BACKGROUND INFORMATION ON CEN/TC 424 – “CARE SERVICES FOR CLEFT LIP AND/OR PALATE”
1. The issue
By its decision 5/2013, the CEN/BT decided to create a new Project Committee: CEN/PC 424 “Care services for cleft lip and/or palate” and to allocate its Secretariat to ASI with BDS as twinning partner. The deliverable of the committee will consist of one CEN Technical Report containing a set of guidelines and recommendations, which would serve as a model for those countries where there are no national protocols for cleft care. The following CEN members, ASI, ASRO, BDS, NEN and SFS, are committed to participate actively in the development of the project.
Approximately one in seven hundred children throughout Europe are born with cleft lip and/or cleft lip and palate. The condition is completely treatable, and with the right medical care and social support, children born with clefts can go on to achieve the same as any other child. Yet access to good treatment varies enormously throughout Europe, meaning that many children born with clefts are never given the opportunity to realise their full potential. Furthermore babies with clefts are still abandoned in some countries in Europe. The general aim of the committee is to try to address the huge inequality in cleft care across Europe by the development of an informative document (as CEN Technical Report) adopted by those countries where national protocols need to be established.
CEN: European Committee for Standardization
CEN/BT: Technical Board
CEN/PC: Project Committee
ASI: Austrian Standards Institute
BDS: Bulgarian Institute for Standardization
ASRO: Romanian Standards Association
NEN: Netherlands Normalisatie-instituut
SFS: Suomen Standardisoimisliitto r.y. (Finland)
2. Scope and objectives of CEN Technical Report
Having in mind the type of CEN deliverable intended to be developed (CEN/TR) the outcome of CEN/PC 424 work does not establish requirements but only guidelines and recommendations for the early care of babies born with cleft lip and/or cleft palate at time of diagnosis (ante and postal natal) and in the perinatal period including referral processes, establishment of feeding and parental support.
The CEN Technical Report aims to specify the support needs of the baby born with cleft lip and/or palate; the support needs of the family with child born with clefts and skills, knowledge and professional qualifications required to meet those needs.
Proposed areas to be addressed include:
- Antenatal Diagnosis
- Immediate Postnatal care
- Feeding assessment and establishment of feeding
- First weeks – Monitoring baby at home
- Guidance on directing parents to appropriate parent support groups
- Guidelines on defining the care pathway for the first month of life
- Guidelines on the Cleft Unit Team Members and Facility requirements
- Guidelines on organization of the cleft services, including clinical governance and audit
3. Benefits of developing a CEN Technical Report
Provides an agreed baseline document of cleft care which can be used as a model throughout Europe.
- Facilitates reduction of health inequalities and thus supports the Commission Policy on patient safety and health care inequalities in Europe.
- Can be used as an empowering tool, enabling patient groups to lobby for changes to deliver best practice. The guidelines in the report would help the families ask the right questions and work with professionals.
- Accelerates the process of development of new networks of health professionals and patient groups (see below)
- Elaborated by all interested parties – health professionals, users and representatives of public health bodies – the document will represent the best practice guidelines for cleft care and the process of establishing these guidelines will raise the profile of cleft lip and palate.
- A Technical Report agreed by stakeholders in Europe for one specific birth defect – cleft lip and palate could become a model for other conditions, not just in Europe but across the globe.
4. Links with EUROCleftNet
The ESF-funded EUROCleftNet programme has highlighted the need for European collaboration in cleft care and research. EUROCleftNet steering group members are now represented on the CEN 424 Technical Committee which means the guideline drafting process can draw on the enormous expertise harnessed by EUROCleftNet since its inception. It is no coincidence that the 2013 EUROCleftNet conference in Plovdiv, Bulgaria coincided with the start of the CEN drafting process. Furthermore, EUROCleftNet has emphasized the need for developing new networks in Eastern Europe and it is also no coincidence that the Bulgarian Standards Agency (BDS) in Sofia was selected as the secretariat for the CEN drafting group.