Living outside the system – a dangerous place to be?

At the moment, I am helping with the care of an interesting patient at work.

It is not really her condition which is fascinating me (although it is an interesting pathology) but more how the system is coping with her, as an individual.  Her choices regarding her healthcare provision donot fit with ‘the system’ – that is, they do not fit with the way that care is delivered at present where I work.  

Normally, a joint clinic would deal with her problems, and this clinic is held in an area of the hospital which this patient is unwilling to enter – for very valid reasons – which are not relevant to this blog.

What is interesting is that the system which has been set up to help patients does not suit this woman’s personal choices.  The system, however imperfect it might seem, provides a framework within which doctors operate, and know how to operate.  It is also how the institution providing this patient withcare ‘knows’ how to operate.

So now we have a patient who has come to the right place, which is set up to deal with her problems, but because she has chosen to exist outside ‘the system’ certain aspects of her care have been delayed, and may not have been optimal, and equally may not be optimal in the future.

Not a huge problem – I can chase around, re-arrange and re-book tests, phone the patient to ensure she can make it to alternative clinics (which are really for other patient groups, but can accomodate him) But what would happen if every patient made similar choices – decided that the system could bend to their will, and their convenience?

Now, I am not advocating a return to the bad old days of paternalism, and patients being grateful just to be seen, within a year of being referred to a hospital – but this experience has highlighted a tension between how we set up healthcare ‘the system’ which allows us to manage risk, reduce errors, standardise care pathways and diagnostic workups… and that of patient choice, and trying to accomodate those who do not choose to follow or engage with the standard way of working.

Already colleagues have expressed concern that operating outside ‘the system’ means that the usual safety nets don’t really exist for this patient – and that her case will be difficult to manage optimally (something which is really quite important with this particular illness)

I suppose what I am wondering is; which is top trump?

#standardised care to enhance patient safety?

or

#personalised, flexible care which enhances patient experience?

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