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

European Cleft and Craniofacial Congress 

Several partners from ECTP attended and presented at the European Congress in Utrecht on June 2019.  Over 700 delegates from around the world participated in the congress, themed Future perspectives in research & therapy.   Professionals attending this congress benefited from high-level scientific presentations, knowledge sharing and networking opportunities, with the overall goal of promoting understanding and treatment of clefts and other craniofacial anomalies

There were dedicated sessions on nursing and opportunities to present the ECTP project in front of a large audience.  ECTP coordinator Gareth Davies produced a poster for the event describing family’ expectations of early care, using research material gathered during the ECTP project to illustrate family perspectives. He was able to promote the upcoming ECTP multiplier event in Rotterdam in October

Other ECTP partners spoke on different aspects of cleft care in Europe, including Martin Persson  who spoke about equality of cleft care in Europe and who also highlighted the work of another Erasmus + plus funded project (CET), designed to ensure patients have a realistic understanding of outcomes after surgery which illustrates the need for a much more patient/parent-centred approach to care. 

Above all the Congress provided excellent networking opportunities in Europe and beyond with opportunities explores for future collaboration in terms of research, education and sharing best clinical practice.


ACPCA Congress Tucson, Arizona  10 -13 April 2019 


Executive Director of ECO Gareth Davies attended and presented at the 76thCongress of the American Cleft Palate Craniofacial Association in Arizona, April 10 – 13, where he showcased some of ECO’s projects. The congress attracted over 750 delegates from all over the world. 

Gareth Davies presented papers on two Erasmus + funded grant programmes, the first developing training in the early care of babies born with clefts ECTPand the second, a programme developing training for surgeons and cleft team members helping them understand expectations of surgery in children and older patients (CET).  He was also been involved in presenting a paper on the development of global programme standards for the delivery of cleft care in his role as coordinator of the World Cleft Coalition. You can download the standards here.

Finally, as Vice-Chair of COST Action European Cleft and Craniofacial Initiative for Equality in Care (ECCE) he updated the Congress on the progress of this project which is assessing access to cleft care across the Action’s 26 countries in Europe and will make recommendations for future ways of ensuring equal access for all. You can read more about this on the Action’s website 




Training School Malta – Cost Action 16234 

The training school, organized by the Cost Action ECCE project took place in Malta 25 - 27 March, with over 50 participants attending from various backgrounds in healthcare professions. The focus of the training school was on the patient perspective of care in cleft and craniofacial conditions. During the training school, Gareth Davies from ECO ran a workshop on parent and patient needs and expectations.  In particular, he focused on what health professionals need to know about how having a child with a  cleft can impact on everyday family life.  The importance of early support and comprehensive care in the early weeks and months, which is at the forefront of the ECTP project, was stressed in many contexts.  The workshop was very well received by health professionals from all over Europe, with a request that a similar workshop should be organized at the main cleft and craniofacial centre in Barcelona, Spain, in the autumn.


ERN CRANIO  meeting in Uppsala  9 – 10 November 2018


Health Professionals, researchers and patient representatives gathered in Uppsala, Sweden on 9-10 November 2018 for the 3rd ERN CRANIO meeting. The meeting was opened by the CEO of Uppsala University Hospital, Mr. Eric Wahlberg, and began with a morning of educational sessions on the topic of psychology. The conference was honoured to have Dr. Lisa Ekselius, Dr. Fotis Papadopoulos and Dr. Karin Tillman from Uppsala University Hospital present their work on neurocognitive and neuropsychiatric outcomes in craniofacial malformations. Karin Tillman and colleagues have since published one of the papers presented at the meeting, titledIncreased Risk for Neurodevelopmental Disorders in Children with Orofacial Clefts’.Dr. Jolanda Okkerse from Erasmus MC Rotterdam presented on Post Traumatic Stress in parents and patients following craniofacial surgery and Dr. Louise Dalton from John Radcliffe Hospital, Oxford presented on Clinical Psychology and Craniofacial care: Priorities and models of delivery. This session was extremely informative and highlighted the psychological impact craniofacial anomalies/ENT disorders can have on individuals and the importance of making effective psychological care available for these patient groups.

 Friday afternoon began with an update on key network activities by the ERN CRANIO coordinator (Dr. Irene Mathijssen). Topics discussed included the upcoming call for new members to join the ERN, expected to be launched in April 2019 and the impact of Brexit on the ERNs. On behalf of the patient support groups, Gareth Davies introduced the patient representatives for ERN CRANIO and their view on patient involvement within the network. Ulrich Thomale from Charité Berlin outlined how to use the Clinical Patient Management System (CPMS). All CRANIO members can use this online platform to discuss complex patient cases with their colleagues. The group of neurosurgeons is already actively using the CPMS and all others are invited to register as well.



the 24thEuropean Association for Cranio-Maxillo-Facial Surgery Congress (EACMFS) 

On September 18.-21., 2018 the 24thEuropean Association for Cranio-Maxillo-Facial Surgery Congress (EACMFS) took place in Munich, Germany. There where approximately 2000 participants from all over the world.

ECTP project team member from Riga Stradins University Ieva Bagante presented her research results in cleft surgery. (Nasolabial anthropometry and symmetry index in patients with unilateral complete cleft lip, alveolus and palate and control group. #818! ). At the end of the presentation, she informed the audience about participation in ECTP project. 




7thBaltic Otorhinolaryngology Congress

On June 7.-9., 2018 7thBaltic Otorhinolaryngology Congress took place in Riga, Latvia. 

ECTP project team member from Riga Stradins University professor Ilze Akota was invited to give a lecture about cleft lip and palate management in Latvia. In the presentation, she has pointed out the importance of proper early care and feeding babies with clefts.  The audience was informed about ECTP project as an opportunity for improvement early care for babies with clefts in Latvia. 



14thJoint Symposium Riga-Rostock in Oral and Maxillofacial Surgery

On May 24.-26., 2018 in Riga Stradins University, 14thJoint Symposium Riga-Rostock in Oral and Maxillofacial Surgery was held. In the symposium, more than 75 participants were registered from Latvia, Germany, Switzerland, Ukraine, Belorussia, UK, Norway, Lithuania, Estonia.

ECTP project team member from Riga Stradins University Ieva Bagante presented general information about the project. 



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

MEP Kelly, the Ireland South MEP and Leader of the Fine Gael delegation in the European Parliament hosted the gathering with fellow MEPs and experts in order to raise awareness of the issues and call for positive action to prevent inequality.“This is a forum to highlight inequality in access to care, and a compelling example of this is one relatively common birth defect, cleft lip and palate.  The workshop will also be used as a forum to discuss and propose solutions in the context of research,”said Kelly.

In addition to a significant contribution and presentation from ECO, there were keynote addressesby Dr Martin Persson from Högskolan Kristianstad(University of Kristianstad) in Sweden and Prof Peter Mossey of the University of Dundeein Scotland.  Dr Perssonhas worked extensively with the psychological and social determinants surrounding craniofacial anomalies and is currently the Chair of the COST Action 16234 - European Cleft and Craniofacial Initiative for Equality in Care. Prof Mossey is a Professor of Craniofacial Development and has a long track record of research on craniofacial anomalies in Europe, and also in the developing world, and as VP for the Global Oral Health Inequalities Research Network is well equipped to contribute to addressing the inequalities agenda in Europe.

The speakers explained how one in 700 births will have a cleft lip and/or palate, the most common birth defect affecting the head and face region. Estimates indicate there are over 900,000 individuals living with clefts in Europe, burdened by a complex treatment pathway from birth to adulthood, and affecting the patients and their families both physically and psychosocially throughout life.

The workshop outlined the medical, social and psychological problems of those born with facial clefts plus the inequalities in access to care depending on country of birth. Interventions and education that transforms lives for the benefit of the individuals, their families and society were also explored. MEPs present called on the European Commission to take action to effect change in this regard.   


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.