Families seek damages over CJD deaths: Tim Kelsey reports on accusations that the health department was negligent in the manufacture of a growth hormone given to 2,000 children

TWO YEARS AGO, Patrick Baldwin, a Royal Navy engineer telephoned his parents from Portsmouth. He had a bad cough. His father thought nothing of it. Several weeks later, Patrick's brother told his father that there was something seriously wrong. Patrick had lost his sense of balance.

Royal Navy doctors could find nothing wrong with him. Finally they diagnosed Creutzfeldt-Jakob disease, an incurable illness that progressively destroys the brain but which is undetectable in the blood.

Patrick died just before Christmas last year. He was 29 and left two daughters, aged 6 and 7. He died by degrees: first he lost use of his limbs, and then his sight. As the months wore on, he lost his speech and then all control over his nervous system. 'He became just like a vegetable,' said his father, Noel, a British Rail manager in Lincolnshire.

Shortly before Patrick died, Mr Baldwin saw a newspaper article which disclosed that the disease might be associated with the hormone injections that Patrick had received as a boy to help him grow. Mr Baldwin then discovered that eight others, who had had the same course of treatment, had died.

Next month, the Lincoln coroner is to hold a public inquest into Patrick's death. It will be the first of its kind - there was no inquest into any of the eight earlier deaths.

The hearing is likely to be a turning point for the 2,000 young adults who underwent growth hormone treatment as children. The Institute of Child Health warned them last year that they were at risk of CJD.

The families argue that none need have died - or been put at risk - if the Department of Health had taken proper precautions in the manufacture of the growth hormone. Fifty families have been granted legal aid and are shortly to start proceedings against the Department of Health for medical negligence. The department denies liability.

An Independent investigation has produced evidence that the hormone was contaminated because there were no proper safeguards on the way in which it was made - despite prevailing medical knowledge which suggested a risk of transmitting CJD.

The therapy, which used an extract taken from human pituitary glands to promote growth, was first introduced in the late 1950s. And it worked. Patrick, for instance, put on eight inches.

But in 1968, 10 years after the hormone went into production, scientists researching CJD discovered that the disease could be transmitted through brain tissue.

By the 1970s there was clear evidence that the disease could be spread by brain tissue and other organs, including the cornea of the eye.

In 1985, after three people died in the United States from the disease, the therapy was stopped in Britain. A synthetic alternative replaced the human gland. Shortly afterwards, the first British casualty, a man aged 22, died. Scientists believe the cause is clear: the hormone therapy was infected with CJD because organs used to make it were taken from bodies of those who died from the disease.

In 1981, the Department of Health produced guidelines which recommended that no organs from CJD cadavers should be removed. But even after this, staff in four large mortuaries in the South-east say they were unaware of them.

Ivan Biddle spent nearly 20 years working in the mortuary at Barnet General Hospital. His mortuary also took cadavers from six mental hospitals in London and Hertfordshire, and he collected pituitaries from mortuaries at four neighbouring hospitals.

The incidence of CJD remains extremely low, but as a result of these collections the mortuary at Barnet dealt with the illness and other degenerative diseases of the brain with higher than usual frequency.

From 1970, Mr Biddle was collecting pituitaries from all the bodies coming into his mortuary. The glands - which were removed without permission of relatives, a technical breach of the Human Tissue Act - were stored in acetone and sent to Cambridge for processing into growth hormone.

'At no time . . . was I aware of the existence of any oral or written guidelines for the collection of these pituitary glands,' Mr Biddle said.

Three other mortuary workers who asked not to be named said they had not seen any guidelines on collection of the glands.

Last year, Mr Biddle approached the department to ask for permission to give his account to the families campaigning for compensation. He says he was told not to by a senior official because he would be breaching his duty of confidentiality.

One parent, Maureen Newman, wrote to Virginia Bottomley, Secretary of State for Health, asking for an interview. She sent her letter recorded delivery in September 1992, but has not yet received an acknowledgement. Her son, Terry, died in 1990. 'They knew there was a slight risk even in 1968,' she said. 'Now they should come out and say: 'It's our mistake'.'

Noel Baldwin hopes that the inquest into his son's death will force the department to acknowledge its responsibility.

'They would say that it wasn't their fault. All I really want is for someone to sit in front of me and explain why my son died,' he said.

(Photographs omitted)