Cost of living campaigning

Kidney Care UK is fighting for full, fair and timely reimbursement of the costs of kidney disease. From paying for the energy to run a life-maintaining dialysis machine to the price of transport to dialysis, it is not right that people are left out of pocket.

The cost of living crisis has seen energy costs soar. Home haemodialysis (HHD) and automated peritoneal dialysis (APD) machines use additional electricity which increases the cost of rising utility bills.

I would cut my time on the machine short to save energy and because I would get so cold due to not putting on the heating.
Home dialysis patient

About our Cost of living campaign

Kidney Care UK has found disparities throughout the UK regarding if, how, when and what a person on home dialysis is being reimbursed for their additional home dialysis energy costs. With your help, we have been campaigning with your help to change this.

We brought our campaign to the heart of government at Westminster, briefed and met with MPs setting out the case for policy action on reimbursement.

This led to Kidney Care UK being referenced during Prime Minster’s Questions, which resulted in a commitment from then Prime Minister Boris Johnson that all home dialysis users should be reimbursed.

Keir Starmer PMQs
Sir Keir Starmer referencing the Kidney Care UK campaign at PMQs

A Westminster Hall Debate on reimbursement followed where Kidney Care UK briefed attending MPs. During the debate the minister responsible made a commitment to ensure the reimbursement system was made fairer. Our policy team then met with the Department of Health and Social Security team responsible for energy reimbursement.

Our campaign is making a difference

In 2022 Kidney Care UK’s policy team called for immediate action on energy reimbursement for all those on home dialysis in England.

The key outcome of our meetings with MPs and the Department of Health and Social Security team responsible for energy reimbursement was a national review of home dialysis energy reimbursement policy led by NHS England. The review resulted in NHS England taking action to ensure that all NHS Trusts provide reimbursement payments to cover the additional energy costs of their home haemodialysis patients and to ensure the same arrangements apply to adult peritoneal and all paediatric (children’s) home dialysis patients.

Kidney Care UK continue to work with the NHS England team, using evidence gained through our Patient Support services to highlight Trusts where there are barriers to reimbursement.

The reimbursement of the additional energy costs for people on home dialysis in Scotland is currently determined by the health board a person lives in. During spring-summer 2023 our Policy team conducted a comprehensive review of the reimbursement of energy costs for people with kidney disease on home dialysis in Scotland. Our findings led us to call for the Scottish Government to introduce national policy guidelines for home dialysis reimbursement.

While people receiving home haemodialysis (HHD) in Northern Ireland are reimbursed for the energy used to run their machine, those receiving home automated peritoneal dialysis (APD) do not.

Kidney Care UK brought this long-standing disparity to the attention of the Permanent Secretary Peter May at the Department of Health. As a result, Mr May confirmed that people receiving home APD in Northern Ireland, will now begin to receive reimbursement for the electricity costs associated with their home dialysis treatment. We will continue to work to ensure that this occurs.

We have found a few of our patients are sitting in the cold whilst dialysing, which has consequences for their health, as well as their equipment.
Renal nurse