Anna Marie Davies was born with a rare brain disorder and doctors gave her only two to three years to live. She suffers fits and school staff had been told to leave her for up to three minutes if she suffered one, a policy her guardians say would have, in effect, left her to die.
For a year her guardians have kept her from Ysgol Crug Glas state school in Dyfany, Swansea, which has been racked by allegations from parents over treatment of pupils. Anna Marie's guardians are seeking a judicial review of the school's provision for her.
Elizabeth Jones, the headteacher, has said in a letter that she and other staff believe it "is immoral" to resuscitate dying children and terminally ill children should be left to die with dignity.
Disturbing evidence over the care of some children at the school was revealed in a Channel Four News investigation last night. Now parents and the Disability Awareness In Action campaign group want an independent inquiry.
Ysgol Crug Glas teaches 50 children, from two to 19. Education authority inquiries have cleared the school twice of allegations. Some parents say the investigations were inadequate.
Bunny Pinnington, the school nurse from 1993, said: "I blew the whistle on the very serious concerns I had. I felt a professional, moral and ethical obligation."
In May 1997 Mrs Pinnington was instructed about resuscitating collapsed children. She said: "I was extremely concerned about the instructions I was given verbally and in writing."
Mrs Pinnington complained. Education investigators said her claims were unfounded, and there was no evidence of a non-resuscitation policy.
In March 1998, Mrs Pinnington saw instructions about Anna Marie, saying if she had a fit she was to be left for three minutes before resuscitation. Anna Maria's grandparents complained, the policy was withdrawn and another inquiry found no evidence of a non-resuscitation policy "overtly or covertly, in practice or by default".
The Davies family now look after Anna Marie at home.
Other parents have expressed serious concern. Weem Dahan, 17, has cerebral palsy and needs fluid sucked from his chest regularly. In March hehad to be rushed to hospital. His father, Nageb Dahan, said: "His airways were blocked, he couldn't breathe and he was turning blue." An investigation that cleared the school was unacceptable, said Mr Dahan.
Another inquiry is being made over six-year-old Jade McAdam who also has cerebral palsy. Last October and again in May, her parents Richard and Tracy took her to hospital in pain after school. Jade has a hip problem and her parents believe staff should have called them immediately when they saw she was in pain.
Mrs Pinnington was sacked last week for absenteeism, a charge she denies. The headteacher, Mrs Jones, is ill and unavailable for comment. The council chief executive cannot comment until after the judicial review, but he said the case was being taken "very seriously".Reuse content