Su Madge, nurse UK
The International Nurse Specialist Group - Cystic Fibrosis (INSG-CF)
was founded at the European Cystic Fibrosis Society’s annual conference
in Berlin in 1998. The Group was started to provide a point of contact
for nurses working with children and adults with cystic fibrosis and is
committed to setting high standards of nursing practice, promoting continuing
professional education and encouraging nursing research.
The INSG-CF has established links with the medical and research community
in order to promote and provide quality nursing care for people with cystic
fibrosis. Although the term Cystic Fibrosis Clinical Nurse Specialist
is specified, the Group is in fact open to any nurse registered in their
country who is actively working with individuals with cystic fibrosis
world-wide. The objectives of the Group include:
* To set and promote high standards of nursing practice in the treatment
of persons with Cystic Fibrosis
* To promote nurses as advocates for all individuals with CF
* To promote rigorous research in nursing for patients with CF
* To disseminate information and knowledge of nursing practice in the
treatment of patients with CF
* To provide a communication network among nurses in CF care world-wide
* To advance the knowledge and understanding of CF among both medically
related professionals and lay people
* To promote continuing professional education in CF care
* To represent CF specialist nurses within CF Worldwide
* To promote and develop nursing in cystic fibrosis care as a speciality
To provide education, promote networking and to raise the profile of
CF specialist nurses, the INSG-CF holds a one day meeting during every
European CF Society annual conference. At these meetings nurses from around
the world are invited to present their work, join debates and meet colleagues.
The Group is also represented on the European CF Society (ECFS) Scientific
Committee ensuring the inclusion of symposia and workshops that cover
issues of interest to and involvement of specialist nurses. Both the one
day meetings and the involvement of specialist nurses in the European
Conference have become popular and led to an increase in attendance of
CF specialist nurses, not only from Europe but increasingly from around
the world.
Since 1999 the INSG-CF has been in the fortunate position of being able
to offer members an international travel scholarship. The Best Care Scholarship,
(supported by Chiron) aims to encourage the exchange of best practice
amongst CF centres for patient care. This scholarship gives CF specialist
nurses the opportunity to develop their ideas within the stimulating research
environment provided by CF centres around the world. CF specialist nurses
who have applied, learned more about techniques shown to improve patient
care, developed their own research expertise, exchanged knowledge with
other CF professionals and contributed to improvements in CF patient care.
Winners so far have included:
Liesbeth Verhoeven, from the Netherlands who studied
transition from paediatric to adult care. |
Lisa Semple, from Canada, who studied the developing role of a specialist
nurse. |
Christine Hockings originally from Australia who explored
difficulties with travelling for young people. |
France Paquet, from Canada who is studying aging with
CF. |
The winning applicant is invited to present their research proposal at
the INSG-CF annual meeting held in parallel with the ECFS annual conference
and then present the results at the following ECFS conference.
The INSG-CF is invited to participate at the CF Worldwide meetings and
has also become involved with a number of other initiatives. These include
writing European Guidelines on the management of CF (ECFS) and being part
of a European Union grant application for the commencement of a programme
designed to ensure dissemination of information and research findings
to all CF centres throughout Europe.
Rather than a newsletter, the INSG-CF developed a website to disseminate
information. Filippo Festini, specialist CF nurse in Florence and Secretary
of the INSG-CF, designed and maintains the website. The web site is available
to all members of the Group and contains information about the Best Care
Scholarship (currently available in German, Italian, French, Spanish and
English), abstracts and information from CF conferences, dates and venues
of upcoming conferences and meetings, CF courses, and a bulletin board.
We would like to encourage all nurses working with children and adults
to join the Group, attend the INSG-CF meetings at the European conferences
and take advantage of the Best Care Scholarship.
To join please contact Filippo Festini by email: filippo.festini @ tiscalinet.it
Editor’s Note: For more information, please
see: http://www.cfnurses.net/
In the next CFW Newsletter the Best Care Scholarship Award winner
France Paquet will write about her studies.
