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Being treated well

Treating you and your information with respect

Feel positive that you and your information will be looked after properly.

Katie's story

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I knew from a young age I was different and that’s just how it is. I knew that my friends had normal lives and that my life was very much different. My friends would say ‘What are you doing next week’ and I be like, ‘I’m going to the hospital’. Something was definitely wrong, which was very scary. I was finally diagnosed with Williams Syndrome.

One of the biggest problems is hypersensitivity. I’m never sure of my emotions. It’s like calm waves and then the next minute a thunderstorm and an earthquake joined together.

It was literally in massive bold letters. Do not tell her she’s got Williams Syndrome until she’s ready. Everything had run smoothly until we went into this consulting room. This doctor was saying ‘tell her tell her tell her, she’s got Williams’, tell her tell her tell her’, you know really intimidating. I heard him, I remember just saying to myself, ‘Williams Syndrome, whatever, it must be another person’, peanut that I am!

If it’s on a patient’s record then you just go by what you’re told to do, you don’t mess about. That doctor should not have done that.

By 13 I had enough courage to say ‘what is going on with me?’ So my mum sat me down in the kitchen with a cup of tea and said it was Williams Syndrome.

I’m glad I had my own time to find out. I was able to react the way I wanted to react, without any judgement. I think it would have damaged me a lot if I’d found out younger.

I need to know the doctor I’m seeing is really taking time to listen to me, someone who I feel I can trust. I think that disability doesn’t define you, because I wasn’t named Williams Syndrome, I was named Katie.

What do NHS staff say?

"It's important young people’s rights are written down"

Dr Duncan Law
Consultant Clinical Psychologist

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Well it's important there's a Constitution because it's important that young people's rights are kind of set out, written down so that they can see them and they know that when they go to the health service that this is what they can expect. It's important that they know their rights because they might go to a health service and not get what's written down. And then it's important that they feel they can say, well actually, I ought to be able to have this. The Constitution says that this should be something that I can expect so how does this fit into this particular service? And that will help services to improve. It Will help services to be more effective.

Children in care

Being in care doesn't affect your rights to be treated with dignity and respect.

The NHS should keep your information private, but it might have to share it with social workers or other professionals when it is really important and will help keep you safe. If they do share this information then they should explain it to you.

If you are worried you can contact the Who Cares Trust Helpline

What about my parents and carers?

If you want your mum, dad or carers to help you speak to NHS staff that is ok and they can do this. But NHS staff should always make sure they explain everything to you, not just your parents.

Prefer to talk to staff or see your health records on your own? If you don’t want your mum or dad involved, that’s fine too.