Transitioning care from paediatrics to adult care

Great Ormond Street Hospital

As one of the largest children's hospitals in the UK, Great Ormond Street Hospital (GOSH) is home to a leading gastroenterology department caring for some of the most poorly children and teenagers across the country and beyond.

The department cares for children and teenagers suffering from intestinal failure - a highly complex condition which requires a nightly treatment of nutrients to be infused into the bloodstream - something usually administered by parents or carers.

A daunting and complex transition for teenagers moving from paediatrics to adult care, the transition between care pathways can be extremely disconcerting. With so much change, from being cared for by different multi-disciplinary teams to familiarising yourself with a new hospital environment, for young adults in the process of taking on responsibility for their own care and treatment - often from parents or carers too, some adapt better than others.

To facilitate this change, Patients Know Best (PKB) digitally transitioned patients’ medical histories between Great Ormond Street Hospital and St Mark’s Hospital in Northwick Park, London. It was here that our patient portal was introduced as a ‘medical facebook’ in the gastroenterology unit to support young adult patients.

Encouraging ownership and empowerment for the move to be successful, GOSH realised that it was vital for patients to be empowered to take active ownership of their health. As the only constant in this transition, it was imperative for patients to take a leading role. PKB enabled patients to do this by providing online consultations and access to their patient notes, clinical letters, appointments and results. However, due to the complex nature of the condition, treatment was typically delivered by multi-disciplinary teams such as specialist nurses, dieticians, pharmacists, home care companies, GP’s, administrators and doctors themselves. Joining up these groups was key to ensure consistency during the transition period - something that was often difficult to achieve with the previous system.