Some of this post has been deleted
give Philippa more *HUGS*
I recently attended a very boring and yet equally as interesting meeting for teachers involved in adult education. It was a compulsory thing for my friend, and I went along as her chauffer. There was much emphasis on completing paper work and carrying out risk assessments – if you’ve worked in education (or any public sector) you’ll know what I’m talking about. Before you ask, the buffet was naff.
There was a panel of various key figures who took it in turns to give a little introduction of their roles in the education service, followed by the usual “if you have any questions come and see me later” and “my number is in this leaflet” whilst waving bits of paper in the air. And then a lady stood up and said: “My name is Josephine Bloggs and my role is to make sure that adult education is accessible to people with physical disabilities or mental health problems”. That’s when the evening became interesting. She said that teachers obviously know about their own subject, but need to be taught how to cater for the needs of such ones.
Raising awareness in this way is something I would quite like to do – explaining what mental illness is and isn’t, a few do’s and don’ts, and how best to be supportive, that kind of thing – after all, they’re not training to become mental health nurses, so a lesson in biology is probably not required! I enquired about it later in the evening and although I was told that the CPT would be handling it, the lady took my number to pass on to another lady who would be directly involved in this. During our discussion there were a few points that sounded a little odd to me, and when/if the lady calls me I shall no doubt be asking for some clarification.
Firstly, I got the impression that there were specific courses for people with mental health problems, such as painting, dancing, yoga, “subjects that are therapeutic” as the lady put it. Are they suggesting that people with mental health problems can only benefit from “therapeutic” subjects and not academic ones? Do they assume that people with mental illness do not have the mental capacity to learn something more challenging?
Secondly, why are people with mental health problems being segregated by being given their own courses? Aren’t they just ordinary people like you and I?
Thirdly, I was told that one way I could help was by being a “buddy” for a mentally ill student. Please tell me that this is not a paid role. Do they think they need to enrol people to be friends with those with mental illness? How is the person expected to gain confidence in their own social skills if “buddies” are provided? How would you feel if you were assigned a “buddy”? Wouldn't you feel like they were saying “You're so awful no one will like you so we've asked someone to be your friend”?
These courses are designed for people with “mild to moderate” mental health problems. I have read that Schizophrenia is the most severe form of mental illness. So if this is how they view “mild to moderate” sufferers of mental illness, they must think Mr Man is a complete cabbage! So let me just clarify a few things about Mr Man…
The BBC reports that in a study of 500 young people conducted by Great Ormond Street Hospital, almost half could not name a single mental health condition. Dr Jon Goldin, a consultant child and adolescent psychiatrist at Great Ormond Street, said the results were both worrying and surprising. But are they? Are the results really that much of a surprise?
I confess; before it was suggested to me that Mr Man may be suffering from Schizophrenia, which in turn led to my own research, I had no idea what Schizophrenia was. Like most people I think I thought it was a split personality – I had no idea about delusions or hallucinations. Lack of knowledge probably explains the strange reactions I have had from others once they have realised my “plight”.
Ignorance is rife at all ages. No wonder then that many of the Google searches that lead to my blog are strange questions such as: “is a schizophrenic capable of love?”
Dr Jon Goldin continues: “This ignorance is probably one of the reasons why for too long now there has been a stigma attached to living with a mental health condition.” And I couldn’t agree more. People living with mental health problems are presumed to be unpredictable, violent, aggressive; you name it – anything other than ordinary people living with an illness, and these beliefs are largely fed by various types of media. How many people ask the question: “Is a person with Multiple Sclerosis capable of love?”? Or “Are people with Cancer violent?”? How many times do we see the headline “Murderer was Dyslexic”? Never. Does this mean that people with Dyslexia don’t commit murder? Of course not, but we wouldn’t dare stigmatise these people in such a way.
It is admirable that Great Ormond Street is responding to this need of information by adding a new section to their website Children First, dealing with mental health issues; but just as with this blog, I fear that only those who have an interest in mental health issues will access that area of the site, and believe it or not, there are still some children without internet access or the privacy to read information on such a sensitive issue.
Young people are often influenced by the attitudes of their parents and teachers before they reach their teens, and prejudices can already be ingrained by then. There needs to be more education for the general public and especially for parents and those who work with young people – firstly to avoid passing on such prejudices, and secondly because mental illness often first develops in adolescence and needs to be recognised for what it is. Mr Mans illness remained undetected throughout his teens, as his depressive behaviour was dismissed as being “normal teenage” behaviour.
No, there is no surprise at the lack of knowledge about mental illness by young people. Ignorance breeds stigma and further ignorance. Only knowledge breeds understanding and acceptance.
September 2003
If you have been following our story in order this is quite a jump forward in time, but the subject of having a loved one detained under a section of the Mental Health Act is one that has been discussed recently, but not in depth. This was our experience.
It was a Sunday morning. I awoke earlier than usual, not having slept very well after being woken during the night by Mr Man repeatedly banging his head on the pillow in an attempt to get the voices to stop. He had been discharged from hospital five months earlier, but the medication he was taking seemed to have less and less effect on his symptoms as time went on. It had been decided some months previously that Mr Man would be admitted into hospital to start treatment of Clozaril, but he was still on the waiting list for “the Clozaril bed”.
Despite a growing history of self harm, suicide attempts, and psychosis, Mr Man still had no Care Plan in place, no CPN, and no Care Co-ordinator. We “coped” alone. Earlier that week the strain had become too much for me and I had resorted to alcohol, just to experience one night without the worry and the emotional pain of watching Mr Man suffer. Not being a regular drinker, when I wanted to repeat the experience two days later I realised I wasn’t coping.
Without a support system in place, when I realised how bad the voices were getting I didn’t know what else to do except call the usual “out of hours” Doctors surgery. I explained that Mr Man was waiting to be admitted for treatment with Clozaril, but that in the mean time his condition was deteriorating quite badly. The Doctor agreed that I should bring him in to be seen.
The problem was that although Mr Man had previously agreed to go into hospital to start his treatment of Clozaril, whilst waiting to be admitted his symptoms had deteriorated to the point that now he was confused as to whether he was really ill or not. Mr Man refused to get up. To begin with I thought this was merely part of the ongoing problem I had with getting Mr Man to do anything, because of the negative symptoms of his Schizophrenia. I called the surgery to explain. I was sure that the Doctor wouldn’t understand and would think I was wasting his time; after all, that was the response I was used to from Psychiatrists and Psychiatric Nurses, so I didn’t expect much from a GP, but he suggested I try again. Mr Man still wouldn’t get up, but this time it became clear to me that it was because he didn’t want to be seen by a Doctor, rather than just not wanting to get up. This worried me even more because I knew from experience that once Mr Man had lost the insight that he was ill his delusions would take hold and there would be no reasoning with him. I called the surgery again to cancel the appointment. I was embarrassed that I had called the surgery for an appointment and now Mr Man was refusing to go, and I felt so helpless. The Doctor must have discerned the anxiety in my voice and he threw me a line.
“Are you saying he is refusing to be seen by a Doctor?” Something in the tone of his voice told me what he was thinking.
“Yes” I replied.
“Are you concerned that he could be a danger to himself?” he asked.
“Yes” I replied, and I went on to explain that that was why I was so worried; because the voices were worsening and they often tell him to harm himself.
I was so relieved and so grateful when he said he would arrange a home visit for Mr Man to be assessed. Mr Man was a bit sulky with me about that, but once the Doctor arrived he agreed to go down stairs to be seen by him. After discussing his symptoms with him, the Doctor asked Mr Man if he would go into hospital voluntarily, but he refused. The Doctor asked me if I agreed that Mr Man needed to go into hospital, and I did, so arrangements were made for a Psychiatrist and a Social Worker to attend.
Mr Mans mother visited us that day, which had been pre-arranged earlier in the week. She was obviously confused by the presence of strangers in our home, so I took her into the kitchen and explained what was happening. She was overcome with emotion at the thought of her son being taken into hospital against his will, but for me – as someone who had needed to hide knives and blades, and constantly reassure Mr Man that he doesn’t have to slice himself open when the voices tell him to, and that no harm will come to him or me for not doing it – having him “sectioned” seemed far less traumatic than the thought of his condition deteriorating further.
The lesser of two evils?
"Sectioned Lady" by Philippa King
Thank you to everyone who has asked how Mr Man is doing. I’m sorry to have kept everyone waiting so long for an update; since the weekend I seem to have swung from being mentally very alert and hardly sleeping, to feeling like a zombie and sleeping at every available opportunity. I expect this is a normal reaction to stress, and my sleep patterns seem to be governed by the perceived level of need from Mr Man – now that he is sleeping more soundly, I am too.
Dr Hillary was able to go back into work on Monday afternoon, and she obviously felt that seeing Mr Man was more of an emergency than whoever had spoken to the receptionist that morning, as she called to say that she would come for a home visit after 5pm that day.
It was important for her to establish why Mr Man had stopped taking his medication, as this would have a bearing on which direction her care would take. She was happy to find that it wasn’t due to any loss of insight, or command hallucinations, but because Mr Man had simply had enough of the side effects (I will write more about this soon). She was also concerned that Mr Man could be suffering from rebound psychosis after stopping his Clozaril so abruptly, but again, was happy to note that this didn’t seem to be the case.
Actually, I have been very surprised that Mr Man’s symptoms have not deteriorated as much as they have in the past. I suspect that the Abilify he takes has helped him far more than anyone realised. About four years ago Mr Man skipped some Clozaril, hoping to control some of his side effects, and at that time he became very ill, very quickly. He was careful not to skip more than one dose at a time so that he wouldn’t have to be reintroduced to the drug (which is when the side effects are at their worst), but within days he was sitting right up close to the TV, with a note pad and pen in hand, insisting he had to write down “codes” from the commercials for “the company”.
At that time he was also taking Risperidone, but the worsening of his symptoms without the Clozaril was dramatic. This could lead some to conclude that maybe the Risperidone wasn’t really up to the task, but it’s interesting to note that when the Risperidone was reduced before the introduction of Abilify, there was a marked deterioration in his symptoms then as well, even though he was still taking Clozaril. This is why I say that the Abilify has obviously helped Mr Man more than anyone realised, as it really seems to have kept him afloat this time. I can’t help wondering if some of Mr Mans current psychosis is in fact rebound from stopping the Clozaril abruptly, and I wonder if he would have managed on Abilify alone if the Clozaril was reduced gradually and the Abilify increased slightly. Perhaps we’ll never know.
Of course, from Mr Man's point of view he's not doing very well at all - the voices have worsened, his anxiety is worse, and he is struggling to "hold it together" as he put it. I've no doubt of the internal struggle he is having to remind himself of what is real and what is not, and I know that when the voices worsen it becomes very distressing for him, but he hasn't lost his insight and become completely delusional so from my point of view he is doing very well. He even spent some time in his studio this evening. I still keep running up the stairs every time I think I can hear him in the bathroom though, so deep down I know the potential for further deterioration in his symptoms is there.
Dr Hillary praised my good sense (her words) to increase Mr Mans Abilify over the weekend and has decided to keep the dose at the increased level of 15mg instead of 10mg. She didn’t want Mr Man to continue relying on Diazepam for sleep though, because of its addictive nature, so after also noting Mr Mans heightened anxiety (he was shaking from head to toe), she prescribed him Quetiapine, also known as Seroquel. Quetiapine has a sedative effect and is sometimes used for the treatment of sleep and anxiety disorders, although it is primarily an anti-psychotic medication. So hopefully it will cure everything! So far it seems to have had the desired effect – we’re both sleeping better and I’m not even the one taking it!
On a Lighter Note
After researching Quetiapine on the internet I discovered that it is highly sought after by inmates in US prisons, referred to as “Suzie Q”. I told Mr Man that if he decides to cut out his medication again to give these ones to me instead of throwing them away – I might be able to sell 'em!
And Hannah, from Coloured Mind and Scattered Thoughts, raised an interesting point in the comments section about crisis teams and early intervention. Dr Hillary mentioned this during her visit. She said if we wanted to be referred to the crisis team we should let her know before Thursday. It seems one actually has to be referred to a crisis intervention team before they can intervene, which really isn’t any use if you’re suddenly having a crisis out of the blue, is it?
I called our local Community Mental Health Team this morning to book an emergency appointment with Dr Hillary. Unfortunately she wasn’t at work today as she was having an emergency of her own, and Mr Man was refusing to see anyone else. Additionally, Mr Man has decided that he doesn’t want to start taking Clozaril again (which I will write about later). His Care Co-ordinator is on holiday, so the receptionist put us on hold while she spoke to a nurse.
She came back and explained that there “isn’t a real emergency” so Mr Man could come in and see Dr Hillary on Wednesday.
I accept that there are unavoidable circumstances which mean that Dr Hillary can’t be magically brought into work in a puff of smoke, but it’s that phrase “isn’t a real emergency” that bothers me – as if I’m being accused of overreacting again. I suppose she’s right; Mr Man hasn’t chopped his own head off and he hasn’t been running up and down the street naked screaming blue murder (subject to change). But really, those are the kind of emergencies where I would be looking for an immediate assessment to have him admitted into hospital, and it wouldn’t matter which doctor he saw. This situation is an emergency to us because we want to avoid a hospital admission.
Admittedly, Mr Man’s symptoms haven’t deteriorated as quickly as they have in the past when he has skipped some medication, although I suspect he is keeping much of it to himself and he is sleeping most of it away with the aid of Diazepam. If they had, I would be much more worried about him than I am. Still, I won’t be leaving him at home alone any time soon, to avoid any real emergencies.
Mr Man saw his psychiatrist, Dr Hillary, recently. We discussed the worsening of the voices, and also an interesting symptom which he has not admitted to previously – his auditory hallucinations actually include hearing music. Obviously this is not a symptom that is bothersome to him, and the music that he composes is a recreation of what he hears. This takes us back to the subject of psychosis and creativity, and raises the important question of how or how much of these symptoms need to be controlled.
For the most part Mr Man has been coping very well with the level of symptoms he currently experiences. It’s probably not what most people would call a “normal” life, as there are still many areas that cause him problems, but compared to just a couple of years ago his quality of life has improved dramatically. He regularly plays table tennis and has been able to interact with other players and form new friendships, albeit not close ones. He also composes music, writes computer programs, and designs websites.
Obviously increasing medication would greatly impact on his ability to carry out these activities due to the side effects of drowsiness and lack of concentration. As Mr Man said himself “I don’t want the music to stop”, and yet some of his symptoms are still distressing to him. For this reason it was decided that now would be a good time to refer Mr Man to a psychologist who specialises in psychosis, so that he can help Mr Man to learn how to “talk back” to the voices. I feel this is an important step, and now would be the ideal time; Mr Man has good insight into his illness, and has been progressing steadily.
However, I fear these plans are about to be put on hold for a while – Saturday evening I discovered that Mr Man has not been taking his medication.
I had noticed over the last few days that Mr Man’s anxiety had been increasing. By Saturday afternoon he didn’t really know what to do with himself. He was fidgety and felt clammy. He’d sit on the door step and then come in again 10 seconds later. He was feeling hot then cold. He also had this very strange look in his eyes that I had not seen before. His eyes were wide with a “crazed” look – I’m sure to others it would have seemed quite scary. I put it down to the anxiety. Thankfully we still had some Diazepam left from when he was prescribed it previously. It settled him for a while, but later that evening he became very negative about life and everything in it.
As I gave him a reassuring cuddle I asked him: “How come you’ve been feeling so poorly just lately? Have you missed some of your tablets?” He avoided eye contact but nodded to confirm that he had.
At a time like this, establishing and maintaining open and honest communication is essential. A person suffering from psychosis will already be feeling confused and anxious because of the voices, so no matter how scary or shocking, I always try to be supportive and never react emotionally to anything that Mr Man tells me, as this would only raise his anxiety further and possibly make him feel that he can’t confide in me. I say this, not to make myself sound amazing, but because it is an important factor when dealing with someone who is suffering from psychosis, and yet one that is easily neglected.
“Ok, which ones have you missed” I asked him calmly, still cuddling him. Mr Man started to panic:
“I’m not going back into hospital”
“No, that’s ok; I don’t want you to go into hospital either, but I need to know which tablets you have missed”
He told me it was his Clozaril, also known as Clozapine. I needed to know how many doses he had missed. He kept repeating that he wasn’t going into hospital, and now I realise why he was panicking so much – he had missed too many doses to be able to just go back on to his usual dose. *Please see footnote.
"Missing Clozapine" by Philippa King
End September 2002 - beginning October 2002
As previously mentioned, the voices have worsened again for Mr Man recently, telling him to cut himself. So far he has managed to resist carrying out their demands, but it’s funny how the fear that he will follow through never completely leaves me.
Most of the knives in our house aren’t very sharp but I do own a craft knife from years ago when I went through a phase of card making, and I keep this well hidden. I needed to use the knife recently and I had to wrack my brain to try to remember where I had hidden it. Mr Man walked in on me as I retrieved it, and it made me jump like a naughty school girl trying to hide a secret. It was still stained with Mr Man’s dried blood from 2002. It was the only time he had ever cut himself at home, and yet I still fear it could happen again.
Mr Man had been in hospital for about 4 months. He was still an inpatient at the Psychiatric hospital but he was at home with me for the evening on home leave. I’ve discussed previously why it was difficult for me to have Mr Man at home on home leave, but equally as difficult to refuse.* Things were really starting to come to a head; I could see that Mr Man’s condition was deteriorating, but the only member of staff who recognised this fact was his primary nurse, who unfortunately didn’t seem to be at work that often, or was working nights. The other staff, including the consultant, was under the illusion that Mr Man wasn’t suffering from psychosis at all and never had, and that he wasn’t a risk to himself either, despite recently having been through several assessments which indicated otherwise.*
Mr Man had cut his arm whilst on the ward two weeks earlier, with razor blades. The poor lad that found him had only just been moved from the Psychiatric Intensive Care Unit to the Acute ward, and had to be taken back to PICU because of the shock. Mr Man was assessed and found to be suffering high levels of psychosis, and was a high suicide risk.* He was placed on level 3 observations, which meant he was checked every 15 minutes – as if it takes longer than 15 minutes to seriously harm yourself. These observations never lasted long anyway; maybe a day or two, and the following week Mr Man’s consultant suggested that Mr Man go home over night for some leave. This caused a huge row between the consultant and Mr Man’s primary nurse, who was the one that carried out the assessments and seemed to be the only person who took Mr Man’s symptoms seriously; not to mention my own ability to cope. She overrode the consultant’s decision, and told Mr Man that for the time being he was only to have a couple of hours home leave at a time, and no overnight stays.*
During those hours I followed him everywhere. I tried not to make it obvious, but whenever he needed the toilet I would find something that I needed to do upstairs. I told the staff I was doing this, in an attempt to get them to understand how worried I was about Mr Man's safety. They told me I was being over protective and that I needed to allow Mr Man to take responsibility for himself. They said I was "hindering his recovery". So on Tuesday 1st October when Mr Man was at home for a couple of hours, I followed their advice and allowed him to go to the toilet alone. I knew it was wrong. It felt wrong. There was something in his face that told me it was wrong. I patiently waited down stairs. When I heard the floorboards creaking I knew he wasn’t sitting on the toilet, so I went upstairs. And that’s when I found him.
He had cut the inside of his forearm lengthways with the craft knife, and was prodding around inside with his fingers. “What are you doing?” I shrieked, as I took the knife out of his hand. He was clearly very distressed. “Please don’t be upset with me, I had to do it. They told me I had to get the aerial out”. It was difficult for me to be a calming influence when inwardly I was panicking. I know now from reading medical blogs that I probably didn’t need to panic quite so much as there was no arterial spurt, but at the time the cuts looked deep, and finding him in such a state was traumatic.
"Cut Out" by Philippa King
I just came across this video on Post Secret. Having come so close to losing Mr Man through suicide, it touched me deeply, and I wanted to share it.
The button below can be used to save and/or share the Hopeline website in your favourites.
Some of this post has been deleted
Some time during the winter months Mr Man’s CPN, Mark, had a job change, so now Mr Man has a new Care Co-ordinator; an Occupational Therapist who we will call Sandy.
Being an Occupation Therapist, she wanted to do something practical to help Mr Man with his anxiety. Since he has already been on every anxiety management course imaginable with little or no success, it was decided that she would go for a walk with Mr Man every two weeks to gradually build up his exposure, and to talk him through how he was feeling during the walk. This seemed like a reasonable plan, and she turned up the following week without an appointment as planned; prior notice would have given Mr Man time to worry about it. That was 3 months ago. This could have been a great opportunity for her to establish a relationship with Mr Man, if she had followed through, but since then she has only come to see Mr Man once, with a trainee in tow.
I think the plan was supposed to be that I was to carry on what she had started, as after the first walk she said “Maybe Mrs Man could go out for a walk with you next week?” and since then there has been no mention of her taking another walk with him. This irritates me because on one hand they are very fond of telling me to step back and that Mr Man has to learn not to be so dependant on me alone, and yet on the other hand they expect me to be the one to support him in all of their wonderful plans for him; not to mention the fact that I don’t always have the physical or emotional energy to undertake these endeavours due to my own health problems.
How do I stop the darkness from rolling in, for Mr Man or myself?
"The Darkness Rolling In" by Philippa King
In January I received some questions from a reader, prompted by a post I had written in November 2006. The post was entitled “Blip”, and at that time Mr Man’s medication had been changed, causing a temporary fluctuation in his symptoms. This had led to him believing that many of our friends were spies, and that even his Psychiatrist was “in on it”. You can read the full post here. Below is a portion of my correspondence with the reader, for the benefit of those who may be in a similar situation.
"How do you handle it when Mr Man says things like “she’s in on it”? And how do you handle living with someone who always believes that people are spies? I have fears about when my hubby comes home – how am I going to feel with him always thinking that people are after him? I have a hard time when he thinks I am against him. I don't know how I will react if he is going to say stuff like that throughout the years."
"His social worker said that if I took over his care, not only will I be the wife but I will have to be the one responsible for him taking his medication, and if he doesn't then I will be the one forcing him into the hospital. So it could strain our marriage. Do you have any experience with this?"
"Trust Me" by Philippa King
Stories such as this one infuriate me. Once again we have a lawyer who is paid far too much money to try to find a way of reducing the punishment of a man who has undeniably committed a heinous crime, and the best he can come up with is “he couldn’t help it; he’s mentally ill”.
There’s no getting away from it; some people are just bad and do bad things. People can’t always be excused for what they do. Continually using mental illness as an excuse means that bad people are not being punished adequately for the crimes they commit; the sincerity of those who do commit crime due to mental illness is called into question; and people with mental illness in general are wrongly viewed as people to be feared and avoided, as it appears that there are more people with mental illness committing crime than there actually is.
This has to stop.
Are we going to get to the stage where no crime is punishable? Will every crime be attributed to mental illness? Will all murderers, rapists, and paedophiles be regarded as victims of illness rather than bad people? Where does it end?
I received this comment from Bipolar Speaks in the comments section, and thought it was such a wonderful idea that I wanted to make sure that everyone got to read it.
Most of you know me as “Dreamwriter.” I recently launched a new blog called, “Bipolar Speaks.” One day something came over me as I was reading websites called “Post Secret” and also a blog who had a post where they had quotes from other Bloggers with mental illness about how they felt. It occurred to me that WE need an escape to let out our feelings and frustrations. I know that a lot of Bloggers say what they feel within their own blogs, but you are welcome to share your thoughts, opinions, and feelings.
You are welcome to help raise awareness and put a stop to the Stigma that lies within mental illness. We can change the world - one story at a time. I thought it would be interesting to design a “Safe Haven” for those who battle with a Mental Illness; and allow them to come and let out their most darkest, painful, and emotional feelings. This would be a great way to spread awareness by letting society know what is REAL about mental illness.
If you are interested, you can submit a story or short piece as an “Anonymous” contributor, or if you don‘t care about what others think, then feel free to reveal your blogger identity; its purely up to you. I tried this several times and the “Anonymous” button works and ends up in my email as an “Anonymous” comment.
The rules and regulations are in the blog within a post. Take the time to read them thoroughly and I hope that you become a constant contributor. Remember, we all have things on our chest to let out and we all truly don’t want others to know. But now is an opportunity for YOU to speak up, speak out, and be heard! I know that I have a lot of feelings and issues that I don’t want my husband, friends, or family to know about… this is my chance to get it off my chest and I WILL be a constant contributor. Depending on the issue, I might submit the story under both “Anonymous” and my name.
Go to “Bipolar Speaks” and look around, don’t forget to display the Bipolar Speaks button on your blog and link it back to us.
By the way, I still have my other blog, so don’t forget about me over there, too. :)
I’m aware that Mental Health workers sometimes read this blog, and some have previously commented that it helps them to see things from a different perspective. So this is a message to all those who provide “Care in the Community”.
Don’t get shirty when a “service user” who can’t even remember to change his underpants doesn’t return your calls. And if he has a spouse who usually takes care of these things for him, take a minute to think about why she might be letting those things slip at the moment.
Sometimes there are more important issues in life than your appointment schedule running at 100% efficiency.
Edit: After making such a fuss last week, she failed to turn up for a scheduled appointment with Mr Man today, and she didn't even call to cancel. Maybe life has taught her a lesson in "more important issues"?
Head Meets Brick Wall
It’s been a long time since I wrote an update in the Respite Saga. The problems continue, with the addition of brainless staff at the helm, upholding pointless rules.
The local MP was little or no help to me whatsoever. After the helpful MP we had previously I foolishly concluded that all MP’s would want to care for their own constituents. In reality the only thing he did was to forward my letter on to the Chairman of the local NHS Trust and Patricia Hewitt, the then Minister of Health.
Of course Patricia was far too important and busy to look into the matter and respond to my letter, so she then forwarded my complaints on to someone else. Someone else, like most politicians I suspect, was caught up in her own fantasy world of statistics and figures and wrote me a long letter to explain how many millions of pounds our wonderful government had invested in mental health services – which didn’t actually address the problem of the cut backs in our area which I was referring to.
It was April last year when I sent my second letter of complaint to the Chairman of our local NHS Trust, regarding the cutbacks in respite beds. It took the Chairman four months to reply. In part he wrote:
“Although in the past [the respite home] provided respite on a limited basis our strategy in the future will be to provide a wider and, I hope, more convenient range of respite opportunities such as direct payments for home support, holiday respite and respite relief from home in other settings similar to [the respite home]. Until these arrangements are in place [the respite home] will continue its current arrangements.”
I would like to thank all those who commented recently on my posts “Violence and Schizophrenia”. Often I find that the comments left by readers are more interesting and informative than the posts I have written! Some of the explanations of what it is like to suffer violent intrusive thoughts were too valuable to leave unread by the majority in the comments section.
“The thoughts are like movies you can't shut off... no matter how horrible it is I can't press stop… I'm forced to "watch" the whole thing until it is done.”
- Minnesnowta
“I've struggled with these thoughts for a long, long time. I thought they made me a horrible person and I have done very silly things to try and erase them from my mind. I could not even write them down for fear that they would become more real.”
– Anonymous
“They cause great distress, and I wonder why my head does this to me? I don’t like swatting wasps, let alone harming a person; it’s just not me at all.”
- Slurry
“I have been reading your journal with interest and after some time have decided to post a reply to this thread.
On the topic of intrusive thoughts my guess is that we all have these and from time to time they can be elaborate, explicit and violent but a filter or whatever prevents us from taking these fantasies and enacting them in the real world. If this were not close to the mark I fail to understand the attraction that violent films and latterly computer games have for a large proportion of the population. In fact, children may re-enact what they have seen but as play rather than through real aggression.
I am reluctant to continue this post as I believe it will be unpopular with the non sufferers of schizophrenia and those with the illness who read this blog. However my opinion is as valid as anyone else’s and deserves to be considered.
A small percentage of people with serious mental illness are capable of the most appalling violence. I know of no way to differentiate those who will go on to kill and those who will not. I believe that by claiming that there are far worse dangers out there you are bordering on denial. There are many dangers out there, far more people are killed by the sane than the mentally ill but a percentage of schizophrenics will go on to kill.
Even a small percentage is significant, I personally know of no one who has been killed by a seriously mentally ill person. I have however been stabbed over a prolonged period by one and am lucky not to be one of the statistics I feel some would rather ignore.”
“Most people with psychoses harm themselves before other people as they still maintain their moral reasoning that it is wrong to hurt others. Those that do harm others, only do so because they feel they are severely threatened, regard it as the best/only option for their dilemma, or they have a delusional belief that such behaviour is 'ok' (I once nursed a guy who stabbed a horse guardsman in the leg because [he believed] it was an act of mutual bonding and honour that the guardsman would have understood).”
"On Balance" by Philippa King
“In regard the myth of the "snap" theory, I agree. It never comes unannounced. It frequently goes unnoticed or unattended though. I have worked with violent mentally disordered offenders for several years now. What you say is true and accurate from my perspective also; that the true cause of the violent act being purely in psychotic reasoning is pretty rare. Often it is increased in probability by prior personality, intellectual or environmental influences; or is more to do with those predisposing/predictive factors and not psychoses at all.”
You continue:
“There are many dangers out there, far more people are killed by the sane than the mentally ill but a percentage of schizophrenics will go on to kill.
Even a small percentage is significant”
I agree that although the percentage of those killed by people with mental illness is small, those victims are not insignificant. However, I think it is unfair for the media to wrongly give the impression that these murders are more frequent than they actually are, or that everyone with a mental illness is violent. Rather than trying to ignore statistics, I am asking people to be balanced in their view of people with mental health problems.
I understand that your experience has not been a good one. You don’t say what your relationship is to the individual who has stabbed you, but I would recommend seeking outside help and advice from a GP or a Community Mental Health Team. If this person is persistently violent towards you he/she should either be arrested or detained in a secure unit under a section of the mental health act.
Thank you again for your comment, and to all who have commented on this subject.
Related Posts: Violence and Schizophrenia - Part One, Violence and Schizophrenia - Part two
Related Posts on Mental Nurse: The Will To Do No Wrong, The Will To Do No Wrong Part 2First published 23/12/06. Edited for 2007.
Christmas is an incredibly lonely time for many people. Unlike any other time of the year the world seems to stop spinning and everything comes to a halt. In this country at least, this includes mental health services. This is just too much to cope with for some people; just knowing that no one is there for them if they need someone can cause an increase in anxiety. (See this news article)
Traditionally, it is a time for family and friends to come together. But some people don’t have any family. Many will be remembering lost loved ones, and some will be grieving new losses. Elderly ones in particular may have lost their spouses, siblings, and friends. Sick ones may struggle to form lasting friendships. For all of these ones, knowing that others are enjoying the company of people they love and who love them can make them feel more isolated than ever.
"The Silent Night" by Philippa King
As previously discussed, and as confirmed by the comments received, Schizophrenia sufferers are often the victims of violent intrusive thoughts. But are people with Schizophrenia violent?
If your opinions are easily swayed by headline news then you would probably conclude that they are. I am aware that within the town I live in, stabbings and murder are far more common than I would like, but rarely – if ever – does it reach national news. The only type of killings that do reach national headlines are the ones that are particularly shocking in some way – a child perhaps; a whole family; or a murder committed by someone with mental health problems. Now there’s a headline.
With so much media coverage every time a person with mental health problems commits a murder, it’s no wonder that people think they are all mad, axe wielding murderers. In fact, as few as 50 murders a year in the UK are recorded as being committed by someone with mental health problems, compared to 1,300 suicides – when it is said that people with Schizophrenia are more likely to hurt themselves, it’s true.
95% of murders are committed by “sane” people. My guess is that of those 5% of murders which are recorded as being committed by people with mental health problems, many of them could have been prevented, and many of them would have been committed whether the person suffered from mental illness or not. Why do I say that?
It is a myth that people with Schizophrenia will suddenly “snap” and become violent. Uninformed (and even misinformed) individuals still believe that people with Schizophrenia have a split personality and will switch without warning between the two. Often people believe that whilst one of their personalities may appear “normal” the other is often psychopathic. The truth is that people with Schizophrenia only have a “split mind” in the sense that they are split from reality, with principle symptoms of Schizophrenia being delusions and hallucinations. If suffering from Schizophrenia was really the cause of a person committing murder it would be because of these delusions and hallucinations. The person would probably have a strong belief that he or she was acting in self defence, as many delusions include feelings of persecution.
It is thought that maybe only 1% of the 1% of people who suffer from Schizophrenia commit violent crime.
"True Figures" by Philippa King
I’ve only ever really skimmed over the symptoms of Schizophrenia in my blog. To be honest, there are so many websites that list the diagnostic criteria for Schizophrenia already, and probably far more accurately and eloquently than I ever could. When you are a sufferer of Schizophrenia though, or care for someone who is a sufferer, you realise that there are other common symptoms which are not listed as part of the diagnostic criteria, but are suffered none the less. One of these symptoms is intrusive thoughts. What do I mean by that?
I don’t mean the compulsive thoughts that Mr Man often struggles with. Compulsive thoughts are similar to what is experienced by a person suffering from Obsessive Compulsive Disorder – an obsessive compulsion to carry out often ritualistic behaviour accompanied by anxiety. For Mr Man these compulsive thoughts present themselves as obsessive counting in his head, and re-arranging things in order. When we had some children’s building bricks in the living room he had compulsive thoughts to build them into a symmetrical shape, dismantle them, and then rebuild them again. Trying to resist this compulsive thought caused him a lot of anxiety until eventually we decided to put the bricks away out of view.
The intrusive thoughts that Mr Man experiences cause him anxiety for very different reasons. These thoughts are very violent in nature, and he describes them as being inserted into his brain as if by an outside source. It is precisely because these thoughts do not reflect his own feelings that they cause him so much anxiety, rather than it being the strain of resisting such thoughts. These violent thoughts are not temporarily accompanied by a surge of anger which could tempt the sufferer into acting upon them; neither are these callous thoughts with no feeling for the victim; rather, they are unwanted thoughts that cause the sufferer a great deal of anxiety as they have no desire to act on them. They are as unwelcome as the frightening hallucinations a Schizophrenia sufferer experiences.
"Intrusive Thoughts" by Philippa King
When Mr Man was at his worst, he had intrusive thoughts of killing me and cutting me up into pieces. He said he also saw himself doing it on a sort of screen in front of him. Was I scared? Not at all. Should I have been? Should I have been afraid of a man who had never raised his voice to me let alone his hand, and who sobbed and shook with grief at the thought of carrying out such atrocities? I never feared that he would ever act on these thoughts. In reality these intrusive thoughts caused him far more anxiety than they ever caused me; my only concern was how traumatic the experience was for him.
As I said though, this is not a symptom I have ever read about. Maybe this is why when Mr Man explained what he was experiencing to the staff in the hospital they didn’t believe him – they actually thought it was an act and that he simply wanted to kill me. He was told that if he killed me he would be held responsible for his actions and he couldn’t “get away with it” by claiming mental illness. My goodness, they must have had some good actors on the ward if they thought this was an act, because I have never seen a man so distraught in my life. Their suggestion that these thoughts were his own desires only distressed him further.
I know another Schizophrenia sufferer who has also experienced very violent intrusive thoughts. She also finds them very distressing. Although describing them in exactly the same way as Mr Man – as being inserted into her brain by an outside source and feeling that they are not her own thoughts – she feared that she was actually a bad person and felt a lot of guilt over it. She never told anyone at the hospital about these thoughts, and no one ever asked her because, I suppose, it is not part of their diagnostic criteria. It would have been helpful for her to know that what she was experiencing was part of her illness though.
I think it’s important to note that although Mr Man has struggled with, and eventually acted on compulsive thoughts and command hallucinations, he has never acted on these unwanted intrusive thoughts.
Does the presence of compulsive and intrusive thoughts mean that people with Schizophrenia are more likely to be violent? Are they “on the edge”, ready to snap at any moment? This will be discussed in the following article.
Mera Peak Funding Appeal
Promoting Positive Schizophrenia
Schizophrenia is a very destructive condition. Often, recovery is thought as 'near' impossible. A very high percentage of those diagnosed with schizophrenia are unable to work or live life without torment due to the demoralising and destructive symptoms. The mistreatment and management of the symptoms and the stigma and discrimination towards those who are diagnosed can be just as destructive as the disease itself.
Stuart Baker-Brown, a campaigner and activist for greater understanding and treatment towards schizophrenia was diagnosed with the disease in 1996. For many years he has been promoting his own positive recovery to inspire and offer hope to all those who share his diagnosis.
Mera Peak Challenge
In October 2008, Stuart will visit Nepal and attempt to get to the summit of Mera Peak 6500m. Mera Peak is very achievable for 'strong trekkers' and the capabilities of summiting without experienced mountaineering skills are high. Stuart has visited Nepal before and has successfully completed a trek to Everest Base Camp. He has already tried to summit Mera Peak in march 2006 but weather conditions were severe and so the challenge had to be abandoned. His achievements and story of recovery has been covered in the media.
We need your support
In order for Stuart to get to Mera Peak he needs to raise £3000. Stuart hopes that his potential summit will help to inspire the 51 million people around the world who are diagnosed with schizophrenia on their own personal journey of recovery. Stuart's own achievements and recovery has already helped many. Please donate generously and support Stuart's attempt to reach even 'greater heights' and send a very positive message of 'hope' to all those diagnosed with schizophrenia.
Please donate generously. You can make a donation via the One Mans Mountain website or contact Stuart Baker-Brown directly at-15 Acreman Street, Cerne Abbas, Dorchester, Dorset, DT2 7JX.
With your valued support and kind donation, Stuart can continue to inspire those who need a 'ray of light' in the demoralising and misunderstood world of schizophrenia.
Please help us make this attempt possible and help many on their own journey of recovery! To promote positive schizophrenia.
With our greatest thanks to you all.
Stuart Baker-Brown and the One Mans Mountain Team.
www.onemansmountain.com
