"Not being recognised"

I am a 58 single parent with a daughter with chronic Crohn's. I have been caring for her single-handed for fourteen years. We have built an amazing relationship and we both know exactly how things work best. We work in tandem to achieve the best health she can.

If only the same were true in hospital. For those 14 years I have experienced such anger, disbelief, and down-right bullying in hospital. I have asked for recognition, forms, a chance to speak to someone, but until now, including tonight, nothing has changed.

The staff I have met don't seem to recognise Carer's rights nor the patient's rights to have the help of a Carer in hospital. Recently we had a typical experience. My daughter had a test which made her very ill and in such pain. We slipped into our normal routine and I rubbed her back, kept her cheerful and ensured she had everything she needed. As always the ward was full and only about six staff, so most nurses gladly let me help her.

After a long day we were just settling her for the night when a nurse walked up to me and asked when I was going. I was shocked and said 'sorry? '. She repeated her question with a very angry look.'. I explained I was her Carer and was helping her on a very bad night as was her right.

She accused me of lying. I spoke of the Carer's rights and so on, including UCLH's Carer's policy and was told I was lying! After she left I googled it and went quietly to show it to her, thinking that, along with every other nurse I have ever spoken to, she didn't realise. She refused to look at it and said she didn't care about any policy and that I needed to go. I asked how they would be able to help her when they were so busy. I am there to take care of my daughter, which freed them up to care for others. I also asked what harm I was doing? My daughter is seriously ill at present and was afraid.

I was horrified. I went back to my daughter who, thankfully, was feeling a bit better. I felt humiliated, angry and tearful. I had been caring for her for 12 hours and it had been a really hard day. I was glad to help her and so glad she was finally feeling better.

The nurse returned and said. We have emailed your consultant to ask his opinion about what you said tonight. I said that she should speak to the hospital trust who signed up to the policy in 2000s. She wouldn't listen and said, say goodbye and go. I couldn't believe her attitude.

I wish I could say it was the first time I have had angry nurses force me to go. How upsetting for my daughter and how ignorant. I have never been respected as her Carer, and certainly never accorded any opportunity to discuss it. I have asked for forms but noone has ever known what I was talking about. I asked to talk to someone but am told there isn't any one.

Poor girl - they make her feel like she is doing something wrong. And I feel like I am being treated like an intruder. I quietly help, and do all the things I would do at home, with no trouble to anyone.

What point is it having rights when she cannot say what she needs to them and they won't listen to me either.

What should I do please to help the hospital understand the rights she has to have her carer help there? and my rights to be there?

Warmest wishes