Writing Excellence - Patients/Consumers

Summary of work

Initial research performed in collaboration with The Somerville Foundation (TSF) and Actelion Pharmaceuticals UK Ltd highlighted the lack of awareness of pulmonary arterial hypertension (PAH) associated with congenital heart disease (CHD). As PAH can have a negative effect on morbidity and mortality, particularly if untreated, this can have a severe clinical impact. To address this, a plan was put in place to develop a resource to support communication between patients and healthcare professionals to improve understanding of this condition. The first step of this process was to perform research, in conjunction with an expert scientific panel, to identify educational needs of PAH–CHD patients. The results directly informed the contents of the educational resource, Pulmonary arterial hypertension with congenital heart disease/Eisenmenger’s syndrome: What it means for you. The final draft of the leaflet was placed on the TSF website for consultation with its members and received unanimously positive feedback on content and language. After the final leaflet was uploaded on to the TSF website, TSF requested support from Actelion for printed versions of the leaflet, hard copies are now being distributed to specialist grown-up congenital heart disease (GUCH) centres throughout the UK.

Judges comments

Tackling a difficult topic to explain in Plain English, this booklet managed very well. We liked the real effort made to involve both people with the condition and their families, through some carefully planned research. They took the brave decision to upload a draft for consultation and ultimately produced a cost-effective way to reach a small number of patients.