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Patients receiving home dialysis treatment face crippling energy and water bills but until recently there had been little joined-up support for them. Utility Week talks to Kidney Care UK about its collaboration with utilities to support this often marginalised community.
Across the UK more than 7 million people are living with chronic kidney disease (CKD) – yet it remains an almost invisible condition.
Even lifeline service providers like utilities are too often unaware of the specific needs of a condition that can hit anyone and for which there is no cure.
This is despite the huge implications for energy and water in particular. The UK’s 30,000 dialysis patients can expect to see their water usage increase by 7,500 litres per week, with their electricity demand up by around 25 kilowatt-hours if they want to have their treatment at home.
While they are entitled to claim back the costs of their treatment, the process is patchy and varies from region to region, according to Kidney Care UK.
Having already navigated a pandemic and the worst of a cost of living crisis, this community is still living in fear, with steep water bill hikes and the prospect of standing charges in energy being spread across unit rates among the potential challenges on the horizon.
Utilities are now increasingly recognising the specific needs of this community. At the start of next month, £2.5 million of funding from the gas networks’ Vulnerability and Carbon Monoxide Allowance (VCMA) to support CKD sufferers across the country comes into effect. It will allow Kidney Care UK to hire an additional 21 support officers who will initially focus on 9,000 dialysis patients in some of the most deprived areas of the country.
Laurie Cuthbert, the organisation’s director of fundraising, marketing and communications (a job title that seems to indicate the charity is not exactly over-staffed at head office level) says the relationship he has built with utilities has been one of his most effective partnerships – but that this is only the beginning.
Difficult conversations
Cuthbert admits that when he first started to build partnerships between the charity and utilities firms – beginning with Anglian Water in 2022 – it sparked some controversy.
“We had some beneficiaries who were appalled we were working with energy and water companies. But I never saw the point in just throwing stones. I saw it as an opportunity but they were quite difficult conversations at first because I was asking some searching questions of the utilities and exposing quite a significant gap in support.”
The partnership with Anglian, which counts an astonishing 850,000 CKD sufferers among its customer base, saw training delivered to the call handling team on how to deal with specific needs. This led to a dedicated helpline being set up, offering discounted tariffs and assistance schemes, as well as signposting to further support.
Anglian’s PR24 business plan includes a proposed Medical Needs Discount, which would provide direct financial aid to those with specific medical needs that create a high-water dependency, including home dialysis.
Kidney Care UK has built on this partnership and now has a relationship with all but two of the UK’s water companies, as well as eight energy companies.
Cuthbert says this has driven understanding of CKD, adding: “I don’t think many people in the utilities sector had grasped exactly how big an issue energy and water use was for the kidney community.”
Alongside training courses, utilities have also been invited into renal units to talk to patients about the support available and raise awareness of the priority services register (PSR).
Despite there being a code on the PSR for those using medical equipment that needs energy/water, Cuthbert says take-up remains frustratingly low and support inconsistent even when patients are signed up.
“For us it’s an absolute no-brainer that all of our community should be on the PSR. What we have encountered, though, is a fair amount of suspicion from the public. A sense ‘what’s in it for them’. There’s a really important role for organisations like ours be a trusted voice, saying ‘honestly they are just trying to help you’.
“There is still quite a difference between the utilities in terms of how they approach the PSR and it’s often difficult for them to target support.
“The process also needs to be as simple as possible. We’re talking about people who often have cognitive impairment so it needs to be set out as plainly as possible.”
Kidney Care UK is keen for there to be a code in the PSR for dialysis use specifically, which could also unlock a suite of provisions form energy and water companies. Cuthbert says this would ideally include discounted tariffs or capped utilities’ fees but also efficiency training, grants for white goods and other wider support.
He stresses that prepayment meters are generally unsuitable for CKD patients and has been working with Eon to ensure this is not an option within their customer base.
Cuthbert expresses concern about the possibility of standing charge reform and particularly the idea of absorbing these costs into the unit rate.
He says: “This is a community of intensive energy and water users who have no real option. Removing standing charges could disproportionally penalise some of the most vulnerable people in society with no plan in place to support them in any other way.”
He is also keen to ensure that CKD patients are not left behind on the energy transition. He points out that the gold standard for home dialysis is to run the treatment overnight.
“So, is there a type of tariff that could be provided to really intensive users of utilities overnight that recognises that heavy off-peak use?
“That kind of joined-up thinking could help our community and present a huge cost saving to the NHS as well. And from an ESG perspective, for these commercial organizations, they’re adding benefit to their vulnerable customers and reducing the burden on statutory services which are already a breaking point. With very little against the bottom line, I would imagine.”
Despite the difficult conversations at the start of the process, Cuthbert says it has been “affirming to work with a sector that isn’t just talking about a problem but is really investing in making things better”. He adds: “There have always been some great initiatives out there but the issue was getting access to them. That’s getting a lot better and what utilities are doing is making a big difference for some of the most vulnerable people in society.”
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