What sort of patient are you?

First off, apologies to my pure-bred disability activist friends this is going to look like its steeped in the medico-legal model rather than the evolved social model... But you may like seeing where I go with it...

I was asked by a colleague about whether there was any training for a relative on handling their recently diagnosed diabetes... and after the usual nudges towards Diabetes UK, I started reflecting on the stages of being a patient, and though I'm sure there's a lot written by psychologists I thought I'd throw my tuppence into cyberspace...

A Pure Patient

When we discover we're a patient we're just that a patient - we need to go to a doctor, find out our prognosis, what we can do to help mediate our conditions - we're pure, we may have some previous experience of others with our condition but as it affects us, none...

An Informed Patient

We've joined the support group, we've read the information pack, we're carrying the passport/wallet/sos talisman/medic alert... We know the treatment we should get and and know what to do if we don't get it.

An Expert Patient

This is where is starts getting controversial, a lot of people will say Expert when they mean informed... The gap is the psychology part... Let me try and explain

The original Expert Patient Programme (EPP) was a 12 week scheme designed to take informed patients and take them to the next level, where they manage and understand themselves and their conditions. They know the impact of mood on their conditions, know that sometimes their control may not be perfect, but know that they are human and occasionally need that slippage.

I can't put it any better than this:

"This chapter introduces the concept of expert patients – who enjoy good quality of life despite
chronic disease; who have the confidence, skills, input and knowledge to play a central role in the
management of life with chronic disease, and to minimise its impact on their day-to-day living.

From: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4018578.pdf

For me the moment I became an Expert Patient was when my GP asked me how I should manage down a blip in my blood glucose... rather than telling me that I should eat less X or Y.

The next stage is my own, I've not read it somewhere and will probably get slated for it...

Weaponised Patients

We're not toxic patients they are the opens who shout and scream, demand a private room etc etc etc.

Weaponised patients are the ones who have the information, manage their own conditions, deal with their medical experts as equals and then take the next step...

The next step is getting involved in designing their services, at a local, regional, national or international levels...

Like all weapons they know only to use their full range of skills when the need is there, there is no pointing shooting off at the mouth all the time as people will get bored. We're the ones who end up on GP reference groups, running our support groups, being involved in our NHS trusts management structure etc etc.

The problem is the line between Weaponised and Toxic is very fine... can you look beyond your own experience and draw together the opinions of many, can you wade through document after document and make sure you know them so you can explain them to others... and can you go eyeball to eyeball with an expert in a specialist centre and tell them they're wrong, they don't understand what its like to be a patient as they do the proding rather than being prodded... and do it in such a way that educates an expert rather than alienating them?

There is also the fact that you, I and everyone can move between these "states" quickly, depending on the time of day, how lunch has settled and what news the medic is giving you.

Weaponised patients are quite rare, mainly I think because it is tiring, very tiring... And managing that is something that the EPP didn't cover.

Is there a less militaristic term for weaponised patients? Advocate, as a term, has been overused, misused and abused... so find me a name...



ps the self awareness thing kicks in at odd times, so I've just realised that I blog more when I'm doing more exercise... 50 miles in 5 days... only 11 left to the 1000


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