scholarly journals 401 Scandinavian Nurse Specialist Group/Cystic Fibrosis (SNSG/CF)

2006 ◽  
Vol 5 ◽  
pp. S89
Author(s):  
V. Bregnballe ◽  
I. Erwandert
2021 ◽  
Vol 10 (4) ◽  
pp. e001427
Author(s):  
Rachel Dunk ◽  
Susan Madge

Cystic fibrosis (CF) is a genetic, life-limiting disease without a cure; treatment is complex and lifelong. Respiratory failure is the most common cause of death; however, gastrointestinal disease, diabetes and liver disease are common comorbidities. Coronavirus disease (COVID-19) rapidly changed healthcare services across the globe, including redeployment of healthcare professionals. This adult CF service was challenged to continue a patient facing service within severe staffing and structural limitations.Not only were many members of the CF multidisciplinary team (MDT) redeployed at the start of the first wave, but also both the CF and ambulatory care wards were closed. Fortunately, the CF clinical nurse specialists (CF-CNSs) remained in their role. Rapid change and adaptation of the CF service was required to ensure that patients did not feel abandoned and access to treatment remained available. The role of the CF-CNS was therefore pivotal in this change.The aim of this project was to use quality improvement methodology to plan an emergency service allowing a reintroduction of ambulatory care services. Success was measured by the number of patients clinically reviewed with or without intervention, and the reasons for patients contacting the CF-CNS via email and phone were recorded.In weeks 1 and 2 of the emergency service, the CF-CNSs triaged patients by phone, then reviewed face-to-face when necessary. This first step allowed the CF-CNSs to start two patients on home intravenous antibiotics. This service continued to be developed over the following 12 weeks, leading to a total of 36 patient attendances. In March 2020, n=1187 patients made contact (mostly COVID-19, unwell and medication related), in April n=904 and May n=870 (blood test results, unwell and medication related).The motivation of the CF-CNSs was pivotal to the success of this initiative with the CF MDT available to provide some support and advice. It concluded at week 12, which then saw the opening of the formal ambulatory care ward and returning redeployed ward staff.


2019 ◽  
Vol 28 (20) ◽  
pp. 1342-1343
Author(s):  
Kairen Griffiths

Kairen Griffiths, Cystic Fibrosis Nurse Specialist, NHS Grampian, discusses her role caring for people with cystic fibrosis and why she feels lucky to have worked in this field for over two decades


Author(s):  
L. Seddon ◽  
K. Dick ◽  
S. B. Carr ◽  
I. M. Balfour-Lynn

Abstract The way results of cystic fibrosis (CF) newborn screening are communicated to parents is critical yet is done differently across the globe. We surveyed parents of 101 children in our tertiary London paediatric centre with a 48% response rate. Parental responses were as follows: 40/42 (95%) said the information could not have been given over the phone and 39/43 (91%) said they wanted both partners present; 27/42 (64%) said it was helpful having the health visitor also present; and 37/40 (92%) felt it was acceptable to wait until the next day for the sweat test. We have reduced the time from first contact to arriving in the home to 2–3 h. Conclusion: We believe that this survey backs up our approach of a home visit by a CF nurse specialist with the family’s health visitor to break the news. This is challenging in the current COVID-19 pandemic. What is Known:• Breaking bad news can have a lasting impact on parents when not done the right way.• Giving results of cystic fibrosis (CF) newborn screening is done differently within the UK and around the world.What is New:• Our parental survey revealed that the majority (92%) believed this should be done face to face and not over the telephone.• There was a mixed response to whether the parents should be told the genotype (assuming the CF centre knew), and thus the CF diagnosis before the confirmatory sweat test was carried out.


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