The Children's Nursing service was pioneered and fully funded by DebRA until recently when three NHS funded nurses were appointed, working alongside the current DebRA team of five. The service is available to all children with any form of epidermolysis bullosa (EB) 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. Senior Clinical Nurse Specialist, 020 7829 7808
Jackie Denyer is the DebRA senior clinical nurse specialist and leader of the children's nursing team. Jackie has 11 years experience in working with children with EB. Jackie is a Registered Sick Children's Nurse and Registered General Nurse and Health Visitor. She has held posts as a Paediatric Ward Sister and has extensive community experience as a generic Health Visitor. Jackie has a Certificate in Counselling and has also completed a course enabling her to offer Genetic Counselling. Jackie is trained to take skin biopsies to enable diagnosis for EB to be made and has primary responsibility for newly born babies with EB. She is Chairperson of the International EB Nurses' Forum and answers all the international queries from families and health professionals. Jackie is based at Great Ormond Street Hospital for Children in London.
Jackie Denyer offers an out of hours on-call service for emergencies only via Great Ormond Street switchboard Tel: 020 7405 9200
Sally Turner, Clinical Nurse Specialist, 020 7829 7808
Sally Turner has been working in the DebRA team since 2001. She has 13 years experience of nursing children, initially working in a hospital setting and more recently as a Children's Community Nursing Sister. Sally is a Registered Sick Children's Nurse, Registered General Nurse and a District Nurse. Sally has primary responsibility for liaison with education services. Sally is based at Great Ormond Street Hospital for Children in London.
Lesley Foster, EB Nurse Specialist, 020 7829 7808
Lesley Foster has worked with the DebRA EB team since August 2002. She has extensive experience working as a Children's Nurse for 23 years and is a qualified Health Visitor. More recently Lesley worked as a Community Children's Nursing Sister and obtained a BSC (Hons) degree in Community Children's Nursing. Lesley takes the lead for transition of children to the adult service. Lesley is based at Great Ormond Street Hospital for Children in London.
Evelyn Gilday, Paediatric EB Nurse Specialist - Scotland, (North and West) 0141 6462124 / 01698 477 777
Evelyn Gilday is the Children's EB Nurse Specialist in Scotland, covering the North and West. She is a Registered Sick Children's Nurse with 20 years experience. Her background is in acute medical nursing, specialising in dermatology, respiratory and infectious diseases. Prior to taking up the post with DebRA she was a Dermatology Nurse Specialist. Evelyn works from home in Glasgow and the DebRA Scotland Office in Hamilton.
Pippa Millican, Paediatric EB Nurse Specialist - Scotland (South and East) 0131 3462606 / 01698 477777
Pippa Millican is the children's EB nurse specialist for Scotland covering the South and East. She works from home and from the DebRA office in Hamilton.
For further information or enquiries about the Children's EB nursing in the South and at Great Ormond Street, please contact Jackie Denyer.
Birmingham Children's Hospital
Ruth Ward - Senior EB Nurse Specialist
Ruth Ward is the Senior Clinical Nurse Specialist for the team at Birmingham Children's Hosptital. Ruth has previous experience in paediatric oncology and haematology and children's community nursing - more recently managing a medical day treatment unit. Ruth has been leading the Birmingham team since it began in 2002. Ruth is able to perform skin biopsies. Ruth is currently studying for her Masters degree in Health Sciences.
Natalie Hadley, EB Nurse Specialist
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 complementary therapies, pain management and transitional care for young people.
Sheila Richards - EB Nurse Specialist
Sheila Richards qualified in 1987 and as a sick children's nurse in 1993. She has extensive experience in paediatric surgery and neo-natal intensive care and has been working more recently in general dermotology.
Sheila works with the EB team at Birmingham for one day per week.
Emma McAndrew - EB Nurse Specialist
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 - EB Nurse Specialst
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 works part time with the EB team for two days each week and also on one of the children’s medical wards at BCH for two 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 or 8226. There is a 24 hour answerphone and instructions for contacting the team in an emergency.
