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Jacqueline Denyer

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Jacqueline Denyer. Senior Clinical Nurse Specialist, Epidermolysis ... Wrapped in 'non adherent dressings' Parents advised not to pick her up. Case study ... – PowerPoint PPT presentation

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Title: Jacqueline Denyer


1
Jacqueline Denyer
  • Senior Clinical Nurse Specialist, Epidermolysis
    Bullosa (Paediatric)
  • Great Ormond Street Hospital and DebRA UK

2
The Paediatric Team
  • 3 nurses.
  • 2 full time
  • 1 part time
  • Responsibilities
  • Neonatal outreach
  • Clinics
  • Schools

3
Career History
  • Paediatric Nursing Sister
  • Community Health Visitor
  • What next? needed a new challenge which
  • Must be community based and specialised.
  • Search the job advertisements what is EB?
  • Little information at that time, but appeared to
    be an area where lots of progress could be made.

4
Start work as Paediatric EB Clinical Nurse
Specialist 1991 plan to stay in this post for 3
years
  • No formal training, learnt from patients and
    parents
  • Realised dressings used were very out dated and
    on mission to improve wound management
  • Informed that EB wounds are not painful another
    mission to manage pain appropriately!
  • Concerned that vulnerable neonates were
    transported to specialised centres set up
    neonatal outreach service

5
Still in post after 13 years!
  • Support from DebRA and our multi disciplinary
    team
  • In the absence of gene therapy the nursing care
    makes the difference
  • We get to know the families really well
  • There are always new products to try and it is
    inspirational when we find one which helps.
  • Diverse and stimulating work including genetic
    counselling, tissue viability, pain management,
    nutrition, palliative care

6
Making a difference
  • A very grateful group of patients!
  • The DebRA nurses
  • Aim to improve quality of life by
  • Working with families and giving them choices
  • Reducing pain and discomfort
  • Improving psychological well-being
  • Enabling children to attend mainstream schools
  • Improving nutrition
  • Reducing disability
  • Providing expert palliative care

7
Case study
  • Baby R, born at term. Provisional diagnosis
    staphylococcal infection.
  • Intravenous antibiotics commenced.
  • Naso- gastric feeding
  • Nurses told not to lance blisters
  • Wrapped in non adherent dressings
  • Parents advised not to pick her up

8
Case study
  • Day 2, baby visited in SCBU by EB CNS.
  • Provisional diagnosis of EB simplex made. Skin
    biopsy taken which later confirmed the diagnosis.
  • Intra venous cannula and naso gastric tube
    removed without skin stripping
  • Blisters lanced. Appropriate dressings applied
  • Parents and staff shown how to handle the baby,
    mother had her first cuddle
  • Baby discharged with parents day 5
  • DebRA nurse continued to visit at home and
    trained local community nurses.

9
Case study
  • Comments from parents.
  • It was a relief to see someone who knew what was
    wrong with our baby and who could answer our
    questions
  • She is my baby and I was finally allowed to hold
    her!
  • Knowing I can speak to a DebRA nurse at any time
    gives me the confidence to care for her.
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