husband and daughter

Julie Scott's daughter is getting married later this year, and she would love to be able to spend time helping her prepare.

But her days are spent caring for her other daughter Lois and husband Gordon, who both have brain-damage.

"It has been so long since I had any time," she said.

Left isolated

Apart from support from friends, Julie, 51 from Bradford, gets no help and is the sole carer for her husband and her daughter.

She does everything for them, from helping Lois to brush her teeth and wash to helping Gordon shave.

If I popped my clogs, God knows what would happen and that is really frightening Julie Scott

Lois, who is now 19, was brain damaged at birth. Julie and Gordon adopted her as a child.

She is quadriplegic with cerebral palsy, is registered partially blind and is an epileptic. Lois also has learning difficulties and needs continual care, including help feeding.

She is also very vulnerable to colds and infections, and has stopped breathing twice this year.

But it was when Gordon suffered a brain injury after a road accident in 2005 that Julie's life became intolerable.

"Gordon too now needs permanent care.

"After the accident he needed to learn to walk and talk again. He now has short-term memory loss and emotional problems and impaired understanding.

Needing help

"He is very vulnerable. But while you can see that Lois is disabled, you can't see that Gordon is. It is a hard thing.

"I get no help. Shortly after Gordon's accident, I had a breakdown.

"I have other children but they all live away, so I knew I had to keep strong.

"They put Gordon in respite care for a short time and offered to put Lois into care, but there was no way because I wanted her to stay at home.

"Luckily I have a couple of really good friends and they just moved in for a while, and from then I have gone from strength to strength."

Julie's day can start at 2am with Lois deciding she has had enough sleep. It will then be late at night before Julie has finished all her tasks and seen her daughter and husband to bed, by which time she is thoroughly exhausted.

"If I popped my clogs, God knows what would happen and that is really frightening," she said.

"What has kept me sane is helping form a branch of Headway here in Bradford, and I'm now the chairperson, speaking up for our members.

"I feel so passionate, not only for survivors, but also the carers of the brain injured as they are very much overlooked as a brain injury is known as the hidden disability," she said.

Green paper

The government is currently considering how it will provide and pay for care and support services in the future for families like Julie's.

And they are calling for members of the public to give their views on what should be done and who should benefit and how they should benefit.

In 20 years' time a quarter of the population will be over 65, and the over-85 population will have doubled.

Others, like Julie, may have earlier needs for help because of changes in circumstance.

We want to hear people's views on how we can create a high quality, affordable system in a way that promotes independence, choice and control for everyone. Ivan Lewis

Projections show that in the year 2027 there will be an estimated £6bn gap in funding required for all social care, it is expected this gap will continue to increase year on year.

In addition, the cost of disability benefits is projected to increase by 50% and they expect over 1.7 million more people to have a need for care and support in 20 years time.

Julie hopes this Green paper, applicable only in England, will result in better deals for carers like herself.

"My experiences have shown me that you can never know when you may need to provide support to someone you love.

"A few years ago I could never have imagined having to care for my husband.

"That is why I believe it is really important for everyone to get involved in the debate on care and support - you never know when it may affect you."

The current care system costs around £20bn a year. In 20 years time, there will be a £6bn shortfall for social care.

Ivan Lewis, the Care Service Minister at the Department of Health, said funding was predicted to be a big problem.

"We want to hear people's views on how we can create a high-quality, affordable system in a way that promotes independence, choice and control for everyone. I urge people to get involved - the debate affects us all."