Energy prices: Family struggles to meet bills for life-support sisters

The parents of two severely ill girls say soaring energy prices have left them struggling to meet bills for life-saving equipment.

Pam and Mark Gleave, from Amlwch, on Anglesey, have three adopted children who all depend on 24-hour life support.

Their energy bills have increased recently due to the children's medical needs becoming greater.

Betsi Cadwaladr University Health Board (BCUHB) said it would contact the family to see how it could help them.

Gas and electricity prices have risen in the UK this year due to a number of factors.

The couple, who have two grown-up biological children, adopted their children after some time fostering.

Katie, 19, and Kelly, 14, have PEHO syndrome - a rare and degenerative neurological condition which means they cannot walk or talk, and need constant care.

Mason, 12, has complex medical needs due to brain damage and is currently at Alder Hey Children's Hospital in Liverpool.

Kelly, Katie and Mason Gleave all rely on life-support machines which require a lot of electricity

In the daughters' room alone there are more than 60 plugs for medical equipment.

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Ms Gleave said: "Our electricity bill alone is £776 a month - that doesn't include heating or anything else.

"It's not normal for a family to have 38 pieces of medical equipment running 24 hours a day.

"We see things are going up and up. Where are we going to find that money?"

Mr Gleave, 61, was made redundant two years ago and was planning to use the money he received to pay off the mortgage, but since then the children's health has deteriorated and all three are on life-support machines at their home.

Pam Gleave said they are using her husband's redundancy pay to meet the costs

The machines must be charged constantly and back-up batteries are needed in case of a power cut.

"It's extremely difficult," said Ms Gleave.

"When Mark worked it wasn't an issue, he used to work seven days a week, we never asked for anything from anybody."

The family said if the children were being cared for in hospital, it would cost the health service about £2,000.

'Sell home first'

But Ms Gleave said while they has discussed the option of hospital care as the bills mount: "That's never going to happen - we would never let that happen."

She told BBC Radio Wales Breakfast: "We have got things that we would sell before that would even be a thought in my mind.

"We'd sell the house first."

All the carers and equipment are funded by Betsi Cadwaladr Health Board, but the equipment running costs are the parents' responsibility, and the couple fear they will not be able to cope without financial help.

They have asked for guidance from health staff but feel lost and do not know who to turn to for help.

Ms Gleave said: "All we are asking for - is there some way we can get some support, because it's not normal to have that amount of bills just to keep the children at home.

"For us it's all about keeping the children at home. It's about giving them to good quality of life.

"We've got a wonderful social worker, and I do know they are trying to look into it. But they, I think, are in the same boat as us. It's not happened before - so where do we go?"

Kelly Gleave and her siblings are all on home life support

Another concern is that the children's room in the conservatory is in poor condition and needs the roof replacing, but they do not want the move their children into separate rooms or into areas not adapted for them.

She said: "We seem to be fighting, and not getting the answers that we need.

"It's not about complaining or moaning, people have been wonderful, our social worker, our ventilator nurse. It's just we don't know where to turn, that's the honest truth, we don't know what to do.

"We don't know what the next few months is going to bring for the children, and that's a real worry.

"I would not in any way swap our lives with these beautiful children that are so amazing and keep you grounded.

"In a world that we live in today, honestly, they are amazing, wonderful children."

Dr Chris Stockport, executive director of primary and community care at BCUHB said he was very sorry to hear their concerns about their children's care.

"We are committed to working with them to provide the best possible care for their children and we will contact the family to see how we may be able to help further," he added.

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