Kidney Care UK has been working hard to address the challenges faced by people on home dialysis who pay more for their energy and water because they run lifesaving medical equipment at home. Reimbursement should be provided to all patients to cover the additional costs of home dialysis, but we have heard from many people that even if they do receive payments, it often does not cover the true cost. The rise in energy costs that took place in April and is expected again in October 2022 means it is vital patients have any additional costs covered. As part of our work on this issue, we worked with the UK Kidney Association Patient Safety Committee to survey renal clinical directors and home dialysis nurses at NHS Trusts. This gave us a valuable insight into the challenges to providing consistent reimbursement to home dialysis patients and what action is needed to achieve fairness.
What did we find?
We contacted all UK kidney units and invited them to complete a survey, between 20 April 2022 and 7 May 2022. We received 36 responses from 25 different Trusts with renal units as well as the Welsh Renal Clinical Network which provides guidance for all the renal units in Wales. Nearly all Trusts replying to our survey reported that they provided some reimbursement and the Trust that did not reimburse said they are urgently looking to introduce reimbursement. However, 13 of the Trusts who reimbursed reported doing so only for some modes of dialysis. Seven of these specified they only reimbursed for home haemodialysis. We were disappointed that more than half of the 71 Trusts we contacted did not respond to the survey; we do not know whether this is because they did not have time, do not have any patients on home dialysis, do not offer reimbursement, or for some other reason.
Just over half of the trusts who responded paid patients a standard amount, depending on mode of dialysis. This can be a significant challenge for patients if it is insufficient to cover costs and Kidney Care UK has received reports from many patients who receive reimbursement that this simply does not come close to covering the additional costs of running the machines. This will be exacerbated if, as highlighted by one Trust, it is not regularly reviewed particularly given cost increases. Just over a third of the Trusts who responded made a payment based on a calculation of consumption – using dialysis prescription, average consumption of equipment and an appropriate energy tariff. One of the Trusts made payments agreed with the patient, based on the submission of utility bills before and after treatment commenced. These responses demonstrate just how much the reimbursement system varies across the UK.
A mixed picture
Kidney Care UK have heard from many patients on home dialysis who are becoming very anxious about how they will manage to pay their energy bills once prices rise again, as is anticipated in October 2022. We asked Trusts if they were reviewing their reimbursement policies in light of the increase in energy bills and removal of the energy price cap. Seventeen Trusts reported they were doing so. Ten said no, although it was under discussion in some and one trust reported the tariff used in reimbursement calculations was reviewed twice a year anyway. Before the price rises we already knew many patients were struggling; the fact that only one Trust told us that they review their calculations regularly is deeply concerning for us at the charity.
Identifying barriers to the consistent reimbursement for additional costs of utilities for home dialysis patients was a key purpose of the survey, to help identify what steps should be taken to ensure patients were not unfairly penalized for running medical equipment at home. Key themes included budgetary pressures, for example, the tariff payment received by Trusts for home haemodialysis does not cover all costs. Given that energy prices are increasing this raises the question of whether the tariff should be reviewed.
Challenges and complexities shouldn’t be a barrier
The complexities of calculating the correct amount to reimburse was a common theme, with keeping up to date with energy tariffs and calculating the consumption of various machines cited as challenging. A number of respondents called for a national system to support this, to avoid duplication of work and encourage consistency. Within some Trusts, systems for processing payments were a challenge, with multiple sign-offs required, lack of a clear pathway and finance teams not understanding the needs of home dialysis patients. Members of the Welsh Renal Clinical Network welcomed the work that has been done in Wales to provide a consistent system for all Trusts to follow. Good practice like this demonstrates that it is possible to reimburse patients appropriately.
It is important that home dialysis provision is centred around the needs of patients, and this includes the reimbursement process. Difficulties highlighted by Trust staff echoed concerns Kidney Care UK have heard from patients – particularly that payments are not timely and retrospective payments are very challenging for patients who are forced to cover costs upfront. A number of Trusts explained that they did not adapt reimbursement to different dialysis schedules – all patients received the same amount. One respondent also highlighted that reimbursement for costs of running the dialysis equipment does not meet additional costs such as need for warmer housing due to feeling cold. Another said that many of their patients use expensive fuel such as heating oil which can make keeping warm very costly.
What are we doing now?
We are disappointed that only around half of NHS Trusts responded to our survey. However, this work has provided useful insight into the barriers to consistent reimbursement. Comments from kidney doctors and nurses also highlighted their understanding of the challenges faced by their patients and why this is an issue that needs urgent attention. We, along with other kidney charities, are working with the UK Kidney Association Patient Safety Committee to update the guidance for England taking into consideration the barriers highlighted by NHS Trusts within this survey.
We are also working hard to raise the issue with policy makers, urging them to do all they can to support the NHS to refund patients appropriately. We were pleased to see Keir Starmer raise the issue with Boris Johnson during Prime Minister’s Questions, two weeks in a row. The Prime Minister also referenced the fact that the Government were looking at arrangements to support those who may be using dialysis machines, or who may have particularly high requirements for electricity because of their medical conditions when he spoke to Good Morning Britain on 3 May. We are working with politicians from all parties to get full reimbursement for all.
Recently Jim Shannon MP led a Westminster Hall Debate on dialysis outcomes, which highlighted the challenge of consistent reimbursement. Government have now committed to work towards improving the situation for patients and we will hold them to account
Home dialysis should be an option for all suitable patients, not just those who can afford it.
If you are on home dialysis and your Trust does not reimburse you, or offers you reimbursement that does not cover the additional costs of having your dialysis at home please email [email protected] and let us know and help us to build a true picture of what reimbursement is like for kidney patients across the UK.
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