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Nurses4cleft.org NURSING Sue Butcher. SRN RSCN SCM Clinical Nurse Specialist, South Thames Cleft Centre Chairman Nurses Special Interest Group, Cleft Lip and Palate. Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:37 5864_ER_WHITE. 1 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 Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:37 5864_ER_WHITE. 2 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 Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:37 5864_ER_WHITE. 3 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 Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:37 5864_ER_WHITE. 4 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) Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:37 5864_ER_WHITE. 5 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) Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:38 5864_ER_WHITE. 6 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) Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:38 5864_ER_WHITE. 7 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) Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:38 5864_ER_WHITE. 8 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) Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:38 5864_ER_WHITE. 9 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) Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:38 5864_ER_WHITE. 10 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) Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:38 5864_ER_WHITE. 11 Development of the Specialist Nurses Role • 18 month joint review clinics with SALT • Support for older children around ABG and Orthognathic surgery • Audit • Research Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:38 5864_ER_WHITE. 12 Challenges and Problems • Caseload allocation (recommended 1:25) • Budget reductions leading to• Downgrading and “skill mixing” –replacing highly skilled CSN • Covering wards Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:38 5864_ER_WHITE. 13 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” Nurses SIG, Cleft Lip & Palate 16/07/2015 23:19:39 5864_ER_WHITE. 14