#talkt1 - Brainstorming a new model of care for T1 diabetes

Bright and early on Saturday morning I caught the train to sunny Southampton where I had been invited to attend '#talkt1', and event organised by everyone's second-favourite rabble-rousing diabetologist and all-round live wire Partha Kar. It was a real honour to have been invited and the attendees to the event were an extraordinary who's who of passionate, committed T1 specialists, consultants and paediatrics, commissioners, DSNs, plus various NHS big-wigs such as Jonathan Valabhji and Diabetes UK's CEO, Chris Askew.

The majority of the party had gathered the evening before, for some presentations, talk of Vanguards and 5 year forward and time to think and talk together. This was not some back-slapping jolly though. These amazing people had given up their weekends to take a tough look at how type 1 diabetes care is delivered in the UK and to see if they couldn't begin to rethink it. One chilling statistic from Pratik Choudhary's presentation was recounted on Saturday morning:

‘Current practice kills at least 30% more people by the age of 50 than best practice should achieve’

Saturday morning began with some patient stories. Kev Winchcombe gave a moving account of the diagnosis of his daughter, and the huge journey they have been on ever since (yes that's right, I'm using the 'J' word - deal with it). Laura (ninjabetic) spoke of her initial struggles, lack of education (100 units a day and no instruction about balancing that with carbs!) and how connecting with others on Social Media has made such a difference to her self-care. Jens Birkenheim spoke of his frustration with not being able to find the sort of care he needed - or even where to start looking - which led him to begin setting up DCareFinder, a website that allows you to search for diabetes services near where you live. It was then my turn to talk about my experiences as a lay member of the Guideline Development Group for the NICE T1 Guidelines, how I came to be involved and whether I thought they helped me as a patient.

It was interesting to hear the same themes coming out again and again in each of these patient stories. The need for education, right from the start and as an ongoing part of living with T1D. The variety of care experiences in the UK, sometimes exceptional, other times disastrous. The value of using technology, digital-connectivity and peer-interaction as tools in our daily dance with T1.

It was then time for some thoughts from the diabetes 'legends' - Professor Simon Heller and Dr Fiona Campbell who spoke about adult and paediatric care respectively. One quote from Prof Heller particularly stood out to me. He said, "We don't often tell our patients this, but there is no condition which demands more of the individual than type 1 diabetes".

There was a lot of tough talk. A genuine sense that these people felt they could do better - and wanted to make that happen.

In the afternoon the room split into 4 'teams' each given a scenario of a hospital trust/healthcare setting and pot of cash. They were then asked to see what they could come up with (in a matter of just a few hours) as a new model of care for type 1 diabetes. "If we were starting from scratch," Partha said as he introduced the game, "I think we can all be pretty sure that we wouldn't end up where we are". Us patient-types were free to roam around from table to table and stick out oar in. Giving feedback as to whether we liked the ideas being floated. After a break for lunch, there was just enough time to draw the ideas together before they were to be presented to a guest panel of 'judges', including two CCG Commissioners and Roz Davies as a patient representative.

I'm not quite sure what Partha expected to get out of this scrap-of-time-workshop, but there were a number of very interesting ideas floating around as the 4 different models were presented. It was fascinating that no one really based their idea on needing a stack more money. Most of the thoughts were priced loosely within the specified budgets, and it seemed that these may have been thoughts that people had been musing on for some time. I didn't take any notes so can't really recount them in detail, but here are a few things which caught my attention at the time.

• The idea of 'front loading' finances. Implementing additional education and support up-front with the money that you would expect to spend later on acute admissions or complications that can be avoided.
• Identifying people who are stuggling not only by HbA1c and/or admissions, but also on their level of 'diabetes distress'
• The importance of education delivered by people specifically trained in T1D
• The potential of 'community hubs', making it easier for people to access care near where they live, as often as they need it
• The importance of psychological support - as Dr Fiona Campbell put it "Psychologists will never sit idle - so much is discovered by universal screening. You don't know what you don't know"
• The potential of technology - Skype consultations, remote/digital clinics, regular data-upload and review, email and *gasp* seamless sharing of information between GP and hospital clinics
• The huge potential of peer support as part of a new model of care
• A modular education approach - Diabetes seen as a journey through life with various milestones. People have different needs/aspirations and will be ready to access education at different times - the ability to dip in and out of primary and secondary care with varying frequency
• That people are different, and that approaches need to be tailored to better support individuals

It was a really inspiring day. You got the feeling there were some real sparks flying. That if anyone could begin to stir up the current state of T1 care in the UK, then this would be a pretty good starting line-up. It will be interesting to see what comes out of it in the coming months and years. Huge thanks and much respect to Partha Kar for his energy and commitment to improving things for us pancreatically challenged lot.

If you want other perspectives on the day you can also read blogs by Partha, Roz, Laura and Kev.

Disclaimer. Very kindly, my train ticket was paid for and the lovely Kev W gave me a lift to the venue. Lunch was laid on, but all of us patient speakers gave their time for the privilege of being involved in such an amazing day.

Backwards, forwards and off at a tangent

Looking back
Well that's it 2015 - you've pretty much had your lot.

So this is the seemingly inevitable 'round up' type post and also a chance to *finally* get around to writing a post that I had wanted to publish in the weeks before Christmas concerning the latest tomfoolery that my diabetes has decided to subject me to.

In January this year I had my first glimpse of the MiniMed 640G at a Medtronic bloggers and advocates meeting. There was quite a lot more of this particular gizmo later in the year.

February saw me clocking up 25 years of living with type 1 diabetes. More by luck than judgement I still seem to have most body parts in relative working order and nothing to speak of has apparently shrivelled up and dropped off so far.

In March, was honoured to be invited to join a small group of bloggers and advocates at the Diabetes UK Professional Conference in London, spreading news of new research and information via Twitter and Facebook as the conference progressed.

One of the most dramatic changes I have made in my diabetes therapy in years occurred in April when Fruit Pastilles and I abruptly parted company.

Over the summer I had the opportunity of living with the MiniMed 640G with full-time sensor coverage for 9 or 10 weeks and posted my very first video blogs documenting my experience. It was the first time I trialled sensor-augmented pump therapy and the results - for me - were quite simply remarkable.

August saw the publication of new NICE guidelines for Type 1 Diabetes in Adults after years of work. It is something I am very proud to have been involved in as a member of the Guideline Development Group. It would be wonderful to think that the document might make a positive difference in some small way to at least one person living with type 1 in the UK.

In November, I chose to upgrade to the MM640G when my pump warranty ran out, though that decision is tinged with sadness as (not unexpectedly) my clinic were less than optimistic about my chances of securing NHS funding for sensor coverage any time soon.

December saw an invite to speak at the Royal College of Physicians in Edinburgh at their St Andrew's Day Symposium. An amazing experience and I was humbled to be invited. Even more encouraging were the invites that I have subsequently received to speak elsewhere. Looks like 2016 could be really exciting. I'll let you know if and when any of them happen.

Looking forward
It will be interesting to see what else the New Year has in store. I would dearly love to be invited to DPC16, but will have to see whether Diabetes UK would like me to be there. I feel very lucky to continue to be part bloggers and advocates groups for both Medtronic and Abbott and look forward to seeing what snazzy new gadgets they have in store over the next 12 months.

I find myself wondering whether I will be able to self-fund sensors for my new pump for a small part of the year (something I never quite managed on the Veo). I have been using Libre sensors intermittently through 2015 and they have been incredibly helpful - but my experience of living with SmartGuard was really something else. It seemed to be the missing part of the puzzle for me. If the transmitter cost was lower, or transmitter life-expectancy was higher it would be a no-brainer. We shall see.

Expect the unexpected
It seems like my diabetes has decided to go off at a bit of a tangent recently. It will be interesting to see if my new 'surprises' continue to occur during 2016.

About two or three months ago I started noticing something rather odd. Since 2010 I have spent quite a lot of time trying to get to know my diabetes rather better. I had always thought we were reasonably well acquainted, but looking back there were many things that I simply did not realise were happening, or put down to 'diabetes randomness'. To be fair, there are still quite a few of these, but a lot less than there once were. When my basal is set right generlly my corrections and doses can be expected to behave (with an odd wobble here or there) when faced with a number of tried and tested meal scenarios. So when everything seems to be pottering along OK one day and then goes haywire with identical breakfast and lunch choices the following day my brows knit and I begin to wonder what's up.

And I have noticed some rather odd coincidences. Well... odd in some ways, but actually quite expected from others' point of view.

All the while over the years I have been relearning my diabetes and asking questions of others, I discovered a variety of 'things' which seemed pretty common experiences for people living with type 1 diabetes that simply did not seem to happen for me, even when I looked carefully for them. Things like exercise or alcohol having an blood-glucose-lowering effect the day after the event. There are a bunch of other things too. These were things I saw being discussed on forums and social media and was always able to say, "Oh that's interesting... I don't get that at all". Except now I do. At least some times.

The exercise and alcohol ones particularly stand out to me, because they involve every T1D's second-favourite game - the ole "What shall I do now?" bedtime conundrum. Which is double the fun if you seem to have spotted a pattern. But one that only applies some of the time - Ah Diabetes! You sly old minx.

So last night, for example, I went to bed at 8.6mmol/L with 1.3u of insulin on board which *should* have been dealing with carbs I had eaten mid-late-evening. Unsure if I had the count right I had another 5 grams or so to err on the side of caution. Except that we had been out at a family event earlier in the day and I'd had rather more booze than I would normally. Not silly amounts, but *possibly* worth factoring in when living in these new 'will it..? won't it..?' times. So I also set an 80% TBR to run for 8 hours. I was fortunate to be wearing a Libre sensor for the last of its fourteen days, so I had a chance for a quick peek at 2.45am whereupon I discovered than unlike earlier over the festive break I had *not* dipped at all post-alcohol - but had risen pretty steadily into the 10s. I added another 0.8u and cancelled the TBR waking at 7.5mmol/L.

So why had I taken precautions that pushed me into double figures? Why choose 80% for the TBR? Because over the last quarter of the year I have had multiple occasions when that has been exactly the right thing to do, not only overnight, but also through to lunchtime the next day. In fact this was the situation fairly reliably when I first decided to write this post (early Autumn). It's only in more recent weeks that the edges have begun to blur again, and I am now left with uncertainty rather than An Actual Plan.

And I've had occasions over recent months where post-exercise dips a day after the event have needed exactly the same careful handling. And others, more recently, where seemingly similar exertions have needed nothing of the sort.

Not helpful.

It seems as with many things in life, the best approach to living with with type 1 diabetes can be found within the hallowed pages of Douglas Adams' trilogy in five parts:

The nearest approach the Guide makes to this matter is on page seven-thousand-and-twenty-three, which includes the words "expect the unexpected”. This advice has annoyed many Hitch-Hikers in that it is ‘A’ - glib, and ‘B’ - a contradiction in terms. In fact, the very best advice it has to offer in these situations is to be found on the cover. Where it says, in those now notoriously large and famously friendly letters, “Don’t Panic”.

The Hitch-hiker's Guide to the Galaxy (part 10), Douglas Adams

New NICE Guidelines for Type 1 Diabetes Published (at last!)

As some of you may know, over the last three years (THREE YEARS??!?) I have been working with a wonderful group of fiercely clever and passionate people as one of two 'patient representatives' on the NICE 'Guideline Development Group' which was revising and updating the NICE Guidelines for type 1 diabetes in adults. Expert consultants, eminent physicians, nurses, pharmacists, GPs, educators, editors, along with a host of other specialists including researchers and health economists who gathered and organised an almost unimaginable quantity of research data for the group to filter through and consider.

It has been a huge privilege to work with them all, not least Professor Amiel, the chair of the group, who is a complete inspiration and quite the nicest person you could meet. We have not been permitted to mention anything much connected with the discussions until publication, but at last, today, the guideline launches here: ‘Type 1 diabetes in adults: diagnosis and management'.

Hooray!

If you have been living in a cave for the last 16 years and have never heard of the National Institute for Health and Care Excellence (NICE), they are an independent body working as part of the Department of Health who publish guidance on all manner of healthcare topics which aims to set the 'gold standard' of evidence-based care, balancing clinical outcomes, patient preference and quality of life against the cold hard reality of NHS budgets (ie Yes! You can have something expensive... but only if published research shows it's reeeeeally good for most people).

As a patient, I *love* the fact that I can have a weighty, official, authoritative document that describes what has been shown to be the very best in diabetes care. It gives me something to consult to measure my own experience in clinic, and the right kind of pointy questions to ask if I think I should be getting something that isn't being offered. Plus if I think something should be available that isn't, the documentation is so comprehensive that (if I wanted to) I can dig down into the 'linking evidence to recommendations' section to unpick the reseach and discussions that underpinned the recommendations.

NICE seems to get a hard time in the press off and on (either for denying treatment, or for recommending it) and is frequently accused of bias or an almost corrupt collusion with the pharmaceutical industry. I have to say this could not be further from my experience of the guideline development process. Each meeting included a new declaration of 'conflict of interest' and anyone with a conflict, financial or otherwise, however minor, was not permitted to contribute to the discussion or was asked to leave the meeting entirely.

I am very proud to have been part of the process, and believe that this updated guideline, if fully implemented has has enormous potential to improve the lives of adults living with type 1 diabetes in the UK.

Here are a few things I'm really pleased made it into the final version:

Structured education

Offer all adults with type 1 diabetes a structured education programme of proven benefit, for example the DAFNE (dose-adjustment for normal eating) programme. Offer this programme 6–12 months after diagnosis.

If a structured education programme has not been undertaken by an adult with type 1 diabetes by 12 months after diagnosis, offer it at any time that is clinically appropriate and suitable for the person, regardless of duration of type 1 diabetes.

My feelings about the lack of structured education formed no small part of my journey toward joining this NICE committee. Carb counting, dose adjustment, correction factors, basal testing, guidance about exercise, alcohol and sick day rules. How can people be expected to make a decent go at managing their type 1 diabetes without these skills? And yet the number of people who have ever attended such a course is pitifully small. Unless I'm mis-remembering it's something like 6.5%. Let's hope that during the life of this guideline that changes significantly.

Access to test strips

Support adults with type 1 diabetes to test at least 4 times a day, and up to 10 times a day if any of the following apply:

• the desired target for blood glucose control, measured by HbA1c level (see recommendation 1.6.6), is not achieved
• the frequency of hypoglycaemic episodes increases
• there is a legal requirement to do so (such as before driving, in line with the Driver and Vehicle Licensing Agency [DVLA] At a glance guide to the current medical standards of fitness to drive)
• during periods of illness
• before, during and after sport
• when planning pregnancy, during pregnancy and while breastfeeding (see the NICE guideline on diabetes in pregnancy)
• if there is a need to know blood glucose levels more than 4 times a day for other reasons (for example, impaired awareness of hypoglycaemia, high-risk activities).

'Proper' testing frequencies of up to 10x a day (and making use of the results) shown to be more effective AND cost-effective. No more shocked looks permitted from non-specialist Drs or nurses suggesting a couple of times a week should be fine.

HbA1c Target

Support adults with type 1 diabetes to aim for a target HbA1c level of 48 mmol/mol (6.5%) or lower, to minimise the risk of long-term vascular complications.

Agree an individualised HbA1c target with each adult with type 1 diabetes, taking into account factors such as the person’s daily activities, aspirations, likelihood of complications, comorbidities, occupation and history of hypoglycaemia.

I've written about this before. Personally, as a patient, I am really pleased with the balance between these recommendations. Don't tell me to be happy with an A1c approaching 8% if there is real evidence that lower is better to guard against long-term complications. Don't tell people who have no problematic hypoglycaemia that their A1c is 'too low' because it's in the 6s (can't get used to the new numbers yet, sorry!). On the flip side, treat me as an individual, don't label me as a failure because you have a magic number in your head that I am working toward, but I'm not there yet.

Not exactly 'CGM for all', but...

Consider real-time continuous glucose monitoring for adults with type 1 diabetes who are willing to commit to using it at least 70% of the time and to calibrate it as needed, and who have any of the following despite optimised use of insulin therapy and conventional blood glucose monitoring:

• More than 1 episode a year of severe hypoglycaemia with no obviously preventable precipitating cause.
• Complete loss of awareness of hypoglycaemia.
• Frequent (more than 2 episodes a week) asymptomatic hypoglycaemia that is causing problems with daily activities.
• Extreme fear of hypoglycaemia.
• Hyperglycaemia (HbA1c level of 75 mmol/litre [9%] or higher) that persists despite testing at least 10 times a day (see recommendations 1.6.11 and 1.6.12). Continue real-time continuous glucose monitoring only if HbA1c can be sustained at or below 53 mmol/mol (7%) and/or there has been a fall in HbA1c of 27 mmol/mol (2.5%) or more.

'Consider' is NICEspeak for a much weaker recommendation. It should be on the table, but it's not for everyone. The evidence for effectiveness of CGM was just not compelling enough to do anything else at it's current eye-watering pricetag. To be honest I was shocked at how weak it was, given the experience of people I know who self-fund CGM. Continuous Glucose Monitoring it seems just doesn't do well enough in Randomised Controlled Trials. But at least, here, it *might* be available on the NHS to the people who really need it.

And finally
It was great to see bi-modal (mixed) insulins being given the heave-ho, unless people really wanted to use them. From now on people should be able to start off on a proper flexible MDI regimen from the outset, along with some good education and support.

It was also really heartening to see how NICE reacted to the subject of language. The editors were updating the old recommendations for clarity and new styling (for example 'adult with type 1 diabetes' rather than 'diabetic' or 'patient'). I raised the question of the word control which is a difficult term for some people. Personally I cannot 'control' my diabetes - I do not have the ability to affect all the variables. At best I can limit some, and try to react to, or work around the others. I don't control my diabetes, I manage it. Because of the timing of the discussion, it was not possible given the time-restrictions to change the terminology used in the full guideline (though discussions will be had within NICE for future versions). I was very pleased though that for the 'Information for the Public' version, the phrase 'diabetes control' has been replaced.

What do you think? Will the new NICE guideline make any difference to you? Were you even aware that there was one to cover type 1 diabetes? Let me know in the comments below.

6.5% A1c target - A reply to a comment that got out of hand

I've had a couple of comments on my post about the proposed new HbA1c target in the draft NICE guideline that is currently out for consultation. I was rattling in a 'quick' reply, when I thought - this is *ridiculous*. I can't even see this any more in this tiny box - so I've decided to post it here instead :)

Here are the comments:

Tamer Hassan said...
how do you achieve these numbers?

thanks

Tim said...
These numbers are impossible to reach...
Or at least give me some suggestions on how to reach these levels. Thanks.
Tim

'How to reach these numbers' is a question for your healthcare provider really. Don't just ask some random nutter on the Internet! However (and desperately trying to avoid sounding like Mr Smug of No 22 Smug Gardens, Bigheadshire) I have had a sub 6.5% HbA1c for over 3 years now, so I know that it *is* possible if only perhaps for the lucky few. Plus I've never had fewer hypos in my life with diabetes either - so it's not that I am 'paying' for A1c improvements with the hefty cost of Severe Hypoglycaemia.

I cannot really tell why some people seem to put in so much effort and get such scant rewards, and that is why I think individualised targets are SO important.

But it does seem pretty clear to me that the closer you can get to those standard-issue BG targets (5-7mmol/L waking, 4-7mmol/L pre meals and <9mmol/L by 2 hours after meals) for as many days in the week as you can manage, the closer you will get to these kind of tough, aspirational, borderline non-diabetic A1c targets. My own HbA1c has fallen by around 1.5% in recent years, and I think only around 0.5% of that is attributable to the pump - though Artoo has gone a LONG way to reduce my number of irritating low-level hypoglycaemia dips. When I look back over the changes that I have made in recent years I can see a few things that I think were important. I don't offer these as any kind of guide or advice - it's just what I did.

1. Education. Get access to proper structured education regarding diabetes management. In the UK we have DAFNE which is highly thought of, but other options are available. Things that should be included (in my opinion) are:
   
   1. carbohydrate counting, working out how to check and change insulin:carb ratios for different times of the day
   2. SMBG technique - when to test and what to do with the results *including* basal testing to PROPERLY adjust basal on an ongoing basis
   3. correction factors - when and how to correct (with insulin or fast-acting carbs) to aim bring you back into range without jumping aboard the gluco-coaster
   4. exercise and alcohol
   5. dealing with illness
   If structured education courses are not available in your country/area you can do a lot worse than buying 'Think like a pancreas' (Scheiner), 'Type 1 Diabetes' (Hanas) or 'Pumping Insulin' (Walsh/Roberts) which cover much the same ground. Though the benefit of peer support in group sessions should not be underestimated



2. Test more often AND RECORD THE RESULTS. Find some way of keeping notes daily as you go along. What you are eating, units and timing of doses (how long before... split doses...), exercise, mood, everything! Without a fairly detailed set of records I find it impossible to see what is going on. Personally I still love mySugr for this.



3. Gadgets - seek out new tech that can help you manage your diabetes more easily. It might be a 0.5u pen; a smartphone tracking app, or copy of 'Carbs and Cals'; or it might be a BG meter with a bolus wizard so that you can have properly fine-tuned ratios without having to worry about keeping the maths easy. Additionally, ask your clinic about access to Insulin Pump therapy and CGM.



4. Seek peer support - join a forum or two, join Twitter, read some blogs (thanks!) or even *crazy!* join a local group and meet face to face. Living with diabetes is tough, but it's even harder if you are battling on your own. For everyone there's a little corner of the internet that can provide support, encouragement and shared experiences.

At the end of the day we each have to find our own balance between living a life and managing our diabetes. Somewhere in the middle you'll find your perfect A1c and it won't drain all the joy out of life to reach it.

Good luck :)

6.5% - Are they mad?

I haven't really got time to write this today, but I have waited too long with too many blog posts bouncing around in my head so I'm just going to rattle this one in quickly to clear some head space.

The situation has been exacerbated in recent years because of my position as one of the patient members of the NICE Guideline Development Group (GDG) for the update to the Type 1 Diabetes in Adults Guideline. It has been an enormous privilege to be part of creating the guideline. Filtering through all the research and discussions looking for definitive, evidence-based, best-practice approaches to treating and managing type 1 diabetes has been incredibly interesting (and quite hard work!). Part of the NICE process is that members of the GDG are sworn to secrecy until the guideline is published. This is partly to promote a healthy, open dialogue within the group and also because - research being what it is - new stuff emerges all the time and blabbing about what the group thinks about a topic early on, might cause upset, especially if it changes later as new results/research are found or economic models are run.

As a consequence there are all sorts of really interesting things I have come across, or thought, or wanted to comment upon over the last 2 years which I have not been able to. Around the middle of December though, the 'consultation' version of the Guideline was published - you can read it here. The consultation document is the first glimpse the world gets of what we have been working on and it allows stakeholders to comment on the recommendations before they are finally published. So at last it feels like I can pop my head over the parapet.

One of the aspects of the consultation document that immediately prompted some comment on diabetes forums and Twitter was the recommendation regarding aiming for an HbA1c of 48mmol/mol (6.5%).

On the face of it, this sounds like madness. In a world where so many people struggle to meet the existing target of 59mmol/mol (7.5%), which fewer than 30%* of people with type 1 can manage, why on earth would you set the bar at 48mmol/mol (6.5%). Currently (and rather appropriately) achieved by just 6.5% of people with Type 1*. Why on earth would you set a target that almost 95% of people cannot reach?

Why indeed.

The section starts on page 160 and the recommendations are made on page 194.

8.1.2 Review question: In adults with type 1 diabetes, what is the optimum target HbA1c level that should be achieved to reduce the risk of complications?
...
39. Support adults with type 1 diabetes to achieve and maintain a target HbA1c level of 48mmol/mol (6.5%) or lower, to minimise the risk of long - term vascular complications.[new 2015]

Surely the patient reps on the group were up in arms at such lunacy?

Well actually no. If anything I was pushing for that very recommendation. And the real reason is the question. Questions are important. And without them, answers rarely make any sense.

I wasn't interested in knowing whether research said achieving 6.5% was easy. I was more interested in whether it was worth it. And even more importantly - how much it was worth it.

From the papers reviewed there was that familiar 'curvy' shape when complications were plotted against HbA1c values. At higher levels the line is really steep - zooming upwards with frightening menace. As HbA1c values fall down toward 8.5% things are curving off, though it is clear that even small improvements could potentially make a big difference. The argument that I was always given for the target of 7.5% was that below that level the added difficulty outweighed the more modest improvements of the levelling curve. But actually the improvements below 7.5% are far from level and when it comes to all the nasty things diabetes can throw at you - worth having if you can do so safely and with a decent quality of life.

The next recommendation is critical too.

40. Agree an individualised HbA1c target with each adult with type 1 diabetes, taking into account factors such as the person’s daily activities, aspirations, likelihood of complications, co-morbidities, occupation and history of hypoglycaemia. [new 2015]

So far from being a 'failure stick' to beat us with - I hope that this new recommendation (if it makes it to the published version) - becomes a source of support for anyone who has the time, skill, good fortune and technology to aim for a sub-7 A1c. And that the next one promotes a tailored programme of support, strategies and treatment options for everyone to achieve their own perfect balance between diabetes management, results and still having a life.

Mostly I hope no one gets told off again for having an HbA1c that is 'too low' by a clinic that assumes you *must* be having severe hypos all the time.

What did you make of it? Do you think it will help or hinder your efforts?

Follow up: How do you achieve these numbers?

* National Diabetes Audit 2009 - 2012

15 Checks, Diabetes Audits and Prawns

Last week saw the publication of the National Diabetes Audit (NDA) for 2012-2013. It's a bit like Ofsted for diabetes clinics and includes results for just over 70% of the places providing care for people with Type 1 and Type 2 diabetes in England and Wales. If you want to dig into the vast and weighty documents yourself, they are published online here: www.hscic.gov.uk/nda.

I got as far as skimming Report 1 'Care Processes and Treatment Targets' (check out that horrendous BG testing technique on the cover folks... right into the nerve-ending-packed softness of the fingertip! Use the sides people use the sides) before one of the stats just jumped out and hit me between the eyes.

Way less than half of all Type 1s are getting the routine healthcare checks they should.

40%. Forty. Percent.

My daughter reliably informs me that in GCSE terms that comes out as an 'E'.

The actual figure is quoted as 41.3% and it has been falling since 2010. That's almost a quarter of a million people living with type 1 diabetes who are missing even the most basic annual checks to help them keep on track.

When it comes to actively supporting people to manage their condition effectively by offering them some sort of structured education course the stats are even more eyewatering. Less that 4% of people being offered a place on a course. A measly 1% actually make it onto the courses. There's a lengthy rant right there... but that will have to wait for another day.

Diabetes UK lists 15 healthcare essentials that people with diabetes should get each year:

1. Get your HbA1c measured at least once a year
2. Have your blood pressure measured and recorded at least once a year
3. Have your blood fats (such as cholesterol) measured every year
4. Have your eyes screened for signs of retinopathy every year*
5. Have your feet checked
6. Have your kidney function monitored annually
7. Have your urine tested for protein each year
8. Have your weight checked
9. Get support if you are a smoker
10. Receive care planning to meet your individual needs
11. Attend an education course to help you understand and manage your diabetes
12. Receive care from a specialist paediatric team if you are a child or young person
13. Receive high quality care if admitted to hospital
14. Get information and specialist care if you are planning to have a baby
15. See specialist diabetes healthcare professionals to help you manage your diabetes
16. Get emotional and psychological support

* eye screening is now handled separately and bizarrely is no longer included in the NDA

The ones in bold are the checks that are covered by the NDA. Eight or nine routine measures to check that nothing nasty is lurking, and to be able to do something about it if things are going awry. These checks are not about passing or failing - they are about protecting us.

So what is going on?
Is it just people not showing up?
Is it that the appointments are not available at convenient times?
Is it that people simply do not *know* that these simple routine checks are so very important?
Is it a lack of resources?
Overstretched NHS?
Un-engaged individuals?
Are clinics not helping patients?
Or are patients not helping themselves?

My guess is that it is *all* of those things.

I wrote once before about the exponential rise in the number of appointments that were involved in my 'annual review' and the situation is much the same. Decentralised care may work well as a buzz word, but patients have ended up with 4 or 5 appointments instead of 1, which makes the whole process much more of a faff.

But here's the harsh truth.

Faff or not - if you are living with type 1 diabetes you need to do whatever you can to make sure that you get those checks.

They are not for the benefit of the doctors. They are not for the purposes of making someone's spreadsheet look snazzier. They are for YOU. We live in a world where people struggle to get access to any insulin at all - let alone the particular type and/or colour of pen that they prefer. The very least we can do is turn up for (free!) appointments designed to help us to make it through life with our feet on and our eyes working.

It absolutely appalls me that the figures are what they are. And the people most likely to suffer as a result are not the clinics or doctors, but the very people who are not getting checked.

Yes I'm sure some clinics could help with more flexible appointment times. Some employers might need to be reminded that under the DDA (or whatever it is called this week) they need to make 'reasonable adjustments' to support employees with diabetes in keeping these kind of routine healthcare appointments.

But at the end of the day we have to find ways of attending.

Prawns
Perhaps it would be easier if diabetes was a bit more like prawns.

After 25-odd years I am very glad that diabetes is often a relatively slow-moving adversary. But perhaps part of the problem with all those thousands of appointments from the patient perspective is that diabetes is not enough like prawns.

Perhaps it's not prawns for you. Maybe it's peanuts. Or yoghurt. Or fresh ravioli with ricotta.

When I was in my teens I had an absolutely delicious pub meal out while on holiday. I chose a local speciality of prawns in their shells. They were fabulous. On the way home in the car I began to feel a little uneasy. I used to suffer a little with motion-sickness so put it down to that. I still felt a bit odd and over-full at bedtime. But then... we had eaten rather a lot. I woke with a start in the early hours and knew instantly that things were not right. Not right at all. Somehow I managed to stumble, in the dark, with excruciating urgency to the tiny the bathroom where I remained until the following morning in a wretched, heaving heap.

I still struggle to look at a prawn.

The trouble is there is no such immediate come-back for a missed appointment here or there. Eating a big ole serving of 'not enough time at the moment' prawns in 'missed appointment' sauce doesn't bring me out in a sweat just thinking about it. But the results of missing those checks are potentially even more catastrophic.

80% of the NHS budget that is spent on diabetes goes on treating complications. We owe it to ourselves to do what we can to change that statistic. To beat diabetes one day at a time. To keep ourselves well.

Making sure we get all our routine healthcare checks is a tiny step in the right direction.

Change the world - DBlog Week Day 1

Thanks to Karen Graffeo this week is the 5th annual Diabetes Blog Week.

Today's topic is 'Change the world'.
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

Hmmmm... Well I'd usually bang on about the power of peer support and the DOC, but since my last post was about that very thing I've decided to take this topic as more of a fantasy 'what if anything were possible' type thing.

So if it's not a cure and diabetes is continuing and if I could change anything what would I choose..?

I wish there was more honesty and fairness. Specifically when it comes to medical research and product development.

Perhaps I have got this wrong. Maybe I'm just being too jaded and cynical. I am absolutely sure that most people who undertake research are paragons of honesty and integrity, but I'm afraid I do worry about the impartiality of some research studies into new treatments which are (inevitably) funded by the companies who have invested thousands in research and development and now need to turn a profit. Small, commonplace things like studies having a 'run-in' period where carefully screened participants get to try the therapy before the trial actually starts so that people who don't get on with it don't take part. Hey-presto, when the trial data are collected - almost no drop-outs and hardly any side effects reported. Results being extrapolated and amplified with 'mathematically modelled' outcomes. If x changes to y then the model suggests that umpty bazillion people will be 50% better off (rather than simply counting the number of events that did or didn't actually happen in the sample population). Data meta-analysed to within an inch of its life and suddenly the conclusions reached 12 months ago that there was not very much benefit, get republished with a handful of results added to suddenly show something startlingly different.

The problem for me is that it actually takes quite a lot of effort to go into the detail. Part of my work with NICE as a patient representative on the Type 1 Adults Guideline Development Group has involved reading and reviewing many more research papers and results than I would ever have normally. It soon became clear to me that behind the confident assertions of the 'conclusions' by the authors of some papers there's a sort of hollow flimsiness to the whole thing. And in these days of 'evidence based' medicine this gives me more than a little uneasiness. Some major decisions are taken about what is or isn't an appropriate way of treating people are taken on the basis of medical research results some of which - to my inexperienced eye - looks rather less than rock solid. But who does that? NICE are pretty good at trying to filter though the mire most of the time, but so many decision makers, politicians and journalists seem only interested in the headline.

Now I'm not quite in the 'the whole thing is a complete Big Pharma Conspiracy' camp, but I do wish we lived in a world where I didn't have to worry about the motivations and financial background to all this. Where I didn't have to look for the agenda behind the research. Where new treatments and therapies and approaches were developed, adopted or dropped on the basis of what actually worked for people rather than what made the most money for the companies involved.

I realise that I am extaordinarily lucky to live in a country with an organisation as amazing as the NHS to underpin my healthcare, but there is only so much money to go around and I would love it if every single penny of that was being spent in the very best ways on the most effective treatments, interventions and (shock horror!) non-drug based methods like, er, you know, type 2s doing rather better when they eat fewer carbs.

Oh... and if I ruled the world Bakewell Tart would have absolutely no effect on blood glucose levels too.

Nice new project

Just back from a short break in Cornwall. Lots of sea, sand and set changes (more on that later).

While away I had some slightly surprising and quite exciting news. A few weeks ago I caught sight of a thread on one of the forums I frequent that NICE (the National Institute for Clinical Excellence) were seeking patient/lay members to join the Guideline Development Groups for some of the diabetes guidelines, including Clinical Guideline CG15, Type 1 Diabetes in Adults.

Now I have good reason to like NICE very much. Because of the way the current guidelines are set out and worded I qualified for an insulin pump despite having a pretty decent A1c (because keeping it that way meant I lived my life constantly a little on edge about the possibility of a hypo). NICE guidelines lay down what is currently thought to be the best (and/or most cost-effective) approach in diabetes treatment. At the very least they give you an 'official' version of the sort of care you should expect that you can wave in front of any healthcare professional who still wants you to mash up bits of dead animals and drink your own wee to test for sweetness.

Back when I had my soapbox moment about the lack of carb counting education experienced by some people I reflected that the NICE guidelines were good, but perhaps a left just a little too much room for manoevre and were not up for review for some years. Here was my chance to put my money where my mouth was and get involved in the review process myself. It's a 2 year project with meetings approximately every 6-10 weeks. It involves quite a bit of reading and sifting of research papers in preparation for the meetings. There's a small payment to cover the cost of attending the meetings and travel expenses are paid.

So I filled in the application form, sent it off and waited. The week before last I took a conference call for the briefest of informal interviews and a few days ago I had an email to say that I had been appointed to the Guideline Development Group as one of two patient members. Yay!

Over the past few years I have hugely enjoyed getting to know lots of people with diabetes through this blog, various forums, Twitter, Facebook and all that. People whose experiences I hope to be able to feed into the review process along with my own.

I won't be able to share the details of any of the discussions before the guideline is published, but may ask you, dear reader, for your input/experiences in advance of some of the meetings to be able to bring wider view to the table.

Exciting times!