We have no-one

"My son has very complex needs and that's the problem, he doesn't tick a box or slot into anyone's pigeon hole and because the services available don't meet his needs he's been left to rot. What makes me so angry is that once I felt I could say something and get someone to listen. I'm his carer as well as his mum and although I never believed social workers and the CCG when they trotted out that old chestnut we need to take care of you too, in the last couple of months they don't even bother with that. Last week I had our latest shiny new social worker sit in my house and not only did she ask me to stop explaining her questions so that my son could understand she then delivered the news that from now on he's expected to pay for his own activities out of his benefits.

She said that 'panel' had decided this and that a meeting in August; that we knew nothing about had agreed that he no longer needed as much support as he had previously and that the council couldn't afford to pay for his gym membership or his outings with his PA. I asked where his personal trainer was supposed to take him to do his Physio exercises and she looked around our room and said 'well you can push the furniture back can't you?'

I said that his benefits paid for food and bills and she pulled a face and in a very condescending manner said that was his choice.

I asked how they'd reached their decision that he no longer needed as much support and she shrugged and said that panel had looked at the evidence and made a decision. I asked what evidence and she sighed and said that she'd given them all his medical 'stuff'. I asked why we hadn't been told and she smiled and said that we didn't have to be told anymore.

This is news to me.

The NHS Constitution and Care Act say we do have to be kept up to date and informed so why are they not following the rules?

She said she couldn't comment.

I asked how we were meant to manage and she said that 'natural support would obviously now have to step up'. Natural support is me and our family. I asked about how I would do this and still go to work. She said that unfortunately my going to work was not the 'concern of the council'. She said I would have to 'take more responsibility and get friends and neighbours on board.' I'm shocked and horrified. 

I've never been so disrespected in my own home.

I thought carers were meant to be valued and respected. I thought we were supposed to be involved and consulted. Now I find out they're having meetings not only without us but without telling us too!

My respite has been cut to two hours a week and she said that was so I could go to work. She said my husband will have to 'fill in behind'. Our overnight once a month has been cut and we've lost 4 PA hours a week. My son will no longer be able to go out as we are not paying for other people to do their jobs.

The council and CCG has a duty of care to support my son and now they're trying to make us pay for it. And if we don't it's our fault not theirs. Or rather it's his because he's expected to self manage. 

My son has brain injury and is in a wheelchair. We had to raise money last year for a wheelchair as the CCG decided he didn't need one.

We don't go on holiday anymore and even though we both work there's not enough money in the pot for even basic things. We remortgaged our house to pay for adaptations and only recently over-turned a PIP decision to take away his car.

I don't know how much longer I can cope. My husband has left a couple of times not because he doesn't love us but because he can't stand to see our beautiful boy so damaged and hurt. 

We feel degraded and humiliated. My son is treated worse than an animal in one of those zoos you see on the telly adverts. He was struck down in his prime, he didn't ask to be like this and he cries because he remembers how he used to be.

I can't believe that in the 21st century people are treated so badly.

For the record my son gets 30 hours of care over 7 days. He gets a Personal Budget of £400 per week to pay for staff, activities and insurance. He has 3 PAs but in the last 12 months we've lost 2 of our best staff because they can't work in the system anymore. 

None of them have ever been included in discussions about my son's care.

I've been reasonable understanding and patient when they've kept cocking things up but after this not anymore.

I want people to know how disabled and vulnerable people are being treated. It's a disgrace.


Joe's experience

Sheila's experience

Anon's experience