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TRAPPED; EXCLUSIVE NHS red tape leaves Alex, 13 stuck in hospital for a year.

Byline: By Chris Musson

A PARALYSED boy has been trapped in hospital for a year - while pounds 50,000 of medical gear lies unused at his home.

Alex McGregor is stuck in a ward 30 miles away because of red tape.

Alex, 13, said yesterday: "I just want to go home and be with my mum. The nurses are great here. I love them.

"But I'malways left here when everybody else is getting out of hospital. I want it to be my turn."

Health and council bosses have been unable to sort out the 24-hour care Alex needs to go home. He has a rare, incurable growth-related condition and low life-expectancy.

His widowed mum Joanne - whose husband Alex died of throat cancer aged 41 in 1999 - now fears her son will die in hospital.

She travels four hours a day on buses from Irvine, Ayrshire, to see Alex. He has been in Yorkhill children's hospital since early 2007.

Joanne said: "I know that he might not live much longer. But we would rather he died at home than in hospital.

"It's diabolical that we've got all this hospital equipment at home for Alex but they can't find the staff to watch him.

They say Alex needs two carers at all times but they can't make the rota work.

"They've been fobbing us off saying they have 'a plan'. I'm scared it will be too late if they ever get round to it."

Meanwhile, Alex faces a 60-mile round trip in a taxi from Glasgow to get to school five days a week. It costs pounds 120 a day.

Alex, who is on a ventilator, was born with Morquio Syndrome. It causes growth problems, dwarfism and spinal deformities.

Alex led an active life despite multiple operations as an infant.

Doctors predicted he could live a normal lifespan if he received the right care. But complications arose after an op intended to stop his head tilting back in Manchester in December 2006.

Joanne said: "The consultant said it had gone like a dream.

"But then Alex was sick during the night while he had the halo and cage round his head. He was stuck lying on his back and couldn't move so he choked on his vomit.

"They thought he was going to die and he had to go to theatre straight away.

"He was left paralysed and breathing through a ventilator for the rest of his life.

His life has been drastically shortened."

Alex was in intensive care in Manchester for a month and was transferred to Yorkhill in early 2007.

North Ayrshire Council social services and the NHS got the equipment installed in the family's home in early 2008.

Mum-of-five Joanne lives there with daughters Melissa, 16, and Helen, 14.

Alex's brother Shane, 19, and sister Lynsey, 17, have moved out.

The living room was converted into Alex's bedroom, complete with dozens of photos of Alex. Many feature stars who have visited Yorkhill, including the band McFly and players from Rangers, Alex's favourite team.

The set-up includes a pounds 40,000 bed which tilts in different directions, heats up, and provides massage therapy. There is also a hoist to get Alex into his bath.

There are medical supplies and a suction machine for use with the ventilator.

Alex came home for six weeks in spring 2008. He was watched round the clock by a nurse and for one shift a day by his mum, who was trained to use the gear.

But he had to be taken back to hospital after he began choking last June.

Joanne said: "After that, they said he would need two nurses at all times. Since then he's been home once, for three hours on his birthday in February."

Yorkhill presented plans to the Ayrshire agencies last year to enable Alex to go home. But the council and Ayrshire health board have failed to agree on who will pay for the care.

An NHS Greater Glasgow and Clyde spokesman said: "We will continue to provide the best possible care for Alex at Yorkhill until a funding package between North Ayrshire Council and NHS Ayrshire and Arran can be agreed for his care."

NHS Ayrshire and Arran did not respond to a request for comment.

A council spokesman said: "We are working with the NHS to endeavour to provide appropriate medical support to allow this child to be cared for at home."

CAPTION(S):

ORDEAL: Alex and his mum Joanne in Yorkhill hospital; ACCESS RAMP It runs up to Alex's front door but he has only managed two brief home visits in two years; SUPPLIES Two sets of drawers full of medicines and other kit; SUCTION UNIT This machine clears Alex's ventilator if it gets clogged; BRAVE SMILE: Alex has a rare condition and does not have long to live; DESPAIR: Mum Joanne in the living room that has been packed with expensive hospital equipment. Below right, Alex and another patient with heroes McFly; BATH This has been set up next to a mobile shower unit; HOIST Fitted to the ceiling to help move Alex to the bath; pounds 40,000 BED State-of-the-art, it tilts in different directions, heats up and provides massage therapy PICTURE: PHIL DYE
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Publication:Daily Record (Glasgow, Scotland)
Geographic Code:4EUUK
Date:Mar 19, 2009
Words:871
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