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.
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.
Following our campaigning, on 1 February 2024 the Scottish government announced the introduction of their first-ever national guidelines for reimbursement for people on home dialysis in Scotland. The new guidance has been sent to health board chief executives and will be reviewed in six to 12 months to ensure that it is achieving the intended effect of improved energy support for people who choose to dialyse at home. It covers people of all ages and on all types of dialysis and should not depend on income. The guidance also asks boards to consider including reimbursement towards the heating of the room where home dialysis takes place and requires them to let people on dialysis know that there is reimbursement available to them.
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