Developing an early care training programme for health care professionals working with children born with orafacial clefts and/or craniofacial conditions

New cleft resource launched at European meeting

ECOs directory of cleft services in Europe, the European Cleft Gateway was officially relaunched on 8 June in Utrecht, Netherlands. The new directory has multiple search functions for different categories of user and allows users to add their own data. The launch was kindly hosted by the Wilhelmina Children’s Hospital in Utrecht and coincided with a meeting of the EU-funded European Reference Network (ERN) for craniofacial anomalies.  Speaking at the event, Gareth Davies explained that the directory would be an excellent tool for disseminating information to a wide audience.  He also explained that in the context of the ERN,  ECO should offer its services to ERN members as a training organization, citing specifically the ECTP project

Paul Boom, Dutch Ministry of Health - speaking at the event


European Parliament meeting

The European Cleft Organisation was delighted to be a key participant in a delegation to the European Parliament on 27 February 2018. The breakfast event, hosted by MEP Sean Kelly and attended by a diverse audience of other MEPs and policy makers, was an opportunity to get clefts and craniofacial anomalies on the Parliament’s agenda. The aim is to start pressing the European Commission for specific resources for cleft and craniofacial care in order to reduce the huge inequalities across Europe, enabling equal access to good quality lifelong cleft care. Speaking at the event, ECO Executive Director Gareth Davies, said ‘access to good cleft care is a basic human right and everyone born with a cleft and craniofacial anomaly should have the opportunity of realizing their full potential. There are a million people in Europe with clefts – equivalent to a city the size of Brussels. This is not a marginal concern and needs addressing urgently”  He went on to explain ECO’s efforts to this end and highlighted specifically the Early Care Training Programme which will equip health professionals to give the right advice and support in the crucial early days and weeks after a diagnosis.


COST Action -  European Cleft and Craniofacial Initiative for Equality in Care

The importance of access to best practice early cleft care was a key theme at the first meeting of the COST Action 16234 in Zagreb, Croatia at the end of January.  The Action European Cleft and Craniofacial Initiative for Equality in Care aims to take a snapshot of cleft care across Europe and make recommendations on how to ensure fair and equal access to good quality cleft care can be achieved in future.  25 countries are participating in the Action and the first conference will take place in Nis, Serbia in September with diverse speakers from Europe and beyond with the primary theme being equality of access to cleft care.  The ECTP programme will feature prominently as an example of how we can turn knowledge into action. 




Meeting in Lithuania 

Individuals born with orofacial cleft occur in every European nation, across every ethnicity and socioeconomic status. It is acknowledged at European level that health professionals do not have enough resources or training to meet the demand. Therefore the aim of this project is to develop a culturally adapted European training project that can be utilised even in the partner countries that have limited resources. The training will equip healthcare professionals with the knowledge and skills to make an accurate diagnosis, provide specialist early feeding advice and assessment, provide appropriate information and support to the family and establish a structured care pathway. The ultimate aim is that affected individuals will receive equal access to and quality of care where ever they are born in Europe.

The partners in the ECTP project are all excited about how the project is moving forward. We have had two transnational project meetings. Each partner has produced a National report focussing on the current situation in relation to provision of early care for children with orofacial cleft and their families in their country. The reports address the particular and unique situation in each partner country and will be the basis for the national adaptations of the course that is being developed.



Kick-off meeting in the Netherlands 

The new Erasmus+ cleft nurse training project Early Care Training Programme (ECTP) had a successful kicked off in the Netherlands this September (29/09/2017). The two-year project aims to provide a comprehensive short training programme in cleft nursing that can be made available online and easily adapted for different settings. Our partners include Romania, Norway, Greece, Bulgaria, Latvia, and Lithuania.

Gareth (ECO) gave an overview of the reason for this project and a history of the application process. Early cleft care had been a core element of ECOs mission since its inception and it was recognised that if early needs of baby and family were not addressed adequately the child would be likely to not cope in life as well as their peers. The previous Erasmus projects had been great opportunities for developing training courses in other areas of ECOs work and this will now be repeated with early cleft care. Key advantages were that the training is put together by a collaboration of different partners from different backgrounds, making the end package accessible to those working in different environments and settings. Furthermore, the material would automatically be published in the language of the partners making it fit for immediate implementation in those countries.

Emma (ECO) gave an overview of the project highlighting its aims, outputs, planned project management meetings, desired results, strategic working groups and networks, the timeline and due dates of the project, website, pilot sessions, multiplier events and expected impact.

Intellectual Outputs
O1 - National Analysis and Survey
O2 - Report about families perceptions of their needs in the provision of early care
O3 - Pedagogical report on learning outcomes for an occupational standard in relation to the European Qualification Framework
O4 - Curriculum Development - Learning/teaching/training material:
O5 - Piloting and testing of training course
O6 - Revision and finalization of training course

The results of national surveys illustrating current knowledge of early cleft care will be discussed at the next meeting in Vilnius at the end of February.