Ian Copete, 41, who is hooked up to a kidney dialysis machine, faces an energy bill nightmare – but says his young daughter keeps him warm with blankets and cuddles.
Mr Copete, from High Wycombe, says hugs and hot drinks from Lyra, nine, are giving him the heat he needs as their household energy bills soared from £150 to £400-a-month.
He says it has left them with no choice but to leave the heating in their small two-bed flat – that he lives in with Lyra and his wife Heather – off until December.
The family sometimes rely on heat from the oven when it’s on.
The primary school teacher has suffered from chronic renal disease since he was born – causing him to have had four kidney transplants in his life.
Ian Copete, 41, who is hooked up to a kidney dialysis machine, faces an energy bill nightmare – but says his young daughter keeps him warm with blankets and cuddles
Due to NHS cost-cutting measures, he can only do dialysis for the minimum-required 12 hours in hospital each week, rather than the 20 hours per week he needs to stay healthy enough to work.
As a result he has to choose between dialyzing at home at huge expense to stay healthy enough to work, or not working.
The energy price cap has barely affected him as it is based on average energy use per month, leaving the family massively out of pocket even with Government welfare support.
Mr Copete said: ‘It’s terrible but I almost feel lucky to have had the condition all my life, because it has meant I can push through and I’m used to how I feel – where other patients may experience such shock at the symptoms and most cannot work.
‘I try to do up to 20 hours of dialysis a week because obviously the more you do, the better you feel and healthier you are.
‘Normal kidneys work all the time, but mine are totally inactive, so in effect the only time I have any renal function is while I’m on the dialysis machine.
Pictured: Mr Copete under blankets while on dialysis, as his bills soar from £150 to £400-a-month
‘My wife is very good at heat saving ideas; we have big thick curtains to conserve heat, we leave the oven open after we use it to get free heat, and we use the dryer to heat our house and dry our clothes at once.
‘It’s better than nothing, and we have a lot of blankets. We should be able to have the heating on – but we’re determined to try and see it through to December because we can’t afford it.
‘My daughter Lyra will come and bring me blankets, she’ll make me a hot drink, give me a cuddle, she’s been amazing.
‘But she shouldn’t have to – we should be able to afford to turn on the heating.
‘She’s even helped when I’ve had major bleeds before or even seizures during dialysis because my blood pressure dropped so low.
‘She’s an incredible little girl, and she deserves the attention and getting to see the Christmas lights and me being at home.
‘We just want to give her as much of a life as we can because she earns it on a daily basis.’
Mrs Copete says she feels helpless watching him shiver under a blanket.
says it has left them with no choice but to leave the heating in their small two-bed flat – that he lives in with daughter Lyra and wife Heather – off until December
She said: ‘Lyra is so good with him, she wraps him up in a blanket and she cuddles him to keep him warm.
‘We just pull together as a team because it’s the only way we can get through these difficult times.’
Mr Copete says that cost saving measures and demand from patients in NHS hospitals for dialysis has meant that patients are experiencing a ‘shadow tax’ on their health by paying the energy bills needed to stay healthy and work.
He said: ‘My wife has to start Christmas shopping in January after the following Christmas so we have stuff to get her – we have to think that far in advance.
‘The issue a lot of people who have to dialyse are having now is that they have the fear of doing it themselves at home, combined now with the cost, which means that a lot now only want to do it in hospital.
‘I don’t mind going to hospital, but I don’t like being away from home and my daughter.
‘I’ve missed two of her birthdays and a new years because I’ve been in hospital before, which is terrible because there is nothing I can do about it, so when I can be at home I want to be at home.
‘The announcement from the Government the other day to increase the aid we get in line with inflation doesn’t affect us until April, so that doesn’t really help us out as we’ll be through winter already.’