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?
We loved Daisy exactly as she was, and we never would have wished her to be anything else. We knew she was beautiful and so did she.
She was the most delightful happy little nine year old. She just loved waking up in the morning and loved all the things a nine year old little girl should love: playing, learning, singing and dancing with daddy. But most of all she loved being with people, especially her sister Ella.
Daisy tried so hard with this world, she just wanted to please people and to make them smile. But when Daisy needed help, she was let down.
One day, Daisy went into hospital with a tooth infection. Three weeks later she was dead.
During the three weeks Daisy spent in hospital no proactive plan was put into place to save her life, only her decline was documented. Daisy had a tooth infection. We knew, because of instinct, that it was much more serious. We only discovered a year later, in the independent inquiry, that the tooth infection had led to septicaemia. In the time Daisy was in hospital we were never told she was seriously ill.
We spent three weeks in and out of hospital. During these three weeks Daisy was never treated as though she was seriously ill, and certainly not like her life was in danger. There was never any sense of urgency: when Daisy needed something it would always take so long. On Daisy's last day before she was transferred the treatment had become so bad, I began to panic. I said I did not think they were looking after her properly. I asked for Daisy to be transferred to Intensive care.
Just a few hours later Daisy began to gasp for breath. We were told she would be transferred immediately to ICU as an emergency. We had to wait and watch as Daisy became more and more distressed. Her little nose was bleeding, her eyes were bruising and her breathing was getting faster and faster. She was so swollen.
I kept on telling Daisy just to keep breathing and they would be here in a minute. I was wrong. They didn't come, and this went on for nine hours. It was horrific. By time they got there Daisy was so poorly, and we were just human wrecks. It was all too much for Daisy and when she reached Leicester she had a massive pulmonary haemorrhage, which led to her death. But there were multiple failures.
Daisy had not drank, she had diarrhoea and had been sick, yet they would not turn her drip back on, even though the doctor said she should have it. Daisy went nearly three days without a drink, which is catastrophic for septicaemia. After my protests they turned the drip back on - but she was then given too much fluid, which overloaded her and left her swollen. They told us not to worry.
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, and it wasn't the case that they did not realise how ill she was. They told us they had "misjudged her quality of life".
For your child to die in such terrifying circumstances, and to then find out that not everything was done that could have been, is quite unbearable. When we allow our most vulnerable children to be treated the way that Daisy was and the treatment is left to go unchallenged and unpunished - then we are, as a society, seriously headed in the wrong direction.
People tend to perceive that we are all over protected nowadays, particularly people from minority ethnic groups and those with a disability. They tend to believe that the world has gone human rights mad. But how can this be true, if society failed to protect our beautiful nine year old daughter? 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 simply learn to appreciate other human beings regardless of appearance. A senior member of staff stated that "parents like you should realise children like these are going to die sooner or later". This is not true; just because you have a learning disability does not mean you have to die young, but life is precious and whilst we have a chance to live we should be given it.
Daisy died on 10 October 2005 in a great deal of pain and distress.
As parents our expectations were not excessive, and we are well aware of medical limitations. What we did expect was for our lovely daughter to be treated fairly and to 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. It is unacceptable.
I think the last words should be left to Daisy. If she could say something today it would be to remind people they are perfect just as they are. Let's hope people who failed to treat Daisy have the same realisation.
Find out more about Mencap's 'Death by indifference' campaign