Thursday, 25 November 2010

An Encounter with Grendl

I wrote about Perdita in my post “The Section 2 That Wasn’t” in January 2010. She has a diagnosis of Emotionally Unstable Personality Disorder and Dissociative Identity Disorder. She has several alternate personalities, including Grendl, who is extremely wild and destructive and angry, and Mavis, the “normal” one, whose job is frequently to clear up after Grendl.

Since that MHA assessment, a change of staff in the CMHT meant that I became Perdita’s care coordinator. Perhaps surprisingly, in view of that event, she did not object to this. In fact, she told me that because I had handled the situation in the way that I had, she felt she could trust me.

I’ve got to know Perdita quite well. Splitting her self into several discrete personalities appears to be her way of managing the intolerable emotions which arose as a result of her severe childhood abuse. There are certain triggers to her “checking out”, as she describes this process of extreme dissociation, during which one or more of her other “parts” manifest themselves. These usually involve stressful situations which she finds impossible to cope with, as they touch raw nerves relating to betrayal: anything to do with being let down, or an event that is likely to provoke extreme anger, can trigger these episodes.

Dissociative Identity Disorder (which used to be known as Multiple Personality Disorder) appears to be far more common in the US that in the UK, at least, if published literature is anything to go by. The DSMIV definition requires “the presence of two or more distinct identities or personality states”. These identities or personality states must recurrently take control of the person's behaviour. The patient must also experience an “inability to recall important personal information that is too extensive to be explained by ordinary forgetfulness”. Physiological causes, eg. epilepsy, or the effects of drugs or alcohol, have to be ruled out. In my professional career I have only encountered three people with this diagnosis.

I used to be somewhat sceptical about the reality of this disorder until I actually started working with people with this mental health problem. Having seen Perdita displaying these different personalities, I am convinced that she is not putting on these episodes, and genuinely has no control over what happens when the other parts manifest themselves. I have met Mavis, who is charming and polite, and a pleasure to work with. I have also met Mary, who is a small child, who can be mischievous and playful. I had heard all about Grendl, the really angry and destructive one, but had fortunately not actually met her.

I work with Perdita on the basis of damage limitation. I try to help her to manage the mood swings which are a feature of emotionally unstable personality disorder. We work together to identify and avoid triggers for her dissociative episodes. We especially try to keep Grendl under control.

But things don’t always work out.

One morning, I had a call from Perdita.

“I’m afraid,” she said. “I’ve been let down big time by someone.” She told me the details. It sounded bad. I had a sinking feeling. “I can feel myself going. I’m afraid I’m going to check out. I’m afraid Grendl’s going to take over.”

We talked this through for a few minutes. I suggested a range of risk management strategies that we had put into her care plan. But I had the feeling that “checking out” was going to be unavoidable.

A few minutes later, I got another call. This call consisted entirely of maniacal laughter. I guessed that it must be Perdita, having checked out. I tried to get through to her, but the chilling laughter went on and on and on. After about 10 minutes, I realised I was not going to get any sense out of her, and put the phone down.

The phone rang again. More scary laughter. The caller then introduced herself.

“It’s Grendl here,” she said. “It’s such fun. I’m having a great laugh here! I’ve really cut the bitch to pieces this time!” Then she hung up.

I didn’t bother to try and get hold of a psychiatrist. It would cause too much delay. I went out immediately, dragging one of my somewhat reluctant colleagues with me, just in case. It was going to be necessary to concentrate on limiting potential damage – damage to Perdita, damage to her house, damage to her daughter, damage to other professionals…

We could hear the laughter from outside the house. The front door was ajar. I went in without knocking, and we cautiously entered the living room.

Perdita was sitting on the sofa, rocking backwards and forwards as she whooped with laughter. She had an open pair of scissors in one hand, and her other arm was covered in lacerations. There was a fair amount of blood, so it was hard to see how serious the cuts were.

“Give me the scissors, please, Grendl,” I said as calmly as I could.

“You’ll have to give me three good reasons!” Grendl replied, and slashed several more times at her arm.

I realised I was going to need assistance. I wanted to avoid a hospital admission if possible, but I did need back up. I used my mobile to ring emergency services, and asked for an ambulance and the police to attend. I tried to explain as objectively as possible what was happening, but it wasn’t easy with Grendl’s intolerable laughter filling my ears.
Give me the scissors, Grendl,” I repeated, while I waited for the ambulance and police to arrive.

“Give me three good reasons!”

“I’m not getting into any games. Just give me the scissors.”

I waited nervously, keeping at a safe distance, until the ambulance arrived, and two paramedics came into the room. The police arrived almost at the same time, and the room was soon full of people in uniform.

Grendl loved it. “You’re very tall, aren’t you?" she said seductively to one of the paramedics, who was indeed exceptionally tall.

He asked to look at her arm, but instead, she slashed away at it again, occasionally holding the blade against her throat, as if she were holding Perdita hostage.

“Give me the scissors,” I said again, in as gentle and unthreatening a way as I could manage in the circumstances. The police and paramedics kept quiet, waiting to see what would happen.

“You’ll have to give me three good reasons!” she said again.

I was going to have to play her game after all. “First, you’re hurting Perdita. Second, Ophelia will be upset if she finds you like this.” (Ophelia was her 14 year old daughter, who was still at school.)

“That’s only two reasons!” Grendl cried, giving her arm a few more slashes.

“And third, you’re scaring the hell out of me!” Being honest often works well in these situations.

She thought about this for a moment.

“Okay, fair enough,” she replied, and threw the scissors onto the floor. Grendl could be reasoned with, after all. I kicked them away, and one of the police picked them up.

“Grendl, I really need to speak to Perdita.”

“Perdita’s gone away. You’ve got me!”

“I need Perdita. We need to get your arm sorted out. And Ophelia will be home from school soon, and I don’t want her to find all this.”

There was a pause. Perdita’s face sagged and went blank. Her head leaned forward. Then her head snapped up and the eyes of a small lost child stared into mine, tears running down her cheeks. She looked absolutely terrified, staring with fear at the room full of people.

“Hello there,” I said gently. “Can I see Perdita. Or Mavis. Either of them would be good.”

Her face went blank again and her eyes closed for a moment. Then her face changed. She opened her eyes.

“Oh, hello, Masked AMHP,” she said, a little surprised, looking around and taking stock of things. She looked at her arm. “Is it Grendl? Has she been out?”

I recognised Mavis. She would do. She would be able to sort things out. She rolled herself a cigarette and then smoked it while she allowed the paramedic to examine her wounds, and clean and dress them. “My, you’re tall, aren’t you?” she observed. After all, Mavis had not seen him before.

“Masked AMHP,” she said. “It’s so nice to see you again.” It was uncanny, but Perdita’s face, mannerisms, and even accent, were quite different when Mavis was in charge.

I negotiated with her. I asked her to stay in charge until Perdita could return. I told her that I would come back later in the afternoon when her daughter was due home, to see Ophelia and explain what had been happening (she was, sadly, used to these episodes), and to check that Perdita/Mavis was safe and in control. Mavis listened to me obediently, making meticulous notes from time to time.

My analysis of the situation went something like this. It made a sort of sense. Once Perdita or "Mavis", the sensible one, can be induced to return, the crisis is usually over. "Mavis" herself was confident that she could remain in control. Her wounds were examined and did not require hospital treatment. Hospital admission is best avoided during these crises, and the Crisis Team also have little role to play in these situations, once the immediate crisis has passed. It would not be appropriate to use the Mental Health Act, and would undermine any trust Perdita had in me. The police would notify Children's Services of the incident, who could be mindful of Ophelia’s needs. Ophelia could stay with her father if required, but would invariably prefer to stay with her mother, and would be under less distress if she was with her mother. It would not be in the immediate interests of Ophelia to separate her from her mother.

The police and ambulance crew withdrew. I said goodbye to Mavis and reminded her I would be back later to check up on the situation.

And in the midst of mayhem and madness there is (unintentional) humour.

As Mavis pulled deeply on another cigarette, she said to me: “Masked AMHP, when you see Perdita next, could you see if you can persuade her to give up smoking? It is such a disgusting habit.”

Friday, 12 November 2010

Diogenes Syndrome and the Mental Health Act

Members of the public often become very alarmed and even affronted and incensed about people in the community who chose to live in unusually squalid or insanitary conditions. Complaints may be made to the police or social services, with demands that “something” must be done about them. In extreme cases, there can be considerable media publicity about people found dead in their homes surrounded by filth and clutter.

Social Services are often the first to be contacted about such people, as are secondary mental health services. Over the 35 or so years I have been a social worker, I have worked with many of these people. While the majority of them exhibit signs of eccentricity and often an unwillingness or inability to engage in social interaction with others, I have found few of them to have had any significant mental illness or disorder. Often, the focus of work with them has been, not necessarily to significantly change their living conditions, but to support them in the way of life they have chosen while trying to reduce risks to their health and safety, and to protect them from the antagonism of the local community.

I’ve already written on this blog about a couple of cases where I have assessed people who were living in conditions deemed unacceptable or hazardous: Harry, an elderly man, whom I wrote about in July and December 2009, and Stella, a middle aged woman, in October 2010. The psychiatric grounds for detention of Harry were tenuous, and Stella, although eccentric, showed no signs of mental illness.

I was recently asked to assess Bernard, a man in his 50’s who was living alone in such conditions. His GP had made an urgent referral after being called out to him by the local Police Community Support Unit. She reported that: “The house is uninhabitable and is a health risk to the patient and his neighbours. There are strewn newspapers and garbage piled high to the ceiling in the rooms, the walls are coated with black dirt. His feet are purple and his toenails are about 10 cm in length. I could not see beyond the dirt on his feet to tell if he has gangrene. He will need a mental health assessment for the possibility of Diogenes Syndrome.”

Pretty nasty, then. Very alarming. Something certainly had to be done. So I decided to see him for a preliminary assessment with a nurse from the CMHT. In the meantime, something niggled at me. Bernard? Bernard? Hadn’t I assessed someone under the MHA in the dim and distant past with that name? Looking through my records, I discovered that I had indeed assessed someone of the same name and age, but with a different address, all of 18 years ago. I had a dim recollection of the circumstances: he had been living with an elderly aunt and uncle who had both died and he was in the process of being evicted from their council house as he did not have a tenancy. All I could now recall was that I had not detained him under the MHA, and he had not become a patient of the CMHT.

When we arrived his front door was open and he was standing in the lobby with a pile of shoes in front of him trying to find a pair that would fit. This meant that we could see the state of his feet. I could confirm that his toenails were actually only 1 or 2 cm long ( ½ inch rather than 4 inches), and that his feet were extremely dirty. He eventually managed to put a suitable pair of shoes on and was able to attend to our visit. He had long, greasy hair, a straggly beard partially obscuring his grimy chest, and was wearing a stained and filthy waxed jacket, and, as far as we could see without looking too closely, very little else.

Although he invited us into the flat, in view of the smell emanating from the open doorway, and the fact that the door could only open a little way because of the junk in his hallway, meaning that we would have to squeeze through the narrow, and very dirty opening, we decided to conduct the assessment in the lobby outside.

Throughout the assessment, he presented with excellent recall of dates and events throughout his life. He immediately recognised me from our encounter 18 years previously, and recalled the exact year and the circumstances. He was orientated in time and place. There was no evidence of dementia.

In fact, on interview, Bernard presented with no evidence of mental disorder. He certainly fulfilled the criteria for a diagnosis of “Diogenes Syndrome”, but as I have observed before, that is not in itself a mental disorder. There was no evidence of psychosis or delusional thinking. Objectively he did not appear depressed, and stated that he did not think he had any mental health problems. Although there appeared to be a history of anxiety, he did not present as anxious, and in fact welcomed the opportunity to converse with us. He did not express any significant concern about his living conditions, although did admit that the house was untidy, and did not feel that he needed any help to sort it out. In short, despite the objectively appalling state of his living conditions and personal hygiene, there was no evidence that this had arisen as a result of a mental disorder, and there was consequently no evidence at all that could justify his detention in hospital under the Mental Health Act. Indeed, he did not even meet the eligibility criteria for receiving services from the CMHT.

An interesting article in Clinical Geriatrics (Volume 13 - Issue 8 - August 2005: “Diogenes Syndrome: When Self-Neglect is Nearly Life Threatening” -- Badr, A, Hossain, A , and Iqbal, J) gave a similar case study. Although concentrating on the geriatric aspects of Diogenes Syndrome (most of the people I have seen have not been elderly) the article reaches some interesting conclusions. The authors quote Karl Jaspers, who: “proposed that this condition does not constitute a newly occurring psychopathological entity, as the whole picture is understandable from each subject’s personality and stressful life events. He emphasized that the characteristics of the premorbid personality play an integral role in the pathogenesis of the syndrome. His view of this syndrome was that it represents a lifelong subclinical personality disorder, probably of a schizoid or paranoid type, that turns gradually into gross self-neglect and social isolation.” In other words, it is something that can slowly creep up on slightly odd people over a long period of time

This analysis would certainly accord with my own experience of people with this presentation, and would certainly apply to Bernard, who reported that he had received psychiatric care, including ECT, as a teenager, although it was unclear why, and until his aunt and uncle had died had always lived in the households of others, and had therefore probably never acquired the skills to maintain his own household.

So what could be done with Bernard, and others like him? Since he could not be said to lack capacity, the “best interests” powers under the Mental Capacity Act, which permit people to take actions on behalf of a mentally incapacitated person on the basis that the action is in their best interests, would not apply to him. People have a right to make “unwise decisions”, providing they have capacity to do so. This could include such “unwise” actions as drinking too much alcohol, marrying someone you hardly know on a whim in Las Vegas, or refusing to wash for months or years.

Possibly the only route to addressing Bernard’s circumstances through legislation rather than gentle persuasion would be Sec.47 of the National Assistance Act 1948, which provides powers of “removal to suitable premises of persons in need of care and attention.” Although it might be thought that an Act created by the new landslide Labour Government just after the Second World War would long ago have been repealed, this still remains on the statute books.

This is a legal power that is quite often talked about in social work circles, but very rarely used. It has to be established that "The person is suffering from grave chronic disease OR being aged, infirm, or physically incapacitated, is living in unsanitary conditions AND the person is unable to devote to himself and is not receiving from other persons proper care and attention AND his removal from home is necessary either in his own interests or for preventing injury to the health of, or serious nuisance to, other persons". If all of these conditions can be satisfied, the person can then be taken to a hospital or a care home for medical treatment or care against their will.

I have only ever been involved in one such case in my entire career, and that was over 30 years ago. It involved an elderly lady living alone who was no longer able to manage and was becoming increasingly frail and weak. Although she did not have dementia, she consistently refused all offers of help and support. An assessment under Sec.47 of the National Assistance Act 1948 was undertaken, involving a “community physician” but when it came to it the lady, clearly impressed by this doctor’s title, agreed to go into hospital voluntarily.

However, even this power is now more than likely to fall foul of more recent legislation. The Department of Health has suggested that Sec.47 could be in breach of the Human Rights Act. In a brief guidance document published in August 2000 ("The Human Rights Act, Section 47 of the National Assistance Act 1948 and Section 1 of the National Assistance (Amendment) Act 1951"), it reasonably notes that use of this section may breach Article 5 – the right to liberty, and Article 8 – the right to respect for private and family life. So gentle and persistent persuasion to accept assistance probably remains the only option for trying to help people like Bernard.

Phew! A bit of a dry and technical post today, perhaps. Back to foul language and more threats of bodily harm to AMHP’s next time.