Supporting Patients Case Study

Involving patients and carersSam is a 16year old with sickle cell disease who is frequently admitted with painful crises and often feels isolated and forgotten on a busy children's ward. His GP hears about a new initiative to engage teenagers in the re-design of community services including integrated pathways for patients with sickle cell disease. Sam meets other young people with sickle cell disease in a youth centre and connects with them via social media. A newly appointed consultant decides to meet with this group out of the hospital setting alongside the clinical nurse specialist and helps them devise personal pain management plans and an app to record their medication. She has demonstrated improvements in patient reported medication compliance and outpatient DNA (did not attend) rates. Patient feedback has also improved and Sam reports feeling more in control and less isolated. He describes being an expert in managing his condition.