Jan, 2001. Shared care [online]. Seacroft and St James's University Hospitals, Leeds, UK. Available from http://www.cysticfibrosismedicine.com

Patients with CF should be known to, and have access to, specialist advice from a CF unit. This will be essential as multicentre trials of more specific treatments are started, e.g., gene replacement therapy. The recent Clinical Guidelines for Cystic Fibrosis Care of the CF Trust emphasise the need for 'shared care' for every patient between the major specialist CF centre and the local hospital. This can be achieved by annual assessments at the specialist centre, alternate visits between the local hospital and the specialised centre, or joint clinics with one or more members of the specialist team attending the local hospital.

All patients living within reasonable distance of a specialised CF unit should attend there for all their CF care and advice. Patients living some distance from the CF Centre should have all their care in the Centre if they wish but they may prefer some form of shared care, as suggested in the recent guidelines. The Comprehensive Assessment at the CF Unit each year or so, with the rest of the care being given at the local hospital, is one way of doing this, and works well for many patients and most local consultants (Littlewood, 1993). Everyone who has CF, however well they may appear to be, should have a sweat test at a specialised CF unit to confirm the diagnosis if they do not have two recognised CF mutations. They should have an early Comprehensive Assessment with a detailed review by key members of the CF unit. As a minimum they should be seen at the CF unit at any time their progress is giving rise to concern at the local hospital and a follow-up Assessment every year. Where there is increasing experience in the treatment of CF at the local hospital, a combined clinic with the consultant from the CF unit and the local consultant is replacing some of these annual follow up assessments at the CF Centre. The assessment investigations are performed at the local hospital and the results reviewed at the combined clinic.

References

Littlewood JM. Value of comprehensive assessment and investigation in the management of cystic fibrosis. In: Escobar H, Basquero L, Suarez L: Clinical ecology of cystic fibrosis. Elsevier,1993: 181-187

Littlewood JM, Conway SP, Page RL. Cystic Fibrosis in Leeds. Editorial. Thorax 1990; 46: 387-388

Littlewood JM, Firth J, Taylor J, Simmonds EJ. The Paediatric Day Unit. A Base for the Regional Cystic Fibrosis Service. CF News April/May 1990, pp10-14