UK endocrinologist and all round good guy, Partha Kar has been musing about patient involvement in funding allocations on his blog. I can’t help but respond, as Partha notes in his blog, he is thinking aloud and so am I, also playing devil’s advocate.
As a side note I have interacted with Dr Kar on twitter and he is genuinely interested in patient thoughts and is an advocate for patient involvement and the patient voice, so I trust he’ll take this as another step in the “debate”.
“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?”
He goes on to suggest that patients will think in silos just like everyone else
“could patients help or even directly advise where to allocate that money?
Or would they be dictated by their own niche? …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[sic] face it- their knowledge of living with Type 2 diabetes is the same as mine- nearly non-existent. Tricksy, isn’t it?”
There’s been WAY more good in my life, both diabetes and otherwise than bad or ugly this year. A fact for which I’m grateful but as the year lurches towards its conclusion I’ll add to the nostalgia doing the rounds with some reflections of the good, the bad and the ugly as I see it in the world of diabetes in 2017.
If low carb works for you, that’s great and if you want to share your success on social media, great, go for it. What is not cool is lecturing/haranguing and shaming people who don’t treat their diabetes in the same way you do. Everyone’s metabolism is surprisingly different so lay off the judgement and assumption that because it works for you, it must work for everyone.
It’s 2017, the internet has been a thing for over 20 years. Why are health professionals in Australia still relying on faxes to do referrals etc? This is ugly or maybe bad or perhaps both.
Insulin has been available to sustain life in people with diabetes for 97 years. Why are people with type 1 in one of the world’s richest nations having to ration insulin because they can’t afford it? The answer is that companies are doing what they are obliged to do,maximise profits. Society is failing in its duty to limit that profiteering. Democratic governments should act in the best interests of their people, it is a disgrace that the US government has failed for decades to do this. #insulin4all and @T1international are great but they shouldn’t be necessary.
Whilst I am enormously grateful for the level of taxpayer subsidy we receive in Australia, it is disappointing that we’re still waiting for the “imminent” announcement regarding subsidisation of the Freestyle Libre and that CGM has been subsidised based on age rather than clinical need. (Notwithstanding that the subsidisation is wonderful and due in no small part to tenacious advocacy work by those in the type 1 community).
I also take this opportunity to remind everyone that the price paid for NDSS products has risen with the CPI for people with diabetes BUT the government has not paid anymore for the products and is in fact, looking for a reduction in price from the producers. Let’s not be complacent about the cost of living with diabetes.
It was fabulous that Diabetes Australia recruited social media junkies 🙂 with diabetes to report on the ADS-ADEA Annual Scientific Meeting. This conference was great in that not only were a small group of us enabled to attend to share the proceedings with others, but there were many voices of people with diabetes throughout the conference.
The social media world made my life so much easier when my out of warranty pump failed. A million thanks to the person who sent me their “spare” pump to save me from injecting Protaphane and also to the endo who communicated with me so quickly and facilitated my new pump. The system worked for me despite me not being as ontop of things as I should have been (shouldn’t really have let my pump get so far out of warranty.)
Diabetes actually gave me more than it took this year-opportunities to travel, shared experiences and friendship. I don’t know whether the “gift” that keeps on giving will strike back in 2018 or beyond (and some years it’s definitely taken a lot) but to all my friends with type 1 D thanks for your support and comraderie here’s to kicking diabetes’ arse for another few decades. Cheers!
Imagine being gathered around the Christmas tree and and unwrapping a startling visual reminder of diabetes complications. Well this is what some British diabetes organisation is suggesting people with diabetes might like to find in their Christmas stocking.
The National Health Service of the UK (NHS)? They run all health services in the UK and are government owned & controlled, surely they would be credible?
Here’s an offering from one part of the NHS posted on 17th November 2017. It looks like an ad sponsored by Big Food. Imagine the outcry if Coca-Cola DID run an ad like this! This is misleading and just plain WRONG. Potatoes contain carbs but it is not simple sugar and the metabolic and nutritional impact is WAY different from that of Coke or orange juice (which looks surprisingly low in sugar in that pic to me). This tweet-a picture of a display the diabetes nurses of the NHS took to a local shopping centre is so wrong, so potentially damaging and so misleading, I am beyond words.(Just kidding I can nearly always find the words to rant.)
Despite initially defending the tweet for quite some time, the West Suffolk NHS did delete it but I’m just leaving it here for the next time somebody starts dissing people with diabetes sharing health information on line.* Get your own houses in order first!
*West Suffolk NHS are by no means the only “credible” organisation disseminating misleading information. Health information is complex and doesn’t lend itself well to sound bytes and tweets. The sooner public health promotion officers realise this the better.
In the interests of balance, here is a useful infographic produced by people with diabetes. Note it doesn’t promote branded products, includes quantities and is relevant to the season at hand-Thanksgiving and Christmas are particularly times when you eat foods out of the ordinary, so a quick guide to carbs is helpful. Kudos to the people at Beyond Type 1.
So it was Thursday morning, my pump reservoir was empty but when I went to refill it, I found the button I needed to press wasn’t working. I pressed harder, I gave it a little break and put it in a cool place. Alas no, my very out of warranty pump had finally let me down.
Inspired by some of the anxiety I have witnessed at health conferences/talks recently around filtering health information, I thought I might turn the tables a bit. Sure we all know we need to evaluate health information on line but what about the health information we receive in consulting rooms/surgeries or hospitals. We all know it’s out there from missed opportunities to diagnose t1 diabetes (sometimes leading to death), to hospitals omitting insulin to not knowing cortisone injections will cause insulin resistance. All this and more happens every day in the offices, consulting rooms and hospitals. How to protect yourself?
Time and again I find myself nodding at conferences or lectures when I hear a “patient’s” story of how the internet has or does make a huge difference to their quality of life/management of a medical condition or disease and its treatments. So it was again as I listened to e-patient Dave who told his story of engagement with the healthcare system following his diagnosis with stage 4 renal cancer.
Dave’s basic request “let patients help” seems unassuming enough and his definition of ’empowerment’ also seems like a modest aspiration. Continue reading →
Patient-centred care is a bit of a buzzword and a few sessions at #ADSADEA were devoted to it. There’s no definition of the term but it seems to refer to individual health practitioners listening to and responding to patient’s concerns during consultations. That’s all good and well but is that all there is to patient-centred care? It got me wondering about what the health care system would be like if it was run by people with diabetes instead of the government/doctor/bureacracy mash up we see today.
Before I attended ADS-ADEA’s Annual Scientific Meeting I did a little survey of what people with diabetes were most interested in hearing about at conferences. As the survey was largely completed by my friends in the D world, it is unsurprising that they were almost entirely type 1s and most had had diabetes for at least 20 years. The topics of most interest were new technology, research with only a few more saying stuff that was relevant to life with D now as opposed to the cure and psychosocial issues. Many people also said the main benefit to them of attending D conferences was the opportunity to socialise with other people with diabetes.
So here’s my best effort at rounding up the categories of most interest from ADS-ADEA 2017: