Page 382 - Read Online

Page 2 of 10 Sharratt et al. Plast Aesthet Res 2020;7:35 I http://dx.doi.org/10.20517/2347-9264.2020.99

Throughout their childhood and into their adult life, these individuals may benefit from the expertise of
and care from a variety of specialists including surgeons (who may perform primary cleft surgery, revision
surgery and further aesthetic surgeries) but also dentists, orthodontists, geneticists, nurses, paediatricians,
psychologists, speech and language therapists, but their access to healthcare can vary greatly. For the
general population in Europe, there is a significant variance in access to healthcare. When looking at the
health expenditure per inhabitant in 2016, the countries with the lowest health expenditure were Romania
(€400), Bulgaria (€600) and Poland (€700). In contrast, the countries with the highest expenditures were
[2]
Luxembourg (€5600), Sweden (€5100) and Denmark (€5000) . The difference in resources can have an
impact on the provision of care for cleft and craniofacial conditions and can therefore be important in
determining health and social outcomes. In other words, the health and social outcomes of an individual
with a cleft or craniofacial condition are dependent on the country in which they were born.

It is established that access to effective treatment for cleft and other craniofacial conditions varies
widely throughout Europe, meaning that many children born with these conditions are never given the
opportunity to realise their full potential. The concept of a comprehensive multi-specialist-team approach
to care is not universal. Furthermore, infants with clefts are still institutionalised in some EU countries. A
survey carried out for UNICEF in Bulgaria in 2011 showed that, in up to 40 per cent of cases where babies
were born with a cleft, the parents were advised (in most cases by health professionals) to leave their baby
in an orphanage. Via a fruitful collaboration, the European Cleft Organisation (ECO) and The Association
of Children with Facial Anomalies and their Parents in Bulgaria (ALA) has helped reduce these numbers
to 28 per cent through educating and training “front line” healthcare providers and families with children
[3]
with facial anomalies. The work is ongoing .
Clinicians and patients across Europe, especially in those regions that have limited healthcare expenditure,
state that access to the necessary care pathways during the treatment span (from the moment of diagnosis
to adulthood) is fragmented or in some cases non-existent in their countries. The importance of the early
and adequate provision of information and treatment of clefts has been emphasised by the 2015 report of
the European Committee for Standardisation (CEN)-Early Care Services for Babies Born with Cleft Lip
and/or Palate. This involved input from 12 European countries and detailed the first agreed set of European
[4]
guidelines in early cleft care . The minimum standards of care and best practice models presented in this
document led to a European Science Foundation funded conference held in Bucharest in October 2015,
attended by nurses working in the field of cleft in 17 European countries. Key outcomes of the meeting
were the urgent demand for a Europe-wide programme of implementation of the guidelines together
with protocols on how to evaluate progress, especially in Eastern Europe. In these respects, the outcomes
mirrored those of the earlier Eurocleft project, involving 30 countries and 201 centres, which recommended
the adoption of a common set of policy statements governing clinical practice for European cleft teams and
[5]
practice guidelines detailing minimum standards of care . These recommendations, however, were never
implemented on a consistent, Europe-wide basis.

Further evidence of the urgent need to improve cleft and craniofacial care in these countries was presented
at a subsequent European Science Foundation funded meeting at CEN in Brussels in March 2016 attended
by user groups, politicians and doctors from 13 European countries. It was emphasised that there is a need
to adhere to evidence-based guidelines in order to develop national protocols. It was noted that there is
still a lack of coordinated general measures in cleft care at a national level in many European countries
including prenatal diagnosis, genetic advice, national registry development, equal access to treatment and
transparent rules for treatment. There is a lack of coordinated multidisciplinary team protocols, deficiencies
in information provision, both for professionals and parents, and deficiencies in long-term management.
For example, it has been shown that the intervention of multidisciplinary team management in cases of
women whose foetuses were diagnosed with cleft lip/palate on prenatal ultrasound screening was associated