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 of Amlwch, Anglesey, have three adopted children who all rely on life support 24 hours a day, seven days a week.
Their energy bills have recently increased due to the children’s increasing medical needs.
Meanwhile gas and electricity prices have risen in the UK this year due to a number of factors.
After some time fostering, the couple, who have two grown-up biological children, adopted their children.
Katie, 19, and Kelly, 14, have PEHO syndrome, a rare and degenerative neurological condition that causes them to be unable to walk or talk and necessitates round-the-clock care.
Mason, 12, is currently receiving complex medical care at Alder Hey Children’s Hospital in Liverpool due to brain damage.
In the daughters’ room alone there are more than 60 plugs for medical equipment.
- Gas prices: ‘I’m just watching the meter go up’
- Parents with learning disabilities ‘set up to fail’
- Learning disability work ‘barrier’
“Our electricity bill alone is £776 per month – that doesn’t include heating or anything else,” Ms Gleave explained. It’s unusual for a family to have 38 pieces of medical equipment running around the clock.
“We can see that things are improving. How are we going to get that money?”
Mr Gleave, 61, was laid off two years ago and planned to use the money to pay off the mortgage, but the children’s health has deteriorated and all three are on life-support machines at home.
The machines must be constantly charged, and backup batteries are required in the event of a power outage.
“It’s extremely difficult,” Ms Gleave said.
“It wasn’t an issue when Mark worked; he used to work seven days a week, and we never asked for anything from anyone.”
According to the family, if the children were to be cared for in a hospital, the health service would have to pay around £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.”
Betsi Cadwaladr Health Board pays for all of the carers and equipment, but the running costs of the equipment are the parents’ responsibility, and the couple fears they will be unable to cope without financial assistance.
They have sought advice from medical personnel, but they are lost and do not know who to turn to for assistance.
Ms Gleave stated, “All we’re asking is that there be some way we can get some help, because it’s not normal to have that many bills just to keep the kids at home.”
“It’s all about keeping the kids at home for us.” It is about providing them with a good quality of life.
“We have a wonderful social worker, and I know they are looking into it.” But, I believe, they are in the same boat as we are. “This has never happened before, so where do we go?”
Another source of concern is that the children’s room in the conservatory is in poor condition and requires roof replacement, but they do not want to move their children into separate rooms or areas that are not adapted for them.
“We seem to be fighting and not getting the answers we need,” she said.
“It’s not about moaning or complaining; our social worker and ventilator nurse have been wonderful.” It’s just that we don’t know where to turn, and we don’t know what to do.
“We don’t know what the next few months will bring for the kids, and that’s a real concern.”
“I would never trade our lives for these beautiful children who are so amazing and keep you grounded.”
“In the world we live in today, honestly, they are amazing, wonderful children,” she added.