Home dialysis patients are facing the grim choice between heating, eating and surviving as extra energy costs for their machines are set to rise by £787 in October.
And they face a double whammy of worry because NHS reimbursement is so patchy.
Fiona Loud of Kidney Care UK said: “Some hospitals pay everything, others something and some nothing.
“This is just not good enough. Dialysis is a life-maintaining treatment and these people need all the support they can get.
“We are campaigning for full, fair timely and consistent reimbursement.”
Dawn White, 59, of Canvey Island, Essex needs 20 hours of dialysis a week to stay alive while she waits for a transplant.
Her renal nurse estimates the cost of the electricity and water her machine needs to operate at £200 a month.
But four years after starting home haemodialysis treatment with husband Paul as full-time carer she is yet to see a penny from Southend hospital.
The mother of three and grandmother of two said: “We are still waiting for the funding.
“It’s now extremely hard to cover the electricity dialysis cost. We’re saving the NHS a fortune by dialysing at home. But without help I may be forced to attend hospital again.”
A spokesperson for Mid and South Essex NHS Trust said: “We are currently finalising our policy to enable patients to claim reimbursement in the coming weeks.”
There are 30,000 patients who now need dialysis and 5,000 of them do so at home, some for 35 hours over six nights a week which lowers the risk of death and improves quality of life..
They are also particularly susceptible to the cold because of their anaemia. The alternative to home dialysis is three hospital sessions a week of four hours each.
But Kidney Care UK says when the energy price cap went up £693 in April kidney patients faced extra costs on top of their domestic bills of between £593 and £1,451 a year depending on how many hours they used their machines.
As electricity is set to rise from 28p to 47p a unit in October that will range from £967 to £2,238, an eye watering sum which will almost double if the energy price cap hits £5,500 next year as predicted.
And they are not the only ones. Although pulmonary fibrosis sufferer Geoff Gardner, 62, of Sandhurst, Berks was only given a year to live in 2018 he is still battling with the help of 24 hour a day liquid and concentrated oxygen.
The former construction site manager is now paying £120 more a month for his domestic energy, and gets £55 a month from the NHS for his oxygen. But he says when prices rose he was left £73 short over three months.
He added: “I hope the NHS is on top of this but I’m not confident. The right hand never seems to know what the left is doing.
“But I can’t do without oxygen so I will have to pay whatever happens.”
Former family support worker Kimberlee Cole, 66, of Eastbourne, East Sussex has electric bills of £180 a month and gets no help for the extra she must pay for the nebuliser she uses three times a day to clear her lungs of mucus.
She said: “We’ve already stopped putting lights on but If the bills keep going up I’ll have to cut out one of the sessions. That means I won’t be able to function as well as I do now.”
Sarah Woolnough, boss of Asthma + Lung UK , said: “People with lung conditions are having to make a stark choice between heating, eating or using life-saving medical devices,
“Without help thousands are at risk of being priced out of breathing.”
Neil Garbett, 65, of Biddulph, Staffs lives on a £250 a week deputy head teacher’s pension and drives 90 miles each week to University Hospitals of North Midlands for three sessions of dialysis.
He is yet to be reimbursed for the £35 a week he spends on petrol despite saving the hospital £60 taxi fares or the costs of hospital transport for each trip.
The married father of two grown up children said: “I know I should get a refund but it feels like banging my head against a brick wall.
“I feel wiped out by the treatment alone and the last thing I need is this stress.”
UHNM Chief Nurse Ann-Marie Riley said: “We are very sorry for the delays. Mr Garbett’s concerns will be fully investigated and the issues addressed quickly.”
And he points to the promise made a year ago by NHS England which said: “A patient or their family will be offered appropriate transport or be able to claim a refund of reasonable travel.”
Ms Loud added: “People can’t wait while hospitals mess around like this.
“It’s a combination of administrative inefficiency, perceived shortage of money and a lack of knowledge about what is needed which is letting people down.”
MPs are also pressing the government to sort out the chaos and Keir Starmer has twice confronted Boris Johnson over the shambles.
The Labour leader raised the case of home dialysis patient Phoenix Halliwell saying: “He feels like he is being priced out of existence.”
Labour’s Feryal Clark said: “People have to shut off their heating or skip meals just to be able to afford their vital treatment.
“Reimbursement is inconsistent across the country. Many patients receive no or very little financial support.”
A DHSC spokesperson said: “We are committed to supporting kidney patients with the pressures of the cost of living.
“NHS England is working closely with all providers to ensure consistent measures are in place for the reimbursement of utility costs.”
