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
10/12/2011 08:05:46 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
10/12/2011 08:05:46 5864_ER_WHITE. 2
So what do I do?
A typical working week
• Phone calls for progress report
• On call • 18/12 assessment
• Clinic • Feeding support
• Pre ABG • Liaison
• Teaching • Preoperative
• Hospital post op discharge • Prebirth feeding
• Home visit post op follow up • Antenatal
Nurses SIG, Cleft Lip & Palate
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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
10/12/2011 08:05:46 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
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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)
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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
10/12/2011 08:05:46 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
10/12/2011 08:05:46 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)
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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)
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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
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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
10/12/2011 08:05:46 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
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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”
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