Kidney disease and renal failure predominantly affect individuals during their later years.  However, there are still a significant number of young children and teenagers who have to cope with the reality of kidney disease and renal failure on a daily basis.

 

The Kidney Wales Children’s Centre (UHW) first opened in 1995 offering specialist inpatient care to children with kidney disease and renal failure. In 1999 the outpatient department moved from the CRI to offer all aspects of clinical care on the UHW site.  

 

Sister Rhian Hughes and Sister Helen Williams head up the Centre’s busy nursing team. Although both are involved in inpatient and outpatient care, they each have their special interest within the unit.  “Primarily I look after the children on peritoneal dialysis,” explains Rhian. “We currently have seven patients on peritoneal dialysis. Peritoneal dialysis holds many advantages for children [over haemodialysis] because they can dialyse at night and still attend school.” Rhian teaches the parents how to use the dialysis machine at home. “The majority of parents say to you ‘oh my goodness I can’t do this.’ But with the training, in time they find that they are competent and confident with it. And then of course they are supported by us. They tend to come to clinic at least every six weeks. We are always at the end of a telephone and I will also go out and do community visits if I feel that there is a need.”

 

Sister Helen is usually responsible for post-transplant care. “We currently have five patients waiting for transplants and twenty-four post-transplant patients. We work very closely with the team at Bristol Children’s Hospital. The children have their operation in Bristol. They are usually in hospital for about 2 weeks following the operation. We provide a lot of the pre-transplant education here and following the operation they initially come to our out-patient clinic about 3 times per week.”

 

However, the responsibilities of the Children’s Kidney Centre stretch far beyond looking after the child. “We look after the whole family,” explains Sister Rhian. “Having a child with renal problems is such a burden of care. Particularly for the primary carer, who has to perform dialysis, look after the PD catheter [used in peritoneal dialysis] to prevent infection, they may have to administer injections and medication, and the child’s fluids are often restricted as well as their diet.”  However, Sister Rhian is confident that the Kidney Wales Children’s Centre provides a high level of care for all their patients and their families. “We have a great team that includes Nurses, Consultant Paediatric Nephrologists, Dieticians, a Social Worker, a Psychologist and a Play Specialist. Our team is easily accessible to the families whenever they need us. Everybody knows we are at the end of the phone 24 hours a day.”