'Investment needed' to support young adults with kidney disease

Kidney transplant recipient Lisa Fitzgerald at the Dáil for a briefing session which highlighted Irish Kidney Association recommendations for improving the lives of people affected by chronic kidney disease.

Teenagers with kidney disease who transfer to adult services without proper supports can be fearful and confused, often dropping out after the first appointment, a senior consultant has warned.

In some cases, parents of adult children with disabilities and kidney disease are changing them on the floor of toilets without space to use a wheelchair or hoist, amid other concerns.

Brenda Griffin called for a change in how this transition is managed, especially for children who will attend the new children’s hospital and have heightened expectations of what is possible.

“We want to get ready,” said Dr Griffin, calling for investment.

“A poor child who is used to being minded like a new penny in paediatric services comes to the adult clinic, and they could be sitting beside an 80-year-old or somebody on dialysis. That tends to be very frightening.” 

Having worked in 15 renal units in Ireland and the UK, she said it is known that gaps in care cause health risks.

She highlighted international data showing one-third of young adults moving from paediatric to adult services lose the transplanted kidney within three years.

What we would like is that we have dedicated clinics for young adults so that it’s better suited to their needs.

“One of the problems we have is the young adults come and they don’t come back. They come to the clinic and then non-attendance after the first visit is a huge thing, because it is so different and it can be quite frightening.” 

Dr Griffin, a nephrologist at St James’s Hospital and Tallaght University Hospital in Dublin, said high investment in the new children’s hospital is leading families to expect better care.

“Really, the children’s hospital is carrying the hopes of an awful lot of parents.

“We’ve had in James a lot of children with tuberous sclerosis transferred to us and they come and they see they are in a general nephrology clinic. It’s not what they were expecting or hoping for.” 

Families are already advocating for change using their "private personal experiences", she said.

Dr Griffin joined the Irish Kidney Association (IKA), other consultants, and transplant recipient Lisa Fitzgerald on Wednesday to brief politicians at the Dáil. 

The meeting, hosted by Fine Gael spokesman on health Colm Burke, heard that improvements for patients can lead to direct savings in healthcare and legal costs.

The IKA also called for protected theatre and bed space for organ donation and transplantation.

It would like to see an annual potential donor audit, access to timely completion of medical care before transplant or living donation, and kidney disease included in all chronic disease programmes.

IKA chief executive Carol Moore said about 500,000 people in Ireland have chronic kidney disease.

“This equates to between one in 10 in the general population and one in seven of the over 65s population,” she said. 

“Earlier diagnosis and intervention are critical and will reduce costs and deliver better health outcomes for [them].” 

Dialysis is estimated to cost over €300m annually, she said.