Friday, 2 August 2013

The DOC and its Stakeholders - Utilising a Beautiful Thing?

The biggest change in the collective influence people with diabetes (PWD) have on diabetes care is about to happen in the coming few years. (I am not really writing about finding the ultimate cure here – for that as we all know that is just 5 years away. (Circa since 1964.) No the change I am writing about is the influence of the informed, knowledgeable, educated, empowered and connected patient via the Diabetes Online Community.(DOC)

This group of patients, families, friends and supporters, is something relatively new in the 9 years since my diagnosis as a T1D. It is driven mainly by the proliferation of social media and the desire to seek out and provide peer support to one and other, and to develop advocacy for diabetes in general. Participants in these informal networked online communities are in almost daily contact with each other. They cross social, political and geographical boundaries. Their numbers, level of sophistication, influence and expectations of what constitutes quality healthcare provision are rising very quickly.

On a personal level the DOC has made a transformational positive impact on my own health and well being and my psycological relationship with my diabetes. POSSIBLY MORE THAN ANY CLINCIAN EVER HAS. I do not think I am alone in this assumption.

I have a livelong chronic condition. If I can contribute to those communities by sharing my experiences whilst also learning from others, and this improves my and others quality of life, then so be it. I think it is a worthy investment of my time and energies. It appears many others with diabetes also feel the same way given their actions and contributions to the DOC.

I believe it is also our duty to be honest and open, to a level we each individually find comfortable, in contributing to the collective lived experiences of PWD. These experiences can then be utilised to improve the current good, bad, and indifferent care we receive. It can also contribute and inform the future research and healthcare provision agendas.

The focus of this blog is not to detail reasons for the meteoric rise of the DOC. The reasons why PWD, their families and supporters contribute and gravitate to the DOC have been documented far more eloquently than I could by people like @sowerbee
http://thetangerinediabetic.blogspot.co.uk/2013/04/what-does-doc-mean-to-me.html

The reason for this blog is to explore how the other organisational stakeholders in the DOC can develop successful strategies to interact on a functional level with the DOC, for the benefit of all. By organisational stakeholders I am referring to Governments, Clinical Bodies, Health Service Commissioners, Clinicians and Health Care Professionals, Public and Clinical Health Researchers, Charities and Non Government Organisations, Pharma, Telecoms, Technology Developers etc.

However this also raises the question- How do patients and families in the DOC interact with these other stakeholders? At the end of the day they hold the keys to providing improved healthcare, quality of life and hopefully the cure. (5 years from now obviously). At the moment these relationships are embryonic and immature and are treated with suspicion by some on both sides. The other stakeholders appear unsure of what to make of, and how to engage with the DOC. I also observe a small minority of patients who are uneasy about them engaging with the DOC at all, as this may change the enthusiasm, the by the people for the people ethos, that appeals to many who use the DOC.

However as patients and families in the DOC we are a body of people with huge levels of knowledge and insight into the everyday lived experience of diabetes. We know where the gaps in current healthcare provision are, what needs to be improved, what needs redesigned to maximise its potential, what needs to be binned and started from scratch, because we live with it day in day out, year in year out. This information is vital to inform the development of new tools, new devices, new education programs, new clinical pathways, new training of healthcare professionals, new technologies, new translational research for the benefit of all stakeholders in the improvement of quality of life when living with diabetes.

The question I ask myself is how the DOC works as an efficient, trusted and knowledgeable agent for change, as well as for our own peer support, advocacy and enjoyment. When I talk about agent for change I mean things like influencing....

• Improving healthcare provision and care
• Reducing the postcode lottery of current diabetes healthcare provision
• Developing personalised solutions to healthcare needs
• Providing carbohydrate counting education and skills for all those that need it
• Integrating technology, monitoring and syncing that is of dual simultaneous use to me and my care team
• Improving identification and care of mental health related issues in diabetes care pathways
• Reducing the cost of diabetes care
• Improving education, training and support for parents of children with diabetes and all PWD
• Developing new cost effective patient clinical interactions- making the most of patient time in front of the HCP’s
• Integrating social media into the patient clinician interaction for easy access to contact, info, advice and feedback. At a very basic level - Why can’t I email my clinic???? Why don’t they email me?
• Developing health and well being measurements beyond the Hba1C test (e.g. Is measuring success or failure only by a flawed metric the best we can do?)
• How do researchers interested in diabetes utilise and interact with the DOC without destroying its unique selling points and attractiveness to its contributors (see @Sowerbee Blog)
• Developing a truly national (UK) diabetes registry where patients and families who are potentially interested in participating in research are identified.
• Rolling DAFNE out across the whole country (UK) – The scientific and economic evidence base as to why this should be done is already available; the improvement in patient outcomes is also there for all to see.
*Can someone please explain the barriers to this happening to me? I hear week in week out people crying out for the knowledge and skills this course brings to quality of life of those living to T1D.

These are just a few items I can think of off the top of my head as I write this blog. I am sure you will have your own and have probably talked about them in the DOC.

Patients, families and organisational stakeholders are in the main trying to achieve the same outcomes. The one consistent is we are trying to improve the quality of life of people with diabetes; we just come at it from different angles, and here lies the problem. Do they trust us and do we trust them?? As @health_Shmi tweeted a wee while ago about her relationship with diabetes, “It’s a dance. We are still learning the moves and have not quite got in sync yet”.

Well I feel the same can be said about the DOC and its wider diabetes stakeholders.

By its very nature the DOC is organic in its development, it has little structure, it is participatory in its design, i.e. it has no boundaries and goes where the contributors take it. There are few rules. This structure and model does not lend itself to synergy with the other organisational stakeholders. These organisations are fond of, and look for, stability, longevity, economic resilience, clearly defined management structures with known influencers and identified agents of change. In essence linear structures with tried and tested command and control points, that can be assessed, monitored and analysed for inputs, outputs, efficacy, validity and cost benefit. This therefore makes the relatively new DOC quite prickly for a lot for these organisational stakeholders to really get a handle on. However that is their problem to overcome and perhaps ours to smooth their journey.

What is true is that as PWD become more knowledgeable, empowered, and in contact with one and other, the existing model of diabetes healthcare provision (the top down approach) is being challenged. The more forward thinking clinicians and stakeholders are grabbing this opportunity to inform their practice through interaction with this new body of lived experiences the DOC provides. This then contributes and informs the development of care pathways, service and support provision utilising a bottom up approach to service delivery. Great examples of this are @parthakar, @Paddy_English, @teambloodglucose, @gbdoc, @DiabetesSocMed

Unfortunately many others do not like to rock the boat, get out of the comfort zone and challenge the current status quo. (See the excellent blog via @anniecoops by @helenbeven ow.ly/npMR4 on agents of change, boat rockers and rebels in the NHS).

The reality is those who do not embrace the future will be left behind and overtaken by those who do. As Tony Benn of all people once said…..





So in summing up
1. The collective lived experience of the DOC can provide very powerful insight. This is extremely useful to the other non patient stakeholders in developing the future of diabetes provision. This interaction is something we should not be scared of. In fact is necessary to obtain the level and quality of care, future products, technologies and healthcare we desire.

2. Non patient stakeholders- Get your acts together! This community is only going to grow and become much more influential on a local, national and global scale.

3. Clinicians, researchers, other non patient stakeholders - take note of what is happening here, understand it, use it, but DO NOT DESTROY IT. We are very protective of what we are building in the DOC!!!!!!!!!! (See reasons for PWD joining the DOC. I believe the previously quoted blog by @sowerbee speaks for most contributors. If you have not read it already you should!)

So until 2018 when the cure will be found (2013 +5 years) please think about utilising No.4

4. Put the patient lived experience at the heart of developments undertaken in our name, whilst utilising our collective lived experiences as the basis for those changes and improvements.

The Glucose Kid
@adddie114
#eachdaytothefull

Wednesday, 1 May 2013

Maximising food choice and portion size variations


I nearly called this blog site “The Carb Counter” as when fumbling around for site names, I realised the carbohydrate counting thing was one of the major changes I had to embrace to live with diabetes.

We live busy lives and increasingly consume foods in less formal ways away from the traditional family home. These foods are often produced and made by others, and do not always have that illusive nutritional label. Subsequently counting carbohydrates or understanding the total weight of carbohydrate consumed is complex and not straight forward in today’s modern food environments.

My own carb counting nemesis is usually the business meeting lunch buffet. You know the one designed to make you fall asleep through that important afternoon session. Whoever designs the catering offering at such events is certainly not a person with pancreatic issues. The food offering is usually the bastion of odd sized and shaped sandwiches, bizarre pastry products with fancy lattice work and obscures bite size ditties, where you are never quite sure if they are plant, animal, mineral or “other”. That’s before we even get to the mini pizza squares and odd shaped single portion desserts.

The straight jacketing of a strict portion size and food type controlled diet for people with T1 diabetes of yesteryear has been replaced with the modern day carbohydrate counter. Trying to make our way in the very complex food landscape that is the 21st century retail consumer environment takes effort skills and knowledge.

In its most simplistic form we have 6 alternatives to help us maintain our freedom from the straight jackets of yesteryear. The reality is a little more complex but bare with me for the purpose of this blog.


  1. Guestimate (not recommended for longevity or short term sanity)
  2. Weigh ALL foods consumed that contain carbohydrate.
  3. Limit dietary intake to types and amounts of food where we are confident of carbohydrate load.
  4. Eat foods with clear nutritional labelling of carbohydrate load.
  5.   Estimate food portion size and deduce the carbohydrate load.
  6.  Use previous knowledge from past experience (scales, labels, photos or trial and error)

On most days I will use 4 if not 5 of the above at certain times. This usually depends on my familiarity with, and frequency of the food I consume. For example
Breakfast         Use scales to weigh                40g Shreddies Cereal /180g milk
Lunch               Previous knowledge                2 slices of bread, apple, crisps
Snack               Check label                              Mars Bar 
Evening meal  Estimate using photo/ label     Naan Bread.
                        Use scales for                          Basmati rice,
                        Estimate using photo              Mango chutney
                         

I find it is just not possible in today’s fast paced varied lifestyles and food environments to weigh everything. Therefore I use food portion size estimate in my daily routines. It is especially useful for those foods eaten less frequently or which I am less familiar. I find estimation vital to maintain the variety of the food choices I want to be able to make. As a foodie the thought of not eating something because of my pancreatic status, does not really enter my head. The principle that I will not let it beat me prevails.

Trying to stay in good control and eat as a person with diabetes has some limitations and barriers to overcome calculating carbohydrate load;

  • It is practically impossible to weigh all foods you consume.
  • Not all manufactured foods have nutritional labels E.g. Bread baked in supermarkets
  • Nutritional contents of foods are not readily available in most food service outlets (although some of the fast food outlets are getting better at detailing nutrient contents. But who wants to eat at the shit in a tray merchants anyway. © Mike Skinner The Streets)
  • Carbohydrate contents of foods made my others e.g. food made by friends does not usually have carb load readily available.


So the need to estimate food portion sizes in today’s modern food landscape is, for me, a necessity. Without it I would be back to yesteryear eating regimented amounts of carbs per meal with no or little amount of variety and restricted food choices. As food plays such a big part in my home and work life this would be horrendous to me. The joy I get from the different types and varieties of food I consume, plus the desire to constantly seek out new foods and cuisines, is facilitated in part, by the ability to estimate portion sizes of foods.

           

In a nut shell I am a great advocate of portion size estimation to facilitate the variety, amounts, and variation in food choices I can make. I do not think you can ever be 100% accurate, however when used in conjunction with other strategies such as scales, labels, previous knowledge, it can be a very powerful tool to allow a whole range of foods to be explored that would otherwise be difficult if not prohibitive to eat.

Examples of eating occasions where I find carb counting difficult and portion size estimations come to the for:

  • Eating outside of my home -  restaurants, work place, most food outlets
  • Foods prepared by others e.g. recent one was homemade bread at a friends house
  •  Takeaway fast food
  • Celebration events, weddings, birthdays, xmas, work do’s
  • Unfamiliar foods on holiday
  • Fruit
  • Anything that involves alcohol and food

Increasingly thanks to the success of patient education and empowerment programs such as DAFNE (Dose Adjustment for Normal Eating) http://www.dafne.uk.com/ counting carbohydrate portions is coming increasingly popular as the method of matching insulin requirements to carbohydrate load of food consumed. In fact the counting of carbohydrate portions has been around since the 1920’s.

In principle this method is excellent, can be taught by Health Care Professionals (HCP’s), and supported by a increasing range of tools to help us to estimate, monitor and track our carbs consumed. These include diaries, apps and portion books. 

With the advent of the Smartphone and the virtual 100% use of mobile technology, the need to constantly carry a portion estimation book, has been removed. This was always a barrier for me in the past. However now the levels of data I need to carry out estimations can be stored on a app on my phone (I carry every where with me anyway) and thus is easily available. This facilitates less guestimates and the increases the types of foods I can consume and where I can consume them. For me this has released me from the barrier of getting the portion book out every time you want to eat. 


After a relatively short period of time I built up the skills and experience to regularly be successful at estimating portion sizes using photographs, thus improving control and reducing those highs and lows by reducing the grey area when otherwise a guestimate would be used. Or a “I cant really eat that” decision is made.

The developments of products like;




utilise ranges of portions sizes and aid estimation of carbohydrate loads

The bottom line is that using portion size estimation tools allows me the flexibility to eat what I want, when I want, how I want, where I want and with whom I want. This is hugely empowering and satisfying in my food choices and is a major factor in keeping me happy and healthy.

Note – I have no involvement with any of the above tools. They are provided as links to things that have helped me maximise my food types and portion size variations.



Friday, 19 April 2013

The Obligatory Hendrix Perm


Well having decided to start a blog site the next major hurdle was where the hell do you begin?

So I decided to start at the most logical place where these shenanigans first came about. The day of diagnosis.

Looking around at other sites it seems Obligatory to have something on diagnosis or its impact in your first couple of posts. So like the beautiful sheep of my native homeland of Cumbria I will follow the flock as this seems to set the tone.  So here goes with my story………

                                          



The day was 13th September 2004 my diabetes date of birth. That makes me nearly 9 years into the crazy adventure of Type 1 Diabetes Mellitus. There have been some crazy highs and some deeply depressing lows (maybe some more about them in future posts). However in the main I am now fairly well controlled with the multiple daily injections of Levemir and Novarapid insulin.

As well as being a thirty something year old with T1 diabetes I am also a father of two, a brother, a son, and husband. In the last 2 decades I have earned my pennies being a consumer scientist and a chocolate salesman, but in more recent times as a public health nutritionist who is currently managing a research program in the NHS. So much potential for diabetes related blathering to follow.

Anyways I digress - That diagnosis.
The day in question is etched onto my memory forever. However I want to start a few days earlier. My wife and I were enjoying the last few days of our holiday in Greece. I woke up one morning and had to get a doctor out to our hotel. I had a medical problem.

[Point of order No1 - Mum, if you are reading this, be warned- I am about to mention my penis on the internet]. The medical problem was not diabetes (or so I thought)…………. but that my penis was about to fall off. This was rather worrying for a 28 year old male!

As it turned out my penis was not in fact about to fall off, but I had a very bad case of Thrush. [Thank God and Praise the Lord]. Having never had the misfortune to encounter Thrush before, I was more than a little horrified to say least. I was also more concerned about where this damn thrush had come from. I was thinking my wife, who did not have thrush, [NB – my wife told me clarify that point at this juncture], would be thinking I had been doing the do with someone else or something.

Point of order No2 (for my mum really) – The inability of people with diabetes to process carbohydrate if not controlled properly with insulin means you excrete excess glucose in your pee. This extra glucose forms a delicious “all you can eat buffet” for the little Thrushy beasties. Yuk!!! Therefore thrush is often one of the first symptoms of uncontrolled blood sugars.

So the doctor came out gave me some pills and some cream and that sorted that. For the last two days of the holiday I did an unusual thing. I drank loads of full fat Coca Cola. This was highly unusual for me as being a foodie and nutrition conscious type of guy I never usually consume fizzy drinks. However I had this uncontrollable desire to consume loads and loads of coke.

We returned home from holiday on the Sunday as I was starting a new higher education course on the Monday. By chance I sat in the lecture theatre next to this Irish guy who I had never met before. After a couple of hours he turns to me and says “you are hammering the water this morning, were you out on the beers last night?”  I reply “no but for the last 3 days I’ve been able quench my thirst”.

This chance encounter quite possibly saved my life. He persuaded me to check my blood sugar levels on his testing kit. So out comes a new aseptic finger pricker and he drew blood from my finger. (The first of many thousand times since).

I looked down at the display and it read 44.7mmol/L. naively I enquired if that was about right? For the record a healthy person should have reading of around ten times less concentration at only 4–7mmol/L.
The Irish man very assertively informs me I better get to hospital.  He would not take no for an answer “if you do not go now I will ring a taxi and take you there bloody myself”. So I eventually get to A+E, the nurse tests my blood and says “47.5 that’s the highest blood sugar reading I have ever seen”.  This is not what you want to hear when in an A+E department at a major hospital. As they say the rest is history.

So that was 2004 the year of my diagnosis. Thankfully I have not seen readings anywhere near that since that day although like all people with diabetes I have my ups and downs. I am very lucky to have been diagnosed and still be treated at North Tyneside General Hospital who have looked after me in this journey with T1 diabetes.

The moral of story is

  • I was unaware of the symptoms
  • I was rather blasé about going to the doctors
  • I was young, fit and assumed it was nothing serious                                                   
  • (Consumed by that air of invisibility that good health and youth tends to foster).

As we know there is a growing obesity epidemic in this country and the related rise is Type 2 diabetes is going to be a major health problem. The need for knowledge of the symptoms of diabetes to be communicated to the general public has never been greater.



This story is dedicated to the Irish man who came to my rescue, seen my symptoms and acted on his gut instinct. He did not walk by on the other side. I will forever be eternally grateful to him. He is currently having his own non-diabetes related health issue at the moment. I am hoping that being the inspiration for this blog site will make him proud and it brings a smile to his face at this difficult time. Thinking of you buddy.
So off we go on this blog site thing and as it begins to evolve and take shape and as my Irish friend would say. I hope you enjoy the craic! 
 “I love you baby like a miner loves gold. Come on sugar, let the good times roll.” (J Hendrix)


Thursday, 18 April 2013

My new mantra in life!


Some words I wrote in 2006 whilst trying to come to terms with the condition


A JOURNEY WITH MY NEW D FRIEND
Got to have another hit,
Just to get through
Along life’s  journey
I need get through

Anxiety plunges to a new depth
Skin creeps from my bones
So empty yet so full,
My life’s just started turning,
Oh dear lord how I’ve wept

Around the corner be there salvation
Balance for body and soul,
But I fear getting older
With the syringe as my salvation

Still, some say it could be worse,
You’re just having some troubles son!
Oh how I wish they could know
It’s this way or the hearse

I look to the future,
It’s no dead end
At peace with ones’ self.

To the future my friend!

Adrian Hawkins
21st August 2006





HYPOGLYCEMIA
Is that the first flush or is it the heat?
Between pillar and post my conscience races
Do I hear the alarm or am I mistaken?
Temperature then rising with the explosion

The Panic sets in, I now feel the alarm
The march to victory the small ants begin
Through orifice and pore their feet march on
Engulfing my body, the cravings begun

Eyes open wide, fear no where to hide
Oh, those beautiful sugars passing my lips

Gravity increases, limbs feel like lead
Neurons lay idle, paralysed in the head
Sinews unable to complete their task
My true feelings a smile cannot mask

My temple no ant hill, for that has now passed
The day still runs on, but for me it’s all gone
To slumber and lethargy, with little parlay
Please God reinstall my motivation today

The all clear now sounded, but I’m not the best
Get back to work, but I need some rest
I retreat to my loved one, the day now complete
In solving sugars mystery, I will not be beat


Adrian Hawkins
August 2006















Tuesday, 10 July 2012

                              Site currently under construction.
                           Please call back in a couple of days.

 

Today's photo of the day.........  
One for the Tyneside diabetics