When a baby is first diagnosed with CF, they and their parents are usually seen at weekly hospital appointments until the family has adapted to managing the treatment required at home, such as giving enzyme replacements, monitoring weight and undertaking physiotherapy. This is aimed at keeping your child as well as possible for as long as possible.
A confirmed diagnosis is normally referred to a CFNZ Fieldworker by the hospital CF Nurse. Parents are likely to be introduced to the Fieldworker at clinic and they will arrange a home visit, normally within a few weeks of the diagnosis. The Fieldworker will provide you with relevant information about cystic fibrosis and education. You will be provided with a New Diagnosis Pack. This Pack includes items such as: an introduction to CFNZ and the services we can provide, contact information for CFNZ representatives, a CF Parent Guide written by New Zealand CF health professionals and parents, and a notebook to keep track of everything. If you don’t receive a New Diagnosis Pack, please contact the CFNZ Office: email@example.com or Freephone 0800 651 122.
Once parents are managing the care at home, hospital appointments may be reduced to three-monthly visits. Although some families living away from main centres may not be seen as often. There are different degrees of cystic fibrosis. Not all children are affected the same way. Some may be well for a long time, others need lengthy hospital stays from a young age.
A diagnosis of CF is likely to come as a huge shock. Our organised has trained fieldworkers to help parents adjust and may refer you to other services for assistance.
Where do you go for formal government support?
You may be eligible for a number of different types of support from Work and Income NZ due to your child’s condition.
If you have any questions about where to access the forms or how to fill them out, our CF Regional Fieldworkers can assist. The Fieldworkers can also help you to navigate the various allowances from the Ministry of Health, available for travel, childcare etc. if they are required.
How to contact the CFNZ Fieldworker:
Northern Region – Gretchen Kitching
Ph. 09 308 9161. Freephone: 0800 651 122. Mobile 029 773 1398
Central Region – Jude Kelly
Mobile: 021 192 6234
Southern Region – Sue Lovelock
Ph. 03 341 8029. Mobile: 021 0222 1203
Other useful information and support
There are a number of other community-based organisations with which we have links. They can help with support for various aspects of life with cystic fibrosis:
Parent to Parent is a support and information network for parents of children with special needs: www.parent2parent.org.nz
Carers NZ are an organisation for family carers who support ill, injured, disabled or frail family members: www.carers.net.nz
Skylight is a publishing and counselling service who have a number of excellent publications on various topics relevant to life with CF: www.skylight.org.nz