Some children have to be seen by multiple specialists for much of their lives. This includes children and young people with Crouzon syndrome or Treacher-Collins syndrome, where cranial and facial deformities can impair hearing and eyesight and cause difficulties with breathing and eating, for example. Coping with everyday life is very challenging for families when their calendar is packed with appointments. Nine specialists at Rigshospitalet have got together and come up with a solution, for example by scheduling all the appointments for the same day. Karen Vitting Andersen, clinical lead consultant at the Department of Paediatrics and Adolescent Medicine, is behind this initiative for improvements.

“Many of the children used to have to attend Rigshospitalet anything from two to four times a week to be examined in different clinics. Now the vast majority can make do with coming in for treatment on Wednesdays, if that fits in with the patients’ other needs; for example, a young child might need to have a nap or eat, so it doesn’t always make sense to compress all the appointments into one day,” Karen Vitting Andersen explains.

The new pathways required massive coordination efforts by staff, who have spent a year planning how to bring patients’ numerous appointments together into some good  coherent pathways across hospital departments. This project is a continuation of many years of preparatory work by the Clinic for Rare Disorders charting the complex pathways for craniofacial patients:

“Patients greatly appreciate our top expertise. But we didn’t think it was reasonable for families to have to attend so many times because of our poor coordination. So, we got together to review when, in the pathway, patients should be seen. Next, we prepared a chart of the different patient pathways that’s much more systematic than the diagnosis and treatment plan that patients used to have,” Karen Vitting Andersen explains.

 

Apart from planning the actual pathways, this work resulted in the appointment of a patient pathways coordinator to help families keep track of the many appointments, places to attend and general information.

The success of the craniofacial patient pathway has inspired efforts for a new convention for children, young people and pregnant women at Rigshospitalet, where cohesive patient pathways are one of five focus areas. Other specialties have also accelerated their work of creating better pathways for patients, including CNS brain tumour patients and patients born with an abdominal wall defect.

When Rigshospitalet’s new hospital building for children, young people and expectant mothers – BørneRiget – opens, this framework will mean not only that patients attend appointments on fewer days, but also that they won’t have to go trailing around the hospital to visit different departments. At BørneRiget, the specialists will come to the patients instead of the patients having to move around between specialists.