Lack of reimbursement leaves HHD patients left out in the cold

Download the Left out in the cold report

The annual cost of running a dialysis machine at home can be as much as £1,000 or more, depending on type, frequency and duration of treatment. Even among people doing a similar amount of dialysis reimbursement payments vary hugely – between £160 and £1,040 per annum. Eight in ten (80%) of people on home dialysis who get reimbursement told Kidney Care UK that they felt it didn’t cover all the costs their treatment incurs. Some said they are considering stopping home dialysis to return to treatment in a unit, even though home dialysis is a treatment that works for them and is one that gives them a better quality of life.

Guidance from the National Institute for Health and Care Excellence (NICE) advocates home dialysis as a more cost-effective treatment than hospital dialysis and one which benefits and empowers people.

The Getting it Right First Time programme recommends a target of 20% of people on dialysis for home dialysis, which could save the NHS £5m per year.

Home haemodialysis can save the NHS around £10,000 per patient per year when compared with hospital-based dialysis; yet Kidney Care UK found that hospitals only reimburse, on average each year, around £10,000 per hospital to ALL their patients in total.

Trusts have policies in place stipulating that people should be reimbursed, but the money is not reaching them. Trusts must remedy this urgently.

Rising costs of home dialysis treatment

According to the Left out in the cold report almost three quarters (73%) of people who do their dialysis at home have been worried about the cost of home dialysis this winter. When asked if they had kept their homes colder than they would like this winter (below 18°C) due to worries about the costs, we saw that 95% of people had done so at some point. People with long term conditions need to keep homes sufficiently warm to maintain their health and wellbeing – this is particularly true for people living with kidney failure who receive dialysis to stay alive.

People on home dialysis are not the average energy user; the costs incurred to run a home dialysis machine do not take into account the costs of keeping the room in which they dialyse warm.

Dialysis machines need to function at a specific temperature (typically above 18°C). Warm dialysis rooms are therefore a medical necessity, not a luxury. However, 95% of the trusts who responded to our freedom of information request are not making contributions towards the heating of the room in which people do their dialysis, despite the room needing to be at a certain temperature for the machine to work.

"All NHS trusts must ensure that they are meeting their reimbursement obligations in full”

Fiona Loud, Policy Director at Kidney Care UK, said: “There are too many kidney patients who are eligible for reimbursement but who are not receiving it. Reimbursement is not something they should have to fight for, it should be something all home dialysis patients receive automatically. Which begs the question: as virtually everywhere has a policy, and we know the trusts are already receiving the funds to cover the cost of reimbursement for additional utility costs, why aren’t people getting the money? It’s simply not good enough that some trusts who are reimbursing are either paying below the standard tariff or are not able to say whether they are paying at that rate. All NHS trusts must ensure that they are meeting their reimbursement obligations in full.”

Despite the Energy Price Guarantee being extended, April still sees soaring interest rates, increases in prices for common items including stamps, prescriptions and broadband, as well as increases in council tax and rises in water bills. April also marks the end of the Energy Bills Support Scheme.

Food prices are also an issue for people on dialysis who often have to eat a specific diet as their kidneys are unable to eliminate toxins. Over the last 12 months the charity has been tracking the prices of 10 common food items that are suitable for dialysis patients and has found that since March 2022 these prices have risen, on average by 15-20%.

Peter Smith, director of policy and advocacy at National Energy Action – who supported the survey – said: “We know that millions haven’t been able to afford energy bills as they’ve increased by over £1,000 in 18 months. But many dialysis patients have had to find an additional £1,000 on top of that. While reimbursements are available, many aren’t getting them. Facing fuel and water poverty is hard at any time but particularly when you’re ill – and your treatment depends on both power and water. Energy bills have never been higher and targeted support for vulnerable people, including those needing dialysis, is vital.”

Kidney Care UK supported a record number of patients in 2022

In 2022 Kidney Care UK supported 3,028 new patients through their Patient Support & Advocacy Service (an increase of 14% compared to 2021).

In addition, 834 individuals were supported in 2022 through the charity’s free telephone counselling service – this is more than more than three-fold increase compared to 2021.

Last year 1,499 people were given financial assistance, an increase of 26% on 2021. The charity saw almost three times as many requests for support with heating and utility bills than in 2021 and demand for Kidney Care UK’s emergency assistance grants – a £300 one-off payment to meet an immediate need for food, clothing and other essentials – have risen by 78% over the last three years.

In the first two months of 2023 the charity has seen 48% more applications for financial support compared to the same period in 2022.

As a result of the findings of the Left out in the cold report, Kidney Care UK is demanding that:

All NHS trusts in England inform and then consistently reimburse people on home dialysis, fully, fairly and quickly, for the additional utility costs incurred.

Most trusts have policies in place but too many people are not receiving the money they are eligible to receive. This isn’t good enough and it must change immediately.

NHS trusts, in accordance with the long-standing home haemodialysis service specification, ensure their reimbursement policies provide for all additional costs incurred by dialysis treatment, including for extra water consumption and heating.

Too many people on home dialysis do not know how they are going to pay their bills. This is not a cost of living crisis, it’s a cost of staying alive crisis.

NHS Trusts keep their home dialysis reimbursement policies and reimbursement rates under review to ensure no one is out of pocket due to them receiving their life-saving dialysis at home.

If home dialysis is the best treatment for them, then where they live or what their financial circumstances should not be a factor. This is supported by the first two guiding principles of the NHS:

  • The NHS provides a comprehensive service, available to all.
  • Access to NHS services is based on clinical need, not an individual’s ability to pay.

The government and energy companies commence work on developing longer term protection for energy customers with long term conditions like kidney disease, including a new social tariff to help vulnerable people heat their homes.

This should be a protected tariff, cheaper than the price of the cheapest available energy tariff, and targeted at those living in fuel poverty or on a low income.

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