New approach helps children on ventilators to go home

By Adam Brimelow
Health Correspondent, BBC News


Coming together at Christmas is especially hard for families with a child in intensive care.

Visiting restrictions in hospitals can separate parents and siblings, friends and relatives.

But staff at a London trust have found a way of halving the time in hospital for children who need a ventilator to breathe.

They say their approach is saving the health service millions of pounds.

Fourteen month-old Phoebe Langford has a rare respiratory condition called Congenital Central Hypoventilation Syndrome (CCHS) which means she stops breathing when she sleeps.

Christmas together

Most children in her condition would be stuck in intensive care. But she is already home in Bromley with her parents and four siblings, getting ready for a lively family Christmas.

Her father John says they are all delighted to have her home.

"It means that we can all be in the same place at once.

"We haven't got to go to hospital to see Phoebe to have a Christmas with her. The children haven't got to wait for us to come home.

"We will have our Christmas like a normal family would do, which is very pleasing because we can all enjoy ourselves."

Phoebe has a small, portable ventilator set up next to her cot. In the last few years the kit has become smaller, more portable, and more sophisticated, giving patients and their carers greater freedom.

The Royal Brompton hospital in London has found that this equipment, backed up by the right training for parents and community health staff, helps to get children out of intensive care and settled at home.

John and his wife Pippa get regular help checking and setting the ventilator.

There's always access to expert advice and a healthcare assistant stays each night to keep an eye on Phoebe.

That is a big commitment for the family and for the health service, but the alternative is many more months for Phoebe in ICU.

Dr Gillian Halley, a paediatric intensive care consultant at the Royal Brompton, says it's incredibly frustrating to see children in the unit who should not have to be there.

"What the child really needs is to be out of hospital, to be in a home environment where they can be picked up and cuddled and played with, and have normal bedtimes and bathtimes and playtimes with the family and have their brothers and sisters around them."

Space for others

She and her colleagues have helped dozens of children like Phoebe to get home more quickly, halving the time spent in intensive care to as little as three months, and saving the trust hundreds of thousands of pounds per patient.

And she says once they are home the children invariably thrive.

"They develop better, they have more social skills, they have more time with their family.

"They have more playtime and quite often we see an improvement in their physical condition as well.

"The lung function improves and we can start to wean them off the ventilators because they've been at home and getting all that stimulation from the parents and the family and visitors to the home."

Dr Halley says getting these children out of hospital also frees up intensive care beds for others who need the highly specialised support they can provide.

The Health Secretary for England, Andrew Lansley, said it was "fantastic" to see what the scheme had achieved.

"This project not only allows families to be together for Christmas, but shows how treatment can be more effective and efficient, reducing the cost which means savings can be channelled back into the NHS to improve services further."

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