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Last Updated: Friday, 11 July, 2003, 23:24 GMT 00:24 UK
Lung children 'stranded on wards'
Hospital scene
Some children grow up living in hospital
Children who need machines to help them breathe have to live long-term in hospital because home care is not available, says a charity.

Support for parents and carers at home is "grossly inadequate" and being forced to stay in hospital unnecessarily is a violation of a child's human rights, says Barnardo's.

Accident or illness can mean that a child will need mechanical ventilation - a machine to help them breathe - for the foreseeable future.

While there are fewer than 250 children in the UK known to be in this situation, the numbers are growing as medical advances allow more to survive longer, says Barnardo's.

A key objective of the government is to minimise the length of stays in hospital by making sure that the right services are in place for them to live at home.

Their experience of prolonged hospital stays is clearly unacceptable and indeed a violation of their rights
Professor Al Aynsley-Green, National Clinical Director for Children
However Barnardo's says that in many cases children are unable to leave hospital even though their condition is stable.

Its report "Breathing Space", published this week, said: "Long-term ventilated children often spend long periods, in some cases years, in hospital, when they no longer have a medical reason to be there.

"These environments are inappropriate places for children to grow up.

"They experience a lack of privacy, become witnesses to the constant horrors of intensive care and miss out on large parts of their schooling."

Court wrangle

It highlighted the case of "Lucy", aged two-and-a-half, who was born with a spinal defect which affected her ability to breathe and feed.

She spent a total of 548 days in hospital - the last seven months were spent waiting for the outcome of a court case as local authorities argued over who should pay for her home care.

Now at home, her condition has improved greatly, and she is slowly being weaned off her ventilator a few hours at a time.

Cheaper option

Barnardo's points out that the cost of keeping a child on long-term ventilation at home is far smaller than that of staying in hospital.

The estimated home cost is between 160,000 to 180,000, while an ordinary bed in Great Ormond Street Hospital's Transitional Care Unit is 258,420 a year.

The cost of a year in intensive care ranges between 438,000 to 657,000 depending on location.

The government has appointed a National Clinical Director for Children, Professor Al Aynsley-Green.

He said that he supported the Barnardo's campaign for more home care for these children.

"Their experience of prolonged hospital stays is clearly unacceptable and indeed a violation of their rights.

"The support needs of these children and their families are indeed complex, requiring a co-ordinated approach across health, social care, education and housing.

"The packages of care they need are often expensive and yet provision of funding can sometimes appear patchy and inadequate."

He said that he would work in partnership with the charity to try to improve matters.

Push on children's healthcare
10 Apr 03  |  Health

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