Multidisciplinary magic – the Cleft Lip and Palate Unit

The work of the Cleft Lip and Palate Unit at Perth Children’s Hospital has been lifechanging for countless patients around the state. We caught up with the Chairman of the Dental and Maxillofacial Department paediatric dentist Dr John Winters and orthodontists Drs Christopher Wholley and Steven Singer to discuss the Unit’s impact.

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The Cleft Lip and Palate Unit at Perth Children’s Hospital is the oldest cleft specialist unit in Australia – established in 1956 at Princess Margaret Hospital.

From early beginnings under Plastic and Reconstructive Surgeon Harold McComb and orthodontist Bill Brogan, the unit has grown into an extensive multi-disciplinary team, which then moved to the new Perth Children’s Hospital in 2018.

John has been at the unit since 1985, Steven since 1988 and Chris since 2007, helping patients with congenital dental facial deformities, and congenital dental issues such as amelogenesis imperfecta and oligodontia (threshold for acceptance is ten or more congenitally absent permanent teeth, excluding the third molars). The unit treats patients from all over the state, with treatment ranging from dental maintenance, bone grafting cleft of patients, orthodontic treatment, and when required orthognathic surgery.

“There can be between 2000-3000 active patients at any one time across the spectrum of people that we care for including up to 50 new patients affected with orofacial clefting every year. These patients are typically seen from birth until their early 20s,” says John. “The youngest patient we have treated in our cleft cohort was only six-hours-old. He was transferred here straight after birth, and we were able to go and see the baby in the neo natal ward straight away to take the impression for a plate, which was inserted on the same day.”

In addition to the dental staff, John says the unit’s multidisciplinary team includes plastic surgery, speech pathology, audiology, ENT, research scientists, oncology, the gastroenterology clinic, the respiratory clinic, the complex airways team, imaging, and the anaesthetic team. “There might be a core team of a dozen people looking after a child in the cleft unit but when you add in all the disciplines, nursing, allied health and support staff, there would be a cast of hundreds.”

“We are part of a jigsaw working together to treat patients under our care,” Steven adds. “It is very interesting and challenging work that requires a host of dental and medical specialties moving towards a common goal. The need for such multidisciplinary treatment makes sense for centralisation of patient care."

Treating cleft lip and palate patients after discharge

Although PCH usually treats patients up to 16 years of age, the Cleft Lip and Palate Unit will usually be given special permission to continue to treat ongoing patients until growth completion in the early 20s.

“We have to wait until facial growth is complete in most cases, before we can do the final phases of their rehabilitation and facial dental reconstructions,” John says. “It
doesn’t fit nicely within the definition of a paediatric hospital, which finishes at 16 but for a lot of these kids they have had 16 years to get to where all of the action is about to start… all the planning,  all of the decision making, all of the choices that have been made have come towards a culmination of the finalising stages and so we have to get special approval from the hospital executive to complete the care. There is no adult unit to which we can discharge them, and this is something we have been campaigning actively for at least the last 25 years.” John adds there have been some recent changes to the Cleft Lip and Palate Scheme, which is Schedule 7 in Medicare.

“Schedule 7 used to cut out at age 28 but the benefits now continue lifelong,” he says. “Schedule 7 covers certain orthodontic services; it covers certain general dental services such as dentures and retainers (but it does not cover any maintenance for implants) and it covers a certain amount of surgical extractions.

“Within that framework eligible patients can get a Commonwealth funded general dental check up with their general dental practitioner up to three times per year. That means that our cleft patients, who overall tend to have higher ongoing demands or needs in terms of preventative oral health care, can at least continue to get that through their general practitioner. However, most general practitioners don’t know that item number is available for them to claim.

“You don’t need to register; all you need to do is put the item number down as a Medicare number and that will allow the patient to claim a Medicare rebate. The interesting thing is that it can be used in conjunction with their private health insurance benefits but not at the same visit. So that means that if someone is needing more frequent visits for preventative oral health care, they can claim both through Medicare and their private health insurance at different times throughout the year, so they are at least getting some assistance to turn up for that professional level of oral health care.

“Our aim is to try to discharge our patients with as little maintainable prosthetics as possible, but dentures and retainers when needed do require ongoing maintenance, and this can be an added burden of care for the individual patient. It is unfortunate that the scheme doesn’t specifically cover maintenance of fixed prosthesis when they are used.”

John says that general dentists can go to the PCH public-facing website to find out information about the eligibility criteria for the Dental and Maxillofacial Department at PCH.

Schedule 7 can be accessed at the following link: at Federal Register of Legislation - Health Insurance (Section 3C General Medical Services – Cleft and Craniofacial Services) Determination 2024.  

Chris adds when cleft lip and palate patients are discharged, general dentists should not be hesitant to treat them.

“The youngest patient we have treated in our cleft cohort was only six-hours-old. He was transferred here straight after birth, and we were able to go and see the baby in the neo natal ward straight away to take the impression for a plate, which was inserted on the same day.” Dr John Winters

PCH Cleft and Craniofacial Conference

As well as their work with patients, PCH is also a teaching hospital. The Cleft Lip and Palate team is actively involved in education. To this end Chris, Steve and PhD
Senior Research Scientist, Dr Wendy Nicholls were instrumental in organising a Cleft and Craniofacial Conference, with the most recent one held in August 2023. Hosted by the Dental and Maxillofacial Department, it drew on the expertise of clinicians across the range of disciplines at the Cleft Lip and Palate and Craniofacial Unit. As well as local speakers the Conference included speakers from Royal Children’s Hospital Melbourne, Royal Melbourne Hospital, Adelaide Craniofacial Centre, Kristianstad University Sweden and University of Otago.

The extensive program was the second time the Conference has been held (the first was in 2019) and featured presentations from plastic and reconstructive surgeons, oral medicine specialists, ENT surgeons, orthodontists, oral and maxillofacial surgeons, periodontists and more, with workshops on alveolar bone grafting, speech pathology, software used in orthognathic surgery planning, pre-surgical orthopaedics and more.

“The training program was aimed at post graduate dental and medical trainees over a period of two-and-a-half days, and consisted of original teaching material with 32 lectures and five workshops,” Chris says. “It was an opportunity to develop a multidisciplinary awareness of what different disciplines contend with when treating patients who have a dentofacial anomaly. For Orthodontic post grads the course is an opportunity to learn from the limits of craniofacial biology and how extreme malocculsions are managed in a tertiary children’s hospital.”

The Conference was attended by more than 40 Orthodontic post graduate students from Australia and New Zealand, and for the vast majority it was their first time to Perth. Registrars in OMFS, Oral Medicine, Paedodontics, Plastic Surgery, Periodontics and Prosthodontics
also attended.

“The great thing about the meeting in August was it was really well supported by the PCH administration,” Chris adds. “The hospital administration covered the overheads and use of the facilities, so there was no conference fee for the attendees; they only needed to cover their travel and accommodation.”

The conference was a great success after being postponed for a number of years because of COVID and there are plans in the works for another conference in a few years’ time.

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