EVALUATION OF THE ESTABLISHMENT OF A CYSTIC FIBROSIS NURSE SPECIALIST POST IN A REMOTE & RURAL AREA

Sanders, S.A. Raigmore Hospital, Inverness, United Kingdom

In August 1998, a new post of Cystic Fibrosis Clinical Nurse Specialist (CFCNS) was established for the Highlands, Western Isles and West Grampian in Scotland.  The area is 10,325 square miles.  The establishment of the post presented challenges.  Many families live in remote areas with poor transport links which creates strong feelings of isolation. 20 children and 8 adults with CF live in the area.  The CFCNS offers visits to all families at a frequency suited to their needs.  This is generally monthly, although some require more intensive input during events/crises when visits may be increased lo weekly or even daily dependant on the needs of the rest of the service.  During visits, discussions occur about all aspects of CF care and management and providing the opportunity to air anxieties.  The CFCNS is involved in the education of staff from health, social services and education.  The CFCNS also liases with the National CF Centres with whom several patients have shared care.  One year after the establishment of the post, the CFCNS carried out a postal patient satisfaction survey which was "purpose designed" with the aid of the Department of Quality & Nursing (DQN) and based on similar surveys. 44 questionnaires were sent out, one to each patient over 10 with CF and one to each parent/carer/partner.  A response rate of 64% was achieved (questionnaires returned anonymously to the DQN for analysis). 46% of respondents were CF patients, 54% parents or partners. 37% of respondents male, 63% female.  The main findings were: 86% felt communication with the hospital team bad improved since the introduction of the CFCNS, 50% felt it had improved communications with the GP. 89% felt the CFCNS had improved the co-ordination of care and 82% noted improvements in continuity of care. 93% of respondents felt the frequency of home visiting was right, 89% felt visits were the right length. 86% indicated they found visits useful.  The questionnaire also addressed knowledge of CF, the organisation of clinics, home intravenous antibiotic therapy and telephone contacts.  This was to aid the CFCNS in developing the post.  These results support the evidence that the CFCNS is an important and valuable member of the CF team and illustrate how this role can be effective when adapted to remote and rural environments.  The services of a CFCNS are appreciated with regard to continuity and organisation of care, and reducing the feelings of isolation.

UK NATIONAL CONSENSUS STANDARDS FOR THE NURSING MANAGEMENT OF CYSTIC FIBROSIS

Currently there no national guidelines for the nursing management of CF in the UK, although recommendations for CF care have been made.  In the light of these recommendations and the future introduction of centre accreditation by the Cystic Fibrosis Trust, the UK CF Nurse Specialist Group undertook lo compile national standards.  Aim: To produce a document useful to nurses working with people with CF, both in hospital and the community and in paediatrics and adults.  Method: Volunteers were asked to join a working party from the UK CF Nurse Specialist Group.  The working party had to be representative of large and small centres, paediatric and adult nurses and from a wide geographical area of the country to obtain a true consensus.  Four one day meetings were organised lo plan outline and content.  Two members of the group collated this information and sent it out for agreement prior to each meeting.  Results: The final document offers evidence based recommendations for best practice with formal standards of care and audit tools.  Recommendations cover: diagnosis, inpatient and out- patient care, community care, adolescence and adulthood, and advanced disease with terminal care.  Standards include: diagnosis, inpatient and outpatient care, community care, nebuliser care, central venous access, self administration of intravenous therapy, enteral feeding, oxygen therapy, CF related diabetes, transfer and transition from paediatric to adult care, terminal care and symptom management.  Conclusion: The document is not a textbook on CF, or a collection of detailed careplans and protocols and the authors are aware of it's limitations.  An introduction suggests that the content be used within the parameters of advocacy, clinical management, education, support, advice and research.  The published document will be sent to every nurse working in CF in the UK.  It is hoped that with clear guidelines nurses will feel able to provide an efficient, evidence based service to their patients and that the document will serve as an aid to the