A new report from the UK’s leading kidney patient support charity highlights that we are now living through a cost of staying alive crisis.
Key findings of the Cost of Staying Alive report suggest that 98% of people are worried about the rising cost of living, of these 60% worry about it all of the time. A terrifying 44% of respondents have missed meals and 87% have already turned their heating down, with 70% worried that they won’t be able to buy any Christmas presents this year.
Having a long term health condition like chronic kidney disease (CKD) usually leads to increased costs for heating and a kidney-friendly diet. Transport to and from multiple medical appointments for dialysis patients is also incredibly costly; three round trips a week to dialysis amount to over 400 journeys every year, when fuel prices are between 15% (for petrol) and 29% (for diesel) higher than they were in 2021.
Of the respondents to Kidney Care UK’s survey, 32% were on dialysis and just 35% of them told us they receive any payments from their Trust to cover the additional utility costs of running this equipment at home. Thousands of people running dialysis equipment at home face some of the highest additional energy costs just to stay alive, and some are reporting that they can no longer sustain this with the current price rises.
"Thousands of people living with CKD have been struggling"
The Government has provided a support package in light of the cost of living crisis which includes £150 for people receiving non-means tested disability benefits, to help them with the particular extra costs they face. Yet Kidney Care UK’s report highlights that this £150 falls far short of the actual additional costs many people with kidney disease are facing due to their condition. This leaves people with CKD facing impossible decisions about how to make their already extremely stretched budgets go even further with many facing impossible choices of going without daily essentials just to meet the costs of staying alive.
In the last two months, Kidney Care UK has seen an increase of 240% in demand for grants to help people pay their heating bills and an increase of 51% in demand for £300 emergency assistance grants.
Fiona Loud, Policy Director at Kidney Care UK, said, “The support package put in place by Government simply does not address the specific needs of kidney patients who face significant additional costs because of their health condition. Shockingly, only 35% of those on dialysis who responded to our survey told us that they receive any reimbursement for their dialysis energy costs.
“As every day passes, kidney patients are spending more on fuel or utilities to simply stay alive. Empty promises won’t power dialysis machines to keep patients alive, fuel cars or keep houses warm. Thousands of people living with CKD have been struggling with the cost of living since their diagnosis and this has become more and more acute since April. Almost six months later and we’ve seen minimal action from the Government and NHS Trusts. We need action now.”
Dr Graham Lipkin, Consultant Nephrologist at Queen Elizabeth Hospital Birmingham and Trustee of Kidney Care UK and the UK Kidney Association, adds: “I fear that kidney patients will suffer disproportionate deprivation and risk ill health as a consequence of the cost of living increases both current and anticipated.”
Kidney Care UK is calling for the Government to act now to support kidney patients and their families
- The Government must urgently establish an emergency fund providing immediate financial support to cover costs of running medical equipment at home and travel to dialysis treatment this winter.
- The Government must mandate current guidance that NHS Trusts have a straightforward, accessible reimbursement system in place as a matter of urgency so that anyone on any form of home dialysis is reimbursed now for the additional costs of utilities.
- All NHS Trusts should ensure that they are following patient transport guidance across the UK so that everyone who travels to and from hospital for life-sustaining dialysis receives timely and sufficient reimbursement for fuel costs or access to free and reliable patient transport.
- Targeted financial support that prevents excessive energy costs for people who use more energy because of CKD should be available once the Energy Price Guarantee comes to an end in April 2023.
- The Government must develop longer term protection for vulnerable energy customers, with consideration given to social tariffs and/or schemes similar to WaterSure, which caps costs for vulnerable higher users.
- The Government must honour its commitment to increase benefits in line with inflation and to bring forward that increase so that benefits are better able to cover existing costs of essentials, rather than waiting until April next year.
