Chaos

Chaos is common. Not chaos theory. Or even the rather splendid radio Kaos. Just the haphazard vagaries life throws at us, one and all, that adds change and uncertainty into the best formed plans.

I've been looking after a lady, Christine, for a number of years. Actually, that's an unjust statement, I've not been looking after her, she's a delightfully feisty soul who's more than capable of looking after herself, thank you very kindly. But she's been referred to me on several occasions "for an opinion" by medical colleagues.

She's a lady who can be anxious. Now how to put this charitably; in the past she's had contact with mental health services, in eras when provision of psychiatric care was different from how services are delivered now.

Christine remembers the war. She remembers school children dying young, from infections. She remembers rationing. She remembers the miners strikes and the pit closures affecting her community. She remembers her husband's pneumconiosis and terminal illness, dying breathless and afraid. She remembers the unity and cohesion of her street and the community, resilient and united against "them," whether it was consellors or politicians or whoever. She remembers being a strong, strong woman having to fight time and time again for her and her husband and her childrens' needs to be met.

I find her thoroughly delightful company and have to consciously manage time when I see her, so consultations are clinically purposeful and I don't just while away an afternoon hearing her biographical narrative that's rich and engaging and utterly compelling.

I've had the opportunity (and needed) to read the exhaustive notes that have accrued, from many sources. It took a full afternoon. In the past, when she was challenging authority, she was seen to be paranoid. Neither her medical notes, nor her GP's Lloyd George files, nor her notes from a District General Hospital nor her obstetric records either suggested or documented paranoia. Yet, in the past, her psychiatric records document "challenging behaviour" through her being "confrontational." Her mood was assertive and she'd present time and time again to authorities to "get things done" which, in the 1970's, attracted a diagnosis of hypomania. And of personality disorder. And of anxiety disorder. And of schizophrenia.

Interesting.

Records and professionals support that she's never presented with hallucinations or delusions or thought passivity or formal thought disorder. She's never used drugs or misused alcohol. She's always been cognitively intact, and although not highly educated she's an exceptionally savvy, bright and insightful lady.

Christine's felt breathless, a lot, and has COPD so worries she's going the same way as her husband. Thus, she 'phones her GP and ambulances. A lot. she's comfortable pushing for what she sees as geeting her needs properly heard and attended to. She's 'phoned 17 times in one weekend. Her GP and our local A&E know her well. They invited my input explicitly to see if she's got Munchausens or if she's psychotic, but really through desparation because they're tearing their hair out over her.

She's well. Over the years, whenever I've seen her, she's been well. She feels anxious at times, she's terrible at using a metred dose inhaler so gets little real benefit from her inhalers and latterly has had several courses of antibiotics and steroids. She wants home oxygen but smokes. Her heavy smoking, with her COPD, is something her chest physician has talked through many times but she's adamant she's not going to change. But other than over valued ideas (and commensurate episodic anxiety) around her chest disease (which is understandable, given her husband's course, and that of many friends), she's mentally well. No obsessions. No compulsions. No delusions. No nihilism, no hopelessness, no catastrophic thinking, no depressive cognitions/significant cognitive distortions.

When I was a GP I really struggled with how to manage someone presenting frequently (e.g. several times a day) with a problem that concerned them, but wasn't clinically concerning. I've therefore every sympathy for her GP who's a real saint and far, far more tolerant than I could ever be.

Contriving to say it's a psychiatric problem isn't helpful. Clearly she doesn't have schizophrenia and never has. Her persistant diagnosis of personality disorder really doesn't seem justified, at all. Folk didn't like her behaviour, so labelled it as an illness.

I'm putting this down now, because things have been stable for almost a year, now. I was seeing her at home daily at one point. My psychologist was involved but achieved nothing, so they mutually and affably agreed to part ways. Christine doesn't have faith in what nurses say so my CPN, despite being excellent (and far better than me at the support) wasn't able to be helpful. So I saw her, a lot. Then 3 times a week. Then once a week. Then once a month. Then 4 times a year. Maybe I'll get to every 6 months this year. She 'phones once a week and leaves messages with my secretary that I can attend to (which is part of the plan we've agreed) so any non-urgent symptoms or changes that play on her mind can be shared with me. But all her 'phoning GPs and A&E attendances have stopped, the last contact being June last year.

It's an odd position to be in. I've invested a lot of time, initially, into meeting with her and her Consultant Physician and at her GP surgery with the partners, then seeing her an awful lot, and still seeing her episodically, when she's no psychiatric problem evident what so ever. But I deceive myself that rather than doing this to contain her behaviour and help her GP, I delude myself that I'm supporting her and alleviating distress, so doing something to maintain her mental wellbeing.

The fact that she's a feisty soul who's charmingly good company's irrelevant, surely!

IPOC

Do you have Integrated Pathways of Care (an IPOC) or Integrated Care Pathways (ICP) as protocols, governance frameworks, audit tools and clinical records all rolled in to one?

I used to write on blank paper. Life was simple.

Now we've care pathways for oodles of things. Each has its own booklet to fill in with squillions of boxes. Have you documented that you've assessed capacity in the Capacity box? Have you signed and dated this? Have you initialled and dated the "discussed managed choice" bit and listed what options were proffered? Have you recorded biochemical indices before initiating an antipsychiotic? Have you commented on the ECG you then invariably undertook, since the patient's on an antipsychotic?

I can see the point of them. They focus in on what one version of best practice is, lists every single element of this, then guides you through each and every step which you document, laboriously.

Much of the paperwork is redundant (do I really need a list of approved abbreviations for each care pathway in each set of filed documentation each time it's started?) making them lengthy. Case notes have increased in size appreciably.

But, not just case notes. I see a patient in their home, do I start care pathway documentation in the community? I guess I probably should. Hang on, then, how's my CPN going to follow it up since she won't have my written medical notes (since the CMHT have their own electronic records). What about day hospital attendance when things are fiddled with? Or in-patient episodes? Gah, the care pathway isn't one record with continuity and contemporaneous documentation at all then, is it?

What if a patient has, say, hypomania? They're admitted informally and receive help. But the documentation becomes hideous. We've a care pathway for the admission, a care pathway for the antipsychotic, a care pathway for the mood stabiliser, a care pathway for the discharge. We've care pathways for ECT. Each care pathway requires, at length, that every element of every step of care is documented, timed/dated and signed.

I hate it.

Not the framework, per se, more the compartmentalised documentation. I look at an antipsychotic pathway then find in the notes the one for lithium use, then the admission one with physical comorbidity and medication and so on, information's scattered all over the place. That, above all else, is what I loathe about care pathways. This fixation with form and process loses the context and detail.

What's it like for the person, today compared to yesterday? What's changed, in terms of how they're now able to sit having a fag in the garden and chatter to folk about what lumpy custard we had at lunchtime (when last week behavioural repetoire was much more constricted). What does their nearest and dearest reckon's changed? Where does it allow us to document that, now, there's a desire to choose ones own clothing when offered a choice? There're lots of bits to document suicidality, but nowhere does it allow documentation of ataxia and falls risks, or dysthmic changes and feeling hacked off and irritable, or consequences such as delirium or akathisia causing wandering at 5.00am in a night dress across and along a main road.

Information is now incomplete since only what's requested is documented and other (more relevant) information is no longer documented. Information is fragmented, being compartmentalised in to different areas. Information is factual and procedural and specific, so lacks context.

Having started using care pathways a year or so ago, I've managed to avoid them totally this year. We're in to June now, half way through, and nobody's told me off yet. Hopefully I can get away with it for another few decades, eh?