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CLAPA Adults Conference Adults Cleft Conference Camden Lock, London, England Saturday 17 November 2018 The Cleft Lip and Palate Association (CLAPA) is the only national charity supporting people and families affected by cleft lip and/or palate in the UK from diagnosis through to adulthood. Timetable • • • • • • • • • • • • • • • • What’s today all about? • • • • Some ground rules and caveats • • • • • About the Adult Services Project • There are an estimated 75,000 people over the age of 16 living in the United Kingdom who were born with a cleft. • Understanding and supporting the unique needs and experiences of adults affected by cleft is very important to CLAPA. • From March 2018-February 2021, CLAPA is undertaking an exciting project looking at improving services for adults who were born with a cleft funded by the VTCT Foundation. • The goals are to research and understand the experiences, challenges and unmet needs of adults in the UK who were born with a cleft lip and/or palate. • The Adult Services Coordinator is the primary contact for this piece of work. What we did in Year One • • • • • So…what did we find at the roadshow? • We were humbled by how candidly people shared some of their most pivotal moments with us. • As you would expect, there were many different (oftentimes unique) experiences in the community, however there were some common themes that came up many times – these included: • The struggle of obtaining a successful referral to the cleft team as an adult • Being unsure what to expect at cleft team appointments • Not knowing (and health professionals not knowing) what you are entitled to receive on the NHS in adulthood as someone who was born with a cleft • That emotional wellbeing is often impacted, at least in part, by experiences that result from being born with a cleft • That dating experiences are often delayed or not as healthy as people would like them to be with some gender differences • Men – routinely mentioned not asking people out on dates for fear of rejection • Women – reported staying in unhealthy/unproductive relationships as they felt they “couldn’t do any better”. A number of women also mentioned offering sex as a way of feeling accepted. So…what did we find at the roadshow? • As you would expect, there were many different (oftentimes unique) experiences in the community, however there were some common themes that came up many times – these included: • Being unsure about the likelihood of having a child with a cleft, and consequently in some cases being unsure about the decision to have children or not • Social anxiety – a number of people commented that this had almost prevented them from attending the roadshow • Media – the value placed on appearance perfection is too high. Visible differences and speech difficulties are often portrayed negatively in the media, often cast in roles as outcasts, simpletons or antagonists. • CLAPA – that we too could do better by portraying a more honest picture of the cleft experience, ensuring that we validate the feelings of people with both good and bad cleft experiences. • The full report is available at www.clapa.com/roadshowreport. Whole of Life Survey • A comprehensive snapshot of what life is like for adults who were born with a cleft. • Was available online and in paper form from July – October 2018. • Featured over 200 questions and consisted of 12 sections: • About You • Your Health • Emotional Wellbeing • Bullying & Discrimination • Family & Friendships • Dating & Relationships • Genetics & Children • Education • Employment • Eating & Drinking • Additional Demographic Information • Engaging with the Cleft Community Whole of Life Survey • The survey was open to anyone living in the UK who was aged 16 or over on the 1st of June 2018. • The survey consisted of questions specifically related to cleft, as well as many standardised questionnaires which can be compared to a population that weren’t born with cleft to see whether there are differences in the cleft community. • The data in the survey and roadshow has directly influenced the choice of topics for the talks in today’s conference – these are some of the topics that you’ve told us are most important and of interest to you. Whole of Life Survey • Who completed the survey? • 259 responses, 71% completion rate averaging 51 minutes • ~75% female • ~95% white British • ~73% had cleft lip and palate • ~11% had a confirmed syndrome • ~93% heterosexual • ~97% English as a first language • ~50% of people had a bachelor’s degree or higher • ~85% of participants were between aged 25-60 (range was 18-84) • The sample as a whole had an above average income • Most respondents were already engaged with CLAPA having discovered the survey through the CLAPA e-newsletter and social media. Beth Angella Patient Story Hello 21 years old Finished treatment (yay!) Finished university (wahoo!) Specialised in medical communication Cleft career – Smile Train Talk Overview Earlier treatment overview Later surgeries as an adult with cleft Challenges and complications Communication and Psychology Questions Unilateral cleft lip and palate 3 months – lip repair 9 months – palate repair Early treatment Grommets fitted at 2 and 9 years old Bone graft at 9 (nearly 10) years old False tooth on retainer Lower levels of self-esteem More self-conscious Tried to prove myself Constantly on my mind The problem of my nose Profile Mis-attribute negative events Difficulty breathing The answer Ready for university Ready for the change I’d been ‘promised’ The disappointment… Postponed with good reason, but… Frustration / anger / hurt TRUST Two hospitals Need clarity, not confusion Not everything goes to plan… Scar tissue not bone Second time lucky (+ bone graft) Good and bad communication Reassured, but ignored Lost trust Regained with clear, inclusive communication Psychological support Great help as I got older ‘Knew’ what I was going through Coping mechanisms Use a notepad – be heard Music Let yourself be upset, talk to others Have perspective Identify what’s rational and irrational LIFE- CHANGING SURGERY Team effort Self-love Beth’s Cleft Lip and Palate Degree Patient-doctor communication Success and a job offer Things to remember Things aren’t always what you expect (that’s okay) Let yourself feel what you need to Talk to others Keep things in perspective Feel empowered Remember everyone is here for YOU www.bethscleft.com Time to share my smile THANK YOU! Please feel free to ask any questions… Treatment Cleft Journey Psychology English Degree Smile Website Work Train Morning Tea Evie Stergiakouli on behalf of The Cleft Collective Lecturer in Genetic Epidemiology MRC Integrative Epidemiology Unit, University of B r i s t o l What is The Cleft Collective? National cohort study of families affected by cleft lip/palate in the UK, established in 2012 Opportunities generated by The Cleft Collective HugeTotal resourcenumber of of information on affected participants:individuals and families 5669 Open to clinicians and researchers around world for collaboration Address key unanswered questions importantTotal number to all ofstakeholders improve cleft families: care Investigate2017 the causes of cleft and outcomes in children born with cleft Where are we now? Total number of participants: 7159 Mum, dad, baby, sibling Total number of Number of families: maternity units: 2547 80+ Data collection timeline Prenatal Birth 1 2 3 5 8 10 Antenatal Antenatal Saliva from 18 month 3 year Link to medical, educational records and the CRANE database (a cohort cohort cord parents and follow-up follow-up national database of cleft audit data) When blood siblings questionnai questionnai diagnosis sample re re can be 5 year 8 year 10 year Future made via Blood and follow-up follow-up follow-up questionn ultrasound Postnatal lip/palate For the Speech and questionnai questionnai questionnai aires cohort tissue from Language Study, S&L re re re planned When baby for key Antenatal therapists provide diagnosis is assessment data developm cohort made at or Five year Nested ental baseline just after cohort Speech milestone questionnai birth Families and s… re who missed Language recruitment Postnatal Study at birth are cohort Parents are consented baseline invited to at their 5- questionnai take part. year cleft re Audio audit recordings collected. Saliva from parents, child and siblings 5 year baseline questionnai re Biological samples Blood from the baby (primary surgery) Saliva samples from Mum, 1517 samples Mum’s Partner, some siblings (recruitment) 4064 samples Discarded tissue from the baby (primary surgery) Antenatal only 1443 samples Cord blood (birth) 83 samples Child health Experiences of breastfeeding or bottle feeding Eating difficulties Feeding habits Teeth and dental care Gestational age Birth weight Birth length Head circumference Cleft type Timing of diagnosis Timing of surgery Infections Additional medical conditions Diagnosed syndromes / genetic conditions Child development Hearing difficulties Communication gestures Glue ear Parent-child activities Ear infections Nested study of 600 children on Intelligibility Speech and Language led by (to family, peers, Dr Yvonne Wren acquaintances, strangers) 5 years+ Strengths and Difficulties Questionnaire (SDQ): Emotional symptoms Conduct problems 18 months – 5 years Hyperactivity/inattention Ages and Stages Questionnaires: Peer relationship problems Cognitive, Emotional and Social Prosocial behaviour Development Impact on others Parent’s lifestyle and wellbeing • Satisfaction with social support and • Parent’s physical
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