Monday, July 26, 1999 Published at 12:08 GMT 13:08 UK
Down's children 'denied heart surgery'
Children with Down' syndrome may face bias over heart surgery
People with Down's syndrome are being routinely turned down for life-saving heart operations because of blatant discrimination, say campaigners.
The government says the fact that a person has Down's syndrome - which puts them at greater risk of heart complications - should not be used as a criterion for considering whether they have heart surgery.
But the Down's Syndrome Association (DSA) says many surgeons appear to be taking decisions based on judgements about the worth of disabled people's lives, rather than on clinical grounds.
It estimates that two children a week are born with Down's syndrome in the UK and that about 50% will have some form of heart defect.
The DSA says the case of nine-year-old Katie Atkinson from Sheffield highlights a situation which affects many people with the condition.
Katie's father says she has been denied a heart transplant.
Leeds general infirmary says referring Katie to a specialist heart transplant centre could raise false hopes as she was unlikely to get onto a waiting list.
A spokesperson said: "We understand that there have been no cases of children with Down's syndrome undergoing a heart transplant in this country".
It says the decision is usually taken because of the shortage of hearts suitable for children, concerns that people with Down's syndrome will not be able to cope with the complicated drugs procedure required after surgery and the belief that children with Down's do not have a long life expectancy.
But the DSA says this is incorrect.
A spokeswoman said the average life expectancy of a person with Down's syndrome was 60 plus.
And successful heart operations on Down's patients had been carried out in the US.
Carol Boys, chief executive of the DSA, said: "Judgements are being made and decision are being taken which are not based on clinical criteria. That is discriminatory.
"People are not being allowed access to the referral list because judgements are being made about the worth of their lives."
The DSA plans to meet with the Department of Health in the next few weeks to discuss how they can best get this message across to doctors and encourage them not to impose blanket bans on people with Down's syndrome.
A spokesman for the Department of Health said the government had written to all heart transplant units in 1996, telling them not to discriminate against Down's syndrome patients.
He said all had given assurances that they did not.
"The problem is there is a shortage of donors in the UK," he added.
The government is currently working on a national service framework for people with cardiovascular disease which will cover all aspects of treatment, including equity of access.
And in Scotland, a working group is drawing up a national protocol on the treatment of chronic heart disease whose aim is to ensure access to treatment is based on purely clinical grounds.
Clinical decisions about whether to go ahead with heart transplant surgery are made by individual transplant centres.
The UK Transplant Support Service Authority sets down broad operating principles about transplants, covering the age, size, weight and blood group of prospective transplant patients.
But it says clinical decisions are up to each individual transplant centre.
A spokeswoman said a decision not to refer a patient with Down's syndrome could be based on many different factors and may not be discriminatory.