While historically not all areas of the UK have offered reimbursement for the additional costs of treatment for people with kidney disease, Kidney Care UK has been campaigning for change, both for those on home dialysis and those on in-centre haemodialysis.
Home dialysis reimbursement: what you are entitled to
Home dialysis treatments include:
- home haemodialysis
- automated peritoneal dialysis
- continuous ambulatory peritoneal dialysis.
If you live in Wales, you should be offered reimbursement for all forms of home dialysis.
If you live in Northern Ireland, people undergoing home haemodialysis (HD) receive financial reimbursements for the energy used to run their machine. Following Kidney Care UK campaigning, in October 2023 Permanent Secretary Peter May at the Department of Health confirmed that reimbursement will be extended to those receiving home peritoneal dialysis (PD).
In Scotland, on 1 February 2024 the government confirmed the introduction of the first-ever national guidelines for reimbursement for people on home dialysis in Scotland following campaigning from Kidney Care UK.
The Scottish home dialysis reimbursement guidelines cover people of all ages and on all modalities of dialysis and should not depend on income. The guidance also asks health boards to consider including reimbursement towards the heating of the room and requires them to let people on dialysis know that there is reimbursement available to them.
If you live in England, reimbursement for home haemodialysis should be offered to you. If you are receiving peritoneal dialysis in England, and there is currently no reimbursement guarantee.
It is important to remember is that reimbursement is NOT standardised across England. This means that hospital trusts often handle reimbursement differently and you may have to chat with your home therapies team for specific information. There is also a difference depending on whether your child is on peritoneal or home haemodialysis.
There may not be a guarantee that you will be reimbursed for the full amount of water and/or electricity used in your treatment, however you should be offered some level of reimbursement for the extra costs associated with home dialysis.
Home dialysis reimbursement: your questions answered
We asked Karen Jenkins, Renal Nurse and president of the Association of Nephrology Nurses (ANN UK), all your questions about reimbursement, from who can apply to how reimbursement interacts with benefits.
Karen also helped created a home dialysis reimbursement calculator to try and help ensure that patients across England are being given a standardised level of reimbursement (though at the moment, trusts are not required to use this calculator).
What is reimbursement?
Reimbursement is the repayment for out-of-pocket expenses. In the case of those on home dialysis, this reimbursement is designed to cover the extra money spent on utilities during your home dialysis treatment. For example, the cost of extra water used in home haemodialysis dialysis, or the extra electricity used in automated peritoneal dialysis.
Even though you should be paid back for your treatment expenses, is important to remember that you will be expected to pay for your energy bills upfront and will then be reimbursed in the following weeks or months.
If you are worried about paying your bills, visit our Benefits and financial support hub to check if you are entitled to other benefits.
You could also contact your renal social worker or care team for advice, chat with our Patient Support & Advocacy Team, or check out our free Benefits Calculator.
What are the different types of reimbursement?
If you’re on home haemodialysis, you should be reimbursed for the electricity and water used during your treatment.
If you’re on automated peritoneal dialysis or continuous ambulatory peritoneal dialysis, you may be reimbursed for the electricity used during your treatment.
Electricity reimbursement
You can be reimbursed regardless of how your electricity bill is calculated (pre-paid meter or fixed payment (pay as you go) meter).
Water reimbursement:
If you are on a water meter (this means you do not pay a fixed rate) you may be reimbursed for the extra water used during your dialysis treatment.
You may also be eligible for a reduction in your bill from a scheme called WaterSure that can help you cover your water bills. If you are on a fixed rate meter, you will not be reimbursed as there should not be any change to your bill.
Who can apply for reimbursement?
Anyone who is having home dialysis treatments can apply. This includes every adult or child who is receiving home haemodialysis, automated peritoneal dialysis, and continuous ambulatory peritoneal dialysis.
Not all trusts or health boards are currently reimbursing for home dialysis, but it is important that you check with your unit if you are using or about to use home dialysis as you may be eligible for reimbursement.
What reimbursement can I claim for?
Reimbursement is to cover the extra cost of any utilities that are used during the time you spend dialysing (including setting up the machine). In some trusts, you can also claim for other utilities during dialysis, such as your heating bill, so be sure to check with your home therapies team.
This information should be shared with you before you start home dialysis. If you are considering starting home dialysis, discuss reimbursement with your kidney team.
How is reimbursement calculated and do I need to calculate it myself?
Your home therapies team will calculate your reimbursement for you, and they should know how your trust is planning to reimburse you. You may be asked to provide your utility bills, or your trust may simply reimburse you a fixed amount for the extra cost. Chat with your team to make sure you know how your trust handles reimbursement. You should not have to calculate anything yourself.
How do I claim reimbursement? Who do I talk to?
Talk to your home therapies team about claiming reimbursement and they will advise you on what to do.
Again, remember that trusts often handle reimbursement differently, but usually there will be a few forms to complete. After that, your team should take care of the rest for you.
Do not try to contact any finance department at your unit yourself. Organise reimbursement through your home therapies team.
How far can I backdate my reimbursement claim?
Generally, you can only claim reimbursement within the current year that you’re dialysing, and you usually cannot backdate claims beyond the last twelve months.
For specific information about how far you can backdate reimbursement claims, chat to your home therapies team.
How will the money be paid back to me?
Reimbursement is usually paid directly into your bank account, though some trusts may issue a cheque, so be sure to check with your home therapies team. Remember that you will be expected to pay for your utilities first and then you will be reimbursed later.
How long will it take to get paid after I claim for reimbursement?
Unfortunately, this is different for each trust and there is no standard timeframe for home dialysis treatment reimbursement. Ask your home therapies team for information.
How often do I have to claim for reimbursement?
This will differ from unit to unit, but reimbursement is often paid quarterly (every three months). Chat to your home therapies team for specific information, as there is no national standard.
Remember that you can continue to claim for all the time you are continuing to dialyse at home. You may claim for the hours when you are actively dialysing, plus machine preparation and cleaning time.
Am I entitled to reimbursement even if I don’t quality for means-tested benefits?
Yes, you are entitled to home dialysis reimbursement even if you don’t qualify for means-tested or non-means tested benefits.
Reimbursement does not depend on your income or financial situation and is not related to benefits in any way. This is because you are not receiving any additional money or extra payment, you are simply being reimbursed for your treatment expenses.
If I’m entitled to reimbursement, will this affect my benefits?
No, reimbursement will not affect your benefits. Reimbursement is money that you are entitled to, and you are not gaining any extra additional income if you are being reimbursed for home dialysis.
If I’m on a home dialysis treatment, what happens if I end up having to go into a unit for dialysis instead of having dialysis at home?
Your home therapies team will manage this and offer guidance. If you have to go into a unit to dialyse, bring up the topic of reimbursement with your team ahead of time.
I’ve heard that units deal with reimbursement differently, and that some units don’t reimburse at all. Why is that the case?
In England and Wales, reimbursement for home dialysis treatments is being standardised.
In Wales reimbursement is now a requirement for all forms of home dialysis for adults and children.
In England reimbursement is now a requirement for home haemodialysis for adults and children, and soon will be for adult and child peritoneal dialysis. Some trusts in England are already reimbursing for all forms of home dialysis, so if you are not being reimbursed for home dialysis, bring this up with your home therapies team.
Scotland and Northern Ireland handle reimbursement differently to England and Wales. In both nations, Kidney Care UK has successfully campaigned for improvements and the introduction of national guidelines.
It always is worth bringing up reimbursement to your home therapies team, and asking them to explain the reimbursement process at your trust.
Who can I speak to if I am not being offered reimbursement?
Chat with your home therapies team if you haven’t been offered reimbursement.
If you’re planning for home dialysis, be sure to check the reimbursement process with your team. Remember that, in many areas, if you undertake home dialysis you should be reimbursed for the extra utility costs of your treatment.
How should I approach a conversation about being reimbursed?
Ask your home therapies team what the process is for reimbursement at your particular trust. Treat it like a standard conversation – your team will understand the process.
It is becoming normal practice for you to be reimbursed, so don’t feel uncomfortable about talking about it. Your home team is there to support you through the process, and, in many cases, you should be being reimbursed for your home dialysis treatment.
Remember that every trust is different, and you may have to have a few conversations about reimbursement with your team. Your trust should have a reimbursement policy in place, so don’t be afraid to have the conversation.
How do I appeal a reimbursement decision?
Reimbursement processes are generally set by your unit, whether this is a standard rate or according to your bills. However, your reimbursement should be calculated fairly and accurately.
If you are worried anything is wrong with your reimbursement, bring this up with your home therapies team. Alternatively you can:
- Raise any issues with the Patient advice and liaison services (PALS).
- Chat with one of our Patient Support & Advocacy Officers on 01420 541 424.
- Contact our Policy Team via [email protected] and we can speak to your trust on your behalf.