On a lighter note...

Whilst searching for Schizophrenia related blogs, I came across this: Could Schizophrenia “protect” against blindness?

The first thing that popped into my brain was “Are you recommending becoming Schizophrenic to avoid becoming blind?”

Apparently the person who raised this question has read an article (which I haven’t read) that suggests that blindness could “protect” against Schizophrenia, and wondered if the opposite could also be true. I have visions of psychiatrists everywhere reading this article and then poking their patients in the eye as a cure.

The debate continued with theories about cat owners developing Schizophrenia and whether less blind people are Schizophrenic because they own guide dogs instead.

Mr Mans response was “Some people have way too much time on their hands”.

Patient rights verses patient safety

June - October 2002

On Thursday I came across this news item which highlights a problem that unfortunately Mr Man and I are all too familiar with.

It is unclear whether the patient in this article discharged himself from the secure unit at the hospital*, was given home leave, or whether he escaped after being given permission to walk around the hospital grounds, as several articles (all from the same news website) differ slightly in details, but whatever the case, one thing is clear: he had not been assessed adequately to determine whether he was a risk to himself or others.

Once again I am moving into an area that I wasn’t planning on blogging about yet, but during Mr Mans first hospital admission this was just one of the ongoing problems that we had. Again and again Mr Man was released into my care for home leave, placing me under unimaginable pressure for days at a time, as he was very suicidal, but also he suffered from command hallucinations telling him to kill others. The problem was partly that the consultant and some of the nursing staff simply refused to accept that Mr Man was even suffering from psychosis, despite an assessment proving otherwise**, but also, just as the news article explains regarding the patient John Barrett:

"…too much emphasis was placed on [the patients] wishes and he was not assessed adequately."

In Mr Mans case, he wanted to go home as often as possible since he didn’t believe that he was ill, as is common with all Schizophrenia sufferers, but also, due to his psychosis he believed that the staff were working for “the company” and trying to control him with the use of medication. Due to these feelings he was understandably very keen to go home each time the consultant or other staff members suggested home leave, but that doesn’t mean that he was well enough to. Often he asked for home leave himself, and the staff never refused as it was thought to be a “good sign” that he wanted to go home. It was very difficult for me to say no, as I was always asked in front of Mr Man, and of course I had to be careful that I didn’t end up looking like the “baddy” who was forcing him to stay in the hospital against his will, and thus lead him to believe that I too was working for “the company”.

Although he had been through an assessment to determine whether he was truly psychotic, to my knowledge he still hadn’t been through a risk assessment at this point, despite being admitted due to feeling suicidal. He had already been in hospital for nearly four months before a risk assessment was finally carried out on him after he had cut his arm with a razor blade within the hospital grounds, and he was found to be a high suicide risk***. These results were largely ignored much like the results of the other assessment, particularly by the consultant on the ward. Just one week after being assessed as a high suicide risk the consultant said Mr Man could go home for some leave. Thankfully his primary nurse, who had conducted the assessment, ignored the consultant and only allowed Mr Man home leave for a few hours. Two weeks later Mr Man made a serious suicide attempt whilst on the ward.

From these experiences it is easy to see why some psychiatric patients who are released from hospital go on to commit serious crimes, or commit suicide. Often patients are not adequately assessed, and even when they are a number of problems can arise:

• There is a lack of communication between staff members (including consultants) about the level of risk.
• Staff members (including consultants) do not update themselves by reading patient notes.
• The responsibility is wrongly placed on the shoulders of an unqualified carer.
• Staff members (including consultants) disagree on diagnosis or treatment including whether home leave is beneficial or not.
• For a completely unknown reason to myself, risks are ignored by staff members (including consultants).

One factor that staff members fail to take into consideration is that whilst a patient may not be a serious risk to others or themselves whilst on the ward, the level of risk drastically increases once the patient leaves the hospital. This is largely due to the fact that the patient now has access to things previously not available to them whilst on the ward, such as knives, medication, alcohol, rope, and even privacy. This is one reason why the role of the carer is substantially more difficult than the role of the staff member, not to mention the fact that staff members work in shifts, whereas the carers role is an impossible 24 hours a day.

It was mentioned in one of the articles that the staff failed to heed the warnings of Johns partner. This is another problem that we faced often. In the days leading up to when Mr Man attempted suicide on the ward I had desperately tried to get someone to take my concerns seriously about his safety. Unfortunately no one did. This is something I will write about in more detail another time, but as Mr Mans current consultant has said recently “It’s a mistake not to listen to the carer”.



* One article states that John, the patient, could not be held at the hospital against his will, which is completely untrue. An “informal” patient, or someone who is in hospital voluntarily, can be detained for up to 6 hours by an authorised psychiatric nurse, whilst waiting for the doctor in charge to make an application to detain the patient for 72 hours under section 5 of the Mental Health Act 1983. Before the 72 hours has elapsed the doctor can then arrange for the patient to be held for a further 28 days under section 2, or 6 months under section 3.

** At the time it was explained to me that the assessments were “scored” out of 4; 1 being the lowest and 4 being the highest. In the psychosis assessment Mr Man “scored” 4, showing that he was suffering from a very high level of psychosis.

***In the risk assessment Mr Man “scored” 3, showing that he was a high suicide risk. The nurse who conducted the assessment explained that the only detail which prevented Mr Man from “scoring” 4 in the risk assessment was that he hadn’t decided on a location yet.

Anxiety

Apologies for no recent updates. It seems I spoke too soon and I am still struggling with my recent bout of exhaustion. I’ve also been very busy helping Mr Man with various projects that he is involved in at the moment.


As usual I am completely baffled by Mr Mans symptoms and how they are presenting. One of the most difficult things about coping with Mr Mans illness is the fact that it never seems to stay the same; we always have new situations that we have to learn to cope with. I’ve often said in the past (although not on here) that his symptoms seem to fluctuate in such a way that he will improve greatly in one specific area but still be very ill in every other way, and then he will seem to improve in a completely different area and the area that had previously improved will deteriorate again.

At the moment his levels of concentration are very good. He has been keeping himself very busy designing websites and writing his own blog. While he’s doing these things he’s fine, but unfortunately as soon as he stops he is back to pacing the floor and checking the window for people watching the house. I know the obvious answer is for him to keep busy, and he has been, but I’m just a little worried that he will wear himself out as he is having to keep his brain occupied from the moment he gets up to the moment he goes to bed.

We haven’t talked any more about his delusions, but the fact that he is pacing the floor and looking out of the window is a sign that they haven’t really settled down completely. They don’t appear to have worsened though, so I didn’t contact his psychiatrist about an increase in medication. One thing Mr Man and I have talked about is his anxiety, and this is something that I keep meaning to blog about, as his CPN (Community Psychiatric Nurse) seems to have great difficulty in understanding this problem.

Having suffered from anxiety in the past myself, I know too well that sometimes it is just a persistent feeling of overwhelming anxiety for no apparent reason, and sometimes it is more like an “attack” which is often accompanied by an irrational fear. I also know from experience that the “focus” of the anxiety is not usually the original source. For example, when I suffered from acute anxiety the focus was on spiders. I have always had a fear of spiders, as do many people, but at this particular time my anxiety had escalated to an unmanageable level which was affecting my ability to function on a day to day basis. I was too scared to open draws or cupboards, fearing that a spider would be inside, or even stand near a draw or cupboard. I couldn’t sit in the garden where I believed spiders to be everywhere, and I feared walking through the doorway of the house, convinced that a spider would drop on my head from its hiding place on the door frame. At this time I had had no recent experiences with spiders to aggravate this anxiety, but Mr Man had been admitted into hospital for the first time. Obviously my anxieties over Mr Mans admission were presenting themselves in a very different way.

For Mr Man, the recent “focus” of his anxiety is travelling by car. Each time we travel somewhere he is convinced that we are going to have an accident. This fear is compounded by the fact that the voices are constantly telling him that we will have an accident. Of course, this isn’t a completely irrational fear, as people have accidents on the road every day, but his anxiety levels are making it nearly impossible for us to travel by car.

The thing is there are different kinds of anxiety. Everyone suffers from anxiety as Mr Mans CPN Mark* is so fond of telling us. If a person were to address a large audience for the first time in their lives you would expect a certain level of anxiety; that would be perfectly normal, but when a person is suffering from anxiety for either no apparent reason, or in an area of life that had not previously caused them any anxiety, particularly when the fear is an irrational one, then there is obviously a deeper underlying problem.

Mark seems to find this very difficult to understand. Everything seems so straightforward to him. He is of the opinion that if Mr Man keeps travelling by car then his anxieties surrounding it will lessen in time. That’s a great theory, but if only it would work in practice. I’m sure that this exposure technique works for “normal” areas of anxiety, such as speaking to an audience for the first time, but as time goes by Mr Mans anxiety seems to increase with each journey, not decrease. We’re not talking about “normal” levels of anxiety here, and of course, if travelling isn’t the original source of the anxiety then exposure to that fear will be of little or no benefit.

Mark also seems to think that anxiety can be worked through with the use of logical arguments; we haven’t had an accident yet so there is no reason to think that we will. I can understand his reasoning behind this, but in my experience anxiety often defies logic. I knew a woman who suffered from anxiety, and again it presented itself in a completely unrelated area of life to the original source; she had a lot of financial difficulties but her anxiety was focused on the possibility of someone climbing in through her windows at night, and so during the heat of the summer months she kept them closed. Logically she knew that it was completely impossible for even a child to climb in through these windows as they were extremely narrow, but this argument did nothing to ease her anxiety.

The only useful piece of advice that Mark has given us is to use music as a distraction from the voices while travelling. This has had limited benefits, but still, it’s better than when we play no music at all.

Previously Mr Man has attended anxiety management classes, but he found that the classes themselves were causing him a great deal of anxiety! He still remembers the techniques that he was taught and he tries to put them into practice, but sadly this offers little or no relief for him.

As time goes by Mr Man is turning me into a nervous wreck as well! Out of the corner of my eye I can see him braking for me, and it’s not unusual for him to shout out “Look out! Look out! Look out!” while we’re driving along. He assures me that my driving is not the problem though! I only wish I knew what I could do to help. I’ve started to brake much earlier and to make sure that I have extra time for pulling out of a junction when I have him in the car with me, and apart from that it’s just the usual reassurances and loud music. I’m sure in time his problems in this particular area will improve though, and we will be faced with a completely different problem, as is so often the case.



* Name has been changed.

Blip

As previously mentioned Mr Man has had a change in medication over the past month. I was recently asked in the comments section how Mr Man was doing, and if there were any improvements in his symptoms since taking Abilify. At the time it was too early to tell especially as his symptoms are prone to slight fluctuations in severity anyway. Although he will openly tell me when the voices are worsening and causing him anxiety, he tends to keep his delusional thoughts to himself, unless a change in his behaviour causes me to probe deeper.

This was the case yesterday. We had had visitors in the day and it seemed to affect him quite strangely. I’m not sure how to explain it; sometimes I “sense” something but I can’t describe what it is. After our visitors had left he remained quite distracted throughout the day. He had this expression on his face, and I knew he was deep in thought, but when I asked him what he was thinking he just replied with “I don’t know”.

By the time we had gone to bed he seemed to be ready to open up. He told me that he felt that our visitors were spies. In fact he could only name a few people that he doesn’t feel that way about. He felt that he was being watched all of the time, and he said that the voices were telling him to get on with his “work”. Previously when he had skipped some medication I would find him sitting on the floor in front of the TV with a note pad and pen, taking down “codes” from the TV adverts. Now the voices are telling him to do this “work” again, and although so far he has managed to resist, he said that the voices are becoming very persistent and threatening. Of course, the voices telling him to do these things is one thing, but it's when he starts believing it that I start to worry, which he is. I said I would contact his psychiatrist on Monday to see if we can get his medication increased, but he refused saying that “She’s in on it”.

I’m hoping that this is just a “blip” caused by the disruption of medication levels during the change over, but obviously it is something that I am going to have to keep an eye on. He doesn’t seem to be preoccupied by these thoughts all of the time, as he was able to keep himself busy for some of the time yesterday, and we had some interesting discussions about music and such like. I’ll have to be very careful to make sure that he definitely swallows his medication though, as I know that once the delusions start that he is likely to stop taking them, believing that the meds are used to “control him”.


I know I said previously that I didn’t really want to discuss his delusions yet as I wanted to retell the series of events in order, but obviously that isn’t happening. I seem to be recovering now from my recent bout of exhaustion so hopefully I will be able to write about his first hospital admission soon.