Draft UK AIS Patients' Charter

A draft UK AIS Patients' Charter, drawn up with the help of paediatric endocrinologist Dr. Richard Stanhope, was published in ALIAS No. 10, Winter 1997. He suggests that it is "to inform patients what they are entitled to, and to enable them to ask for a second opinion if this does not happen" .

Androgen Insensitivity Syndrome (AIS) is a rare, complex disorder, which requires both sensitive and complicated medical and psychological management throughout life. We consider that all patients with AIS should be entitled to the following:

1. Specialist Centres should develop a multidisciplinary team which includes endocrinology, urology/gynaecology, psychology/psychiatry. The surgical specialists involved should have a special interest in the management of intersex surgery and experience with vaginoplasties, and support for non-surgical vaginal lengthening procedures.
   
2. The patient should be under the care of a paediatric or adult endocrinologist who has experience of the management of AIS. With the rarity of this condition, there will only be a few specialists in the UK who would have the appropriate experience. However, care may be on a shared basis with review by the specialist at infrequent intervals.
   
3. There should be a clinical psychologist/psychiatrist available with experience in the management of intersex disorders. This person should be part of the multidisciplinary team mentioned in above. All parents and patients should be offered an initial psychological counselling service (together and separately) and then be able to take up the option of longer-term involvement should they wish. Psychological support should be seen as a long-term goal.
   
4. Patients (at least those over 16) should have access to all medical information about themselves. Under the age of 16, the information given will be on joint discussions between the parents and the clinician, and probably with the help of the clinical psychologist.
   
5. Patients/parents should be informed of the AIS Support Group and any other appropriate support groups.
   
6. AIS adults who have had information hidden from them have a right to full disclosure by the relevant clinicians who have been responsible for their care, and the right to examine their medical notes, hopefully in the presence of the clinicians involved. Professional psychological support should also be available during this time.
   
7. Patients should be able to read about their condition/themselves in medical records, scientific papers and textbooks without encountering stigmatizing and out-of-date terminology (e.g. testicular feminization syndrome).
   
8. There should be access to appropriate genetic counselling and molecular biology services for parents and relatives (e.g. carrier status testing for XX siblings and maternal XX relatives).
   
9. The patient will require oestrogen supplementation from the age of 7-8 years, if the diagnosis has been made and a gonadectomy performed. The patient will require review by an endocrine specialist.
   
10. Patients should have access to bone mineral density measurements when this is clinically indicated.