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

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2 Specialties Clinical geneticsPatient support groupsClose links exist <strong>with</strong> many relevant patient groups,and clinical geneticists are well represented amongtheir expert advisers. Close links also exist <strong>with</strong> theGenetic Alliance (umbrella organisation <strong>of</strong> laysupport groups).Availability <strong>of</strong> clinical records/resultsRecords are accessible under the Data Protection Act1998, <strong>with</strong> care taken not to disclose information heldabout other family membersRole <strong>of</strong> expert patientThis is fully acknowledged; <strong>with</strong> mutual consent,<strong>patients</strong> may be put in touch <strong>with</strong> others similarlyaffected.Communication <strong>with</strong> <strong>patients</strong>The aim is to be prompt, clear and sensitive.4 Interspecialty and interdisciplinary liaisonMultidisciplinary team <strong>working</strong>The clinical genetics service links <strong>with</strong> GCs, who havea background in nursing or science <strong>with</strong> specialisttraining. The Association <strong>of</strong> Genetic Nurses andCounsellors (AGNC) is registered <strong>with</strong> the HealthPr<strong>of</strong>essions Council 10 and there is a very closeintegrated <strong>working</strong> practice between clinical geneticistsand GCs (see report 11 ). There is also close liaison <strong>with</strong>laboratory scientists – biochemical, molecular andcytogeneticists – <strong>with</strong> routine combined meetings.Working <strong>with</strong> other specialtiesClinical geneticists are valued members <strong>of</strong> 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 reports<strong>of</strong> the Clinical Genetics Society (CGS) <strong>with</strong> theAssociation <strong>of</strong> British Neurologists 12 and the <strong>Royal</strong><strong>College</strong> <strong>of</strong> Obstetricians and Gynaecologists 13 highlightthe importance <strong>of</strong> joint <strong>working</strong> practices.Working <strong>with</strong> GPs and GPs <strong>with</strong> a specialinterest (GPwSIs)Referral guidelines are available to assist GPs in clinicalmanagement, eg for family history <strong>of</strong> 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 <strong>with</strong> white paper funding 4 andclinical geneticists <strong>of</strong>ten 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 <strong>of</strong> Britain group (six RGCs)meets three times a year annual national conferences – CGS, AGNC, CancerGenetics Group and British Society <strong>of</strong> HumanGenetics.5 Delivering a high-quality serviceQuality standards for clinical genetic services includethe following: applying principles <strong>of</strong> ‘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 <strong>of</strong> an RGC, <strong>with</strong> access tospecialised genetic laboratories and academicuniversity departments <strong>of</strong> medical genetics (seereference 17 for requisite facilities).Maintaining and improving the quality <strong>of</strong> careThe following activities help maintain and improve thequality <strong>of</strong> care: patient satisfaction surveys and local, regional andnational auditsC○ <strong>Royal</strong> <strong>College</strong> <strong>of</strong> Physicians 2013 61

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