How Donors are Helping Young Adults with Chronic Kidney Disease Feel Seen, Supported and Less Alone

For young adults living with chronic kidney disease (CKD), life can feel isolating. Hospital appointments dominate everyday life, plans are interrupted by fatigue, and many struggle to explain their condition or hide it completely out of fear of being treated differently.

Thanks to supporters like you, NHS Lothian’s Renal Service has changed that story for their young patients across the region.

A First-of-its-Kind Service in Scotland

Generous donations have supported the creation of a pilot role to establish a Renal Young Adult Support Service, the first, and only, of its kind in Scotland.

The idea came from social work colleagues within NHS Lothian’s Renal Service, who recognised a significant gap in support for young adults aged 16–35 living with CKD. While clinical care was well established, many young people needed more holistic, person centred support, helping to address the emotional, social and practical challenges of managing a long term condition during an important phase of their life where many are hoping to study, start careers, build relationships and work towards independence, as well as support to navigate the transition from children’s to adult services.

In response, funding was provided to support a pilot Renal Young Adult Support Worker – a role designed to offer both preventative and reactive support, tailored to the circumstances of each individual patient.

Sharlene Taylor became that dedicated point of contact. In this role, she has supported more than 100 young adults, providing specialist, person centred care that goes beyond medical treatment. Her support has included confidence building, mental health and wellbeing support, advice on benefits and finances, advocacy during appointments, and practical help with education, training and employment.

For many young people, the impact has been life-changing. One patient shared: “You no longer feel alone in the battle.”

Sharlene explains:

Living with kidney disease is difficult. The condition affects every area of someone’s life and for someone just starting their adult life, a diagnosis of kidney disease can be crushing and a real loss of confidence. This is a time to be looking forward to becoming an adult version of themselves; things like making friends, finding love, being financially independent and securing employment. But, to many young adult patients, these life goals can feel out of reach. Once a patient is referred to me by a healthcare professional, we work together to think about achieving their goals and improving their life.”

The impact of the service has been so significant that Sharlene and one of the young adults were invited to present their work at the national Kidney Conference at Edinburgh’s International Conference Centre, highlighting how pioneering and influential the service has already become.

Creating Connection and Reducing Isolation

Reducing isolation to improve wellbeing is a core focus of the Renal Young Adult Support Service, and creating spaces where young people feel comfortable, supported and understood is key to this. This is why monthly peer support groups at the Royal Infirmary have become a cornerstone of the service, as they offer a safe space for connection, discussion, and shared learning.

Alongside informal discussions, sessions also include practical life skills support, such as talks from Citizens Advice Bureau, and help for young adults to build knowledge and confidence for everyday life. These are balanced with social activities, including outings like bowling, recognising the importance of enjoyment, normality and peer connection.

The innovative and creative approach to engagement, is not just limited to the peer support group. Sharlene also held a “Kidney Friendly Bake Off” challenge as a way of making essential health information accessible and enjoyable. The young adults were invited to explore kidney friendly recipes in a relaxed, fun setting with friends and family invited to attend. Events like this help to extend support networks and reinforce learning at home. The event was judged by Kidney Kitchen Chef Paul Ripley, adding expertise and a sense of occasion to the experience.

Building Confidence, Independence and Hope

This practical support has also extended into helping young adults navigate their finances, education and work. For some, that meant understanding what benefits they were entitled to and getting help with applications they felt unable to manage alone, support that prevented homelessness and extreme financial hardship. For others, it meant building towards a more positive future through Youth Scotland Awards, volunteering, and skills sessions that opened doors to education or employment.

Art, Creativity and Confidence

Creativity has played its part too. As the group developed, a shared interest in art began to emerge. With support from our Tonic Arts team, young adults took part in a series of therapeutic art workshops, learning new creative skills, building confidence, and exploring their experiences through art. As Sharlene explains:

Art helps process emotions, reduces anxiety and stress, builds confidence and encourages mindfulness.”

Their work has been exhibited at the Royal Infirmary of Edinburgh, a celebration not just of their creativity, but of their strength and courage and how far they’ve come.

A visit to Glasgow Royal Infirmary’s art exhibition is planned as well to help build connections with other renal patients across Scotland.

A Life-Changing Trip – Made Possible by You

One highlight since the service was set up was the Kidney Care UK residential weekend in Derbyshire. For many young people, it was their first time away from home, first time travelling independently, and first-time feeling part of a group that truly “got it.”

All ten participants came home more confident, more connected, and more willing to talk about their condition. As one participant shared afterwards:

I had never been away from my family before. I grew in confidence.”

With another stating:

Because of my hearing impairment, I lacked confidence… on this trip, I spoke to people I’d never have approached before.”

Transforming the Renal Service

Inside the renal unit itself, the impact has been just as strongly felt. Staff describe this funded role as “critical,” “life changing,” “a missing piece,” and “vital.” Every single staff member surveyed said that Sharlene’s role fills a gap no one else has the time or capacity to fill, and that young adults are now more informed, more engaged, and more confident in their own care. One renal team member put it simply: “I feel we are now a more complete renal unit.”

Your Support Has Helped Build Something Extraordinary

Because of supporters like you, young adults across NHS Lothian now have a trusted person to turn to, a peer group where they belong, creative and therapeutic outlets, better financial and emotional stability, and better clinical outcomes. Most of all, they have a future that feels a little brighter – and that’s because of you.

We are proud to have supported the creation of this invaluable service, which addresses crucial aspects of young adults’ lives, including education, employment, relationships, and mental health. By providing additional funding to support resources and activities as part of this service, the Charity has supported these young people to thrive despite their health challenges.

By combining practical support with creativity and fun, the service helps young adults build confidence, connect with others who understand their experiences, and feel less alone in managing their condition.