Brian Sommerlad, Consultant Plastic Surgeon and Chair of Trustees For over 40 years, I have been involved in operating on babies, children and adults who have been born with cleft lip and/or palate. Expand Although I have now retired from the National Health Service, I continued to operate both in the UK and in many countries abroad. As a plastic surgeon, I have been involved in many aspects of surgical reconstruction. However, I have increasingly focused on the challenge of trying to improve results in surgery for clefts. I have been aware of the lack of good quality data on techniques and outcomes and have tried to make some contributions in these areas. Travelling to many countries has convinced me of the need to try to help in improving care for children born with clefts in resource-poor countries. Most efforts by charities rely on flying in western teams for short visits or paying local surgeons to carry out the operations in private hospitals. Neither of these approaches builds for the future. If these NGOs disappeared, they would have had a negative impact in the long-term. In 2007, with Maddie Holmes (grandmother of a patient) and inspired by John Kettleborough (an ex-patient) we set up the charity CLEFT, with the aim of funding research to be carried out by the North Thames Cleft Team in Great Ormond Street Hospital for Children and the St Andrew’s Centre, Broomfield Hospital, Chelmsford, and also to support cleft lip and palate teams in resource-poor countries such as Bangladesh, Sri Lanka, Uganda, Egypt and Kurdistan. We have achieved a lot but there is much more to be done – helping to bridge the gaps in knowledge about the causes and treatment of clefts and trying to bridge the gaps between treatment in countries like the UK and countries like Bangladesh. In addition to being the current chairman of CLEFT, I am currently trying to split my time between looking after my own patients, regularly visiting the centres that we support overseas, and also keeping in touch with my own family of five children and currently fourteen grandchildren. It would be better if there were more hours in the day and more days in the year! http://www.sommerlad.co.uk/
Mark Dwyer My son Edward was born with a unilateral cleft lip and palate, and has been cared for by the GOSH team since he was born in 2010. Expand I was invited to become a trustee of the charity in 2011 after attending a presentation at Great Ormond Street and saw an opportunity to give something back and to help create sustainable improvements for those in developing countries where little or no care is available, and ongoing care is rarely available. A very important part of the CLEFT mission is to encourage lasting improvements in developing countries by providing training and equipment for local medical staff to provide care to cleft patients from childhood to adulthood rather than by flying in Western surgeons to provide primary care without focusing on follow-up care. As the parent of a child with a cleft, I was also keen to help support research into improvements in care and into the causes of clefts, which does not receive funding from pharmaceutical companies.
Paul Morris, Consultant Plastic Surgeon I am a paediatric plastic surgeon with a specialist interest in cleft lip and palate surgery at Great Ormond Street (GOSH) for the last 8 years. Expand Just as with my wife Tracy, both work and home life are full of all things cleft! Through sharing my expertise I've been fortunate enough to train cleft surgeons at GOSH, who are now consultant cleft surgeons in the U.K. and around the world (Belgium, Canada and Chile). Most recently sharing my expertise in the management of cleft children with clinical teams from developing countries, including Bangladesh, has enabled CLEFT to support their local care of cleft children and families. In addition to surgical training, I am a keen cyclist and coordinate a team for CLEFT to participate in the annual Prudential 100 mile cycle ride in London It is a wonderful family weekend event that has raised significant amount of money and awareness for CLEFT. My aim for this coming year is to increase the number of cleft families that engage with CLEFT so that we can raise awareness, share the good work we do and of course get more families involved in fund raising activities.
Malcolm Birch, Medical Physicist I first became involved with cleft patients here at The London Hospital, as it was then, back in the 90’s. Expand I worked with the head of Speech and Language Therapy, developing an instrument to help to test the aspects of the quality of speech as therapy progressed. This instrument, along with analysis of movement of the soft palate during speech, became my PhD project that I successfully completed in 1995. Since then the collaboration with Brian Sommerlad has continued to this day and has now moved into the use of MRI to assess palatal function. CLEFT have been tremendously supportive to this research effort. Specifically, the charity has funded a PhD studentship that was completed in 2018 and that work has substantially improved our understanding of how MRI is best applied in the clinical assessment of the cleft palate.
Phil Stanier, Research Scientist I am a research scientist with a particular interest in studying the molecular and genetic basis that leads to a cleft of the lip and/or palate. Expand I joined UCL’s Great Ormond Street Institute of Child Health in 2006,which was an ideal opportunity to work closely with the North Thames Cleft team. Understanding the causes of cleft lip and palate is highly complicated since it involves many different genes and environmental risk factors, that sometimes interact together. My team, in collaboration with many researchers worldwide, have uncovered some of the key genetic and epigenetic factors that can lead to a cleft. We continue to try to understand how these impact on normal fetal development with a view to improving diagnosis, treatment and prevention. I have been closely involved with the CLEFT charity as a member of the Research Steering group since 2007.
Raouf Chorbachi, Consultant Audio-Vestibular Physician Dr Chorbachi is Consultant Audio-Vestibular Physician for the North Thames Cleft Services at Great Ormond Street Hospital and St Andrew's Centre, Broomfield Hospital in Chelmsford. Expand
Emily Anderson, Clinical Geneticist I first heard about the charity CLEFT through Mr Brian Sommerlad, who operated on my cleft lip and palate when I was a baby and I subsequently became a trustee in 2012. Expand I ran the Royal Parks Half Marathon for CLEFT in 2009 and I subsequently became a trustee. I have been involved in encouraging other young people to support the charity and I have also visited Bangladesh to see the challenges in providing comprehensive cleft care there. Having qualified as a doctor in 2012, I have now chosen to specialise in genetics. My own experiences, as a patient and as a doctor, mean I am particularly keen to support CLEFT’s work, both in research as well as overseas.
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.
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!
Joanna Shearer I qualified as a Clinical Psychologist from University College London in 2002. I have an MSc in Mental Health Studies and have completed post doctoral training in CBT and more recently in Cognitive Behavioural Hypnotherapy. Expand I have supervised and contributed to a number of research projects at Doctoral and MSc level and presented and taught nationally and internationally. This year I presented a two hour webinar on Visible Difference to members of the British Psychological Society. Clinically, I have worked for a number of years in Primary Care and Child and Adolescent Mental Health Services, before joining Great Ormond Street NHS Foundation Trust, where I continue to work part time supporting patients who require surgery for either congenital or acquired conditions. I am the Clinical Lead for The North Thames Cleft Lip and Palate Service, the Maxillofacial Service and The Dental Service. Physical Health The main focus of my work at Great Ormond Street Hospital relates to the psychological implications of having a medical health condition that requires a surgical intervention. Many patients have either been born with or acquired a visible difference as a result of their condition. This can result in low self-esteem, low mood, anxiety, social anxiety, or more specifically procedural anxiety. Emotional and Mental Health I have nearly 20 years of experience providing evidence-based interventions for a range of mental health challenges including anxiety, depression, social-anxiety, low self-esteem, body dysmorphia. I have worked across the life-span, which requires a thorough understanding of psycho-social development and attachment. Consideration of a person’s wider system is integral to the work and I’m thus able to work with the wider family, school and any other systems necessary. Professional Accreditations I am a registered Practitioner Psychologist with the Health and Care Professions Council. I am also a member of the Clinical Excellence Network for Cleft Lip and Palate Services around the UK. Areas of Expertise Visible difference Preparation for surgery Consent to treatment Adjustment to a new diagnosis Adjustment to a chronic condition Pain management Self-esteem Social anxiety Anxiety & stress Depression Phobias The psychological impact of bullying The psychological impact of neuro-diverse presentations such as Autism Behaviour management Toileting issues Feeding issues in younger children Parenting
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 an non medical prescriber. Developing research within cleft and especially within nursing is invaluable as well as education and I am involved in 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.
Cherry Le Roy Engagement and Services Manager, CLAPA Expand I have worked for CLAPA, Cleft Lip and Palate Association for over 6 years, originally in the South East as Regional Coordinator, recruiting, training and supporting volunteers to deliver events and activities for families. Providing opportunities for adults, children and young people to meet in fun environments and working closely with the regional cleft teams. I now manage the team that deliver engagement and services to the cleft community. CLAPA’s current strategy is to deliver all of our services digitally, reaching every part of the UK and opening up our support to all members of the community. During my time with CLAPA, it has become clear how important research is to those affected by cleft.
Martyn Cobourne, Academic Head of Orthodontics Martyn Cobourne is Professor of Orthodontics at King’s College London and Hon Consultant in Orthodontics at Guy’s and St Thomas’ NHS Foundation Trust. Expand He has published >160 articles on orthodontics and craniofacial biology including a number of randomised clinical trials. He was awarded the Charles Tomes Medal by the Royal College of Surgeons of England in 2015, won the Chapman Prize of the British Orthodontic Society in 2014, 2016, 2018 and 2019 and delivered their 2018 Northcroft Memorial Lecture. In 2019 he won the Dewel award from the American Association of Orthodontists for the best published clinical research article. Since 2012, he has been Editor-in-Chief of the Journal of Orthodontics. He is a full member of the North Atlantic Division of the USA Angle Society.