ࡱ> .0- ;bjbj 4;  3333d33)))"33))))3 )u0).))=8>L,)x$F : Jackie Imrie - The Role of the Clinical Nurse Specialist Since qualifying as a paediatric nurse in Leeds in 1981, Jackie has worked in many areas as a staff nurse including; general paediatrics, oncology, bone marrow transplant unit, cystic fibrosis unit and neonatal intensive care and also as a sister in neonatal intensive care. She moved to Bolton in 1993 and worked in general paediatrics for a few years before taking up the post of staff nurse at the Willink metabolic unit at the Royal Manchester Children's Hospital, assisting with clinics for children and adults with a range of metabolic disorders. In 1999 Jackie became the first support nurse for families with Niemann-Pick disease. Having set up the national database and help line, she supports families throughout the country with this group of rare disorders. From 1991 to 1996 she completed an Honours degree with the Open University in Biochemistry, Genetics and related subjects. From 2000 to 2002 she studied for the MSc in Genetic Counselling and graduated in December 2003. Jackie writes: Niemann-Pick Disease (NPD) is a group of rare, metabolic, lysosomal storage disorders affecting approximately 90 families in Great Britain. The needs of children and adults affected by the different types of NPD are complex, especially so with Types A and C, which are neurodegenerative and life limiting. In my role as Clinical Nurse Specialist for Niemann-Pick Disease I offer a dedicated service to these families. I am based at the Royal Manchester Childrens Hospital, along with Dr Ed Wraith, Consultant Paediatrician and Elizabeth Jacklin, Clinical Research Nurse for NPD. My post, and that of Elizabeths, are funded by the NPDG (UK), with part funding for my post kindly provided by BBC Children in Need, The Foyle Foundation and The Roald Dahl Foundation. We are very grateful to these organisations for supporting the work of the Group and are especially appreciative of the fundraising efforts of all our families and friends who, through their hard work, continue to ensure the continuation of these posts. As the disease progresses, those affected can develop complex needs that can change rapidly. Families often struggle to cope and as a result of this the quality of family life can be severely affected. We can provide support for the whole family, ranging from friendly advice over the phone to home visits, or liaising with other care professionals to ensure the families receive the help they need. This disease not only has devastating consequences for the immediate family; relatives and friends often do not know what to say or how to help. We offer genetic counselling to help families come to terms with the implications of this inherited disease and are able to assist with arranging carrier and prenatal tests. Please contact me if you feel I can help in any way; even if you are unsure if your question is related to NPD, I will happy to take your call. 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