Bulgarian ProjectBulgarian Project

Emma SouthbyEmma Southby

Lead Nurse South Thames Lead Nurse South Thames Cleft ServiceCleft Service

CollaborationCollaboration

~ ~ CLAPA CLAPA

~~ European Cleft Organisation European Cleft Organisation

~ ~ Transforming Faces WorldwideTransforming Faces Worldwide

~ ~ ALAALA

• 120 babies born each year in Bulgaria120 babies born each year in Bulgaria• All treatment carried out in Sofia and All treatment carried out in Sofia and

PlodivPlodiv• Youri Anastastassov’s team in Plodiv Youri Anastastassov’s team in Plodiv

see 60 -70 new babies a yearsee 60 -70 new babies a year~Multidisciplinary approach~Multidisciplinary approach~Eurocran~Eurocran~Keen to work with us~Keen to work with us

Why?Why?

In Bulgaria there are lots of misconceptions In Bulgaria there are lots of misconceptions about clefts amongst health professionals about clefts amongst health professionals

as well as the publicas well as the public

• 40% of children with a cleft are put in an 40% of children with a cleft are put in an orphanageorphanage

• 60% of parents advised to leave their child 60% of parents advised to leave their child in an orphanage in an orphanage ALA 2009ALA 2009

• 87% of those were advised by a 87% of those were advised by a healthcare professional healthcare professional ALA 2009ALA 2009

Visits to orphanagesVisits to orphanages

• 80% of children with a cleft are feed 80% of children with a cleft are feed via a nasogastic tubevia a nasogastic tube

Nasogatric tube feedingNasogatric tube feeding

• 80% of children with a 80% of children with a cleftcleft

• Often until palate Often until palate surgery at 10 mnthssurgery at 10 mnths

• Cannot go homeCannot go home

• To protect against To protect against aspiration yet high aspiration yet high incidence of severe incidence of severe aspiration with NG aspiration with NG tube feedingtube feeding

Project plansProject plans

• Creation of a nurses networkCreation of a nurses network

Sofia Sofia ~ Plodiv ~ Varna~ Plodiv ~ Varna

• Parent contact trainingParent contact training

• Children’s campsChildren’s camps

• Hospital Equipment needsHospital Equipment needs

• Cleft team personnel needsCleft team personnel needs

• Support of ALASupport of ALA

Creation of nurses networkCreation of nurses network

• Applicable to BulgariaApplicable to Bulgaria

• 1 nurse from Varna ; 1 nurse from 1 nurse from Varna ; 1 nurse from PlodivPlodiv

• Undertake Nottingham Cleft CourseUndertake Nottingham Cleft Course

• Spend time with nurse teams at Spend time with nurse teams at Nottingham, Manchester and LondonNottingham, Manchester and London

• Nurses training in BulgariaNurses training in Bulgaria

Applicable to BulgariaApplicable to Bulgaria

• Nurses have a low statusNurses have a low status• Very little communication between Very little communication between

hospitalshospitals• Sometimes surgery is high costSometimes surgery is high cost• Only surgery is paid for by the Only surgery is paid for by the

governmentgovernment• No home visitingNo home visiting• Romany familiesRomany families

Nurse TrainingNurse Training

Aims for the trainingAims for the training

~ Challenge misconceptions ~ Challenge misconceptions ~ 27% advised by Midwives ~ 27% advised by Midwives ALA 2009ALA 2009

~ Educate about treatment and feeding~ Educate about treatment and feeding

~ National telephone number~ National telephone number

~ Find other nurses~ Find other nurses

~ Empower the nurses to empower the ~ Empower the nurses to empower the familiesfamilies

NowNow

• Parent telephone helplineParent telephone helpline

• Kostadinka in PlodivKostadinka in Plodiv

• Sevji in VarnaSevji in Varna

• SLT Nina in SofiaSLT Nina in Sofia

• Friday new referral clinic with surgeon and Friday new referral clinic with surgeon and nursenurse

• Feeding assessmentsFeeding assessments

• Case discussion via SkypeCase discussion via Skype

Parent Contact TrainingParent Contact Training

• Applicable to BulgariaApplicable to Bulgaria

• 16 participants16 participants

• 3 days3 days

• Delivery by Gareth and SueDelivery by Gareth and Sue

• TranslatorsTranslators

• Content similarContent similar

• Plodiv cleft team presentationsPlodiv cleft team presentations

Applicable to BulgariaApplicable to Bulgaria

• Translation of materialsTranslation of materials

• Relevant case studiesRelevant case studies

• Psychologist inputPsychologist input

• Virtual informationVirtual information

• Skype for support and clinicsSkype for support and clinics

• EmailEmail

• Spreading the wordSpreading the word

Two Case History’s Two Case History’s

• 8 months old8 months old• Only ever nasogastric tube fed to prevent Only ever nasogastric tube fed to prevent

aspiration aspiration • 4 aspirations4 aspirations• In an orphanage since birthIn an orphanage since birth• Feeding assessment undertakenFeeding assessment undertaken• Commenced oral feedingCommenced oral feeding• After 5 days fully orally fedAfter 5 days fully orally fed• Reunited with MotherReunited with Mother

• 20 days old20 days old

• Only nasogastric tube fedOnly nasogastric tube fed

• In an orphanage since birthIn an orphanage since birth

• Attended clinic with parents and Attended clinic with parents and GrandparentsGrandparents

• Feeding assessment undertakenFeeding assessment undertaken

• Ng tube removed and fully orally fed within 2 Ng tube removed and fully orally fed within 2 daysdays

• Home with parentsHome with parents

The FutureThe Future

• Follow up new nurse contactsFollow up new nurse contacts

• Further nurse training in other regionsFurther nurse training in other regions

• Support and supervision of parent Support and supervision of parent contactscontacts

• Training paediatricians Training paediatricians

• Quicker referralsQuicker referrals

• Gradually change attitudesGradually change attitudes

The journey of a thousand leagues The journey of a thousand leagues begins with a single stepbegins with a single step

Adlei E StevensonAdlei E Stevenson