Policy role can be much fun...it can also be very troubling...making judgement calls which may affect many is never easy- and it does always make me wonder- how much benefit would direct patient involvement help? I mean- lets get this right- absolutely a must, we all should do it...but how much would that help if- say- there came the question of allocating money to services? We at NHSE work extremely well with Diabetes UK- is that seen as enough?
Before you get the usual suspects all frothing at the mouth at the very thought of "questioning" patient involvement, lets make this clear- this is me thinking aloud- something I have even mooted discussing at a few national events- but most folks around me have fudged the answer- so for the sake of debate, why not? Who knows-may even hold an open day to have a chat about this?
So lets say- hypothetically, we have 100 million quid for diabetes care. 100 million you could invest to improve "diabetes"- as a whole. Sort of similar to the 40 million we got last year- and have for another year. This time around, we looked at evidence, looked at Return of investment and put it in 4 places- broadly covering safety; foot care; education and treatment targets. Lots of kind words- but there have been criticism too- why not more specifically for technology, why not for pregnancy care, what about renal care; what about Eating Disorder services etc etc etc....so, lets flip this, if say hypothetically we did have 100 million quid, could patients help or even directly advise where to allocate that money?
Or would they be dictated by their own niche? Would a person living with Type 1 diabetes be focussed on their need- or would gracefully give up, say access to technology, for better provision of prevention of Type 2 diabetes? Or would the whole community turn around and advocate giving that amount to social care- with socio economic divide being linked with poorer outcomes? Or would we want to divide it up based on proportion? 10% or 10 million for Type 1 diabetes- the rest for Type 2 diabetes. I mean, the simple maths of getting Continuous Glucose Monitoring to even 10% of the 10% of those with diabetes is nearly 100 million alone! Or should we give it to primary care for better provision, access, training? As some clever clog said recently, give it all to the diabetes community in personalised health budgets- and it will be fine. Is that the answer?
Such questions intrigue me personally- simply because its very easy to be swayed by one's own bias- and its the same with all the specialists I meet too- very few (ironically most of them are primary care physicians- there's a story, huh!) actually would say something broad -beyond their specialist area. For some, technology is all that matters, for some, its all about safety, others, its foot care...come to think of it- if we have so many subdivisions within one specialty, how easy or difficult is it when you extend the reach of that? The argument that those who live with it- know more what to do with the money also falls a bit flat- when say a Type 1 diabetes person has to make a call over wider budget of diabetes- lest face it- their knowledge of living with Type 2 diabetes is the same as mine- nearly non-existent. Tricksy, isn't it? But I would be fascinated to see what top priorities those living with diabetes choose and what are the ones evidence says should be. This time around, we think we got it right- albeit as ever some would disagree but if there was a next time, this is a debate worth having I reckon
So to those living with diabetes or caring for those living with it, have a think- could you set aside your individual niche or bit and make a call for that 100 million....and how would you feel if your favoured bit didn't get the money that you felt should have? Would you like others making that decision on behalf of you?
So- go on- if you can- post some answers. 100 million at your disposal- where in diabetes care would you put it? And would it be an idea to have a fun debate around this- patients and policymakers- along with specialists & primary care? An open forum....would you be up for that- or should we leave it to patient organisations to have that debate? So many questions- but just an individual thought- which I thought would be worth mulling over in a blog. Who knows- some of your ideas...may even become policies....