Something SHOULD be done (let's try again)
Hi everyone,
Sorry I haven't been in touch. One of life's little surprises knocked me out of action for a few days.
I can see that things got rather out of control -- never mind, but can we try again? A forum site is not the best way of doing this, but could we try to focus? Any unhelpful or distracting posts could we please just ignore them for the moment?
Many thanks to all who wrote in and offered help and thoughts.
I know that people disagree on some details, but there is a lot of common ground here. You are a highly talented group of people who are doing wonderful things for individual diabetics with problems - if you can keep focussed and work together you can achieve wonderful things for the diabetic community as a whole..
I won't comment on everything that's been said -- life is too short and my opinion has no special validity. But my basic thoughts are these:
1. The problem as I see it is not one of specific dietary programmes, but that among some excellent HCPs there is also a lot of frightening ignorance about the very basics of diabetes care -- what are safe readings, what you should avoid eating. That basic information is very simply and easily put on a single piece of paper. This forum is full of horror stories, and I could add a few of my own. No matter how good the GPs or DSN, if they are on holiday and someone else fills in, the result can be a disaster. Programmes of re-education are scandalously expensive -- putting an agreed piece of paper in everyone's hand isn't.
2. First diagnosis is the crucial moment when wrong information does most damage. The vast majority of diabetics DO NOT use the forum (do the maths, people! most users ever online 194; total numbers 37,850), many will not attend education classes or annual clinical reviews, and lack the time, willpower and courage to research their disease (many have very stressful lives -- who can blame them?)
3. If we want to change this situation we have to begin by setting our sights low and pragmatic, whatever our long-term aims. Government is TERRIFIED about the costs of the diabetic time bomb, and will want to put any funds into prevention, not self-management. Recent parliamentary debates on diabetes certainly indicate this.
4. T1s -- thank God -- have been mostly getting better treatment in recent years, and 3 cheers for DUK for helping to get that (whatever their other faults). The diabetes time bomb is T2, and that is where advice and support is most desperately lacking. But I assume what I am proposing is of use to both. For the record I have 'T1.5' on my profile because after 2 years of tests i am still a 'don't know' , though my family members are T1, and that includes children whom I care deeply about.
This would arguably suggest the following:
1. Demanding test strips indefinitely for all T2s is simply not going to work YET, and I think most of us agree . BUT any sensible management of diabetes needs self-monitoring, which i think we all also agree. Diabetes Uk will not support the e-petition, but its formal position is unambiguous in supporting self-monitoring and insisting that clinics must not have a blanket ban on provision of self-testing to T2s who are not on insulin. There is a basic inconsistency here that can be worked on in the long term. In the short term, universal circulation of a paper which explains how and why to test (amid basic dietary advice) helps to set an agenda, and should impel government and Diabetes UK in the medium term to sort out some sort of policy on testing for T2s (eg. perhaps every newly diagnosed T2 to be given a meter and strips for just 6 months, or maybe just 50 strips to start and proper advice, and then that's their lot-- not ideal, but better than being told not to test because it'll just make you go mad). Phoenix is exactly right to prime us on the counter-arguments.
2. On diet -- VLC may well work but would be a non-starter for the moment. If Diabetes UK is against, and government will mostly use them for advice, and obviously this issue prompts mild disagreement (!) among diabetics themselves, then there is a basic problem. But as even our VLC friends have noted, it doesn't need to be spelt out in so many words. Guidance urging moderate carbs and low GI should point people in the right direction for the moment (as long as there are none of the specific exhortations to eat carbs that feature on DUK). I'm sure broader attitudes will change, but that is a long haul struggle, and if we are addressing a more immediate problem we have to stay pragmatic.
Where to go from here?
1. An adaptation of Daisy''s instructions to newbies, with some pearls of wisdom from grazer, xyzzy, borofergie, phoenix, unbeliever and our other stars where appropriate, without explicit VLC language, and very simple prose, should be what's needed, and that will best be done via PM rather than a forum conversation. Could said luminaries get in touch via PM on this?
How to get the copies mass-circulated and used as a default guide to the newly diagnosed?
1. Undoubtedly the best way to succeed with all this would be via a newspaper campaign, which is the best way both to raise consciousness and also to force policy changes on government, but that would be a big ask (anyone know an editor of a national newspaper, preferably diabetic?). More media-savvy people than I have chimed in on this thread -- perhaps they could liaise via PM? 'Eat to your meter' might work as a campaign slogan if a newspaper was promoting it, but would look too expensive if it were pitched directly at politicians who are busy making £20bn of cuts in the NHS (as unbeliever pointed out)
2. But if a publicity campaign isn't an option, my own instincts are to work at persuading those who already have the power and authority to ensure its dissemination, rather than trying to challenge the authority itself (not as glorious, but maybe quicker and easier to change one MP's mind than a whole country's). The obvious people to target are politicians - a platform of free information as a solution may be useful. The problem partly is that they mostly take their cue from Diabetes UK, but there are some good people in that organization (the incoherence of some of their positions reflects an ongoing struggle). My own target is to try to sound out MPs, the relevant junior minister (a LibDem), and the all-party parliamentary group on diabetes (APPGD’s report ‘A Snapshot of Living with Diabetes in 2012’, is to be published this summer -- could be interesting). I also want to try to get a conversation going with Diabetes UK, perhaps through the CPD. I may get nowhere, but if there are any encouraging signs I would like to be able to ask some of you for input and advice (probably via p.m., if people are OK with this), and a body of case info would then be very useful where possible (this is where xyzzy's account of changed policy could be very helpful, as well as all overseas examples). Viv's idea of targetting members of the public accounts committee is excellent, but maybe for sake of coherence could we agree a text and then have a number of us write separately, tweaking the odd word?
Perhaps we need a division of labour?
I have no authority to be pushing any of this, I have precious little free time, and I have none of the expertise and experience of the Forum Giants - if others feel better equipped to orchestrate things, and have better ideas, I'll be happy to step aside.
Over to you!