Each June CDH UK, who is the registered UK charity supporting families affected by the often fatal birth anomaly Congenital Diaphragmatic Hernia, focuses on raising extra awareness of the condition, by promoting June as CDH awareness month and the 28th of June as CDH Awareness Day.

Beverley Power, Trustee and Secretary of the Charity, explains why this is such an important initiative for everyone involved:

"CDH is a complex and challenging medical condition for both patients and medical professionals.

"Due to the relatively low numbers of live births (approximately 1:2500) the experience of treating patients is low."

"This often results in a poor understanding of the needs and requirements of patients who survive the condition and of the complications they may face. It can also result in a lack of research into CDH and better management and treatments to help improve outcomes for patients and their families, something which CDH UK has been very instrumental in improving over the past few years.

"Raising awareness has been one of the major factors in helping CDH UK to help improve patient experiences and outcomes and the reasons why are simple. Firstly it raises the profile of the condition and the charity with the general public, this has a positive effect on the funds raised for the charity which means more money to invest in supporting families effectively and for instigating and supporting research projects. Awareness also creates new relationships with patients, medical professionals and other organisations, who may not have come across the charity otherwise.

"Better awareness helps CDH UK to grow its network of medical professionals and, importantly, its database of patients."

"It can also give CDH UK a larger voice and create new platforms from which we can raise further awareness and create more in-roads. This helps medical professionals access more patient experiences and information, which can help to improve services and better patient experiences.

"The transition from paediatric services to adult services is a good example of this. Awareness can also help to improve the diagnosis of the condition and to help those affected be better prepared for any future eventuality relating to the condition, such as re-herniation or other complications. It also improves the Charity’s understanding of how to better support its end users, so for example with bereavement care.

"So CDH awareness month and day are very important tools for improving patient experience and outcomes and we hope that you will help us by making it a date in your diary each year to help promote CDH awareness and its associated events."

 

For further information please visit our website www.cdhuk.org.uk