Why I help Bliss fund research - Ben's story

Ben, born premature, is a member of the Bliss Research Panel that help Bliss to identify areas and research questions that would benefit most from Bliss funding. Here, Ben tells us why he joined the panel.

This story was originally shared in Little Bliss magazine.

I was born extremely prematurely, at 23 weeks, back in 1990. I was fortunate enough to be enrolled on a research study which tested artificial surfactant, a detergent-like substance which helps the lungs inflate fully when breathing and stops them from collapsing – a major problem in very premature babies with underdeveloped lungs. All these years on, not only am I fit and healthy but surfactant replacement therapy has proven to be incredibly successful and a major factor in the increased survival rates of very premature babies.

My experience made me want to get involved with Bliss’ new Research Grant Fund as a public panel member. I wanted to ensure that the researchers of today get the chance to make a similar difference for the babies of the future.

Bliss’ Fund will award grants to researchers hoping to study three main areas: assessing pain in premature and sick babies, measuring the impact of developmental care and neurodevelopment and determining the most effective ways of giving emotional and practical support to improve bonding between premature or sick babies and their families.

Any researcher who applies to the fund will go through two rounds of long and shortlisting. If the amount of money requested is more than £10,000 then their application will be reviewed by two independent experts and the panel that I sit on.

The panel is made up of six professional members (healthcare professionals and academics) and seven public members (parents, family members and adults who were born prematurely) with public and professional co-chairs. Having equal representation from professional and public members was important when deciding on our research areas.

For example, we said more research is needed into pain, neurodevelopment and bonding, but practical support for these is equally important from a parents’ perspective. By focusing on these combined areas we hope to fund research that tackles the underlying medical challenges in a way that is practically useful and relevant to babies, parents and families and takes their experiences into account.

Despite the advances in neonatal care in the past 20 years alone, the breadth of these research areas shows how little is still understood in some types of care and therefore why research is so important. I am pleased and proud to be on Bliss’ Research Grant Panel and contribute to work that could make such a big difference to premature and sick babies.

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