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Jacqueline Denyer


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

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

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

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.

Start work as Paediatric EB Clinical Nurse
Specialist 1991 plan to stay in this post for 3
  • No formal training, learnt from patients and
  • 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

Still in post after 13 years!
  • Support from DebRA and our multi disciplinary
  • 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

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

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

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.

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
  • She is my baby and I was finally allowed to hold
  • Knowing I can speak to a DebRA nurse at any time
    gives me the confidence to care for her.
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