Health Professionals
This section is under construction but in time we would like to this to become a notice board and multidisciplinary resource for all health professionals involved in cleft care in Europe.
We are seeking funding from various sources to appoint a research team to undertake a detailed study of cleft care throughout Europe, beginning with Eastern Europe.
In the meantime we are updating the list of registered clinical teams originally compiled by Eurocran in 2003. Here is the original data:
Information for each country includes a listing of Clinical Teams registered with the Eurocleft Clinical Network, research activity and surgical protocols, and a Country Summary drawn from a number of sources including web sites and European health care publications.
Austria
Greece
Poland
Belgium
Hungary
Portugal
Bulgaria
Iceland
Romania
Croatia
Ireland
Czech Republic
Italy
Slovak Republic
Denmark
Latvia
Slovenia
Estonia
Lithuania
Spain
Finland
Sweden
France
Switzerland
Germany
Netherlands
Norway
United Kingdom
Best Practice Guidelines
Working with health professionals, we will be compiling a set of best practice guidelines for cleft care. The following is a working draft and any comments are welcome.
Positive Outcomes
Cleft treatment centres should be able to demonstrate positive health outcomes. Quality and audit should be at the heart of the services being provided. In order to demonstrate health outcomes it is essential that an appropriate information and audit database is maintained at every centre specialising in cleft care.
Cleft centres should ensure that they have rigorous systems in place for clinical Audit . The involvement of centres in national, inter-centre, audit is essential and their involvement in international audit is to be encouraged. Records should therefore be maintained in a form that supports both national and international audit.
Effective delivery of appropriate health care
The care of all cleft lip and/or palate patients should be organised by multidisciplinary teams which should, where resources allow, include
- A care co-coordinator/manager of the service
- A lead surgeon who will each undertake primary surgery on an average of 30 or more new patients each year.
- A surgeon specialising in secondary surgery such as bone grafting and orthognathic surgery
- A lead orthodontist having a major commitment to cleft care
- A lead Speech and Language Therapist with a major commitment to cleft care
- A specialist registered paediatric nurse or health visitor with responsibility for providing feeding advice and support to parents, and the co-ordination of nursing activities.
- An appropriately trained psychologist
Centres will need to demonstrate that they have written guidelines for care from the prenatal period to maturity and that there is continuity of care from members of the same team.
Pre-natal Support
Members of the main team have an important role to play in counselling and supporting parents at the time of diagnosis. Centres must be able to demonstrate that appropriate pre-natal support services are provided to all local obstetric units/ultrasound units including access to main team members
Continuing Care
The psychologist should play a central role in achieving good outcomes in cleft care through routine psychosocial assessment and through the prevention and treatment of psychological problems. Psychosocial, patient centered audit and outcome measures should be included in each centre's record keeping system.
Primary Surgical Repair
The standard of primary surgery is crucial to the quality of outcome. Potential cleft centres must be able to demonstrate that surgeons undertaking primary surgery have appropriate experience and training, a proven commitment to cleft care, the ability to work within a team and be able to have demonstrate and maintain good outcomes. Each surgeon will ideally undertake surgery on an average of 30 new patients each year. All primary surgery should be undertaken within a paediatric environment with care being provided by paediatric trained specialist staff.
Speech and Language Therapy
Centres should ensure that care is led by an experienced specialist Speech and Language Therapist who is a member of the main cleft team. Specialist speech and language assessment, diagnosis and decision-making regarding intervention (usually surgical and/or therapy intervention) should be available. Active therapy should be undertaken by the hub speech and language therapy team who must maintain their therapy skills particularly where there are complex issues of management. Appropriate specialist equipment should be available, regularly and correctly used, with appropriate archiving of records. There should be regular joint surgeon/speech and language therapist/prosthodontist speech investigation clinics
Orthodontic Services
An orthodontic assessment is required for all children and should be undertaken at the main centre where joint consultation can take place with other members of the Team. Centres must therefore demonstrate that they can provide orthodontic care at appropriate stages by an experienced orthodontist specialising in cleft care. Appropriate orthodontic records at all stages of care must be collected and archived
Secondary Surgery
There are two main areas of secondary surgery:
a) Alveolar bone grafting and orthognathic surgery
b)Velopharyngeal surgery and soft tissue surgery including revisional rhinoplasties.
These should be undertaken by a surgeon who must have appropriate experience and training with a proven commitment to cleft care, the ability to work within a team and be able to demonstrate and maintain good outcomes.
Nursing
An early feeding assessment and an appropriate plan of care should be made by the specialist cleft nurse normally within 24 hours of the birth of a child with a cleft. This must be in conjunction with the midwives, neonatal nurses and paediatrician with responsibility for the baby as well as with the post birth care team. The primary care team should have access to the multi-disciplinary cleft team and should be given appropriate information on discharge from hospital as well as throughout the child's care. Initial feeding equipment should be provided for parents. Families must be given ongoing advice and support integrated with a counselling service, if needed.
Pre-natal diagnosis & management
Where there are facilities for pre-natal screening, cleft teams must be able to demonstrate that appropriate outreach pre-natal diagnostic support services are provided to local obstetric/ultra-sound units. Professionals undertaking scanning should have a knowledge of cleft lip and palate. Confirmation and classification of the diagnosis should be made by an ultrasound diagnostician who is either a member of the cleft team or who is recognised as having a special interest in prenatal cleft diagnosis. The diagnosis and level of confidence in the classification of the clefting should be communicated to the main cleft team and thence to the parents as rapidly as possible. There should be a written protocol in place for informing parents of the diagnosis. Arrangements should be made for parents to be put in contact with a member of the cleft team within 24 hours.
Counselling Services
Counselling should only be undertaken by appropriately trained professionals experienced in cleft lip and palate care. Good communication with the psychologist on the main team at the hub is essential. Specialist advice and counseling for parents should be provided from the time of diagnosis by a designated member of the cleft team who should ensure that an around-the-clock system is in place from maternity units, community midwives and primary care teams to contact the designated member(s) of the cleft team. Patient information leaflets should be available in maternity units, ultrasound departments and foetal medicine units.
Patient/Carer Experience
Parents report that confusion and distress is caused to some families because incorrect information is given to them by health professionals who are not experienced in cleft care. Patient groups play an important role in the overall care of children with clefts and cleft centres will need to demonstrate
-working relationships with national and local voluntary groups including
- provision of support and information and
- up to date information and education resources for parents appropriate to their needs
Education and Training
Services should be consultant led and staffed. A main cleft centre would be expected to provide specialist staff training for surgical, orthodontic, speech and language therapy, psychologists and nursing staff. Lead clinicians should be able to demonstrate a commitment to continuing professional education and training for all staff involved in the network