Annual Review 2012 - DebRA

• Update, maintain and add new titles to theDEBRA library of publications accessible tothe EB community, carers and healthcareworkers 24/7. Grazed an eye? New baby onthe way? Child starting playgroup? Wonderingwhat foods to avoid? DEBRA’s library aims toprovide answers to all these questions andthousands more every day.• Provide additional vital bereavement supportover and above that which is provided by theNHS. The relationship between family and EBNurse is a very special one. The bereavementsupport service allows fullness of time forthe nursing team to provide the supportthey feel is right, according to need.£290ensures that people with EB have access toa specialist podiatrist at a foot clinic£609is the predicted daily cost of DEBRAfunded enhanced EB nursing activitiesacross the UK in 2013£9,000ensures that each of the EB specialistnurses can access training and the mostup to date information about EB and clinicalcare for patients£40,000will ensure that as senior EB nurses reachretirement in the next few years we have thenecessary resource in place to ensurecontinuity of service to patients and retainthe amazing amount of experience andexpertise gained in the field of EB nursingover the past 25 years£65,000will cover the annual cost of a new ClinicalFellow to work support the clinical serviceand undertake new projects and initiativesThe DEBRALibrary ofPublicationsFor patients, families and friends, adiagnosis of Epidermolysis Bullosa carrieswith it great uncertainty. There is so much tolearn about EB: its symptoms, treatmentsand everyday living with EB.As well as providing overview informationalbooklets for EB, answering all the keyquestions a new diagnosis of EB brings forpatient and families alike, DEBRA alsoproduces information for professionals andcarers. The following titles are just a few ofover twenty-five titles on offer. We areaiming to review and update many of thesetitles, identify gaps and developpublications to meet the needs of peopleliving and working with EB. Ultimately, thesewill become an online Library for access toinformation any time of the day or night.• Caring for Hands in EB• Eye Care in EB• A Guide to Physiotherapy Treatment forChildren with Epidermolysis Bullosa• The Role of Physiotherapy in the school -child with EB• Epidermolysis Bullosa: A Guide forParents, Schools & Playgroups• Nutrition for Babies with EB• The new baby with EB• Care of the women with EB duringpregnancy & childbirth – forprofessionals• Pregnancy & Childbirth in EB – a guidefor expectant mothers• EB - An Outline for Professionals• Clinical Management of Children &Adults with Epidermolysis Bullosa*Please note: The costs shown are in no way indicative of salary and include variousother costs associated with the provision of the service outlined.9