Directory of European Resources > Eurocleft Clinical Network > Consensus Recommendations > Practice Guidelines Part I

1. Neonatal Emotional Support and Professional Advice
In the event of prenatal diagnosis and as soon as possible after the birth of a child with a cleft parents should be given emotional support and advice about the childs future management by a specialist in cleft care.

2. Neonatal Nursing
Difficulties in feeding are common in the early days of life and specialist advice on feeding should be provided.

3. Surgery
Primary surgery to close clefts of the lip and/or palate should be performed by an experienced and qualified surgeon according to a protocol agreed by the team. Further corrective procedures may be necessary for some patients in later years and should be performed by an experienced and qualified surgeon according to a protocol agreed by the team.

4. Orthodontic/Orthopaedic Treatment
For children with cleft lip and palate orthodontic/orthopaedic treatment should be available when necessary and should be performed by an experienced orthodontist.

5. Speech and Language Therapy
Early assessment of speech and language problems, advice to parents and the availability of corrective therapy by an experienced speech and language therapist should be provided.

6. Ear, Nose and Throat (ENT)
ENT problems should be identified at an early stage and the necessary therapy should be provided.

7. Clinical Genetics/Paediatric Developmental Medicine
As cleft lip and/or palate may be associated with other anomalies early assessment and diagnosis is necessary. Genetic counselling for patients and families should be available.

8. Emotional Support and Professional Advice for the Growing Child and its Parents
Emotional support and professional advice for parents, patients and their environment is often necessary and should be available.

9. Dental Care
Regular dental care should be available.

10. National Register
A national register should be in place for accurate recording of children born with cleft lip and/or palate and related craniofacial anomalies.

Part II: Organisation of Services

1. Cleft care should be provided by a multidisciplinary team of specialists.
2. Members of the team should have special training in cleft care.
3. The team should agree on the stages of treatment including the examination, record collection and general protocols.
4. There should be one person responsible for quality improvement and communication within the team.
5. Co-ordination of the care of individual patients is important since numerous specialities are involved. This should be the responsibility of one member of the team.
6. The number of patients referred to the team should be sufficient to sustain the experience and specialist skills of all team members and to allow evaluation/audit of the team’s performance within a reasonable period of time. It has been recommended that cleft surgeons, orthodontists and speech therapists should treat at least 40-50 new cases annually. However, it is recognised that individual member states have the right to provide care for their own population.

Part III: Finances

Resources should be available to cover the following care for children with cleft lip and palate:

1. Emotional support and professional advice during the neonatal period.
2. Neonatal nursing.
3. Surgery.
4. Orthodontic/orthopaedic treatment.
5. Speech and language assessment and therapy.
6. Ear, Nose and Throat treatment.
7. Clinical genetics/Paediatric developmental medicine.
8. Emotional support for the growing child and its parents.
9. Travel expenses.
10. General dental care including cleft related prosthodontics.