In the words of Sally Ann Lynch “genetic counselling” is a most misinterpreted concept! Way back when, counselling meant advice and it is in this context that it is still used today when describing genetic services. The service is most certainly not “touchy feely”, although all concerned are very pleasant! The service is not one of telling people what to do either nor is it about finding fault. So what is the service about?
The service is about providing as much information as is possible about the type of cleft a family may have encountered. The process is reasonably simple, a family tree is taken and a quick history of a child’s well being is noted. The genetic consultant will then do a physical check on the child. This is really all the information that is needed. The consultant should then be in a position to advice the family based on current research. [Remember there are a lot of gaps in our knowledge regarding the cause of cleft].
There are a few things to remember about the service offered:
- The service is free
- Waiting lists are small 2-3 months
- Referrals must go through a cleft team
- There is no strict policy on automatic referral, although this is something that is being considered by cleft teams.
- So what do you do if you get an appointment for a genetic consultation through the post?
- Keep the appointment. More information can only help. [& there are no needles!].
- If your family are not ready yet, contact the clinic so that another family can use the time slot.
- If you haven’t had a consultation but think it would be of benefit to your family contact your cleft team.
- Finally, there is no time limit on seeking a genetic consultation!
The Association would like to thank Sally Ann Lynch for her comprehensive presentation. It is the first such talk we have had on genetics – we hope we may enjoy many more!
Download our leaflet on Genetics:
Genetics of Cleft Lip & Palate (pdf, 78kb)