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.