Hospices fear services for dying children will be cut as energy bill support ends

London and Surrey's Shooting Star children's hospices' energy bills are expected to grow so large that they may have to cut the number of beds available to dying children unless extra support is given, reports ITV News London's Helen Keenan

Hospices which provide crucial end of life care for children and babies fear they may have to reduce the number of respite care beds for dying children as they face a £140,000 energy bill hike.

London and Surrey-based Shooting Star children’s hospices are calling for extra support so they can continue providing round the clock care for children with life-limiting conditions.

Their energy bills are set to more than double from £90,000 to £230,000 by the end of September putting nurses and services at risk.

Jeremy Hunt confirmed in Wednesday's Budget that from April 1, the government’s energy support scheme for businesses, including hospices, will end and they instead will be eligible to receive a smaller discount under the new Energy Bill Discount Scheme.

Hospices are "classed in the same way as a pub or a restaurant not as an energy intensive organisation like a hospital" and were facing crippling bills as a result, Paul Farthing, chief executive as Shooting Star children hospices told ITV News London.

Albie and his father, Dan, rely on the Shooting Star hospices.

The extra funding the government had been providing was the equivalent of three nurses, and that the end of the support could mean "hundreds of respite nights lost each year", Mr Farthing said.

"We are looking after very complex children. We have to make sure we're using the same sort of technology as a hospital would use: monitoring equipment, ventilators; we have oxygen machines - so it's an energy intensive operation."

Mr Farthing said the hospices were taking energy efficient measures, including installing solar panels, but their priority was to make sure they provided "a safe and warm environment for our children".

He said he is most worried about the families, already facing intense pressure from rising energy bills and food inflation who were "really struggling".

Shooting Star Children's Hospices' annual energy bill is set to more than double. Credit: ITV News London

"They have particular concerns and demands on their purse because of the nature of the children they're looking after," Mr Farthing said. A recent survey undertaken by the hospice found that 40% of families were "very anxious" about their financial prospects. Albie, 7, and his family are among those who rely on the hospices for treatment, care and as a place to relax.

Albie, who has Costello syndrome, requires around the clock care. He first started attending Shooting Star Children’s Hospices about five years ago and comes in for day and overnight respite stays.

His family say the hospice has been a "lifeline", a safe space where Albie gets to be himself and they all get vital support.

Albie's father, Dan Burton, told ITV News London he was frustrated after it was confirmed in the Budget that hospices would not be receiving more energy bill support than other businesses.

"It doesn't make sense to us. This isn't a luxury setting. Although we're treated like royalty - and we're treated beautifully - it's when you're in your need, it's at a dark place.

Albie gets to be himself at Shooting Star hospices. Credit: ITV News London

"You think of hospices and you think of palliative care. And, yes, palliative care and support is a huge integral part, but day-to-day living, making memories, is a huge part of Albie's life.

"Albie has a condition that is life-shortening, we don't know how much life he's got, we want to make every single moment count.

"This is a huge part of doing that, and if that's slowly being chipped away or the support isn't been given, you're going to take it personally. This is something we need. To know that could be lost or taken away is hugely detrimental."

A government spokesperson said: “We know this has been a difficult time for families and the organisations which support them, including hospices.

“That’s why we provided hospices and other non-domestic energy users with an unprecedented package of support over winter.

“The energy support we’ve pledged from April onwards reflects the fact that wholesale gas prices have almost halved since the current scheme was announcedand will mean a discount on high energy bills until March 2024.”

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