Meeting between experts: evaluation of the first UK forum for lay and professional experts in intersex.
At present the clinical management of intersex is in turmoil. The policy of non-disclosure of diagnosis is widespread and cosmetic genital surgery is routinely performed on infants throughout the world. Some clinicians feel such practices are in the interest of the intersex child and the family, but some intersex adults are calling for a moratorium on sex assignment genital surgery. These widely opposing views have led to distrust between groups. One way to begin to address these critical issues is to facilitate dialogue with equal input from clinicians and intersex people and families. Clinicians are experts by training, but patients and families are experts through lived experiences. Our paper reports the rationale, process and outcome of the first UK forum bringing together these different experts to address some of the most complex issues in clinical services. In communicating our experiences, we hope that it will provide a useful reference point for those seeking similar service-user/provider collaboration in other areas of medicine.
Department of Obstetrics and Gynaecology, Elizabeth Garrett Anderson Hospital, University College Hospitals, Huntley Street, London WC1 6DH, UK. sarah.creighton@uclh.org
Sarah M
SM
Creighton
Catherine L
CL
Minto
Lih Mei
LM
Liao
Julie
J
Alderson
Margaret
M
Simmonds
D001291:Attitude of Health Personnel; D001294:Attitude to Health; D003245:Consensus Statements as Topic; D003299:Cooperative Behavior; D012734:Disorders of Sex Development / Q000175:diagnosis / Q000523:psychology / Q000628:therapy; D019317:Evidence-Based Medicine / Q000592:standards; D005190:Family / Q000523:psychology; D005783:Gender Identity; D006801:Humans; D007223:Infant; D020380:Needs Assessment; D010043:Outcome and Process Assessment, Health Care; D018579:Patient Selection; D017410:Practice Guidelines as Topic / Q000592:standards; D015397:Program Evaluation; D019651:Plastic Surgery Procedures / Q000592:standards; D011795:Surveys and Questionnaires; D014342:Truth Disclosure; D006113:United Kingdom