Newborn screening service update

The diagnosis of cystic fibrosis (CF) by newborn screening blood spot test has been running in London and the south east since 2007.  You will be aware of a project that was being undertaken by the Great Ormond Street Hospital (GOSH) CF Unit to evaluate the service we provide around the time of diagnosis (following the heel prick test). This project involved many of you giving up your valuable time to help us understand how you felt about the service and how it might be improved.

• Changes have been made with regard to the very first contact with families to inform them of the heel prick result (recognising of course that this is never a 'good' way of receiving this kind of news). These changes mean that the time interval between us receiving an alert from the newborn screening laboratory and seeing the family for the first time has been significantly reduced.
• The format of the very first visit to GOSH has been changed and families now usually meet the consultant and/or the clinical nurse specialist on arrival and before any further tests are carried out.
• We have updated the written information we provide and the leaflets can also be downloaded from this website.
• We are still working towards changing the very first CF clinic appointment to ensure new families have longer time with the team.
• In future we will be mindful of the way we communicate information about research projects ensuring that this is done at a time point that is suitable and sensitive.
• Our weekly team meeting has been changed and in future the notes for children due to attend clinic that afternoon will be discussed to ensure that all team members are up to date with any relevant issues. 

There were some aspects of our service that we found were very much valued and we will ensure they continue:

• Our clinical nurse specialist and physiotherapist will continue to undertake appropriate home visits in the immediate period following diagnosis.
• The current Education Day (where families can gain information specific to their baby and ask any questions they have) will not change.
• We will continue to ensure that all the CF team members have up-to-date knowledge of all CF treatments and new developments so that all the Multidisciplinary team can provide appropriate support and advice.