Another thing NICE promotes but I feel fails in practise is the use of 'care plans' also known as 'management plans'.
I raised this at our recent meeting with the commissioners to be told that several attempts had been made to make use of such things for people with long term conditions (essentially both a record of treatment, who's involved, and any strategy including personal goals etc.) but they had not proven successful which I took to mean they couldn't quite figure out how to do such a thing when each 'department' is working often from different computer systems.
However, NICE are very keen on using such things and I'd personally like to see them evolve into something akin to a 'contract of care' if you like. An agreement with all those 'multi-disciplines' who are supposed to be involved (across health and social care) that lays out your progression through the system.
I can't see any reason why patients and GPs could not maintain such plans and I know they are certainly used in respect of other conditions though not for all patients. It would help a patient to see how their care is being structured and could prove a great help.
There are plans afoot to enable patients access to their own medical notes via the internet (heaven's forbid imagine how that will get cocked-up) - indeed this has all ready proven the case in respect of some GP surgeries in the land - if that is to happen then why not care plans too?
Makes no sense to me that NICE should be promoting them on the one hand and then in the trenches they are being seen as impractical. Realistically I strongly suspect they see them as being 'too much of a challenge'. Idiots!
Afore I go.... one more thing. NICE doesn't specify the degree to which follow-up appointments/reviews should occur whilst someone is disabled by their ME. I think this is an important 'missing' factor.
As is the need for consideration to be afforded to co-morbidities. Such things would be picked up (in theory) only by regular reviews.
Oh buggar! Thought of something else now. Bad case of verbal diarrhoea this evening it would seem
And as I said before - the NICE Guidelines are very scant in regard to what exactly a 'specialist service' should actually be. They mention the involvement of neurologists, immunologists etc. but it's very much on an ad-hoc 'only if you are able to afford it' basis.
There is no 'model' service provision and whilst this could raise some controversial discussion (though it isn't as if we as patients or '
service users'* haven't all ready had these discussions) I do think that NICE should point the way, should indicate to the commissioners how exactly multi-discipline care should be applied in all cases.
When all that cash was dropped on local PCTs from da government to provide a specialist provision they were left to their own devices when it came to implementation. No follow-up. No review as to effectiveness. No 'model' approach. No guidance. Buggar all really.
And now all that money has run out (some time ago and perhaps even diverted - oooo scandal conspiracy
) and the Government is pumping funding into long term psychological management for long term conditions and very little else outside of acute care - we really need to bring pressure to bear in this regard also.
Aw crap. I could be gainfully employed for several lifetimes pursuing all this stuff and the worst thing is (although I do think I '
know my enemy' and therefore have realistic expectations) I am no longer convinced any of it is worth it. Perhaps because of those realistic expectations. Who knows?
I have learned though not to be too disappointed by perceived or real inaction from any of my (our) efforts. There is only so much we can do after all. And I am not dissuaded (yet) from trying my best.
*Don't you just loathe this term?
Service Users! Unfortunately I have been present at several meetings where patients were referred to as such.
I objected most strongly - especially on one occasion - really lost it at that point. Fools!
Who do they think they are, Tesco's? No. If they were Tesco's they would have more respect for their customers who could always take their trade to the competition.
We haven't got any choice. Not like we can pop along the road to Morrison's and get ourselves an appointment with someone else, is it?