The Williams Syndrome Foundation Link Nurse Project.
I am a paediatric nurse with an additional qualification to support children and adults with learning disabilities and their families.
My introduction to Williams Syndrome was in 1999 when I commenced a five year project with the Foundation to travel the UK, regularly visiting all regions to gain data from children and adults with Williams Syndrome as they were growing, to enable the production of our own WS growth chart. When the project concluded I was asked to join the Professional Advisory Panel of the Foundation and over the years the families have gained familiarity and feeling at ease to speak to me whenever they are seeking advice.
The availability for the continued need for confidential nursing support and advice to be available for Williams Syndrome families and carers was maintained. The idea was for a link nurse to be available to attend the social events as a source of information and reassurance, and to be available on a one-one basis for confidential advice to parents and Williams Syndrome adults – the latter of which always have a need for a confidential chat! These events offer the opportunity to introduce myself to newly diagnosed families; this first introduction allows these parents to have a familiar person to speak to them for follow up advice and support on the telephone. Dedicated telephone calls are made to families in the evening following requests either from the Williams Syndrome office, or regional contacts to give advice or sometimes it is just to reassure the families that they are doing everything right.
There are many and varied issues that are encountered, some more common that others – feeding problems, constipation, talking – not talking! Delayed milestones. During transition into growing up, puberty can introduce itself at a very young age and support with regard to coping with this transition is a regular request for both the girls and the boys, in particular how to deal with girls menstruation, and boy’s night-time issues!
Over the past 20 years I have met hundreds of families, I have I seen the WS babies grow and develop thorough childhood into adolescent hormonal teenagers then into young adults! I now look forward to meeting and being available to support all the new generation of families over the coming many years.