What is Velopharyngeal Insufficiency? In the normal palate, the muscles of the soft palate (velum) are responsible for closing the velo-pharyngeal opening (the opening between the palate and the pharynx – the back wall of the throat). Expand This is essential for normal speech and to prevent regurgitation of food and fluids through the nose. We know that in the UK, the velopharyngeal opening will not close properly in 25% of patients who have a repaired palate – this is called velopharyngeal insufficiency (VPI).
Matt Fell I am excited to work with the CLEFT charity team, as part of the UK’s collaborative effort, to help improve cleft care in the UK and overseas. Expand I am excited to work with the CLEFT charity team, as part of the UK’s collaborative effort, to help improve cleft care in the UK and overseas. I am a Plastic and Reconstructive Surgery training registrar in the Southwest of England, based in Bristol with my wife and two children. I have been fascinated in cleft lip and palate since being a medical student and have steered my surgical training towards achieving my goal of becoming a cleft surgeon. I have an honorary fellowship position to perform epidemiological cleft research with the Cleft Collective at the University of Bristol. I have been passionate about global health for many years and aim to focus my energy on improving the provision of cleft care for patients and their families living in resource-poor settings. If you would like to listen to Matt examining the problems of inequalities in access to cleft care in lower income countries, please click here.
Bruce Richard Consultant Cleft Surgeon (retired). Expand I lived in in Nepal for 11 years, (1989-1999) where I set up a Plastic Surgery Department for the Government of Nepal, trained 7 Nepalese surgeons in Plastic Surgery, initiated a Randomised controlled trial in Cleft surgery, and investigated the facial nerve in leprosy. My passion was working with Nepalese colleagues to improve outcomes for the people of West Nepal. For the last 19 years, I have been a Consultant Cleft surgeon in Birmingham, developing the cleft service, teaching Plastic surgery, supporting national Cleft Audit, and initiating several cleft clinical research projects. I continue with 2 PhD students that I co-supervise on computer artificial Intelligence projects developing a better cleft aesthetic outcome measure and investigating why some children’s midface does not grow sop well after cleft surgery. The CLEFT International Charity objectives, completely encapsulates my passion for development and sustainability of improved Cleft care in Low and Middle Income Countries by the ethos and methodology stated in the Mission Statement. I would like to help those objectives become more of a reality. If you would like to hear more from Bruce about his experiences of working and living in Nepal, please click here.
Rona Slator, Chair of the Research Steering Committee Retired, and living in the North Yorkshire countryside. Former Consultant Plastic and Cleft Surgeon at Birmingham Children’s Hospital and the West Midlands Cleft Lip and Palate Centre. Expand I was a student for a long time. I particularly enjoyed and learned from my research degree the excitement of knowing a small area in great depth and the results of experimental studies. As a medical doctor, initially very early in my postgraduate career, I was inspired by both the cleft surgery of Brian Sommerlad, and by his enthusiasm for auditing outcomes. I have been passionate ever since about knowing more about how well treatments for cleft lip and palate work. I was on the Steering Group of the James Lind Alliance Cleft Lip and Palate Priority Setting Partnership, the first Chair of the Cleft and Craniofacial Anomalies Clinical Studies Group, and President of the Craniofacial Society of Great Britain and Ireland. During my time as Chair of the CCC CSG we started the Early Careers Researcher Group. I was Clinical Lead of the West Midlands Cleft Service for many years, and Chair of the Cleft Clinical Directors Special Interest Group. I acted as the local PI for international cleft research projects, and encouraged research and audit within the West Midlands Cleft team which has led to a number of collaborations and publications. Funding for cleft research has always been hard to find. I welcome the chance through CLEFT: Bridging the Gap to continue supporting research into improving the lives of children and adults affected by cleft lip and palate. There are so many fascinating areas where we still know so little. If you would like to listen to Rona talking about the value of research to cleft professionals and patients, please click here.
David Sainsbury I am delighted to be a Trustee of CLEFT and am very enthusiastic at the prospect of helping teams around the world to provide the best possible care for individuals with a cleft. Expand I am a Consultant Cleft and Plastic Surgeon in Newcastle upon Tyne – where I live with my wife and three children. I trained in plastic surgery in North-East England and completed Advanced Training in Cleft Lip and Palate (Newcastle, Leeds, Nottingham, Edinburgh) and the Paediatric Plastic Surgery Fellowship (Hospital for Sick Children, Toronto). I am a founder member of the Cleft Multidisciplinary Collaborative which produces multicentre, cleft related research across the UK and beyond. I am an Honorary Tutor at the Wound Healing Research Unit, Cardiff University.
Paul Whittaker I began working with CLEFT as a filmmaker and photographer in 2016, initially to highlight the progress of the multi-disciplinary cleft centre CLEFT has helped create in Dhaka, Bangladesh. Expand Since then, I have continued to document CLEFT’s work in Bangladesh, Egypt and Kurdistan through video and photography. Additionally, my involvement with CLEFT has evolved over the last 5 years to include fundraising, attending regular trustee’s meetings, and online meetings with the team of clinicians in Bangladesh. Having spent many weeks with patients and their parents, filming in local villages, hospitals and workshops alongside the local medical teams, I have developed a good understanding of some of the complex issues facing children born with clefts, especially in places where multi-disciplinary cleft care may be difficult to access. I believe CLEFT’s focus on supporting and facilitating local medical teams to improve cleft care is highly important. These local teams undertake the vital work to ensure that long-term and sustainable cleft care is available to those who need it. I am honoured to be a part of supporting these efforts. In addition to my involvement with CLEFT, I have worked extensively supporting refugees in Greece and vulnerable people in the UK. I have a BA in Film from Falmouth University and an MA in Migration and Diaspora Studies from SOAS University of London. I currently work in adult social services at Bristol City Council.
Mahen Bulumulla I am excited to support the work of CLEFT charity team, a charity close to my heart. Expand I was a trustee for a brief period, in 2012-13, before becoming a member of the International Steering Committee. I’ve known Mr Sommerlad for a long time, who had operated on my cleft lip and palate in the past. I believe CLEFT’s focus on sponsoring research projects in the UK and supporting clinical teams and projects in lower-income countries will make a difference in treatment outcomes and care for people born with clefts. I come from a business background, a Chartered Management Accountant working in the UK corporate sector. I wish to support the charity through my skillset and taking part in fund raising events for the charity.
Kate Le Marechal Dr Kate le Maréchal is a Consultant Clinical Psychologist who has worked as the Clinical Psychology Lead within the Evelina London Cleft Service since 2009. Expand Kate graduated from the University of Nottingham in 1996 with a first degree in Psychology (BA Hons) and obtained her Doctorate in Clinical Psychology (DClinPsy) in 2001 at University College London. On completing her clinical training, Kate began her Clinical Psychology career in Child and Adolescent Mental Health Services (CAMHS) before moving to National and Specialist CAMHS (Autism and Related Disorders). She also worked within an Adolescent Forensic Mental Health team at the Maudsley Hospital and was the Lead Clinical Psychologist for the Tuberous Sclerosis 2000 research study. Within the Evelina London Cleft Service, Kate is responsible for overseeing the psychological input for patients and families who require support across the lifespan. This includes providing interventions to help individuals cope with issues around identify and difference, self-confidence and self-esteem and dealing with bullying and teasing. Kate has always had a wider role within UK cleft care and has been the Clinical Psychology representative on the Cleft Development Group (CDG), the Cleft Clinical Reference Group (CRG) and within the UK Clinical Psychology Clinical Excellence Network (CEN). Kate was President of the Craniofacial Society of Great Britain and Ireland for 2014/2015 and hosted the National Conference in London in April 2015. She contributes to national research projects and has presented at a range of national and international conferences. Kate enjoys providing teaching and training to a range of audiences including medical and dental registrars and other health professionals as well as with Clinical Psychologists both pre and post qualification.
David Orr, Consultant Plastic Surgeon David Orr has been a Consultant Plastic Surgeon at Our Lady's Children's Hospital and St James's Hospital, Dublin since 1998. Expand David has a long standing interest in developing surgical services in resource-poor environments and, since 2006, has been involved in a collaboration with Jimma University Hospital in Ethiopia and Operation Smile to develop a plastic surgery unit and a cleft treatment programme.
Triona Sweeney Dr Triona Sweeney (BA, MSc, PhD) is a Cleft Specialist Speech & Language Therapist. She is a Founder and co-Director with Dr Debbie Sell of Speech at Home, an online therapy resource centre which aims to empower parents of children with cleft palate to deliver speech therapy at home under the supervision of a speech and language therapist. Expand Triona previously worked at Temple Street Children’s University Hospital, Dublin until 2013, in different positions including Manager and Clinical Specialist in Cleft Palate and was a part-time lecturer and adjunct professor at the University of Limerick. Research interests include the perceptual and instrumental assessment of and parent led intervention for speech problems associated cleft palate and structurally related anomalies. Triona along with Drs Debbie Sell and Anne Harding Bell, developed the Cleft Audit Protocol for Speech-Augmented, which is used for mandatory audit in the UK and Ireland. She has several publications on cleft palate speech assessment and intervention. Since 2007, Triona has volunteered with Operation Smile Ireland and in 2009 became involved with Transforming Faces, focusing on the development of speech and language therapy services in Ethiopia. More recently she supported the development of the Ethiopian speech therapy training course at Addis Ababa University.
Neil Brierley I am currently working as a national TIG fellow in Cleft Lip and Palate surgery in the Northern and Yorkshire Cleft Lip & Palate service. I live in Leeds with my son. Expand Prior to my current role I completed an advanced Cleft Lip and Palate fellowship in Addenbrooke’s hospital, Cambridge, and my higher Plastic Surgery training within the Yorkshire and Northern deaneries. I have been an international Regan Fellow with Operation Smile and visited a cleft hospital in Gujrat, Pakistan, with the Overseas Plastic Surgery Appeal, based in Kingston upon Hull. I have a passionate interest in equitable healthcare across the globe and hope my involvement in the International Steering Committee of CLEFT can help achieve this.
Khurram Khan, Consultant Cleft Lip & Palate and Plastic Surgeon Hello! I am a Consultant Cleft Lip & Palate and Plastic Surgeon working at Birmingham Children's Hospital. Expand I'm really honoured to be a part of CLEFT. I have always been very passionate about providing cleft care in resource poor settings and over the last few years have operated with different teams in Vietnam, India, Guatemala and Uganda.
Adrian Sugar Adrian Sugar is Hon Consultant in Cleft and Maxillofacial Surgery and Senior Lecturer at Swansea University Medical School based at Morriston Hospital Swansea. Expand He has main surgical interests in Clefts, Craniofacial Deformity and Trauma and was clinical director of the Wales Centre for Cleft Lip and Palate for 11 years. He has a major interest in 3D imaging and planning for facial reconstruction and remains Chair of the Centre for Applied Reconstructive Technologies in Surgery (CARTIS), a collaboration between Morriston Hospital and the design engineers at Cardiff Met Univ. He was a member of the Royal College of Surgeons Commission on the Future of Surgery which reported in 2019. He co-founded the international ADT Foundation with Prof John Wolfaardt from Canada and Prof Rainer Schmelzeisen from Germany. Adrian chaired NHS England’s Clinical Reference Group for Cleft Lip and Palate from its inception and the UK Cleft Development Group for six years. He was President of the Craniofacial Society of Great Britain and Ireland and is now an honorary fellow for life. He was training programme director for OMFS in Wales and chair of its Specialty Training Committee. He chaired his health board’s Paediatric Surgery Ctte and Morriston Hospital’s Medical Staff. He has been a trustee ex-officio of the AO Foundation internationally having sat on its Academic Council, the International Board for Craniomaxillofacial (CMF) surgery, chaired AO’s international Research Fund for all specialties and its research committee for CMF surgery. His elected trusteeship period has just expired. He has more than 80 peer reviewed publications in the literature as well as 10 book chapters and 170 lectures by invitation. He was awarded the international Tjellstrom Award for excellence in rehabilitation of the head and neck and the Down Surgical Prize of the British Association of Oral and Maxillofacial Surgeons, its highest award.
Patricia Rorison I am a Consultant in Cleft Lip & Palate and Plastic Surgery. Expand I graduated from medical school in Glasgow and did my early surgical training in the West of Scotland. My training led me to work in Manchester and Newcastle upon Tyne, including a laboratory based degree investigating the factors involved in human scar formation. I completed my specialist training in Cleft Surgery in London. My first Consultant post was for 10 yrs in the West Midlands Cleft Service in Birmingham, before moving to work in the North Thames Cleft Service in Gt Ormond St and Chelmsford in 2018.
Fiona Gilchrist Senior Lecturer and Honorary Consultant in Paediatric Dentistry Expand I am a paediatric dentist in Sheffield and the Lead Paediatric Dentist for the Trent Regional Cleft Network. I have worked with the cleft team in Sheffield since 2011, having previously worked with cleft teams in Edinburgh and Melbourne. My main research interests are in developing and using patient reported outcome measures (PROMs). I am currently involved in projects evaluating the routine use of these in children with cleft lip and palate and with other diagnoses. Outside of work I enjoy swimming, both indoors and outdoors!
Stephanie van Eeden Stephanie van Eeden, Lead Specialist Speech and Language Therapist (SLT), Regional Cleft Lip and Palate Service and NIHR Clinical Doctoral Fellow (2018-2023) Expand I have worked with the Newcastle cleft lip and palate team for 17 years and have led the speech and language service since 2009. I am currently undertaking a PhD investigating language and listening skills in children with cleft lip and palate. I am Chair of the Early Career Researchers Group in Cleft and Craniofacial Anomalies. My research interests also include Robin Sequence, outcome measures and the relationship between speech and language skills. I have spent some time in India working with cleft charities and delivering assessment and therapy through interpreters and local SLTs. When away from work I enjoy walking my dogs, running (slowly!) and watching football!
Yvonne Wren I am Associate Professor of Speech and Communication at the University of Bristol and also Chief Investigator of the Cleft Collective, a national cohort study which is investigating the causes, treatments and outcomes for people born with cleft lip and/or palate. Expand We are recruiting from all 16 regional cleft sites in the UK and have over 9000 participants. We are collecting biological samples for genotyping, parent questionnaires for information on children’s development and both child and parent well-being, clinical data direct from the 16 sites as well as linking to education and health data. The data collected are available for the international research community to access and use to address questions which will impact on clinical care and outcomes.
Helen Robson Clinical Nurse Specialist Expand My name is Helen Robson. I have been a clinical nurse specialist within Cleft Lip and Palate for 15 years. I became involved with cleft at the establishment of the centralisation of specialist care. I joined a network and was pivotal in developing a nursing service at outreach centres within the network. I very much value multidisciplinary working and have enjoyed establishing a nursing service supporting early feeding support. I have maintained a community focused model enabling nurses to problem solve and practice autonomy. My research interests include the management of Robin babies and have been a participant in the international research consensus group. I also have an interest in sleep obstruction and am a PI in a research study called SLUMBRS. I am a non-medical prescriber. Developing research within cleft and especially within nursing is invaluable as well as education. I am involved in a teaching programme in Tajikistan and have also supported the European cleft nursing programme. I am really excited about being part of CLEFT and offering a positive contribution.
Sophie Butterworth, Junior Cleft Fellow I qualified as a doctor in 2007 and have been working part-time with the cleft lip and palate team in Newcastle since 2009, with a few breaks for my three children. Expand I am a member of the cleft early career research group and have worked with the cleft multidisciplinary collaborative on several projects. I am really interested in research, and my goal at the moment is to try and investigate why speech outcomes differ in patients born with a cleft palate. I hope to be part of larger, international studies in the future as I enjoy working with others and if we can get larger numbers of patients involved in studies then we can hopefully find out more answers. I am really excited to be part of CLEFT and look forward to hearing about all the new research ideas.
Ambika Chadha I am a doubly qualified specialist in Oral & Maxillofacial Surgery who has had a lifelong interest in all aspects of cleft. Expand I am honoured to be the nominated 2022 Training Interface Group (TIG) fellow in Cleft Lip & Palate and am based in the Cleft.Net.East service in Addenbrookes hospital, Cambridge. My passion for cleft has always spanned both clinical and research domains. I am currently writing up my PhD in the applications of 3D surface imaging in cleft – work that has been supported by both Surgical and Dental Royal College of Surgeons (RCS) Research Fellowships. I was also awarded a Winston Churchill Memorial Travel fellowship to spend several months in the 3D Facial Research Imaging Group based in Radboud University, Nijmegen, The Netherlands. I am especially interested in the use of 3D and 4D imaging to deep phenotype cleft lip and the application of Explainable Artificial Intelligence (X-AI) to enhance cleft care. Additionally, I believe that Virtual Reality (VR) and Augmented Reality (AR) technologies are poised to play an important role in disseminating clinical knowledge in cleft globally. I wholly support the CLEFT charity’s research ethos and applaud the important role it plays in supporting high quality research in cleft, in collaboration with other national organisations.