Emma Southby Lead Nurse South Thames Cleft Service Bulgarian Project Emma Southby Lead Nurse South Thames Cleft Service

Collaboration ~ CLAPA ~ European Cleft Organisation ~ Transforming Faces Worldwide ~ ALA Nigel Mercer, Peter Mossey, Anton Vordaman

120 babies born each year in Bulgaria All treatment carried out in Sofia and Plodiv Youri Anastastassov’s team in Plodiv see 60 -70 new babies a year ~Multidisciplinary approach ~Eurocran ~Keen to work with us

Why? In Bulgaria there are lots of misconceptions about clefts amongst health professionals as well as the public 40% of children with a cleft are put in an orphanage 60% of parents advised to leave their child in an orphanage ALA 2009 87% of those were advised by a healthcare professional ALA 2009

Visits to orphanages

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

Nasogatric tube feeding 80% of children with a cleft Often until palate surgery at 10 mnths Cannot go home To protect against aspiration yet high incidence of severe aspiration with NG tube feeding

Project plans Creation of a nurses network Sofia ~ Plodiv ~ Varna Parent contact training Children’s camps Hospital Equipment needs Cleft team personnel needs Support of ALA

Creation of nurses network Applicable to Bulgaria 1 nurse from Varna ; 1 nurse from Plodiv Undertake Nottingham Cleft Course Spend time with nurse teams at Nottingham, Manchester and London Nurses training in Bulgaria

Applicable to Bulgaria Nurses have a low status Very little communication between hospitals Sometimes surgery is high cost Only surgery is paid for by the government No home visiting Romany families

Nurse Training Aims for the training ~ Challenge misconceptions ~ 27% advised by Midwives ALA 2009 ~ Educate about treatment and feeding ~ National telephone number ~ Find other nurses ~ Empower the nurses to empower the families

Now Parent telephone helpline Kostadinka in Plodiv Sevji in Varna SLT Nina in Sofia Friday new referral clinic with surgeon and nurse Feeding assessments Case discussion via Skype

Parent Contact Training Applicable to Bulgaria 16 participants 3 days Delivery by Gareth and Sue Translators Content similar Plodiv cleft team presentations

Applicable to Bulgaria Translation of materials Relevant case studies Psychologist input Virtual information Skype for support and clinics Email Spreading the word

Two Case History’s

8 months old Only ever nasogastric tube fed to prevent aspiration 4 aspirations In an orphanage since birth Feeding assessment undertaken Commenced oral feeding After 5 days fully orally fed Reunited with Mother

20 days old Only nasogastric tube fed In an orphanage since birth Attended clinic with parents and Grandparents Feeding assessment undertaken Ng tube removed and fully orally fed within 2 days Home with parents

The Future Follow up new nurse contacts Further nurse training in other regions Support and supervision of parent contacts Training paediatricians Quicker referrals Gradually change attitudes

The journey of a thousand leagues begins with a single step Adlei E Stevenson