Children's Nursing Services
The Children's Nursing service was pioneered and fully funded by DebRA until recently when three NHS funded nurses were appointed to work alongside the DebRA team.
The service is available to all children with any form of EB (Epidermolysis Bullosa) and their families. The aims of the service are to offer specialist nursing care to families and health professionals with particular emphasis on skin and wound care, feeding techniques, pain relief, genetic counselling and coordination of prenatal diagnosis. Advice on feeding techniques is given in collaboration with the Specialist Paediatric Dietitian for EB who is based at Great Ormond Street Hospital for Children (GOSH).
The children's nurse specialists are available for telephone advice or home visits where appropriate. Areas of work include:
- offering Immediate telephone advice to staff in maternity hospitals following notification of a newly born baby with suspected EB;
- visiting the baby and family as soon as possible to offer practical advice and to facilitate early diagnosis by taking a skin biopsy when appropriate;
- offering followup visits on a regular basis until parents and community staff are confident in care and handling;
- training community paediatric nurses in the child's home town so that they can help parents with day-to-day management;
- providing information and education to local healthcare staff including community paediatric nurses, health visitors, GPs, social workers and genetic counsellors;
- coordinating prenatal diagnosis for families affected by EB in conjunction with St Thomas' Hospital, London;
- coordinating outpatient appointments and admissions for those children who attend Great Ormond Street Hospital (GOSH) in an attempt to avoid disruption to family life;
- attending outpatient clinics at GOSH and assessing each child during their in-patient stay;
- attending specialist EB clinics in Leeds, Dublin, Glasgow, Aberdeen and Edinburgh;
- providing information for nurseries, schools and colleges and offering visits to these establishments to give advice on care and management of the child In the school environment;
- helping ease the transition of adolescents from the paediatric to the adult health care service in liaison with the adult EB nurse specialists;
- participating in research projects to help improve quality of life for children with EB;
- evaluating new dressing materials;
- organising and staffing short holidays for children with EB;
- working closely with DebRA to complement their services.
Who are the Children's nurse specialists?
Jackie Denyer. Clinical Specialist Team Leader, 020 7829 7808
Jackie Denyer is the Clinical Specialist Team leader of both the children's nursing team at GOSH and the paediatric team in Scotland. Jackie has been working with children with EB since 1991. Jackie is a Registered Sick Children's Nurse and Registered General Nurse, and a Health Visitor.
Jackie has a Certificate in Counselling and has also completed a course enabling her to offer Genetic Counselling. She is currently undertaking further training to become an accredited counsellor. Jackie has primary responsibility for newly born babies with EB.
She is chairperson of the International EB Nurse's Forum, and answers all the international queries from families and health professionals.
Jackie is based at Great Ormond Street Hospital for Children in London and works full time.
Lesley Foster, EB Nurse Specialist, 020 7829 7808
Lesley Foster has worked with the EB team since August 2002. She has extensive experience working as a children's nurse and is a qualified Health Visitor. Lesley has obtained a BSC (Hons) degree in community children's nursing. Lesley takes the lead for liaison with nurseries and schools.
Lesley is based at Great Ormond Street Hospital for Children in London and works full time.
For further information about EB children's nursing in the South, please contact the EB Team at Great Ormond Street Children's Hospital at Jackie.denyer@debra.org.uk or call 020 7829 7808.
Out of hours telephone advisory on-call service from the Great Ormond Street team for emergencies only (also available to families in Scotland) via Great Ormond Street switchboard, tel 020 7405 9200, or direct pager number 07623970066.
Please note the pager will not receive calls while nurses are travelling on the underground trains or during air travel. Please call again if you do receive an answer. Please note if your number does not accept anonymous calls we will not be able to return your call.
Children's EB Nursing service in Scotland:
Pippa Millican, Paediatric EB Nurse Specialist - 01698 477777
Pippa Millican is the paediatric nurse specialist for children in Scotland covering the South and East. Pippa is an experienced Registered Sick Children's Nurse. Prior to working for DebRA she was a senior staff nurse on the dermatology ward at Great Ormond Street Hospital.
Pippa works full time from home in Edinburgh and the DebRA Scotland office in Hamilton.
For further information and enquiries about EB children's nursing in Scotland please call 01698 477 777. Out of hours on call telephone advisory service via Great Ormond Street EB Nurses (see details above).
Birmingham Children's Hospital
Ruth Ward - Senior Clinical Nurse Specialist - 0121 333 8224/8226
Ruth Ward is the Senior Clinical Nurse Specialist for the team at Birmingham Children's Hospital. Ruth has previous experience in paediatric oncology and haematology and community children's nursing - more recently managing a medical day unit. Ruth is currently studying for her Master's degree in Health Sciences. Ruth has been leading the Birmingham Children's team since it began in 2002 and works full time.
Natalie Hadley, Clinical Nurse Specialist - 0121 333 8224/8226
Natalie Hadley qualified as a paediatric nurse in 1998 and worked on a very varied medical ward until 2002 when she joined the EB team. Natalie has interests in Complimentary therapies, pain management and transition care for young people.
Emma McAndrew - Clinical Nurse Specialist - 0121 333 8224/8226
Emma McAndrew qualified in 1996 and has worked in various settings including paediatric accident & emergency and community children's nursing. She has a special interest in child psychology.
Dawn James - Clinical Nurse Specialist - 0121 333 8224/8226
Dawn James has worked in general paediatrics for many years and has a special interest in dermatology, wound care and child protection. Other interests include teaching and staff development. She joined the team in 2002 and works part time for 2 days a week. Dawn also works on one of the medical wards at BCH for a further 2 days a week.
For further information and enquiries about EB children's nursing in the Midlands and the North, please contact the EB team at Birmingham Children's Hospital at eb.team@bch.nhs.uk or call 0121 333 8224/8226. There is a 24 hour answer phone and instructions for contacting the team in an emergency.