A descriptive study of UK cancer genetics services: an emerging clinical response to the new genetics

The objective was to describe NHS cancer genetic counselling services and c ompare UK regions. The study design was a cross-sectional study over 4 week s and attendee survey. The setting was 22 of the 24 regional cancer genetic s services in the UK NHS. Participants were individuals aged over 18 attend ing clinics at these services. Outcome measures were staff levels. referral rates. consultation rates, follow-up plans, waiting time. There were only 11 dedicated cancer geneticists across the 22 centres. Referrals were mainl y concerned with breast (63%) bowel (18%) and ovarian (12%) cancers. Only 7 % of referrals were for men and 3% were for individuals from ethnic minorit ies. Referral rates varied from 76 to 410 per million per annum across the regions. Median waiting time for an initial appointment was 19 weeks, rangi ng across regions from 4 to 53 weeks. Individuals at population-level genet ic risk accounted for 27% of consultations (range 0%, 58%). Shortfalls in c ancer genetics staff and in the provision of genetic testing and cancer sur veillance have resulted in large regional variations in access to care. Ini tiatives to disseminate referral and management guidelines to cancer units and primary care should be adequately resourced so that clinical genetics t eams can focus on the genetic testing and management of high-risk families. (C) 2001 Cancer Research Campaign hftp//www.bjcancer.com.