Newborn screening service evaluation

The diagnosis of cystic fibrosis (CF) by newborn screening blood spot test has been running in London and the south east since 2007.

Here at Great Ormond Street Hospital (GOSH), we want to make sure that we offer the best and most appropriate service to families around the time of that diagnosis and continued follow-up.

We have decided that after four years we need to examine and evaluate how we have been doing and to change and improve our service if required.

In order to do this we have received some consultation (free of charge) from Royal Bank of Scotland insurance management consultancy team. They have informed us of an evaluation protocol that we can use to assess our service provision from diagnosis in the newborn to first annual review.

We will be inviting a number of parents whose babies have been diagnosed via newborn screening if they would like to participate in this service evaluation.

We are hoping our service will be improved, keeping the best bits and changing those that are not so good, but the important thing is that the parent’s voice will be the key source of our information.

We are hoping that we will have the evaluation findings in July and will update you here on the website.