The recent Cleft NZ survey has endorsed the need to grow organisational capacity and push for best practice in the delivery of services for cleft people and their families.
“I would like to thank all those people who took the time to complete the survey”, said Chairman of Cleft New Zealand John Frear. “This information will be invaluable to us as we identify our priorities ahead”.
The survey was completed by 126 people in total – 29 people with cleft, 86 family members and supporters and 11 medical professionals. This was almost 30% of the 400 or so people listed on the Cleft NZ database so it was a very pleasing result.
Cleft NZ services are very well received, especially the Blue book and the new web site. The social functions were also appreciated but there is a need to hold more events outside Auckland. Social networking sites (like our Facebook page) are seen by many as a really good way to put people in touch with one another across the country.
Although the 0800 Cleft NZ number and parent support service received relatively low usage, the availability of these services for those that need them was seen to be very important. Most people see surgical repairs as being exceptional, although cleft people were marginally less favourable in their ratings.
Key opportunities for development were identified. Foremost among these were the need for improved socio – psychological support services to help address difficulties with self esteem and lack of confidence. Genetic counselling was also seen by cleft people and their families as an area needing improvement. Paediatric support and coordination was seen as lacking and capturing speech and audiology development needs were other areas for development. A number of the professionals felt the “system” was not enabling them to be fully effective. Advocacy is seen by most to be an important role for Cleft NZ.
Interestingly many were not aware that Cleft New Zealand membership is open to all cleft people, their families and supporters including friends, extended families and medical professionals. Pleasingly there was support for the idea of introducing subscriptions to help fund the organisation. Preference was given to a low level subscription between $10 to $50, but with discretion to nominate higher levels of contribution.
“We will use this information to develop our services and advocacy”, says John.