Nearly 9 in 10 people with kidney disease surveyed by Kidney Care UK said that their kidney disease increased everyday living costs such as energy. The symptoms of CKD and the burden of treatment can make it very difficult to stay in full time employment.
Kidney Care UK is campaigning so that people with CKD do not face unfair costs because of their health condition. Our work focuses on the following areas:
Counting the cost of dialysis transport
People who undergo life-maintaining dialysis must make three journeys to hospital per week. Some people who travel independently to and from dialysis, rather than using hospital transport, have to pay their own travel costs. Despite NHS England’s promise of free transport for dialysis patients, and although national guidelines are in place, reimbursement is not available for all.
Around the UK devolved nations, reimbursement is available in Wales, but not in all health boards in Scotland and trusts in Northern Ireland.
What we want: wherever you live in the UK, there should be simple and fair reimbursement for travelling to and from dialysis.
Counting the cost of home dialysis energy
For those who choose to, undergoing dialysis at home avoids hospital visits and makes it easier to hold down a job. However, the energy costs of running dialysis machines mean home dialysis is unaffordable for some. Following our campaigning, more people are now receiving reimbursement for energy costs of dialysis, but we will continue to work until it is available to all.
What we want: wherever you live in the UK, there should be simple and fair reimbursement for the costs of home dialysis.
Counting the cost of prescription charges in England
In England, people with kidney failure (where kidney function is below 15%) can face prescription charges for medicines they need to survive. There is no exemption for people who have had a transplant and there is a postcode lottery for people on dialysis, because the guidance is open to interpretation.
What we want: the prescription charging system needs to be overhauled. Kidney patients should be able to access the medication needed to keep them alive at no cost.
Campaigning with you
With your help we have put together the facts to change this.
Kidney Care UK briefings and reports:
Campaigning with others
Kidney Care UK has joined with other charities to campaign against people facing financial hardship because of their health condition.
- Guarantee Our Essentials: Developing a long-term condition like chronic kidney disease or needing to care for a sick family member – everyone’s circumstances can change. Led by Joseph Rowntree Foundation and the Trussell Trust, this coalition campaigns for Universal Credit to be reformed to ensure everyone can afford the essentials in hard times.
- Disability Benefits Coalition: this group of over 100 charities works for a benefit system that is fair and accountable, is built on the rights of people with disabilities and supports disabled people to meet the additional costs of disability.
- Prescription Charging Coalition: this is a group of nearly 40 organisations campaigning to end unfair prescription charges for people with long-term medical conditions.
What support does Kidney Care UK provide?
When you’re struggling with kidney disease, we understand that the additional pressures of trying to make ends meet can make life very difficult. Find out more about the financial support we can provide.
We also provide support to people to ensure they are receiving the benefits to which they are entitled. During 2023, our services secured over £1.5million in financial gains for patients, income they were entitled to but otherwise would not have received.