“Priced out of existence” – the true cost of living for people with kidney disease

In January 2022, inflation reached its highest recorded level in 30 years. Goods and services are more expensive for all households, not least for people living with kidney disease, many of whom have specific dialysis-related diets and feel the cold. Rising energy prices are a particular challenge. The April 2022 price cap increase has elevated what were already high prices, with a further rise expected in October.

When you’re struggling to deal with kidney disease, the additional pressures of trying to make ends meet and keeping your utilities on can make life very difficult. As many of you will know, people with CKD are anaemic and frequently feel cold, even in a warm room. Extreme fatigue often associated with CKD exacerbates this and makes it more difficult for people to keep themselves warm. The impact this has on heating bills is particularly felt by those who cannot work due to their condition.

People who undergo dialysis at home face a particular challenge from increased energy costs. Home dialysis has advantages for many people and increasing rates of home dialysis, both peritoneal dialysis and home haemodialysis, has been an NHS policy priority for some time. But without urgent action, we fear the energy cost crisis might mean it’s a choice only for those who can afford it.

Home dialysis can impact on water and energy bills. A typical household would have to have 75 baths per week (more than ten every day) to consume the same amount of water as a person who has nocturnal dialysis at home. Despite guidance existing on how NHS Trusts should reimburse the additional costs created by home dialysis, there is discrepancy across the UK – some people are not reimbursed at all, while some receive small amounts that do not even cover a few weeks’ worth of costs. We are grateful for the efforts of our NHS colleagues to support people on to home dialysis, and we know that in some Trusts they are installing meters on home dialysis machines, so people can be reimbursed in full. However we are also aware that some units give just £320 per year, or less. Some none at all.

At Kidney Care UK, we have created an online hub of practical advice, tips and information to help people with kidney disease and their families manage rising costs. We are also making more of our immediate £300 emergency grants available because when you are already struggling, an unexpected bill is likely to tip you over the edge. We know that many people with kidney disease were already struggling before these rises came into effect, but they will now feel them even more acutely. Kidney patients should not be unfairly penalised financially, purely because of their medical condition.

While we are highlighting the impact on those on dialysis at home, energy costs will hit everyone with kidney diseases and our grants, are available to people in need on dialysis and with transplants.

We are very concerned that the rising cost of energy might lead people to reluctantly consider going back into their nearest renal unit to dialyse or even ration their home dialysis sessions, which could be very dangerous. This situation is clearly unacceptable and in in direct opposition to the guiding principles of the NHS, which make it clear that access to NHS services is based on clinical need, not an individual’s ability to pay. Home dialysis should be an equal choice for all, regardless of your income or whereabouts in the UK you happen to live.

Recently we spoke to Phoenix, a nocturnal home dialysis patient of nine years. He dialyses five nights a week in the living room of the property he lives in with his wife Sam, an NHS midwife, and their daughter Rosie, 11.

Phoenix has been told that his bills will triple this year: “Like many families facing a cost of living crisis, we’ve already tried to shave off every expense. We’ve asked for financial help from family and have sold unwanted items to raise funds. The only remaining option was to turn the gas central heating right down to just 12 degrees celsius. Effectively, we have turned it off. When I dialyse, I need lots of extra layers to keep warm. At night I’m in thermal tops, multiple t-shirts, jogging bottoms and sometimes even a hat. Plus, I pile three blankets and a bulky sleeping bag over me. My living room is so cold, it might as well be outside.”

Phoenix is only reimbursed for a fraction of the amount it costs to run his machine: “Rising fuel costs are making just staying alive even harder and it feels like we’re being priced out of existence.”

We are contacting NHS Trusts around the country to urge them to review their home dialysis reimbursement policies.

In addition, we are encouraging them to signpost people with kidney disease to information about all sources of financial support to make sure they have access to everything to which they are entitled, including our online cost of living hub.

Saving money on energy bills: our top tips

• Turn appliances off standby
• Make energy efficient changes if you can
• Prioritise small repairs
• Don’t use more energy than you need to
• Turn off the sprinklers and hosepipe
• Make sure you’re on the right energy tariff for your use
• Sign up for the Priority Services Register
• Take regular meter readings
• Check you are getting all the benefits available to you
• Tell your supplier if you're worried about payment
• More advice about managing utility bills.

In 2021, we gave £549,000 in grants to more than 1,100 patients and their families, representing an increase in demand of 47% for these immediate hardship grants of £300. We are expecting a significant increase in requests for hardship support this year; many patients have raised concerns on social media about how they will be able to cope. Having listened to our beneficiaries, we have made a conscious decision to do more to support more patients at a time when our community needs more help than ever.

No one should face a choice of heating or eating, or feel excluded from home dialysis because they cannot afford it.

This article was first published in the April 2022 Journal of Kidney Care