* Please note that the patient's story includes one patient's opinion on their treatment options. To ensure that the best treatment options are provided, these should be discussed and agreed with a Healthcare professional*
Chronic Kidney Disease (CKD) diagnosis
Twenty-five years ago, Kasonde (53) was first diagnosed with CKD. Like many in the UK, she had little previous awareness or experience of the condition, so it was a totally new experience as she learned to adapt to her new reality. She described being diagnosed as an experience that “crash landed” on her. Throughout the early stages of her relationship with in-centre dialysis, Kasonde described herself as “not faring very well”, as she repeatedly contracted infections and found issues with transport to access the treatment.
The impact of home dialysis
After struggling for a couple of years, Kasonde decided to look for alternative treatment options. She had done extensive research and discovered that home dialysis might be a better option for her if she was a suitable candidate. Home dialysis allows those with CKD to receive their treatment within the comfort of their own home. This meant that Kasonde was largely responsible for administering and timing her dialysis plan – removing the need to travel to a dialysis centre. Many people even opt to dialyse while they sleep. An increased amount of time on dialysis can lead to improved health outcomes for those with CKD, and potentially ease the restrictions on diet and fluid intake that would previously have been in place. And with the additional flexibility and convenience it brings, it can be a “life-changing” treatment option for those that are suitable for the pathway.
Kasonde transitioned to home dialysis in 2002 – a decision she described as life-changing. The transition allowed her to live life to the fullest, getting back her independence, and improving her health condition. Reflecting on this change, Kasonde concludes that home dialysis fundamentally allowed her to “manage the condition rather than the condition managing her”. Having experienced life with home dialysis as an option, Kasonde would find the idea of returning to in-centre treatment “unimaginable”.
Kasonde is keen to advocate for its uptake amongst the wider CKD community after seeing first-hand the benefits that home dialysis can bring. She serves as a peer supporter with the National Kidney Federation, has taken part in an NHS consultation on shared care, and keeps in close contact with Fresenius Medical Care UK & Ireland to help promote the ways in which home dialysis has changed her life for the better.
Like all of those with CKD, Kasonde’s health journey has had its ups and downs. Kasonde received a kidney transplant in 2006 which she affectionately nicknamed ‘Naomi’, and with whom she enjoyed 14 years without the need to dialyse at all. However, after this period, Naomi began to fail and Kasonde found herself back on home dialysis in 2020. Despite being more informed about her options the second time around, and despite much forethought and planning, Kasonde faced a new and unexpected obstacle: the rising cost of energy.
The impact of energy costs on home dialysis
Across the UK, the cost-of-living crisis is affecting everyone. This includes the rising of energy costs, which particularly impact those who rely on powered medical equipment to survive. Kasonde’s dialysis machine uses electricity for around 15 hours a day, including additional power needed for cleaning and preparation when not actively dialysing. The strain of these rising financial demands has meant that Kasonde has had to make large lifestyle changes. She has had to reduce her home heating, remove her chest freezer, limit her washing machine use, and become extremely vigilant about finding ways to save money wherever possible.
Despite these significant sacrifices, Kasonde has managed to stay optimistic. However, the financial strain is undeniable. Kasonde faces a severe lack of disposable income and has been forced to borrow money on top of her income and benefits allowance. In Kasonde’s words, this has put her in a situation where, without her credit cards and ability to borrow, she would not be able to survive.
Importance of advocating for those on home dialysis
At Fresenius Medical Care UK & Ireland (FME UK&I), we see it as a responsibility to share the stories of individuals like Kasonde, and amplify the voices of those who may otherwise go unheard. Home dialysis treatment offers the prospect of increased freedom, health, and happiness to so many of those with CKD – the fact that there is currently not enough support given to those looking to make the transition, or already on home dialysis, is an issue that isn’t talked about enough.
Hearing this impact on people living with CKD, FME UK&I is calling for increased support for those who use home dialysis treatment from both the government and the private energy companies that supply their energy. The fact that many providers in the UK can only offer limited help for people like Kasonde is an example of how the current set-up is not doing enough to encourage this potentially life-changing form of treatment. This is especially significant as home dialysis is a more cost-effective form of treatment for the healthcare service as a whole – helping to increase its uptake would be beneficial to the entire system.
Kasonde is concerned that the rising costs of energy could deter others from opting for home dialysis, a treatment that has had such a profound impact on her life. She worries that financial concerns will discourage people from choosing a treatment that could offer them greater independence and flexibility, and have a significant positive impact on their lives.
To help alleviate some of these challenges, Kasonde is calling for public support, particularly in the form of preferential energy rates for individuals with chronic conditions who rely on energy-intensive healthcare equipment. She also advocates for more mental health support for those living with CKD, recognising the emotional toll that chronic illness can take.
Kasonde believes that the current healthcare system doesn't fully address the individual circumstances of those with CKD. Many people with CKD are unable to work due to their health, a reality she feels is not adequately supported in healthcare policy. While she understands that improving healthcare is a complex and long-term task, Kasonde is hopeful that a coordinated effort across different sectors could bring about meaningful change.
Kasonde says that “in an ideal world, it would be lovely” for changes to be made to improve the situation for her and others like her, yet she remains unsure as to whether any real action will be taken. Whilst ultimately Kasonde’s story has been one of incredible hope and empowerment, she wants others to be able to share in the benefits that home dialysis treatment can bring – unless action is taken, many may miss out on the freedom, flexibility, and health benefits that the treatment can provide.