This item was published during the term of a previous administration that ended in April 2007
Cystic fybrosis screening
All new parents will be invited to have their new born babies tested for cystic fibrosis in the first few days of their lives to ensure earlier detection and better treatment of the chronic disease, the Executive announced today.
It is hoped that the screening programme will find earlier the 20 to 30 children born with cystic fibrosis a year.
Announcing the new national screening programme which begins this month, Deputy Health Minister Mary Mulligan said:
"Sadly, we cannot prevent a child being born with cystic fibrosis but through early diagnosis we can make sure that treatment is given at the earliest possible stage so that the complications associated with cystic fibrosis may be less severe and that parents are given the information and support they need to care for the child.
"The introduction of cystic fibrosis screening is yet another step towards meeting the pledge set out in the Scottish Health Plan to give every child in Scotland the best possible start in life. This includes better pre-birth services for mothers, promotion of healthier lifestyles and better services for children with special needs."
Rosie Barnes, of the National Cystic Fibrosis Trust, said:
"The Cystic Fibrosis Trust has recognised the importance of screening babies for cystic fibrosis at birth for many years. Not only does it save babies and their families months if not years of suffering and inappropriate treatment, it is now clear that babies who are diagnosed at birth and treated immediately will be more likely to remain in good health for longer than those who do not receive effective treatment for months or years.
"The Cystic Fibrosis Trust would like to thank the Scottish Executive for introducing newborn screening for CF. It will spare a great deal of misery and will enable babies with CF to lead healthier lives for longer."
Cystic fibrosis is an inherited disease which mainly effects the lungs and can cause recurrent and persistent chest infections and malnourishment.
Between 20 and 30 children are born with CF each year in Scotland. There are currently 389 children in Scotland affected by the condition.
About half of patients born recently can expect to survive to age 60 years compared with 19 years three decades ago.
At present most newborn babies have a dried blood spot specimen taken around the sixth day of life to test for phenylketonuria and congenital hypothyroidism. Newborn screening for cystic fibrosis will be introduced using the same blood spot.
The NHS Scotland screening programmes, National Services Division Common Services Agency in conjunction with NHS Boards and Trusts will co-ordinate and monitor the implementation of the screening. The cost will be met by NHS Boards and Trusts.
Other developments to support a range of pregnancy and newborn screening programmes, including cystic fibrosis, are being developed:
- Information leaflets
- Training road show events around Scotland for health visitors and midwives
- Quality Standards are currently being developed by NHS Quality Improvement Scotland