Rosanna Preston on the Fetal Anomaly Screening Programme

I attended a really positive event yesterday run by the Fetal Anomaly Screening Programme. 

There were 40 representatives from cleft teams and other health professionals including sonographers, paediatricians, nurse and midwives. The aim of the day was to decide if it would be helpful to write a care pathway which would describe what should happen from the moment that a cleft lip is diagnosed at the 20 week scan. CLAPA volunteer Rachel McDermott gave an excellent talk to the group about her experiences after her daughter was diagnosed with a cleft lip at her 20 week scan. Having someone there who had “been through the system” really brought home to everyone which parts work well and what needs to be improved. Some key points emerged during the day:

• Parents should be given the option to contact their cleft team straight after the first scan rather than waiting for the second scan to confirm the cleft. Not all parents will want this but some people want as much information as they can get as soon as possible.
• Up to 80% of cleft lips are now detected at the scan, but many women don’t realise that the 20 week scan is looking for fetal anomalies and the diagnosis can be a great shock which they will need help to understand and deal with.
• There is a serious problem with cleft palates not being diagnosed until the child is weeks, months or even years old (over 30% were not diagnosed in the first 24hrs in a recent survey). Training needs to be improved to make sure that midwives, paediatricians and GPs know they have to look inside the mouth to check (rather than feeling with their finger).
• The current Newborn Infant Physical Examination Programme (NIPE) does not include checking the palate but if there is pressure from health professionals that this should be included then there is a chance that this could change.

FASP will now draft a care pathway for the group to review and hope to have a the final version published at the end of May 2012.

It was great to see everyone working together to improve care and support for parents of children with a cleft and it was a brilliant example of how by volunteering for CLAPA you can have a direct impact on the way care is provided.

Let us know if you have any thoughts on this process or would like to get involved in CLAPA’s work:

Rosanna Preston

Lead on User Involvement