1. 20/09/2015 02:51:54 5864_ER_WHITE. 1 Nurses SIG, Cleft Lip & Palate NURSING Sue Butcher. SRN RSCN SCM Clinical Nurse Specialist, South Thames Cleft Centre Chairman Nurses Special Interest Group, Cleft Lip and Palate. Nurses4cleft.org

2. 20/09/2015 02:51:54 5864_ER_WHITE. 2 Nurses SIG, Cleft Lip & Palate What do specialist nurses do? Nine centres some still dual sites Nine+ different ways of delivering specialist nursing care Dependent on geography, funding and philosophy National minimum standards of care

3. 20/09/2015 02:51:54 5864_ER_WHITE. 3 Nurses SIG, Cleft Lip & Palate So what do I do? A typical working week On call Clinic Pre ABG Teaching Hospital post op discharge Home visit post op follow up Phone calls for progress report 18/12 assessment Feeding support Liaison Preoperative Prebirth feeding Antenatal

4. 20/09/2015 02:51:54 5864_ER_WHITE. 4 Nurses SIG, Cleft Lip & Palate NATIONAL STANDARDS These are the minimum standards of care that should be offered to families with a baby with cleft lip and or palate. Nine Birth Standards Seven Antenatal Standards Ten Perioperative standards (being reviewed) NSF, this refers to the National Service Framework for children, young people and maternity services. Department of Health, 2004

5. 20/09/2015 02:51:54 5864_ER_WHITE. 5 Nurses SIG, Cleft Lip & Palate FOR THE BIRTH OF A BABY WITH CLEFT LIP AND /OR PALATE Standard 1. All babies born with a cleft lip and/or palate are to be diagnosed at birth. (NSF 1 & 11) Standard 2. All babies are to be referred by relevant professionals to the cleft team within 24hrs of diagnosis. (NSF 1 & 11) Standard 3. The Clinical Nurse Specialist should visit within 24 hours of receiving referral. (NSF 2 & 11)

6. 20/09/2015 02:51:54 5864_ER_WHITE. 6 Nurses SIG, Cleft Lip & Palate Standard 4. A feeding plan should be devised and documented that supports the mother’s preference for feeding at the first visit. (NSF 1, 2 & 11) Standard 5. All babies should have a nationally recognised feeding assessment prior to the introduction of assisted feeding. (NSF 1, 7 &11) Standard 6. All mothers who choose to breast feed should be offered an electric breast pump, for as long as they require, at no cost to themselves. (NSF 2, 3 & 11)

7. 20/09/2015 02:51:54 5864_ER_WHITE. 7 Nurses SIG, Cleft Lip & Palate Standard 7. All parents to be offered Counselling and support Verbal and written information re cleft treatment and management Contact with a family of a child with a similar diagnosis Written information about CLAPA. (NSF 1, 2, 3, 6, 9 & 11)

8. 20/09/2015 02:51:54 5864_ER_WHITE. 8 Nurses SIG, Cleft Lip & Palate Standard 8. All babies with cleft palate referred to local audiology/ENT (NSF 1, 3 & 7) Standard 9. All babies should be visited at home by a Clinical Nurse Specialist within one week of discharge (NSF 1, 2, 3 & 8)

9. 20/09/2015 02:51:54 5864_ER_WHITE. 9 Nurses SIG, Cleft Lip & Palate FOR THE ANTENATAL DIAGNOSIS OF A FACIAL CLEFT Standard 1. Parents are to be referred by relevant professionals to the cleft team on the day of initial diagnosis. (NSF 1, 2, &7) Standard 2. Parents are to be given written details of the cleft team, on the day of initial diagnosis. (NSF 1, 2 & 7) Standard 3. Parents are to be contacted by the Clinical Nurse Specialist within 24 hours of receiving referral. (NSF 1, 2, 4 &7)

10. 20/09/2015 02:51:54 5864_ER_WHITE. 10 Nurses SIG, Cleft Lip & Palate Standard 4. Parents are to be offered a visit at an appropriate and negotiated time and place. (NSF 1, 2, & 7) Standard 5. The Clinical Nurse Specialist shall make contact with the primary health care team during the antenatal period. (NSF 1, 2, 4 & 7)

11. 20/09/2015 02:51:54 5864_ER_WHITE. 11 Nurses SIG, Cleft Lip & Palate Standard 6. All parents are to be offered these services in the 2nd and 3rd trimester. Counselling and support Appropriate feeding preparation and plan for immediate postnatal period. Verbal and written information re cleft treatment and management. Opportunity to meet other families Opportunity to meet the cleft team Written information about CLAPA (NSF 1, 2 & 7) Standard 7. The prenatal diagnosis of classification of lip and alveolar clefting should correspond with the diagnosis at birth. (NSF 2 & 7)

12. 20/09/2015 02:51:54 5864_ER_WHITE. 12 Nurses SIG, Cleft Lip & Palate Development of the Specialist Nurses Role 18 month joint review clinics with SALT Support for older children around ABG and Orthognathic surgery Audit Research

13. 20/09/2015 02:51:54 5864_ER_WHITE. 13 Nurses SIG, Cleft Lip & Palate Challenges and Problems Caseload allocation (recommended 1:25) Budget reductions leading to- Downgrading and “skill mixing” –replacing highly skilled CSN Covering wards

14. 20/09/2015 02:51:54 5864_ER_WHITE. 14 Nurses SIG, Cleft Lip & Palate Do we make a difference? “Thank you for all your support, all our worries were dealt with so well and now we can look forward to an exciting future” “I felt you were there for us and ensured that we had the best care possible, I can’t really express how much that support has mean to us” “There were times when we didn’t know how we would have got through this without you”