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)

Start your day with The Independent, sign up for daily news emails
Lucerne’s Hotel Château Gütsch, one of the lots in our Homeless Veterans appeal charity auction
charity appeal
Arts and Entertainment
Tony Hughes (James Nesbitt) after his son Olly disappeared on a family holiday in France

Jo from Northern Ireland was less than impressed by Russell Brand's attempt to stage a publicity stunt

Scunthorpe goalkeeper Sam Slocombe (left) is congratulated by winning penalty taker Miguel Llera (right)
Have you tried new the Independent Digital Edition apps?
ebooksNow available in paperback
Arts and Entertainment
The Apprentice candidates Roisin Hogan, Solomon Akhtar, Mark Wright, Bianca Miller, Daniel Lassman
tvReview: But which contestants got the boot?
Life and Style
A woman walks by a pandal art installation entitled 'Mars Mission' with the figure of an astronaut during the Durga Puja festival in Calcutta, India
techHow we’ll investigate the existence of, and maybe move in with, our alien neighbours
Arts and Entertainment
Jim Carrey and Jeff Daniels ride again in Dumb and Dumber To
filmReview: Dumb And Dumber To was a really stupid idea
Arts and Entertainment
Sir Ian McKellen tempts the Cookie Monster
tvSir Ian McKellen joins the Cookie Monster for a lesson on temptation
Tourists bask in the sun beneath the skyscrapers of Dubai
travelBritish embassy uses social media campaign to issue travel advice for festive holiday-makers in UAE
Arts and Entertainment
Jennifer Saunders stars as Miss Windsor, Dennis's hysterical French teacher
filmJennifer Saunders and Kate Moss join David Walliams on set for TV adaptation of The Boy in the Dress
Nabil Bentaleb (centre) celebrates putting Tottenham ahead
footballTottenham 4 Newcastle 0: Spurs fans dreaming of Wembley final after dominant win
Life and Style
Jimmy Mubenga died after being restrained on an aircraft by G4S escorts
voicesJonathan Cox: Tragedy of Jimmy Mubenga highlights lack of dignity shown to migrants
Life and Style
Sebastian Siemiatkowski is the 33-year-old co-founder and CEO of Klarna, which provides a simple way for people to buy things online
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating

By clicking 'Search' you
are agreeing to our
Terms of Use.

iJobs Job Widget
iJobs General

Ashdown Group: Helpdesk Analyst

£25000 per annum: Ashdown Group: An established media firm based in Surrey is ...

Ashdown Group: Java Developer - Hertfordshire - £47,000 + bonus + benefits

£40000 - £470000 per annum + bonus: Ashdown Group: Java Developer / J2EE Devel...

Ashdown Group: Head of Finance - Financial Director - London - £70,000

£70000 per annum: Ashdown Group: Head of Finance - Financial Controller - Fina...

Recruitment Genius: Business Development Executive - Nationwide - OTE £65,000

£30000 - £65000 per annum: Recruitment Genius: This small technology business ...

Day In a Page

Jeb Bush vs Hillary Clinton: The power dynamics of the two first families

Jeb Bush vs Hillary Clinton

Karen Tumulty explores the power dynamics of the two first families
Stockholm is rivalling Silicon Valley with a hotbed of technology start-ups

Stockholm is rivalling Silicon Valley

The Swedish capital is home to two of the most popular video games in the world, as well as thousands of technology start-ups worth hundreds of millions of pounds – and it's all happened since 2009
Did Japanese workers really get their symbols mixed up and display Santa on a crucifix?

Crucified Santa: Urban myth refuses to die

The story goes that Japanese store workers created a life-size effigy of a smiling "Father Kurisumasu" attached to a facsimile of Our Lord's final instrument of torture
Jennifer Saunders and Kate Moss join David Walliams on set for TV adaptation of The Boy in the Dress

The Boy in the Dress: On set with the stars

Walliams' story about a boy who goes to school in a dress will be shown this Christmas
La Famille Bélier is being touted as this year's Amelie - so why are many in the deaf community outraged by it?

Deaf community outraged by La Famille Bélier

The new film tells the story of a deaf-mute farming family and is being touted as this year's Amelie
10 best high-end laptops

10 best high-end laptops

From lightweight and zippy devices to gaming beasts, we test the latest in top-spec portable computers
Michael Carberry: ‘After such a tough time, I’m not sure I will stay in the game’

Michael Carberry: ‘After such a tough time, I’m not sure I will stay in the game’

The batsman has grown disillusioned after England’s Ashes debacle and allegations linking him to the Pietersen affair
Susie Wolff: A driving force in battle for equality behind the wheel

Susie Wolff: A driving force in battle for equality behind the wheel

The Williams driver has had plenty of doubters, but hopes she will be judged by her ability in the cockpit
Adam Gemili interview: 'No abs Adam' plans to muscle in on Usain Bolt's turf

'No abs Adam' plans to muscle in on Usain Bolt's turf

After a year touched by tragedy, Adam Gemili wants to become the sixth Briton to run a sub-10sec 100m
Calls for a military mental health 'quality mark'

Homeless Veterans campaign

Expert calls for military mental health 'quality mark'
Racton Man: Analysis shows famous skeleton was a 6ft Bronze Age superman

Meet Racton Man

Analysis shows famous skeleton was a 6ft Bronze Age superman
Garden Bridge: St Paul’s adds to £175m project’s troubled waters

Garden Bridge

St Paul’s adds to £175m project’s troubled waters
Stuff your own Christmas mouse ornament: An evening class in taxidermy with a festive feel

Stuff your own Christmas mouse ornament

An evening class in taxidermy with a festive feel
Joint Enterprise: The legal doctrine which critics say has caused hundreds of miscarriages of justice

Joint Enterprise

The legal doctrine which critics say has caused hundreds of miscarriages of justice
Freud and Eros: Love, Lust and Longing at the Freud Museum: Objects of Desire

Freud and Eros

Love, Lust and Longing at the Freud Museum