World Kidney Day: The Youth Worker Transforming Lives at CAV's Renal Unit
When the David Thomas Unit (DTU) had an influx of young people as patients, Cardiff and Vale University Health Board knew it was more important than ever to have a resource for young people needing dialysis.
Introducing Rebecca ‘Becky’ Frew: a renal youth worker for patients aged 15-25. Becky’s role within the Health Board is to be an advocate for young people undergoing dialysis and transplants.
Visiting young patients wherever they are in the transplant process, Becky can be found at the DTU and other dialysis satellite sites providing support socially, emotionally, and academically. She also helps to support parents in navigating the additional needs that come with chronic kidney disease (CKD).
What is Chronic Kidney Disease (CKD)?
Chronic kidney disease (CKD) is a long-term condition where the kidneys do not work as well as they should.
In adults, chronic kidney disease is often caused by other conditions that put a strain on the kidneys, such as diabetes, or high blood pressure, however young people with CKD are more likely to have been born with kidney abnormalities, or to have developed rarer autoimmune kidney diseases.
Many people with chronic kidney disease will be treated with dialysis - a process that removes waste and extra fluid in the blood that would usually be filtered by the kidneys.
Being on dialysis can be limiting. Someone may be physically tied to a machine up to 3 times a week, for 4 hours. Their fluid intake may be limited and their diets restricted, as well as medication for immunosuppression.
Advocating for Young People
As a renal youth worker, Becky is able to see the young people undergoing dialysis for a longer period of time. This means she can build stronger relationships, take the time to understand the patients as individuals and tailor support to each person.
Adolescence can be difficult even without chronic kidney disease. Her background in emotional support, emotional regulation and how to deal with trauma helps build confidence in the young people she sees and reassurance they are more than their illness. Becky encourages young people to take control of their own health and be independent in managing at home dialysis.
Supporting in other ways, Becky organises events for young people on dialysis. Being able to speak to other teenagers going through similar situations is powerful. In her role as a youth worker, she has encouraged patients to attend a trip away from home filled with activities with dialysis arranged while on the retreat and has reported patients coming back with boosted confidence and able to talk about their medical needs with more ease.
Acknowledging diets can be restrictive, Becky has also arranged for a patient to join in with Kidney Care UK’s Kidney Kitchen, a team of chefs and dieticians who create specially planned recipes suited for people with CKD. They were able to create a recipe and will soon see them again for more cooking for specialised diets.
Becky also encourages the patients she works with to pursue their interests and has also recently helped a young person express his experience with CKD through the mode of song, recorded at Cathays Community Centre.
It’s important for young people with chronic kidney disease to know they have more support than just the medical team at University Hospital of Wales. While CKD can be difficult to manage, Becky helps them understand they are the same as any other young person with needs, wants, desires and can enjoy life to the fullest despite their condition.
Diana de Mejer, a young adult patient who attended the residential trip with Becky's support and encouragement said: "Before going on the residential, I hadn't spoken to anyone my own age about being on dialysis, or even left Cardiff, so this was a brilliant opportunity for me to build a peer support network and I am really grateful for the opportunity and felt really moved by the experience."
Alexa Wonnacott, Consultant Nephrologist for the David Thomas Dialysis Unit said: “Having a dedicated renal social worker for this cohort has been game changing; we have seen notable improvements in confidence and independence with many of our youngest patients taking ownership of their dialysis treatment by engaging in our shared care dialysis programme.
“We also have young adult patients interested in becoming peer mentors for others starting on their dialysis or transplant journey. The patients and the unit as a whole have greatly benefitted from Becky’s enthusiasm and support, and I look forward to seeing what we can achieve together in 2025.”
Jodie, the parent of a young person with CKD said: “Becky has been an incredible source of strength and support for Dylan throughout his illness, standing by him during his most difficult times in the hospital.
"She has been a constant emotional pillar, helping him navigate the mental and emotional challenges that come with being ill. Her compassion and dedication have been invaluable, as she has consistently offered comfort, encouragement and love, never wavering even when Dylan struggled with his mental state.
“Her presence has played a crucial role in Dylan's journey, providing him with the resilience and hope to keep moving forward.”
Jodie continued: “I would also like to express my gratitude to Becky for being there for me as well. She always goes above and beyond to ensure everything runs smoothly during this challenging time. Even when we're not in the hospital, she takes the time to check in with us, offering her support and care.”
Living Kidney Donation
In recent years, a growing number of people have offered one of their kidneys anonymously to someone on the National Transplant List. A living person who donates one of their kidneys to someone they do not know is called a non-directed altruistic kidney donor.
If giving is in your nature, your donation would benefit as many people on the waiting list as possible. Your kidney donation may make it possible for up to three people to receive a transplant, who would otherwise not have had the chance.
Donating a kidney is a big decision. If you think this is something you could do, make sure you know what is involved and expected of you.
If you still would like to proceed, please email Live.donor.cav@wales.nhs.uk for more information.
Babies, Children and Young People’s Plan
Cardiff and Vale University Health Board is committed to listening, learning and leading in partnership with children, young people, families, colleagues and partners. In Autumn 2024, we launched our Babies, Children and Young People’s Plan as part of Shaping Our Future Clinical Services, one of the programmes that sits within our overarching strategy.
In line with our health board vision, our ambition is to deliver outstanding care for babies, children, and young people. We will ensure outcomes and experience for all that compare with the highest performing peer organisations. We will deliver seamless, timely, and specialised care to every baby, child and young person, ensuring no one is left behind.
By investing in our teams, making the best use of our resources, enhancing our facilities and embracing innovative approaches, we are dedicated to transforming healthcare experiences, fostering resilience, and improving outcomes and experience for all.