NAMI初体验

此NAMI不是彼“纳米”，不是那个最近很时髦的纳米技术。我说的这个NAMI是National Alliance on Mental Illness，美国的全国精神疾患联盟。NAMI在1979年成立时叫National Alliance for the Mentally Ill，是一个民间的草根组织，主要由精神疾患的家属组成，起支持，教育和为精神疾患患者宣传的作用。

美国有不少类似的民间组织，比如乳腺癌的粉红丝带组织（Pink Ribbon），酒精成瘾者的AA Meeting等。我知道NAMI组织已经有几年了，有时候病人问道有什么民间组织可以加入，得到支持和教育时我也会告诉他们有这么一个NAMI组织。但是，NAMI组织到底是什么样子，我这个星期才第一次接触到。

我有一个同事告诉我他有时候去当地的NAMI组织参加病人家属的教育活动，建议我也去，给当地的NAMI组织一些支持，也对当地有精神疾患的病人和他们的家属有帮助。我就联系了本市NAMI的组织者，他们让我有一天晚上去参加一个家属教育的会议。在会上，这些病人家属会提出一些问题，主要是关于药物方面的问题。

一进屋，看到有近二十位中年人围坐在那里，后来知道他们都有有精神疾患的孩子，而且这些孩子大部分都是刚刚成年。他们早已得知有一个精神科医生要来解答问题，所以都准备好了问题。有人问锂制剂的副作用以及需要监测什么指标，有人问抑郁症的疗程，也有人问一些政策相关的问题。

比如，一个家属提出，她的孩子已经满十八岁了，有躁郁症，有时候表现为躁狂症，不愿意接受治疗。她觉得病人应该住院，但是医生说病人目前还没有构成对本人或他人即刻的危险，所以如果病人不愿意住院就无法把病人收住院。她觉得这是美国的精神疾患的医疗系统不好，应该改进。

这个确实是目前困扰着很多病人家属和精神科医生的一个问题。对比一下，在中国，经常是家属大包大揽。而在美国，只要病人是个成年人，而且有自己做决定的能力，病人就自己做决定，这是病人的权利。 比如，被诊断得了癌症，在美国，医生先跟病人谈，然后问病人要不要家属也参加讨论。而在中国，如果有人被诊断得了癌症，医生一般先瞒着病人跟家属商量，因为在中国强调的是不能让病人精神受到刺激，而不是病人的隐私权和自主决定权。

如果在中国有病人有严重的精神疾患，一般家属会把病人送到精神病院，如果医生觉得病人应该住院，家属签字病人就住院了，病人抗议也没有用。而在美国，对于已经成年的严重精神疾患患者，基本没有家属太多介入意见的余地。

在美国，如果病人不构成对本人或他人即刻的危险，而且有自主做决定的能力（有精神疾患不等于一定就失去做决定的能力），则尊重病人的意见。如果病人要自杀或者要杀人，或者比如患有晚期老年痴呆症不能生活自立并且失去自主做决定的能力，则由医生申请（最终由法官批准），可以违背病人意愿将病人收住院。这种情况下，家属可以提供信息帮助医生做决定，但是家属没有替病人做决定的权力。

下面我转帖的一篇英文文字来自NAMI网站，正好讲到这种情况。可以看出，美国的精神疾患医疗政策还有不少需要改进的地方。据我所知，中国的精神医学和相关政策，更不够完善，人们都精神疾患患者有更多的成见，需要更多的努力去改进。

在NAMI会议上见到的这些病人家属跟我以前见到的病人家属比，显得对精神疾患和药物的了解比较多，问的问题都比较到位。另外，他们显然对他们家里有精神疾患的孩子非常关心。我所知道的那两个本市NAMI组织的组织者也是精神疾患病人的母亲。另外，这些人经常挂在嘴边的一个词就是“Advocate”（宣传），他们希望通过自己的努力，尽量改善精神疾患的相关政策。

NAMI组织的参加者希望能够改变人们对精神疾患患者的成见，让这些患者能够尽量远离医院，尽量能过接近正常人的生活，不给自己，家人和其他人带来不必要的麻烦。即使是一个普通公民，不是我这样的专业工作者，其实也应该支持NAMI这样的组织。 这些精神疾患患者急性发病时，住院所花费的费用和资源远高于门诊治疗的费用。如果没有得到及时的治疗，他们还可能对自己，家人和社会带来的巨大损失。如果能改善他们平时能得到的治疗，让他们的症状得到很好的控制，则可以节省社会的医疗资源，极少精神疾患患者急性发病给社会带来的损失。

我还没有听到中国有类似NAMI的组织存在。中国有不少健康网站，其质量参次不齐，有些网站提供的“健康”知识是不够准确的，还有不少网站打着健康的旗号大作所谓保健品的广告。

最后再提一句，NAMI组织在近些年被发现其资金来源有一半以上来自制药公司，为此，已经有人开始对NAMI组织进行调查，可见这些健康相关的组织在美国会得到公众的监控，以保证它们正确的方向。在公众监控这一方面，中国真的应该很惭愧，连中国红十字会都爆出那么多贪污的丑闻。

www.nami.com

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We don’t know how to help our son

Our 30 year old son is bipolar. He was diagnosed in May, 2007, when he had his first manic episode. We run a small business in Fort Worth, and have never been able to afford health insurance for our family. The only option we had to get our son to a safe place when he was manic was to go to John Peter Smith Hospital, which is so overwhelmed with patients that they usually do not have a place available for him for longer than 24 hours or so in Psyche ER (unless he is considered ‘a danger to himself or others’) . We finally (after several attempts to get him admitted) had to get a judge to sign a commitment order so the police picked him up and he was eventually committed to the state hospital.

This scenario has cyclically repeated itself over the years. Once, when he was in the state hospital in Wichita Falls, the social worker applied for disability, and he qualified. He has been getting disability for over 3 years now, and that means that last summer he also was able to receive medicare.

Since he had insurance last fall, as soon as he realized a manic episode was coming on, he was able to get admitted to a private facility, and was admitted to Millwood, Sundance and Springwood Hospitals in Texas and several hospitals in other states. (Btw, before last fall, he was attending classes at TCC and making very good grades, but has not recovered enough during this last year to be motivated to go back to school.)

When he was admitted to Millwood and Sundance, they immediately took him off the medications that he had been on (which was basically the same for all the years since first being diagnosed) and put him on a different drug, to which he did not respond. They discharged him anyway, however, after a certain number of days — 10 or 11 — because ‘medicare doesn’t like it for him to be an inpatient longer than that.’

Each time, he got worse after being hospitalized, the mania escalated into psychosis, and it was up to us to figure out what to do, because the hospital would not readmit him, until finally the episode was over, with him back on the same medication that he had been on prior to becoming manic.

During the most recent manic episode this spring, he connected with some ‘friends’ from his past, and got some marijuana (his ‘drug of choice’ when he self-medicated in the past) and another drug from them. When he was walking along the street, with these drugs in his backpack, and saw a police car, he turned himself in to them. He believed this to be the ‘right thing’ to do, and, since I was unable to come pick him up when the policeman called me, he was taken to jail and is now dealing with the consequences of being charged with drug possession. He may not be able to get a job, with this on his record. He was asking for help. He was not in his right mind when this happened, but the help he needed was not available. He was in the middle of a manic episode (he was hospitalized both prior to the incident and for several weeks after). He is being penalized as a result of his illness.

He was an MHMR patient from the time he was first diagnosed and hospitalized until recently. He always takes his medication and does not use any kind of drugs or alcohol between episodes. His doctor at MHMR refused to take ‘walk in’ patients, so if our son felt a manic episode coming on, he was told to go to JPS, which, as I said above, was not able to treat him adequately unless he became ‘a danger to himself or others.’ This aspect of the mental health system did not provide support or planning. This is most probably due to lack of funding and being overwhelmed with patients.

The police at the Arlington City Jail told us that 25% of their inmates would not be there if the mental health care system was adequate. I have seen this same figure in stories about jails across the country.

The private system also does not provide adequate care and support so far, because no one even wants to take his history from us!

We are all in ‘waiting’ mode again now, between episodes, because we do not know where to turn for help. From everything I read, the mental health care system all over the country is the same.

Every time I hear on the news that there has been a tragic shooting and that the shooter is mentally ill, I can’t help but think that this person most likely asked for help, like our son does each time, before it got to the point where they took a gun to other people and then (usually) to themselves. A person in their right mind does not do these things. And, most mentally ill people want help at some point in their illness. If help was readily available to them at that point, our whole society would benefit.e are all in ‘waiting’ mode again now, between episodes, because we do not know where to turn for help. From everything I read, the mental health care system all over the country is the same.

Every time I hear on the news that there has been a tragic shooting and that the shooter is mentally ill, I can’t help but think that this person most likely asked for help, like our son does each time, before it got to the point where they took a gun to other people and then (usually) to themselves. A person in their right mind does not do these things. And, most mentally ill people want help at some point in their illness. If help was readily available to them at that point, our whole society would benefit.