Skip to main content

Award winning

Some good news to end the week – The Somerville Foundation PAH-CHD booklet was highly commended at the Communiqué awards on Thursday 2 July 2015.
 
Initial research performed in collaboration with The Somerville Foundation (TSF) and Actelion Pharmaceuticals UK Ltd highlights 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."

Thank you all to everyone involved in putting this resource together.




« View all News
image description

Help & Advice

Information on managing your heart condition, including Physical, Emotional and Mental Health.

Read more
image description Make a Donation

Make a donation to The Somerville Foundation today and you will help us to continue to offer the valuable services we provide to those born with a heart condition.