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Cost of living crisis: Carolynne’s story

27 September 2022

This week, DR UK is highlighting the stories of Disabled people who are being chronically impacted by the cost of living crisis.

Carolynne lives in Scotland. Her daughter Freya is immobile, she is blind, she has peg feeding, which is where a tube goes directly into her stomach, she has epilepsy and a compromised airway.

Freya needs intensive support. She needs round the clock two-to-one nursing care. She is oxygen dependent. She has a permanent SATS monitor to gauge her oxygen levels and heart rate. She has a track and hoist, a powerchair, an electric bed and an electric bath. All of these things use power. Her care staff need to constantly sterilise equipment throughout the day and night. She needs two baths per day. She needs two bed linen changes per day, and multiple clothing changes per day, generating laundry. She has more auto generated procedures day and night. She needs an ambient room temperature of at least 24 degrees in the winter, and air conditioning running round the clock in the summer.

Carolynne said: “The energy price cap was set at £1,277 in March. It went up  to £1,900 which put my bills up to £400 per month. And now Liz Truss is trying to make everyone think she’s doing us a favour and now my bills are £530 each month. I can’t afford that. The bottom line is health and social care needs to start contributing to the extra charges which my daughter needs or else she will end up living in care.

“I can’t afford to heat the rest of the house. We just freeze. I couldn’t afford the energy even before the cap increased.

“I asked health and social care to support us before the price increases, but they did not. My house is an old local authority council house which isn’t energy efficient. It’s 300 years old with high ceilings. It’s expensive to heat.

“The staff who support Freya also need heating, so I have to pay for them to be warm. It’s causing animosity between me and my staff as I have to keep telling them to turn off unnecessary taps and heating. I pay for them to be warm – they can’t freeze all night, but I can. I don’t matter do I?

“Freya has a lot of washing – two bed changes per day and clothes which need washing and drying. We can’t hang things because of the damp and her breathing difficulties.

“I’ve not slept properly for months about this. Nobody seems to be bothered. They don’t care. But they will care when our children end up in hospital or in residential care when it costs £1,000 a night to stay in hospital. If they don’t fix this soon there’s going to be a health and social care crisis for our families. People won’t be able to look after their own children.

“I have high blood pressure and I fear I am heading for a stroke.

“I was referred to Citizens Advice for a £49 voucher They had run out. And they would have no impact on a £6,000 energy bill. The Scottish government doesn’t give local authorities the funds to support us. They need to ringfence funds for our families to help us get through this crisis.”