Amanda Healy: The NHS allowed my daughter to die

When my nine-year-old daughter, Daisy, died, a doctor at the hospital said to me: "It's almost like losing a child." What did he think my beautiful daughter was?

Daisy had gone into hospital with a tooth infection. Three weeks later she was dead. Her experience echoes many of the stories in the Death by Indifference report published by the learning disability charity Mencap last year and in the independent inquiry that the report prompted, the findings of which came out yesterday.

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Daisy was very tiny and particularly cute. But while doctors saw that she had one little chromosome that was damaged, they did not see her personality and infectious giggle. We loved Daisy exactly as she was and would never have wished her to be different. She was the most delightful, happy little girl. She loved all the things a child should: playing, her sister Ella and dancing with Daddy.

Daisy tried so hard with this world. She just wanted to please people and make them smile. But when Daisy needed help, she was let down.

We were always worried that what Daisy had was was much more serious than toothache. But it wasn't until a year later, in the course of the independent inquiry, that we discovered that the tooth infection had led to septicaemia.

We spent three weeks in and out of hospital. During these three weeks, Daisy was never treated as though her life was in danger, nor was there any urgency. At one point Daisy had not had anything to drink for three days. She had diarrhoea and had been sick. Yet the staff would not turn her drip on.

Later, when Daisy began gasping for breath, we were told she would be transferred immediately to ICU. We had to watch as Daisy became more and more distressed. Her nose was bleeding, her eyes were bruised and her breathing got faster and faster. I kept telling Daisy just to keep breathing and they'd be here in a minute. I was wrong. They didn't come, and this went on for nine hours. It was all too much for Daisy. She had a massive pulmonary haemorrhage, which led to her death.

After Daisy died, we discovered that staff were fully aware that Daisy's life was in danger. They did not try to save her, they just documented her decline. This was not an accident. They later told us "they had misjudged her quality of life". For your daughter to die in such terrifying circumstances and to find out nothing was done is quite unbearable.

People tend to perceive that we are over-protected nowadays – particularly people with a disability. They believe that the world has gone human-rights mad. But how can this be true, if our beautiful daughter was not protected? The laws that exist are meaningless if they don't work and there are no consequences for the people who break them.

Medics need to be educated, and learn to appreciate all human beings. A senior member of staff stated: "Parents like you should realise children like these are going to die sooner or later." This is not true, and if we have a chance to live, we should get it.

Daisy died on 10 October 2005 in a great deal of pain and distress. As parents, our expectations were not excessive. What we did expect was for our lovely daughter to be treated fairly, and be given the care she needed to save her life. Had she not had a learning disability, Daisy would not have been treated this way. This is the unacceptable ending to her happy and amazing life.

www.mencap.org.uk