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CAH

Patients Rights

Below are some standard human rights that are recommended for implementation where CAH Patients and Individuals are concerned. For more information see the page on Standards of Treatment and Monitoring.

Treatment of CAH should be of a level of standard that is adequate bearing the current knowledge's available at the time and taking into account also the parents of patients wishes or preferences after fully educating and exploring all options themselves and answering any questions that they may have about such before they embark on any treatment available and surrounding CAH other than surgery. Those standards are outlined in the section on Standards of Treatment and Monitoring.

Genital surgery should not be performed without informed consent of the patient. For example it would be performed less for appearances sake and more out of an urgent medical need. This means cosmetic genital surgery performed on infants, with no evidence that the surgery is necessary, and evidence that it could be damaging. This can also be extended to the general medical treatment of CAH and any changes made to such must be after educating the parent or patient fully about all the side effects or implications that can occur. For instance, it would be inappropriate to advise parents that their child will never have side effects of steroids and more in place to advise that if treatment is carefully monitored that the side effects are less likely.

There should be no secrecy around a child's medical treatment or with holding of information on surgery or the reasons for such. Details of such surgery if medically necessary should be made available to the parents. This includes the possible long term damaging effects on sexual function if such surgery is performed. This also includes secrecy about the fact that the genitalia may have been ambiguous at birth or secrecy that the genitalia were operated on in infancy for adult children also. Full medical details of such surgery should be made available to an adult with CAH if requested from either medical staff or parent/guardian at anytime.

No surgery should be performed without informed consent unless it is deemed urgent or life saving. Informed consent means without the full understanding of the patient for whom the surgery is to be performed upon knowing in full exactly what the risks of the surgery entail and also the long-term risks of such as outlined above.Surgery should be performed on a young child or baby for example if their health is at risk or their psychological health was at risk. Genital surgery performed without informed consent of patient as is done as a child for more of a sociological acceptance than real medical need is not respecting a child's rights. This is cosmetic genital surgery performed on infants, with no evidence that the surgery is necessary, when there is now strong evidence to suggest that it can be damaging.

Not taking into consideration the potential damage that may have been caused by either surgery (i.e. loss of sensation due to cutting into genital tissue) and also treatment of CAH without due care and attention, (i.e. lack of careful monitoring, over treatment and inefficient control of CAH etc) which was not discussed with the parents and patient. There is clear evidence that infant vaginal surgery has poor results and 85% babies will need further invasive surgery. This will cause an increase possibility of scar tissue. Also, often a second operation is needed to make corrections after the first lot of surgery anyway. These facts should be discussed with the child's parents in full or the child themselves before embarking upon such surgery for any other reason other than medical urgency due to life threatening problem or psychological distress for the patient.

Parents and CAH patients should be given all the facts and implications of early surgery/surgery and general medical treatment for CAH. Vaginal reconstruction surgery is rarely medically necessary until puberty but may be required before start of menstruation. Parents/patients should also be educated fully about the side effects of steroids or educated with regards to the importance of regular monitoring to ensure that the child has quality treatment and all opportunity to reasonable standards of health and growth potential.

Treatment is to be based around current International recommended standards as put forth by any of the qualified Pediatric Endocrinologists that specialize in CAH. Those are outlined in the article in Standards or Treatment and Monitoring. Surgery should not be performed by medics upon the request of parents for cosmetic reasons as it may cause damage to normal sexual function of the child in later life.

Access to CAH specialists in the field of medicine should be fully available for patients at parents or the patients request at anytime. Also within the field of Intersex Society if requested at any point by the patient or parent of a CAH child.

Full access should be made available to patients of surgeons who have a high level of experience also of Intersex surgery. It is inevitable that otherwise any surgery performed is more likelyto have a very poor outcome if done by a surgeon who is not familiar with such.

Parents should not be guided to have their child undergo early surgery by medics and family.Patients can receive sub standard care due to the physician not being fully qualified or experienced in treating CAH on any level and so therefore it is recommended that only a Paediatric Endo familiar with CAH. That if this is not possible, the patient should be seenby a visiting one at least twice per year and that the regular physician caring for the child should make NO changes to a child's medication unless he is fully qualified to do so or has consulted the visiting Paediatric Endocrinologist. Children should be monitored frequently and not more than three monthly apart under any circumstances since problems occurring can be effective and irreversible and therefore there is a need to cut down the time of possible exposure to any damaging effects of over treatment or under treatment. Blood tests should be extensive and as per the article Standards or Treatmentand Monitoring.

Sufficient psychological support must be made available for any child or individuals with CAH whom are at risk due to depression. This can be caused by under or over treatment, psychological causes can stem also from early unsuccessful surgery or childhood exams. Other medical conditions such as osteoporosis or weight gain may also need to be included within such support due to over treatment in the past or present. Also within that list should be included a low self-esteem due to weight gain and short stature.

Psychological support is essential although it is not widely available. Psychological support for parents and families will be even more important if families are to opt not to have surgery for their child as they will need great help with bringing up a severely virilized girl until she is old enough to make her own decisions about surgery. There is no information available about the psychological effects of not having surgery either. Also information is very scant with regards to long term side-effects regarding over treatment and under treatment and it's affects on fertility, general health and self esteem for both sexes. Under treatment and over treatment can also cause depression or changed mood states and should also be taken into consideration by medical professionals when treating patients with CAH.

Recognizing that there is little to no information on long-term results of treatment (surgery AND medical treatment) and that research is necessary and greater access to funding for this is essential. Intersex should not be held against you in life and work. Treatment should be based relevant available at the time. Patients and parents of CAH children should be made aware of the possibility of further exposure to androgens throughout growth and childhood and Doctors should make ALL attempts to avoid such within the description above about standards or monitoring and treatment.As this often causes further masculinization and behavioural problems for both boys and girls then it is important for all Doctors to also note here that feeling it is acceptable for boysto be exposed to excess androgens is wrong and damaging and can severely affect a child's psychological development.

Religions should accept Intersex people not shun, castigate, ignore.

There is a general lack of awareness of long term, life long steroid effects that can cause osteoporosis, weight gain, high blood pressure, headaches, eye problems, fertility problems etc. It is recommended that the Specialist be responsible for educating the family GP with regards to CAH and about medication increases during illness. Many GP's are not made aware of this and often fail to give the right advice when asked. This is to the detriment of a CAH child or patient who often should be receiving increased doses of steroid to help recovery.

Parents/children/patients and medics should be educated fully with regards to Intersex Conditions otherwise this can make it difficult for society to accept Intersex. Intersex people are often seen as 'freaky' and made to feel outcast from society.

All families who have been affected by CAH must have full access to genetic counselling and testing to determine the type of CAH and carrier status when requested. Such tests are not widely available and this can cause doubt about diagnosis or unnecessary distress.

Medical staff must not perform any un-consented photography, as it has commonly been known in the past for such to happen as the Intersex conditions are seen as a fascinating phenomenon, sometimes with the patient being made to stand naked against a wall - which breaks the fundamental rules of medicine - first do no harm, as this is immensely damaging psychologically.

There has also been in the past the temptation for doctors to submit patients to unnecessary tests, investigations and photographs, without telling them that this is not necessary for the management of their condition, but is purely for the doctors own interest or research, again because CAH or Intersex which is a fascinating condition for doctors.

Testing within and around CAH to effectively monitor a child's growth should not be reduced or cut back unless there is proper medical evidence that such is ineffective or good sound evidence to suggest so. For example at present some Doctors will run testings for many different hormone levels within the blood serum such as ACTH, Cortisol, Electrolytes, Renin, 17 Hydroxyprogesterone, Testosterone, Androstenedione etc and this was standard practice for many years. However some have recently chosen to reduce testing to just one ofthe above on many occasions-ie.e 17 Hydroxyprogesterone at the cost ofnot deriving fully the information needed about the child's hormone levels at the time of that blood test. This is in despite of the fact that many Doctors continue to perform all the above tests above. There are no valid medical studies done so far that denounce any of the above blood tests as unnecessary in relation to monitoring of Congenital Adrenal Hyperplasia. They a re ALL recommended three monthly with the exception of one tests which is Renin which it is said may be done at six monthly intervals.

Many blood tests are vital for helping to determine the results of other's when read along side each other. Often elevated 17 OHP may be temporary for example and normal levels of Androstenedione may confirm this if it is taken at the same time as 17 OHP is taken off. On the other hand if Androstenedione is elevated too, one certainly needs the results of the Testosterone to see if there is a real problem with loss of control. When running blood tests we must remember that it helps to have ALL drawn off at the same time so that we can the reliability of other blood tests we may be taking. Eliminating vital tests for a child or reducing their frequency of monitoring is innapropriate given what can happen for a small child in such circumstances, i.e. accelerated gorwth (which is irreversible) and also precocious puberty. Extremes in hormones can also affect a child's emotional well being and mental alertness and ability. Any tests that are deemed no longer needed in Congenital Adrenal Hyperplasia without proper medical support and study is unacceptable.

Please Note:

Blood tests should only be performed on children by medical staff that are fully experiencedwith such. ALL efforts should be made to make the child comfortable including numbing the skin before blood tests if this is necessary due to a fractious child. Always talk to thechild and use good distraction techniques. Make every effort to reward the child after any blood draws.

If any aspects of monitoring changed within the treatment of CAH, it is recommended thatDoctors make all efforts to fully examine such new treatment and evaluate it's benefit's carefully against the risks involved to the child. If a patient requests such or the parents of a child and the treatment are offered such it should be with full knowledge of any possible side-effects and how the treatment will work for their child or the individual. This may also concern new testing or monitoring recommendations.If such treatment is offered to individuals or parents for their CAH child, then every effort mustbe made to fully explain the benefits or down sides as they are know at the time and as they arise during treatment. Also, if such should be brought to your attention either by CAH patient or parents with a child, then should be noted and any such changes should be evaluated once again to determine if the benefits again outweigh the risks. Due to the rarity of CAH, and lack of research or infrequent research it is important that such is fully made available to any patient or parent of CAH child if requested at anytime.Especially if such has been broached and studied within ANY official medical abstract either abroad or in country of treatment.

Never under estimate a patients or parents ability to take on board certain knowledges about their CAHor their child's CAH. CAH may be a complex condition but individuals and parent's are capable of researching and this is not unlike any other medical condtion in that respect. Patients have a right to know in full depth about their medical condition, the medicines they are taking, and possible side-effects that can occur with treatment. Doctor's may not have time to research the same as a parent or individual may and therefore it is not unreasonable to find that some patients become very knowledgeable of CAH in a short space of time. Patients may compare standards of treatment with other patients elsewhere ad be listened to if they feel that their treatment or child''s treatment could be improved upon in any way.It is a patient's right to effective updated treatment and for this to be provided by an expert/fully qualified Paediatric Endocrinologist or Endocrinologist whom has experience in treating CAH. Such should be made available to all patients and this must bethe goal if treatment for all children or individuals with CAH is to improve Internationally.