The Adrenal Hyperplasia Network is working with other support groups to ensure that the treatment of CAH and other Intersex conditions is considerably improved in the UK.
In 1998 NSCAG (National Specialised Commissioning Advisory Group) a section of the UK Department of Health quietly designated a single centre to treat CAH and other Intersex conditions. The centre currently designated has a policy of non-disclosure of diagnosis to patients, hence giving rise to surgery without fully informed consent. This was done without consultation to any Intersex support group and the ignoring of the regional multidisciplinary specialist centres who have a policy of openness and patient lead treatment.
As a result of pressure from AHN, AISSG, CAHG, ROSA, CGF, GIG and many leading clinicians, Royal Colleges, Medical Societies around the UK the situation is currently under review with the support groups involved.
Below are copies of the letter's sent to NSCAG, Prime Minister, Health Ministers and the Northern Ireland Human Rights Commission.
Adrenal Hyperplasia Network Position Statements
CAH support Group UK Position Statement
Androgen Insensitivity Syndrome Support Group Position Statements
Genetic Interest Group Position Statement
Child Growth Foundation Position Statement
This Page was updated 30-Apr-2006
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