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

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

4. 120 babies born each year in Bulgaria
All treatment carried out in Sofia and Plodiv
Youri Anastastassov’s team in Plodiv see new babies a year
~Multidisciplinary approach
~Eurocran
~Keen to work with us

5. 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

6. Visits to orphanages

7. 80% of children with a cleft are feed via a nasogastic tube

8. 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

9. 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

10. 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

13. 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

14. 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

16. 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

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

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

21. Two Case History’s

23. 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

25. 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

26. 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

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