#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.

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.

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!

Top notch transition to a pump : QiC Awards 2012 Guest post

I was invited to write a blog post or two for the Quality in Care (QiC) awards 2012. QiC highlights and recognises outstanding practice and initiatives of healthcare professionals, NHS trusts and other organisations in the care of long-term conditions including diabetes that meet the values of QIPP (Quality, Innovation, Productivity and Prevention). The last post shares the outstanding experience I've had moving to an insulin pump.

On a slightly brighter note I thought I would share my absolutely excellent experience of moving from MDI (multiple daily injections) to Insulin Pump therapy. The clinic I attend is quite pro-pump and the idea was first mentioned to me some years ago as a possible solution to my concerns over hypoglycaemia. I have never had a problem with severe episodes, but the low-level dips have always been a little too frequent and in more recent years I had become slightly concerned that my warning signs might be weakening.

When an insulin pump was first suggested, many years ago, I was intrigued as to how (if a person was still going to be making similar errors in carb counting, for example) the transformation in control came about. Unfortunately, the consultant who was advocating a pump could not clearly articulate ‘how’ it improved things – just that it did. Sadly, this was not really enough for me. Like almost everyone considering a pump I had an instinctive and fairly profound unease about being attached to something 24 hours a day, 365 days a year and I remained firmly ‘pump averse’ for several years.

It was only after perhaps two years of renewed effort in gaining real control over my diabetes, while at the same time coming into contact with a number of pump users online that I began to understand how and why pump therapy worked. At the same time though, I became aware of the ‘postcode lottery’ that seems to be part and parcel of getting pump therapy funding in the UK. I wondered if I had perhaps missed my chance, or if it would take the three or four years of struggle that others experience.

Having pushed my MDI to the limits, learning an awful lot about how my diabetes works, improving my HbA1c and losing a lot of low-level hypos into the bargain I realised that however good it got it still wasn’t going to be good enough. I decided to investigate the option of a pump at my annual review in September. I had a good two-way conversation with a Registrar who agreed that many of the challenges I continued to face would be better tackled with an insulin pump.

She booked me an appointment with the Pump Specialist Diabetes Nurse the following week. Although I hadn’t officially done a course on carb counting and dose adjustment it was agreed that I knew enough for this not to present a problem. The DSN put my case to the pump clinic Consultant, who agreed funding with the PCT and I started on an insulin pump a few weeks later.

I cannot imagine a better experience. I was treated as an individual throughout and my particular needs and circumstances were taken into account at every stage. Not only that, but the transition was handled excellently – with lots of care and attention, frequent phone calls and follow-up during those tricky early days.

When things go well it is hard to imagine a better healthcare system than the NHS.

All too familiar? : QiC Awards 2012 Guest post

I was invited to write a blog post or two for the Quality in Care (QiC) awards 2012. QiC highlights and recognises outstanding practice and initiatives of healthcare professionals, NHS trusts and other organisations in the care of long-term conditions including diabetes that meet the values of QIPP (Quality, Innovation, Productivity and Prevention). This second post does a bit of moaning about decentralised care.

Familiarity breeds contempt they say, and I suppose that is true of those with chronic conditions. We have attended so many appointments, check-ups and dealt with so many prescription requests over the years that we can become quickly frustrated by any perceived administrative inefficiency.

We are already devoting quite a considerable amount of time and effort to this ‘playing at being a pancreas’ project and have little enthusiasm for repeat appointments and any apparent lack of communication between different parts of our care team. For example, I needed to make some changes to my repeat prescription recently as suggested by the DSN at the hospital. It took at least four attempts to get it right at my surgery. This is about average. I’m not sure how I could have made the requests any clearer. In the end it took two handwritten notes, one typewritten, one from the DSN herself and three visits to the GP’s reception.

At no point was I called or emailed with a query or to request any clarification, I just had to keep going back and asking for the same thing over and over until the repeat prescription form eventually came out right. And this is a surgery that I know handles their aspects of my care brilliantly. Compared to other people’s experiences that I read on various forums, I know I am very lucky.

There seems to be another push for the decentralisation of care at the moment. I can remember when what I used to refer to as my 30,000-Jab Service (annual diabetic review) took place with two visits. I would get some bloods taken a week or two before my appointment, then go along to clinic and spend the inevitable hour waiting to be seen before being variously poked and prodded until everyone was satisfied that I was OK to be released for another 12 months. All in all, including the blood tests, it probably took about two or three hours.

Change 1: The arrival of eye screening units. The traditional scary-pupil-enlargement-and-bright-light-combo was taken out of the review and began to involve snazzy photography by a mobile unit at the GP surgery rather than being peered at by someone clutching an ophthalmoscope and holding their breath. Not a bad change – but it did involve an extra appointment and thus a bit more waiting room drudgery.

Change 2: The next thing that happened was that a practice nurse and GP at my surgery went on a short course, and they began to run a diabetes clinic. Since I’m on their books I was not-very-gently encouraged to attend (I always assumed there was a financial incentive). Up to that point my care had always been at the hospital, and for a year or two I endured double appointment ‘fun’. Twice the appointments, twice the blood tests, twice the reviews, more hours spent in waiting rooms, more time away from work – no actual benefit.

Since the surgery was not taking no for an answer I ended up signing myself off at the hospital and kept going to my GPs for a few years. This was all well and good for some things, but after drifting for a while with a not-disastrous-but-not-great HbA1c I had a peculiar hypo one night that shook me up a bit and ended up with a precautionary, though looking back largely unnecessary, trip to A&E.

Some of the long-standing frustrations and/or peculiarities in the micro-management of T1 became more pressing. But when I went for an appointment first with the practice nurse, then with the practice GP ‘with interest’ both looked a little rabbit-in-the-headlights when I started asking pointy questions about changing insulins. I think the GP said ‘It’s a bit out of my league really’. So I was referred back to the hospital again. Approximately 18 months later I am going through that same loop again – ‘review overdue’ is appearing on my repeat prescription request form. I’m booked in to the GP clinic again. Even though I had an ‘annual’ review six months ago.

Now that doesn’t sound too troublesome as a story – but coming from a point of feeling ‘well cared for’ for about 10 or 15 years with one or two appointments a year the number of appointments has risen exponentially. And often the appointments can be 2 minute affairs just to say that someone doesn’t know and I’d have to go and see someone else.

I am extremely lucky in that my working hours are quite flexible, but in previous jobs this would have been extremely difficult to manage. I can understand the logic in trying to free up time in hospitals by getting some of the checks and tests (weight, blood pressure, eye squinting, toe tickling and so on) done in a local GP surgery, but the problem seems to be that the various parts of the now widespread team are not sharing their bits of information effectively.

Additionally if you break down one appointment into four or five different slices it becomes a lot more troublesome and time consuming for the patient. From the surgery point of view I can see the QoF* incentive to get good results from all the people with diabetes on your books – after all we are expensive to keep – but surely a result is a result? A test and/or notes taken at hospital clinic should not need to be repeated a month or two later at the surgery unless there is a compelling clinical reason for doing so.

*The Quality and Outcomes Framework allocates 'points' for GP surgeries where patients with long-term conditions are meeting certain criteria and/or have all the relevant records up to date. The points then equate to additional budget for the surgery.

My other full-time job : QiC Awards 2012 Guest post

I was invited to write a blog post or two for the Quality in Care (QiC) awards 2012. QiC highlights and recognises outstanding practice and initiatives of healthcare professionals, NHS trusts and other organisations in the care of long-term conditions including diabetes that meet the values of QIPP (Quality, Innovation, Productivity and Prevention). This first post considers some issues that can arise for HCPs when dealing with people who live with a condition day-in day-out.

I should perhaps begin by saying that during the 20 odd years that I have had Type 1 diabetes I have had what I consider to be excellent care from pretty much every DSN, registrar, consultant, dietician, phlebotomist and GP I have come across. I am also aware, from reading accounts from people with diabetes elsewhere in the world, that the UK is a pretty darned good place to live if you happen to have a wonky pancreas. Now anyone who has spent any time treating people with diabetes will surely know them to be the most even-tempered, uncomplaining and obedient of patients(!) and I’ve been invited to reflect on my experiences from ‘the other side of the desk’.

Diabetes is a complex and contradictory condition to be diagnosed with. Long after the initial shock has worn off, patients are regularly assailed by conflicting emotional responses: Having diabetes doesn’t have to stop me from doing anything I want to... Diabetes stops me doing anything I want to... I can eat anything I want as long as I dose for it correctly... There is absolutely nothing that I can eat without causing complete chaos in my levels... I can do this! I just can’t do this any more! With diabetes it’s possible to experience any of these feelings in quick succession – or quite possibly several all at the same time.

What is worse for healthcare professionals, of course, is that diabetes is insanely personal. In the Diabetic Online Community (all those diabetes blogs and forums that you probably don’t read) there is a well-worn phrase that stubbornly refuses to die out from over-use – Your Diabetes May Vary.

One-size-fits-all this isn’t. Advice you might give to one patient that would work perfectly, might be a complete disaster to the next. Not only that but we diabetics, especially those of us with Type 1 tend to hang around for quite a while these days. If diabetes was my job, I’d be edging toward a carriage clock and time off for good behaviour by now.

This poses two main problems for HCPs I think. First is the assumption that we’ve been told things before. Second is the assumption that we don’t have a clue what we are doing. The first assumption could leave a patient floundering for years without a basic understanding various diabetes management approaches, dose adjustment or carb counting for example, simply because they were not in vogue when they were diagnosed. These patients then don’t get updated later as it is assumed by fresh faced perky young medics that they must know all this already. The second assumption could see a steel shutter slam down during a conversation if a suggestion is made that ‘If you are high you need to take a bit more insulin’ to a person who has been carefully tweaking their own doses for years.

In order to control my diabetes to my satisfaction I have to think about it more or less continually. It’s the first thing I think about when I wake up, and the last thing I attend to before sleep. There’s not a morsel of food that I’ve eaten in over 20 years that was not first considered in relation to its likely effect on my blood glucose levels. Any appreciable change in level of activity even just popping round the shops needs a bit of thought and a little forward planning. Even changes in the weather have to be watched. When I’m managing my diabetes well, it’s pretty much a full time occupation – the team I see get to think about it for about twenty minutes once or twice a year.

Beating Diabetes... anyone fancy a cure?

I'm just coming to the point in my life where I've lived longer with diabetes than I lived without it. Ever since diagnosis I have read about, or been told about exciting research which could have profound effects on those living with diabetes. I have witnessed the release and gradual acceptance of amazing new technologies and treatment options which make diabetes more controllable than ever before. Every year I've heard of breakthroughs that bring that elusive prevention or cure one step closer.

But anyone who has more than a passing experience of this condition will know that it can be an infuriatingly complex and difficult business. Most reports of dramatic research developments usually end with caveats about 'very exciting, but early days' and 'further research' being needed. Typically the timeline suggested before things come to fruition is 10 years. I don't know why they pick that number, but they always seem to. Long enough, perhaps, for everyone to have forgotten the promise.

So you might think by now I'd be all cynical and downhearted? Nope.

Before diagnosis I had never really had much to do with the medical profession. I'd not broken any limbs as a child, or needed to go to the doctor much. I had a brief stay in hospital when I was around 8 after being hit by a car crossing a road, but on the whole medics, hospitals and GPs weren't really in my frame of reference. Suddenly, in my early 20s there I was. Right in the middle of multiple appointments and practitioners, a hospital stay, armfuls of blood tests and with an on-going connection to all these people stretching out in front of me. Not only that but I became very aware of others diligently working away in quiet labs prodding and poking at diabetes, turning it over and over with a stick and trying to figure out how to make it easier to live with, and if possible disappear completely.

There has never been a better time in history to be a diabetic (and given the numbers of us around, that's quite a good thing). And tomorrow, or the day after, or the day after that, someone, somewhere will have a thought, or observe some happy accident, then test it and tweak it and suddenly BAM!

No more diabetes. Ever.

That would be great, right? If you live with D, I'm pretty sure you'd like that. Quite a bit. And the fact that there were lots of thoughts and ideas earlier that didn't come to anything will not be important. The dead ends and diversions will be of no consequence because the beast will be slain, or the perfect treatment option to control it will be right there in our hands. If not 'no more diabetes', I'll settle for 'no more diabetic complications'.

If only we could speed the process. If only we could, in our own small way, play a part in that amazing story.

Well we can.

I was contacted a week or so ago by someone who asked if I could raise the profile of a campaign to help beat diabetes. The NHS's National Institute for Health Research 'Diabetes Research Network' has launched the Help Diabeates campaign to encourage people to get involved in the search for a cure or better treatment for diabetes. Because of the nature of the teaching hospital I attend for my diabetes care I have been able to take part in various research projects in the past. But this, I think, is part of the difficulty... Any researcher with a brilliant new idea to try needs to be able to make observations and test things with suitable candidates to develop their knowledge, explore their idea and push it further. If they are attached to a clinic they might be able to ask around and see if there any volunteers, but I suspect they are going to be scratching around with only a handful of people who fit the criteria.

And if they can't get their research done we can't get our cure.

In simple terms the Help Diabeates campaign offers you an easy way of offering to be involved at some point, and only if you want to for any particular project. It's a way of throwing the research net a little wider. You add your name to the database, they ask you a handful of questions. Then if there's a research project that might benefit from your involvement you get contacted and are given the chance to take part. Even if you decide you want to and then change your mind, you can back out at any stage.

What are you waiting for?

Find out more about Help Diabeates here, then sign up to take part here.

And if you dont live in the UK? Well just look around. In a lab somewhere in your country there's a clinical trial with your name on it.

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Diabetes explained. Search for diabetes treatments at a private hospital in Nottingham.