Edith's case study was completed in 2017 and reflects 2017 prices
Sickle cell disease is a recessive blood disorder caused by a mutation in the B- globin gene. Stroke is recognised as a major complication of sickle cell disease and the risk of stroke is estimated to be 250 times higher in those with sickle cell disease compared with the general population.
Annual Transcranial Doppler Scanning (TDS) is recommended for early identification of stroke risk factors in children with sickle cell disease between the ages of 2 and 16 years old. This enables referral on to other services for further investigations and early intervention with blood transfusion and medication management where indicated.
Hitherto, as far as we know, TDS has only been undertaken by senior medical staff trained in the use of the specialist equipment, for example the EZ-Dop mobile non-imaging scanning device. However Edith, Roald Dahl Paediatric Haemoglobinopathy Nurse Specialist at Whittington Health NHS Trust, has established a nurse-led TDS service and sought to demonstrate the value of her nurse-led service.
Arguing that the outcomes are identical for a nurse-led and a consultant-led service, Edith demonstrated that a nurse-led service is as effective, more efficient and offers enhanced continuity of care.
Edith has been a Roald Dahl Nurse for 13 years, firstly at North Middlesex University Hospital NHS Trust and then at Whittington Health NHS Trust since 2006. She works with children and young people (aged from 3 months to 18 years) with Sickle Cell Disease and Thalassaemia, both inherited blood disorders.
As a Roald Dahl Nurse, Edith acts as a named nurse and is a point of contact for the patients and families. She co-ordinates care by liaising with internal and external agencies. Her work is not confined to the hospital, as she works in the community supporting her patients at their schools by writing up the child's care plans, giving health advice and educating the teaching staff and pupils. She has a supportive and educational role assisting the child to manage their own condition and identify signs and symptoms that need prompt medical attention. Edith also smooths the pathway for patients within the hospital.
You can contact Edith by email: firstname.lastname@example.org.