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“Listen to the voice of experience from those that live it”

“As carers, and parent carers, we have oodles of experience from dealing with other services and agencies and health and social care. I use the word ‘professionals’ because they are professionals in their fields. But they’re not professionals in our children. And it really is listening to the voice of experience from those that live it, and actually taking on board what they’re saying. And, you know, I think Patricia said, we’re not expecting perfection, we certainly aren’t expecting perfection. But what we are expecting is for somebody to listen. Take notice of what we’re saying. And be willing to work with us. That’s all we want: what our young people need. We’re not asking for more than that. We’re not asking for the fireworks and the guns and the whistles. We just want to be able to live our lives like everybody else does, in a way everybody else takes for granted. With simplicity, doing the things that everybody else does. With ease, without having to fight, without having to constantly bang the drum. And without having a detrimental effect on the people that we look after. And when I say experience and thinking about government…I don’t know, I did feel that there was a slight sway towards supporting families with children with disabilities, when we had Cameron and brown both in Parliament, both as Prime Ministers both with children with disability.”