Clinical nurse specialists - children
Dave Winch - lead nurse
We work with children and families providing ongoing support for the management of cystic fibrosis, providing a personalised service across inpatient, outpatient and care at home, in partnership with other health professionals.
The clinical nurse specialists (CNSs) in children’s cystic fibrosis care work closely with hospital and community teams. Our specialist service promotes continuity of care for around 320 children, young people and their families from diagnosis through newborn screening to transition into adult CF services.
We provide clinical monitoring, education, support and advocacy for patients in hospital, at outpatient clinics, and in the community both at home and at school.
Dr Susan Madge
Clinical nurse specialists - adult
The adult specialist nurse team provide on-going support and a personalised service to all adult patients across inpatient and outpatient services and through outreach services in the community and at home.
- Ward-based patient support, education and advice
- Teaching and educating patients to flush their own Portacaths
- Co-ordinating admissions - Foulis (inpatient) and Lind (day case)
- Sputum surveillance
- Lung transplant liaison with co-ordinators at Harefield Hospital, including patient education, test follow-ups
- Co-ordination of end of life care liaising with the palliative care team, local hospices, Macmillan nurses and primary care services
- Education of ward staff
- Nurse-led annual review service, including clinical assessment, treatment decision making, non-medical prescribing, arranging investigations, coordination of MDT, GP letters and preparing reports
- Co-ordination of transition from paediatric to adult services
- Psychosocial and practical support
- Running the adult sweat testing clinic
- Managing the home IV service
- Co-ordination of CF-related diabetes and continuous glucose monitoring (CGM) services, including patient education (i.e. how to inject, care of and use of insulin, how to record blood sugars etc.)
- Telephone assessments and non-medical prescribing
In addition, we provide comprehensive outreach services to patients at home including:
- Weekly telephone / Skype clinics
- Liaising with community healthcare teams, including GPs
- Working with physiotherapists to provide home, workplace and college outreach (post-admission follow-up, monitoring home IV therapy, end of life, pre/post natal care, clinical assessment, patient education and bereavement visits
- Co-ordinating monthly Portacath flushes
- Patient letters regarding housing, DLA, travel, college etc