Consultant physicians working with patients - Royal College of ...

2 Specialties Clinical geneticsPatient support groupsClose links exist with many relevant patient groups,and clinical geneticists are well represented amongtheir expert advisers. Close links also exist with theGenetic Alliance (umbrella organisation of laysupport groups).Availability of clinical records/resultsRecords are accessible under the Data Protection Act1998, with care taken not to disclose information heldabout other family membersRole of expert patientThis is fully acknowledged; with mutual consent,patients may be put in touch with others similarlyaffected.Communication with patientsThe aim is to be prompt, clear and sensitive.4 Interspecialty and interdisciplinary liaisonMultidisciplinary team workingThe clinical genetics service links with GCs, who havea background in nursing or science with specialisttraining. The Association of Genetic Nurses andCounsellors (AGNC) is registered with the HealthProfessions Council 10 and there is a very closeintegrated working practice between clinical geneticistsand GCs (see report 11 ). There is also close liaison withlaboratory scientists – biochemical, molecular andcytogeneticists – with routine combined meetings.Working with other specialtiesClinical geneticists are valued members of clinicalnetworks, eg cancer/oncology, fetal medicine andcardiology. Advice is provided on familial/geneticdiseases and genetic testing. There are combined/jointclinics, eg ophthalmic, prenatal (fetal medicine) andcardiac genetics (eg Marfan syndrome). Joint reportsof the Clinical Genetics Society (CGS) with theAssociation of British Neurologists 12 and the RoyalCollege of Obstetricians and Gynaecologists 13 highlightthe importance of joint working practices.Working with GPs and GPs with a specialinterest (GPwSIs)Referral guidelines are available to assist GPs in clinicalmanagement, eg for family history of common cancers.These may be national guidelines, eg National Institutefor Health and Care Excellence (NICE) guideline onfamilial breast cancer, or local guidelines. Some GPwSIswere established with white paper funding 4 andclinical geneticists often teach at GP study days.Other specialty activity beyond local servicesNational forums exist to discuss difficult diagnostic,ethical or management problems. These have regularmeetings and include the following: UK Dysmorphology club – quarterly meetings;similar regional events GenEthics club (informal forum to discuss ethicallydifficult cases) – meets three times a year to discussdifficult ethical cases and issues smaller special interest group meetings, eg paediatricneurogenetics multicentre regional meetings for audit andtraining, eg South West of Britain group (six RGCs)meets three times a year annual national conferences – CGS, AGNC, CancerGenetics Group and British Society of HumanGenetics.5 Delivering a high-quality serviceQuality standards for clinical genetic services includethe following: applying principles of ‘good medical practice’ 14 toclinical genetics and giving time to clinicalgovernance giving attention to detail and accuracy in diagnosis –the key to high-quality genetic counselling adherence to quality standards documents 3,15 the Genetics Commissioning Advisory Group(GenCAG) have produced auditable qualitystandards for commissioning, 16 including promptpostclinic letters and response to urgent referrals,eg prenatal cases service should be part of an RGC, with access tospecialised genetic laboratories and academicuniversity departments of medical genetics (seereference 17 for requisite facilities).Maintaining and improving the quality of careThe following activities help maintain and improve thequality of care: patient satisfaction surveys and local, regional andnational auditsC○ Royal College of Physicians 2013 61