I have spent most of my consultant orthodontist career as a member of the Craniofacial Team based at Great Ormond Street Hospital for Children NHS Foundation Trust in London. This service provides the assessment, surgical treatment and long-term follow up for patients with complex combined cranial and facial deformities requiring management by a multidisciplinary team (MDT).
The caseload primarily includes patients with craniosynostosis – both in the non-syndromic and syndromic forms (e.g. Apert, Crouzon and Pfeiffer syndromes), orbital dystopias and encephalocoeles. Craniosynostosis is early suture fusion and results in major deformities of the craniofacial region and associated functional problems i.e. raised intracranial pressure, threats to vision, breathing difficulties and problems with feeding. Patients require complex surgical procedures involving neuro- and reconstructive surgeons (plastic and maxillofacial) working together and supported by the rest of the team which includes ophthalmology, ENT, psychology, speech and language, audiology, peadiatric dentistry, orthodontics, clinical and molecular genetics. Our team undertakes over one hundred transcranial procedures each year.
More recently our bid to establish a national service for children and adolescents with macroglossia associated with Beckwith Wiedemann syndrome (BWSm) was successful. This service went live on the 1st April 2012. My role as an orthodontist is to provide a dental/orthodontic assessment as part of the process to decide whether or not to undertake a tongue reduction. Patients are followed up to maturity, at staged intervals, to assess the outcome of tongue reduction on dental and occlusal development.
Both the Craniofacial and BWSm services are highly specialised services (within England). In days gone by they may have been called supra-regional or nationally designated services. Typically these services are established when fewer than 500 individuals are affected per year nationally. There are four Craniofacial teams in England based at Alder Hey Hospital in Liverpool, Birmingham Children’s Hospital, Great Ormond Street Hospital for Children in London and the John Radcliffe Hospital in Oxford. Great Ormond Street Hospital is the only centre for BWSm. Ideally all patients with these conditions should be treated at these centres.
When I joined the Craniofacial Team 18 years ago, the MDT consisted of a group of clinicians with an interest in the single aspect of craniosynostosis relating to their specialty. Organising the clinicians into a single team has allowed the integration of various threads of care into a single holistic protocol, which cares for the patient from birth to adulthood. This has facilitated the development of an audit and research programme, which is primarily focused on analysing our outcomes. Centralising care supports this by providing a large enough case load for analysis.
The development of an integrated care system has allowed the effects of our own observations and interventions to influence the wider team. Whilst it would be expected that the orthodontist can have a significant impact on speech pathology, I am sure it will be surprising to most that observations on craniofacial growth, based in the principles of orthodontics, have had a significant effect on how raised intracranial pressure is managed and treated in this group of children.
One of the greatest challenges in craniofacial care in the last decade has been the introduction of safe and effective ways to perform frontofacial osteotomies by distraction, that effectively treat exorbitism, craniocerebral disproportion, upper airway constriction and maxillary retrusion. The key to the introduction of these techniques has been a detailed understanding in the abnormalities of craniofacial growth and anatomy in children with syndromic craniosynostosis. The osteotomies themselves cause dramatic changes in craniofacial anatomy and wreak havoc on the dental occlusion. Long-term stability of the surgery depends to a great extent on a stable dental occlusion which presents a considerable challenge to the orthodontist.
It is not surprising therefore that the units around the world that have made the greatest advances in this field have been centres with strong orthodontic leadership. Craniofacial distraction in its modern day form started in New York at NYU with the orthodontist/plastic surgeon partnership of Drs Barry Grayson and Joseph McCarthy. The introduction of the rigid external distractor, which provided a device capable of delivering craniofacial distraction with predictable vectors, was developed in Chicago with another strong orthodontist/surgeon partnership between Drs John Polley and Alvaro Figueroa. I think it is also fair to say that the close working relationships between surgeon and orthodontist in my own unit at Great Ormond Street Hospital for Children has produced advances that have made frontofacial distraction safe, reliable and now the treatment of choice for children with syndromic craniosynostosis.
Following the recent reorganisation of the NHS in England the way in which highly specialised services are managed (included being commissioned) has changed (from 1st April 2013). Currently, seventy-four Clinical Reference Groups (CRGs) have been established clustered around the five national programmes of care (PoCs) – Internal Medicine, Cancer and Blood, Mental Health, Trauma, Women and Children. Craniofacial and BWSm sit within the Paediatric Surgery section of the Women and Children PoC (for further information - www.england.nhs/npc-crg). Historically, and there is no reason to expect this to change, it has been easy to contact the commissioning team (including the medical advisors) to discuss any current issues, future funding and service developments.
In the future, there will be opportunities to develop new highly specialised services. Whilst treating patients with e.g. hemifacial microsomia or cleidocranial dysplasia, I have often thought that they may well be better off being looked after as a part of a national service. I appreciate that I have no evidence to support this claim but my experience of working in two highly specialised services leads me to believe that it is worth exploring. Maybe the next generation of orthodontists should take this forward.