Dutch Hospitals Seclude Most Patients

According to a short article in a Dutch newspaper, psychiatric hospitals in the Netherlands seclude more patients than many other countries in Europe. According to the article, other countries’ hospital staff never leave their patients alone, while this is commonplace in Dutch seclusion practices. Indeed, I’ve often read that seclusion is the supervised placement of a person in a separate room, while in my experience, when someone is being secluded, they are never supervised.

This causes obvious risks. In 2008, a man died in an isolation room because he wasn’t being watched. Now I must say that Dutch hospitals rarely have the staffing to supervise patients one-on-one, so in that sense it is not out of unwillingness. But this should obviously change for the sake of patient safety.

Furthermore, I have stated this a million times, but an attitude shift should happen, in which isolation is no longer seen as something that will calm the patient, as is often the case now. Seclusion is often very traumatizing, and should only be used as a last resort to prevent physical harm to people.

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Thoughts on “Disability Norm” and the Push Towards Community Living

Last week, Rachel Cohen-Rotenberg of Journeys with Autism wrote a post on visibility and human worth in the disability community, which discussed the overrated emphasis on achievements within a disability context, whereby people with severe disabilities or their carers/parents are ignored or outrightly silenced. Today, guestposter Claire posted about “disability norm” and some other problems with the social model of disability as it applies to people with severe disabilities.

I am not as severely disabled as Claire’s daughter, but even I can relate to some of the problems Claire and Rachel highlight in their posts. Claire writes:

The fact of the matter is that my daughter’s needs are not supported by, nor even reflected in, Disability Norm. Because her inhibitory functions were destroyed by the stroke, she can’t stand overstimulation of any sort, be it physical or emotional. She needs to be “segregated,” to an extent, in order to be most comfortable and to function optimally. Full-inclusionary practices are at best uncomfortable and at worst unsafe. Ideological activists scream that there is nothing in between complete seclusion and full inclusion. I see many realistic options in between.

There I can relate. I have lived in the community and lived in an institution, and, though I never consciosuly chose an institution over community life, I am deciding to live in an institution for the next couple of years at least. I like the quietness and safety of institution grounds (except when there’s construction going on!). I have a need for 24-hour care some of the time – unlike Claire’s daughter, I don’t literally need 24-hour supervision, but I need someone close at any moment of the day. On the other hand, I want to have some connectedness with the “real world”, but to be honest, not because it is the non-disabled world, but because I want to be connected to people I love. You might say that, actually, I should be able to get community-based supports that suit my needs while for example living with my boyfriend. This may be what society should be like, but as long as it isn’t, is the burden on me, or on Claire and her daughter, to prove I or she can live in an inadequate community setting in order to be “allowed” teh care we need?

After all, most community living activists do not claim that people should be allowed to live in low-stimulation areas, with specialized medical equipment, and 24-hour supervision, for example, within the community. In fact, most community living activists do not advocate for people who have relatively frequent meltdowns, like me, to live in the community. They may theoretically think so, but in practice it all boils down to how cost-effective community living would be. Well, what if, in cases like mine or certainly Claire’s daughter’s, it is not? I have always advocated for disabled people’s right to live in an environment they choose, and that may be segregated for some.

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Brandon: One Method of Containment Is Better Than Another?

Over the past few days, I’ve been increasingly concerned with the Brandon case. zarathustra over at Mental Nurse has an interesting perspective from a British point of view. As he writes, mental health practitioners in different countries often criticize each other for their use of different methods of containment of aggressive patients. The Dutch restrain and seclude more, while the British use more rapid tranquilization. I, from a human rights perspective, would condemn all these practises equally, but I, too, realize that you can’t have a person gravely assaulting or killing someone else. It’s a fine line that has to be walked between respecting the patient’s human and civil rights, and protecting people’s safety. From what I’ve heard in Brandon’s case, no-one sees a solution. This is extremely sad.

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18-Year-Old Man Restrained in Room for Three Years

I received an E-mail from my boyfriend alerting me to a news story from a Dutch television program. 18-year-old Brandon lives at ‘s Heeren Loo, a well-known institution for people with intellectual disabilities. There, he has been fixated to the wall of his room using a leash for three years consecutively. His room is empty and looks like an isolation room. Brandon has not been outside since 2007.

Of course, it is aruged that Brandon’s unpredictable behavior – whatever that may be – is the cause for his needing to be restrained. In reality, however, there is no behavior too bad to warrant this sort of harsh and long-term restraining. Besides, this restraining will make matters much worse, in that it likely escalates Brandon’s behavior only more. Fortunatley, the Labor Party is asking for an emergency debate in Parliament, but this is way too late already.

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Reduced Seclusion in a High Secure Hospital

Seclusion and its reduction is still on my mind, three years after my first and only episode of selcusion. In the most recent issue of the Journal of Psychiatric Intensive Care, seclusion reudction in a high secure hospital was being discussed. It is a very interesting paper, because it is the first study evaluating the reduction of seclusion in such a highly secure setting.

The study authors evaluated the number of seclsusion episodes and adverse incidents (attempted or actual assault) over a five-year period. At the beginning of this period, in 2002, several strategies were implemented to reduce seclusion episodes. These included:

• Use of information and transparancy;
  
• Peer and audit reviews;
  
• Positive risk management and a more recovery-focused treatment;
  
• Increased patient involvement, for example, through the use and advance directives;
  
• Staff training and education;
  
• Enhanced clinical leadership.
  

Some patients also benefited from a medication called clozapine, which is an antipsychotic with independent effects on violence.

Over the five-year period, the number of seclusion episodes decreased by two-thirds. Despite what some earlier studies suggest, there was no increase in adverse incidents within this study period. This signals that maybe an effective reduction of seclusion can be done, if it is a clinical and managerial priority. However, since it was a retrospective study, it is possible that other factors than those mentioned above contributed to the lessening in seclusion episodes.

Reference

Qurashi I, Johnson D, Shaw J, Johnson B (2010), Reduction in the Use of Seclusion in a High Secure Hospital: A Retrospective Analysis. Journal of Psychiatric Intensive Care, 6(2):109-115. DOI:10.1017/S174264640999015X.

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Dutch Autistics Receive Poor Care

According to a report by the Dutch Association for Autism (NVA), autistics often get the wrong care. Staff at residential care facilities don’t often know how to handle autism, hence causing autistics to end up on crisis wards or in isolation rooms. The NVA has been collecting stories from mostly family members of autistics about poor care since 2008. I at one point considered submitting my own story from my former ward, but didn’t since I never ended up in a “real” isolation room.

To me, it is obvious that care staff need more education about how to deal with autistic clients. This of course will not prevent outright abuse, since every adult should know that is wrong, but it will prevent unintended harm done to autistics by staff.

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Victory for Alex Oudman

Last week, the psychiatrist responsible for Alex Oudman’s long-term seclusion, was reprimanded by one of the Dutch regional medical disciplinary boards. Reprimanding is the second lightest sentence, after a warning, but it has a huge impact on doctors. Alex Oudman is a severely autistic man who lived in a mental institution in the northern Netherlands when he was secluded for months at a time in 2008. His family made sure the media was alerted, which even led to questions from MPs and new government policy to reduce the amount of seclusion in Dutch institutions. The family also went to the disciplinary board. I do not know yet whether the psychiatrist will appeal the reprimanding.

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Three Years

Today, I have been in the mental institution for three years. This third year – which will be my last full year in this institution since I was accepted to the workhome -, was quite important. I made quite a lot of progress in trusting people. I came out multiple to my psychologist and primary nurse last May, and came out about some of the bad things that happened in the past. I still find it difficult to talk about that though.

It opened doors, because I may be able to get
EMDR treatment for the bad stuff. The psychologist who does that has a waiting list a mile long, so it will take a while if it is at all possible before I move to the workhome. And that is of course assuming I meet the criteria, which I have a vague feeling that I don’t. However, even if the EMDR isn’t going to work out, my having trusted the psychologist with the information I trusted her with, has already opened possibilities.

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Institutionalized and Not Fighting to Get Out? You’re a Lousy Disability Rights Activist

Often, when institutionalization is discussed amongst disability activists, it is seen as both absolutely undesirable and something no-one would voluntarily choose over life in the community. I am a voluntarily institutionalized person, in the sense that I am an informal patient, and I am often looked upon with suspicion for thinking that an institution is the most appropriate placement for me given the circumstances of the system as it is now.

What these people fail to realize, is that it is only within the context of the current system that I prefer an institution, and that this doesn’t mean the current system is right. There are, in fact, a lot of barriers that keep me from living in the community, and I advocate for these barriers to be removed.

Yet it seems to be the default that people with disabilities go live in the community in spite of these barriers first, and only then fight to remove these barriers. In other words, we have to prove we can live without accommodations before we might get them eventually.

I would prefer to live in the community. However, I know that, if I went into the community in the current system, I would barely survive, figuratively speaking – I know that literally speaking no-one would let me starve. I managed for three months in this condition in 2007, and those three months were hell enough that I would not prefer to experience them again. I don’t care that I am keeping a stereotype alive by not fighting to get out of the institution. I have only so many spoons I can dedicate to living the activist life.

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How (Not) to Prevent Suicide

Today, September 10, is World Suicide Prevention Day. I struggle with this day. Since, you know, well, I was suicidal. Back in 2007 and early 2008, I had suicidal thoughts. I was not depressed – I was screened for that too many times to count. My diagnosis was adjustment disorder, which has very stigmatizing criteria. Medication wouldn’t help me, since I wasn’t depressed. The ward I was committed to, didn’t have a psychologist. I was there to wait and see if my thoughts would go away on their own. In the long term – in, like, well, three years or more, it appears -, a suitable living placement would seemingly heal all my problems. But for now, all I could do was wait at the locked ward for my suicidal thoughts to subside.

I was deemed a danger to myself, because not only did I express suicidal thoughts, I was a wanderer. I could be hit by a car, willingly or not. In retrospect, I think my lack of privileges lasted far too long in proportion to the risk I actually posed. I do not know how I would carry out a successful suicide attempt. But the fact that I expressed these thoughts, was enough for off-ward-under-supervision-only privileges. It played a part in the time-out policy, which was used more to scare me than to actually seclude me. In the end, I stopped expressing suicidal thoughts, and the thoughts themselves lessened. In all honesty, they return every now and then, but I won’t express them anymore. Is this suicide prevention? Well, I’m still alive, so technically it is. But it is not the compassionate type of suicide prevention I think is most desirable.

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