26 May 2008

SW Newsletter #36

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May 26th 2008

Marion’s hospital blog

Welcome to the Star Wards’ newsletter and a warm welcome to the new members of the Star Wards’ community, including our new members in the Isle of Man and Australia!

This fortnight’s e-newsletter is very different to usual, because rather than enthusing about wards I’ve visited, this features my own ‘blog’ from my Easter break/field trip/participant research/admission on my local acute ward. I’m not exactly an ‘easy’ patient, what with the self-harming, ‘laid-back’ view of hospital rules etc. (I can almost feel the sighs of relief from members around the country that patient choice doesn’t extend to psychiatric inpatients so your crisis team won’t be delivering me to your ward in the foreseeable future….) Last time I was in hospital the only interfering I was tempted by was to rearrange the staff rota, based on my long-ago experience managing learning disability services. But of course this time, I had more than 400 examples of great inpatient care and had to concentrate very hard to remember that there was actually a fairly substantial clinical reason for my admission.

So. Here’s my ‘blog’, mostly written when on the ward with a few reflections when I got home. It may look long… but there’s an even longer version on our website!

 

Marion’s hospital blog

It’s been a week since I came in (voluntarily this time!) to my local hospital. A pretty traumatic week, what with the emotional stuff that made me realise I couldn’t be at home over Easter, and the demands of being on an acute ward faced with overwhelming challenges.

Over-occupancy

The biggest challenge for the ward is that it has 19 beds and 35 patients, with 22 women currently living on the ward. Three patients therefore don’t even have the little parcel of space in one of the dorms, but instead have no delineated private space at all and sleep…. on the sofas in the very small lounge. Generously and poignantly, three other patients who are semi-nocturnal let the sofa-surfers sleep in their beds while they pace, or race, the ward half the night. Cox and Box on the NHS in 2008. Of course, with this level of pressure, only people who are in a really bad state can be admitted, which makes a crowded ward – um, well this is a blog not an inspection report, and the most accurate way of describing life here is that it’s totally nuts a lot of the time, day and night. Deeply stressful for patients and staff and utterly mind-blowing for visitors.

Staff

The staff are incredible. When I was sectioned 3 years ago I was impressed and touched by how tolerant and non-judgmental they were. It’s largely the same staff team still, and luckily the same lovely ward manager. But patients are much much more disturbed than those I was with for a month last time round. As a patient, I particularly feel the impact of this in the noise levels and the frequency with which patients come into my room day and night. The cumulative invasiveness of both of these is very wearing.

But coming back to the staff. Things have quietened down as the week’s gone on, but at first there were explosions of noise, frustration, anger etc every few minutes. The remarkable thing or one remarkable thing about the ward is that the nurses cope with every incident, however extravagant, simply by talking and being with the person. Lots and lots of reassurance, listening, soothing. And plenty of skilful steering of people away from others they’re in conflict with. There are, inevitably a few exceptions, but most of the staff seem to have infinite patience, understanding and kindness. There are two words which, naffness aside, do really capture for me how special the staff are – compassion and sweetness.

Specialing

Perhaps because of the numbers of patients and the acuity of their (our…) illness, or perhaps because of the ward philosophy, or both, there’s almost no specialing, and when it happens, it doesn’t seem like the endless, tedious, futile specialing I’ve

experienced for weeks the previous times I’ve been in hospital. Instead, one or two staff will stay with someone who is in a really bad state, helping them to feel more settled and providing a bit of a buffer between that person and other patients. Then they’re left to relax, often with other patients as well as staff regularly checking whether they want company or anything else.

Conflict

I need to give the following more consideration and also to look up the facts! But it’s nice to have the latitude to pontificate without the burden of research evidence. It strikes me that violence is the primary focus of what’s really difficult about wards eg with research, conferences, training etc. And it might be that this is patients’ main concern. Or it might be the main concern of patients on mixed or male wards.

But despite the phenomenal volatility of the ward, and aggro that looks like it could escalate into a punch-up, the prospect of being hit by a patient seems remote now I’m here, and has never previously bothered me. Conversely, I’d be terrified to be on a ward where staff were liberal with their use of coercive treatments – rapid tranquilisation, seclusion etc. The one thing that always jars, and upsets me, when I visit great wards and hospitals is that most still have seclusion rooms. Nasty, bleak, tiny, mean, primitive, inhumane, punitive cells. The ward I’m on is environmentally impoverished. Old and decaying. But there’s no seclusion room. And there seems to be no access to PICU facilities for the patients. Yet I haven’t seen, heard or heard about a single occasion that ‘coercive treatments’ (C&R, RT etc) have been used. Of course,

the patients could be over-medicated as a containment measure. But from what the most ill patients have said, and mainly from seeing how intense their behaviour is, over-medication doesn’t seem to be an issue at all.

Visitors

Friends and family have been brilliant about visiting, especially as the mitzvah (good deed) has fallen disproportionately on pals who haven’t gone away over Easter. They’ve all been amazing about instantly adapting to the madness of the ward, and at least appearing unfazed by some pretty crazy behaviour. One of my visitors suggested there should be a machine at the door dispensing tranquillisers for visitors. I’m not sure, but suspect that friends find the whole locked door thing somewhat discomforting, and they probably think it’s awful for me being on a locked ward. In fact, it mainly doesn’t bother or even occur to me, sometimes reassures me and only gets to me when I want to leave to get geared up for an overdose.

My friends Lorna and Ron who are Buddy’s daily dog-minders are looking after her while I’m here. They bring her to visit every day. It’s possible there’d be a lot of argy-bargy about this but because of her ‘support dog’ jacket, the staff have been fine. Oh. Apart from the time when Buddy stayed overnight! It was absolutely wonderful for me deeply comforting and normalising, and patients and most staff loved her being here. But I got an official bollocking from the ward manager the next morning, a small penalty for the pleasure I had from being able to snuggle up with Buddy all snowy night.

Carers

A (gentle and diplomatic) criticism that’s sometimes made about Star Wards is that we give so little attention to ‘carers’. This is probably a justified point, and the absence reflects my own experience – that of the ‘absconsion’ from my life of my ‘carer’, my

partner of 20 years, Sylvia, which is at the heart of my depression. I am nevertheless blessed with many deeply loving, supportive, challenging, politically incorrect, tenacious, empathetic, hilarious friends and relatives. This makes me feel that the focus on ‘carers’ is too restrictive. Obviously not in terms of meeting carers’ own needs for support, respite etc. But in terms of meeting inpatients’ needs. My hunch is that the dominant dichotomy of carer:no-one caring, is inaccurate and unhelpful. It feels like it would be more relevant and constructive to include patients’ close social networks at those junctures where at the moment only fairly traditionally defined ‘carers’ are considered.

Activities

Unlike my stay here three years ago, there are now group activities on the ward most days. Unfortunately I’ve missed all of them because of visitors etc. But I saw a bit of the pampering session one afternoon and it was clearly a huge success. Lots of the women were animatedly taking part and the fab nurse doling out and advising on the cosmetics etc also seemed to be having a blast.

Relationships with other patients

During each of my hospital admissions, having at least one close pal on the ward has been the most important element of coping with and sometimes enjoying the situation. This time, having K as my big pal has been amazing because she’s so articulate,

interesting, witty, creative, loving and considerate. It’s been fantastic developing an instantly close friendship with K, which I hope will flourish when we’re both back home. But her ‘parallel universe’ makes it difficult for me to be able to understand what she’s really meaning and it often feels a fine line between completely accepting what K is saying and being, or appearing, patronising.

 

I find the constant presence of, mainly ‘uninvited’, patients in my bedroom more than enough companionship, so never go into the lounge. I therefore have a relatively limited number of pals on the ward, but, at the risk of being too schmaltzy (sort of mawkish), most conversations I do have are very enriching. The extremity of our emotional states, life situations which have contributed to or created the crises, and of the ward itself, means that we tend to talk about heavy stuff. It feels an amazing relief to be able to share (edited elements of) mine and good to be sufficiently trusted that others tell me about often harrowing things they’ve been through.

Last time in, both the most therapeutic interactions/conversations, and the most frustrating ones were with staff. My contact with patients were somewhere in the middle – enjoyable, comfortable, very important and distinctive but not as intense as the stuff with staff. But this time round, the primary factor affecting how I feel on the ward is how other patients are behaving. And much of this experience is highly aversive, given how ‘very unwell’ as staff gently put it, patients are. Much more brutally, one could say that many are really disturbed, and disturbing. I feel crap about this as so much of my values, work and tendencies draw me to lots of bonding with other patients. And absolutely not the judgmental, rejecting aspects of how I feel about my fellow wardniks.

But. It is very complicated and demanding simply to cope with the mix of personalities, emotional disturbance and distress. And it requires vast amounts of energy to understand the meaning behind ‘parallel universe’ conversations, to comfort people who are deeply distressed and hear about the traumatic life events that people have been through.

More selfishly, noise levels which a heavy rock band would be proud of and the constant bursting into my room and making requests, 24/7, have been overwhelming. The intrusion of noise and bodies is the macro stuff. The micro is the individual conversations, sights, incidents etc that trigger strong feelings, especially if they create an involvement dilemma for me. The most minor discomfort comes from the simple but frequent (non) interaction where I smile and say hello to a patient and she completely blanks me. (Yes, probably because she’s very ill/disoriented but perhaps also because she hates me/midgets/socially intrusive people etc.)

Then there was the perpetual issue of the extent to which it’s ‘appropriate’ to move down the far end of the ‘supportive patient’ continuum – at the point where it merges with staff responsibilities. The less conflicting occasions are where patients are super-distressed, agitated etc and for whatever reason, not responding to gentle, caring responses from staff. It turns out that perhaps simply by not being a member of staff, and definitely if the patient is a pal of mine, it takes very little reassurance and encouragement to enable them to get to a ‘better space’. (Several times this better space is off the floor, into their bedroom and covering up naked parts of their bodies.)

More mundanely, I’ve been horrified that my usual unpuncturable laid-back responses to provocation haven’t been able to withstand the frequency, irrationality and perpetual discourtesy of patients crashing into my room. My worst lapse was yelling at a young patient to “fuck off”. The difference in all the socio-demographic measures between us made my outburst feel particularly unacceptable. And, as with most inappropriate responses, only temporarily effective.

And now I’m back home, I particularly wish I’d had:

  1. a lock on my bedroom door, which obviously could be easily unlocked by staff. This would have made by far the greatest difference to my stay, as it would have shielded me from so many of the aspects of ward life that have been so difficult
  2. a fitted undersheet. Sounds trivial but the small flat sheet slides away from the plastic mattress within seconds, followed rapidly by the rest of the bedding. I’ve been sleeping relatively well, albeit sometimes with the (placebo?) help of Lorazepam. But most patients seem to suffer substantially from sleep disturbance, and could do without bed-linen anarchy.
  3. Buddy
  4. George Clooney

And now, a few weeks on, I’m even more appreciative of the staff and how they don’t just cope with or ‘survive’ each shift, but manage to harness their professional skills and personal qualities to enable patients to feel safe and cared for in an inexcusably under-resourced, over-pressurised environment. Even with very awkward patients!

 

All the best

Marion

 

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