Cot death families plead for support

Parents want a more co-ordinated approach

Parents of cot death babies are calling for a shake-up in the "inadequate" response they receive after the tragedy.

Many feel let down by the lack of information and attention they receive from coroners, doctors, police and pathologists.

They say the type of treatment they encounter is a lottery, with some parts of the country faring better than others.

The Foundation for the Study of Infant Deaths (FSID) is campaigning for a multi-agency approach to improving services for families affected by sudden infant death syndrome.

Publishing a survey of 3,000 parents across the UK, FSID found most couples want a new, co-ordinated and comprehensive approach from professionals.

The system for responding when a baby dies unexpectedly at home is inadequate

Joyce Epstein, FSID director

Mike Wingfield, whose baby son Christopher suffered a cot death in 1984, said parents' experiences were very varied.

He said: "The system is very patchy.

"It is a geographical lottery.

"I think in certain areas there's a very good support system where professionals explain things in plain terms.

"Christopher was born prematurely. He died of pneumonitis. He was 12 weeks old.

"But I didn't see a paediatrician until two weeks after his death."

Manifesto for change

Having contact with experts shortly after a child's death is vital for bereaved parents, says FSID.

It has drawn up a manifesto for change:

A paediatrician should visit each family within 24 hours of the death to take a complete medical history and offer initial support to the family.

All post mortem examinations should be done by a paediatric pathologist, a specialist in babies' disorders, who will perform the full range of tests on babies who have died.

All the professionals who were involved with the family or the baby, including the GP, paediatrician, health visitor and pathologist - should meet and review all available information in order to learn as much as possible about why that baby died and plan future support for the family.

FSID's director Joyce Epstein said: "The system for responding when a baby dies unexpectedly at home is inadequate.

"If a general pathologist, instead of a paediatric pathologist, does the post-mortem, the diagnosis will be quicker because they perform fewer tests, but it will be wrong in 20% of the cases.

Mike Wingfield: geographical lottery

"We need more `joined up' ways of working, with professionals talking to each other.

"We have a duty to babies who die to find out as much as possible about why."

But it will take time for the changes to be implemented.

Investment

Consultant paediatrician Chris Bacon said: "There is no nationally agreed system for coping with cot death.

"It's going to be difficult to get a universally applied approach but the foundations are there and views are being considered."

A spokesman for the Department of Health commented: "Families affected by cot death received support from a range of health and social care professionals.

"We are looking at ways in which the investigation of these deaths can be improved.

"We are aware that the lack of paediatric pathologists is a cause for concern and have invested £28m over the last three years to modernise pathology services and increase the number of pathologists - particularly within paediatric pathology.

"We are already seeing signs of progress as a result of the extra investment."

A telephone support service is available, staffed by trained volunteers, to help bereaved parents, who have experienced cot death. The Child Death Helpline 0800 282986