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Sheila

I have worked all my life and paid into the system. I always believed that when you were sick or disabled or old or just in need you got help because we have the NHS and the welfare state, but it's not true.

A few years ago my daughter was left on a trolley in our local hospital and ended up with brain injury, she's not progressed very much and we're told that she's unlikely to improve. We haven't got a compensation case because the police were hopeless and the solicitor we used closed our case when things got difficult.

She needs full time care but her care package doesn't include nights or sleepovers and the last call is 3 in the afternoon when she's supposed to get put to bed.

Of course I don't let them do that to her she's 27 and wants to be like other young people. She does have a few friends and occasionally they take her out but it's a struggle because she has seizures and I think it puts them off.

Our social worker has changed 5 times in the last 2 years, we haven't seen our CCG case manager for over 12 months and at the last review we weren't invited to attend or even told it was happening.

I went to our MP for help when the council decided that as she wasn't "responding" to their therapists and rehab they were going to cut her care package. All her doctors say she should be on CHC but we've been refused that many times I've given up.

The MP was very nice but useless, she told me that she has no power over the council and I was shocked to hear that. She's the government for God's sake how can she not have some power?

I'm exhausted. Our PAs keep quitting because my daughter is difficult but I know that if she got the right help she'd be better. She doesn't want to go bowling or to garden centres, she wants to go shopping and out for a meal. 

Her care package has now been cut again, we weren't warned just told that 'panel' had decided it couldn't afford to pay as much as it had been doing. I thought the Care Act says that panel can't base their decision on either a person's ability to pay or what the council can afford but they are doing.

My daughter is becoming very isolated and lonely. I've had to give up work full-time and we are on the bread line.

I tried to get a meeting to talk about things but the CCG ignore me and the social worker just keeps saying it's the way things are.

If I walked away my daughter would cost triple what she does now and all we're asking for is another £100 a week to give her a bit of a life.

I've given up trying to have one of my own.

When they say they take care of the carers it's a lie. When they say they care at all that's a lie too. They only care about the money.

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