Silver linings rather blue mondays

Ok, its finally arrived, it’s no big deal, but it’s a kinda personal milestone, others have achieved so much more and done it so much better, but hey this is one I plan to celebrate…kinda!

On the 23rd of October 1990 at 10.10am I was finger pricked at an emergency appointment with my GP following a week of school due to feeling crap – constant weakness and constant thirst and constant visits to the loo.

2 minutes later, and yes that’s how long it took in those halcyon days a result of 13.6 mmol had a swift letter being hand written by my GP and an instruction to the mother to take me to A&E immediately as he thought I might have diabetes.

Now my mother being my mother did insist I couldn’t go to hospital looking like I did, so I had to go home for a wash and change of clothes.

Anyhows we gets to hospital at around 12 present letter at reception and for the first time in my life I didn’t have to queue or wait for triage, it was straight to cubicles…can I just say at this point in time I was prodding myself to keep awake, I sooooo wanted to sleep.

Another finger prick – oh how I’ve grown to love that procedure, and a result of 23.6, worried looks and off for phone calls, apparently I was being admitted to hospital, excuse me????? Just give me a tablet or something and let me home, oh how foolish you can be.

Ward 4 was apparently where I should be, but there were no beds, so I was stuck in A&E while a bed could be found and given a jug of water to drink, which was grand, but it wouldn’t bloody cure this thirst I had.

Eventually I was admitted to Ward 11, private room, apparently diabetes is a scary condition??? It was in Ward 11 of the Ulster Hospital that I got to meet 2 of the most important people in my life with diabetes – Sister Campbell and Dr Nelson – my education and introduction were quick, nothing was couched to make it seem that what I now knew I had, DIABETES, was an easy condition to be diagnosed with, they quickly made it clear my life was changed forever.

3.30pm on the 23rd of October 1990, the time that I class myself as fully becoming someone with diabetes, my first injection of what I was told was rapid acting insulin, something to help bring my blood glucose to a normal level – apparently this was between 5 and 8 mmol and the blood test before I took my first injection of insulin? It was 30.8 mmol.

So that makes today the 25th anniversary of my life with diabetes, my SILVER, roll on the next 25, I want my gold, or do I? Maybe in that 25 years a cure will be found, maybe not, but you can live in hope or die in despair, and trust me, diabetes will help with the dying if you don’t live with hope, a calculator, a food label and a lot of blood tests.

Diabetes isn’t a death sentence and you can still live your life well; you just can’t live a well life – you are ill and your body never stops giving you little reminders – but I’ve had a decent 25 years so far, diabetes has made me who I am, no matter how much I ignore it, it has changed me, it has thrown me into things I would never have done otherwise and its given me friends I would never have had, so all in all its not been too bad a thing to live with.

Behind the headlines

This blog is a reaction to the frenzy that the media got itself into over the news that the number of adults living with diabetes England & Wales had surpassed 3 million.

Now rather than pay any attention to the Press Release as issued by Diabetes UK the media decided to jump on its ill-informed bandwagon and throw slurs and generally 'fat-shame'.

So I thought i'd put myself in the shoes of a hack and see what kinda piece I could write - below is my humble effort, which I think might be a little more palatable, needs editing though and well a wee bit more sensationalism and a picture - but not a f#'king picture of someone eating a donut!

As always willing to take critique!

"Diabetes Doesn't Have to Cost"

A [diabetes charity - insert your favourite] has identified that only 6 in 10 people living with diabetes in England & Wales receive the recommended health care checks.

These simple checks such as getting blood pressure and blood glucose levels measured, as well as the kidney function monitored can prevent the complications that cost.  Complications which are devastating and expensive such as kidney disease, stroke and amputation.

 

There are over 3 million adults in the UK living with a diagnosis of diabetes, the majority of which (some 90%) have Type 2 Diabetes.  A [diabetes charity - insert your favourite] spokesperson believes these people have a right to live a long and healthy life despite their diabetes.  Access to basic testing can help this to happen.

[diabetes charity - insert your favourite] is calling on the government to takes urgent action to ensure that everyone with diabetes receives the eight care processes, reducing their risk of further health complications and the costs these incur for the already strained NHS budget.

3 million people is almost the equivalent of the whole population of Wales, if all the people didn't receive basic care then the whole country would suffer, why should people with diabetes suffer?

 

[diabetes charity - insert your favourite] recognises that a key component of reducing the overall cost of diabetes is to help with prevention, that is why they and other partner charities are jointly investing £m in research for a vaccine to protect future generations from developing the incurable Type 1 variant of diabetes.

[diabetes charity - insert your favourite] also reflected that Type 2 diabetes, which is largely linked to obesity and lifestyle factors, but not exclusively, there are many risk factors, could be prevented or largely managed by the adoption of a healthy diet and exercise

 

 

Social Media and Health & Social Care

I've been an advocate for social media for quite some time now, ok I'm maybe not on as much as some others, my fault, but I do my best...honest!

My meanderings on social media did get me some attention though, I was lucky enough to make contact with Dr Steven Kinnear on Twitter, I would go so far as to describe Steven as a Twitter and Social media evangelist.

I had enthused about some events that Steven was facilitating over the last year, mostly an introduction to Northern Ireland of the Health & Social Care Changeday concept and his work with #dNav, a device for assisting people with mostly Type 2 Diabetes, who were struggling to make sense of the control of their condition by injection of insulin.

So my card was well and truly marked, I was a disciple of Social Media!

Today, that is Thursday 4th of December 2014, I had the privilege of attending the Northern Ireland Health and Social Care Social Media Conference or #NIHSCMConf for those into their hashtags, I recommend looking at the hashtag if you can and seeing what was said, it was a truly social conference with one of the largest inter-acters on the day being Bernadette Keefe who happened to be in New York rather than Belfast at the time!

What was so important about a conference in Belfast on how Health & Social Care staff could enhance their service delivery? Well everything!

How brilliant that Northern Ireland is willing to look into and potentially be a leader in developing models of interaction between health bodies, not only with each other, but also with their service users.

One important quote on the day though came from Stephen Powell - Social Media is a broadly free and simple communication tool - how very true - alas many trusts fear it - but why should they - they should in fact reward it - a health and social care organisation must look at its Mission Statement, and many might need to think about updating theirs - my own Trust, the South Eastern Health & Social Care Trust has the following  'Vision & Values' - at its core is the following 'provide person centred, safe and effective care'.

Today and tomorrows patients use Social Media, if you want to stay 'patient centred' then you need to be ready and willing to interact with patients how they want to be interacted with.

Its the 'safe' bit that I personally believe worries many, and it should, but its not insurmountable.

A tweet I received during the conference reminded me that social media is good, but there is still a place for traditional face-to-face - and I agree, social media is only one door into a world of engagement, the more doors that are opened the brighter and the cleaner the air becomes.

All communication be it bad news, good news or simply a bit of trumpet blowing is a positive thing, for in silence does only fear, doubt and error grow.

#dNav

So my virtual presence  tweeting on things health and diabetes related finally got me an invite to something BIG!!

What was this big thing? Well it was the opening of a office in Northern Ireland for the company Hygeia, a company that has created a diabetes management tool called the dNav.

The night of 25th June 2014 saw me in a room with the NI Minister for Health, the NI Chief Medical Officer, a representative of the US Consul in Northern Ireland plus many other top bods in the health sector.

What is dNav? Well its a tool to help people manage their insulin.  Yes its a blood meter, yes it allows you to record details of 'events' that may explain why a certain reading was what it was, yes it allows you to input your insulin given and yes it recommends adjustments based on a lot of complicated mathematical stuff where it looks at trends etc - nothing new for a lot of people - but for those using the system they would never give it up.

Its the real stories that say its a benefit - the company will freely admit its not for everyone - diabetes is individual to each and every person - but I got the chance to meet someone, a person with Type 2 diabetes whose hba1c has gone from 9 to 6.1, why? He said the dNav gave him confidence, the dNav gave him guidance, the dNav educated him and the dNav empowered him - a very positive story.

But as I said, the dNav will not work for all, I heard of another person, this time with Type 1 diabetes, who tried it, it got their total insulin dose down from 90 units to 20 units, but it wasn't fully suitable for them individually.  What it did prove was that the patient was a candidate for an insulin pump, and that person has now started on that solution.

At present there are over 170 people trialing the dNav - the majority are people who have Type 2 diabetes who treat their condition by insulin - either one injection of lantus daily or a basal bolus regime - people who struggle to adjust their own insulin, people who would like a bit of help.

The Minister for Health put it quite well when he set out the number of people who lose sight, limbs or end up on kidney dialysis as complications associated with their diabetes, and most normally due to poor control, anything that can assist people to be empowered to manage their condition and to show the levels of improvement that were discussed at the event tonight must be encouraged.

I was particularly interested to hear of the work on the next stages of developing the dNav system, areas like allowing the dNav to upload data to a persons Electronic Care Record, either daily or weekly electronically by means of a port, instant benefits for people who may move because of work or marriage - a new team in both General Practice and  Hospital Care would have instant access to data showing your trends etc.

There are many tools to empower people to manage their condition, and access to those tools is not always what it needs to be, there will always be a struggle to get what many want; often feel that they need.  That fight will go on, but hopefully with the empowerment I saw tonight in people who have benefited from the dNav and hearing from health care professionals on how even it is teaching them things about the condition, one of the glass ceilings has been broken.

I will close using a bit of a story the founder of Hygeia used to explain the system, with a bit of ad lib from myself - 'diabetes is like being on a boat and trying to sail the oceans, its easy to be told sail West that will get you were you are going, but too often you hit currents, bad weather, lack of wind; in those days you need a little bit of help to get back on track, you need a little bit of navigation'  Safe journeys.

I Can...can't i?

The theme of Diabetes Week in 2014 is I Can - so i've decided to write a little blog on the phrase 'I Can'

I was diagnosed with Type 1 Diabetes in September 1990, that makes me a relative newbie in terms of my life with diabetes, I know there are many who may read this who will have had the condition longer than I have and whose experiences are even more challenging than mine, but hopefully they will allow me license to say my bit and then share their own experiences too.

I Can....

In 2014 'I Can' now test for blood glucose in a small discrete bg meter that requires only a small amount of blood and get accurate readings of my blood glucose to a decimal point which it will keep in memory and allow me to reference back and calculate my average bg reading.

In 1990 all 'I Could' do was squeeze my finger till it hurt to get sufficient blood to cover a test strip that I had to wait one minute before I wiped the blood off and then another minute inside a meter for it to may be decide to read it and give me a somewhat accurate result based on the colours that the test strip had turned into, and even then the message 'Err' was a regular occurrence so you spent your time trying to decipher if the top line was a yellowy brownish grey colour and how blue the bottom blue line was so you could check against a chart on the strip bottle and do your best to make a guess at what the reading was.  And don;t get me started on the meter itself - it was the size of a small brick!

In 2014 'I Can' follow a basal/bolus regime of multiple daily injections with a long acting background insulin, other methods of delivering insulin are available, but this is about me!  I can enjoy the flexibility of deciding what to eat and when by adjusting doses to match my food and my activity, and I can inject there and then, no waiting, ok I might not get it right all the time, but I try my best.

In 1990 'I Could' inject a human mixed insulin, I had to wait half an hour to eat after doing this and then I had to watch the clock post food and feel how my body was reacting to the peaks and troughs of the insulin, it wasn't exactly an accurate tool, I had to be constantly ready to treat a hypo if the walk I did to school or the walk to work meant that I didn't have enough glucose in my system, and again, like today, I might not have got it right, but I did try my best.

In 2014 'I Can' use a disposable needle which can be 4mm, 6mm or 8mm, its relatively painless.

In 1990 'I Could' use a disposable syringe with a 12mm needle, not too painful but a bugger to work with if you didn't have 'fat' bits!

In 2014 'I Can' worry about my blood pressure, my cholesterol levels my weight and my kidney function and my feet and a myriad of other things, I can take tablets to deal with all this and i can survive.

In 1990 'I Could' pre-diagnosis live life without worrying about my blood pressure, my cholesterol, my kidney function - ok my weight wasn't brilliant, but hey there was chocolate and crisp to be had!

Things move and things change - there are advances to our benefit which we embrace and support and we long for even better and more advanced changes.

But we also have the reality of dealing with the fact that organ failure of the pancreas, because lets face it that's what Type 1 Diabetes is, is as bad for our health as long term kidney dialysis is for people with kidney failure, we are using technology to mimic a healthy body, but at a cost to our health.

i 'CAN' appreciate the tools i'm given; a lot of those tools and treatments were developed through the lost lives of others and lessons learned from that loss and advances demanded to ensure it didn't happen again

i 'CAN' enjoy the benefits that innovation brings...but i 'HAVE' to endure this condition.

A bit of joined up thinking

It takes an election to get me thinking about politics, and well as at May 2014 there are a number of elections happening.

And as I sit and read electoral manifestos I get to thinking - all these worthy wonderful things that people stand for and against, quite often its against in the hope that Mr/Mrs Voter will be of the same mind.

As someone with diabetes though i've never read a manifesto that would have pushed me to vote one party over another.

A strange and silly thing - sure we as people with diabetes in the UK are meant to be bankrupting the NHS - should something so significant not be up there fully exercising those excellent political minds in policy teams in political party HQ's?

The sad reality is no, and diabetes isn't alone, many other conditions, chronic or otherwise simply don't merit thoughts in policy minds, well until someone decides its time to talk about how expensive this or that drug is, or they want to 'deal' with the nations health.

There will be a little jumping on bandwagon, drum beating and all that, but then the next big hot potato will come into sight, like how much the EU commissioners car costs...ok yes there can be big issues that merit the limelight, but quite often when you have a condition as serious as diabetes its disheartening to see a bit of focus raised and be hot news for what..an hour, a day...and then suddenly its nothing until Mr/Mrs MP or Minister thinks they can make political capital out of us.

I don't want to be your political capital, I want action and I want it now!

And what if they ask the question - what action? Well maybe that's part of the problem, diabetes is so complex could I really say where to start?

Simple and honest answer.....no.....but I do have ideas.....if a condition is 'sooooooooo' serious and is costing 'sooooooo' much, why then is there not centralised thinking about how to manage that condition within the whole country?  Its bad enough that devolved administration means Scotland, Wales and Northern Ireland will approach the condition differently, but where it really gets messy is England where neighbouring areas can have different policy.

If you;re going to spend so much money on a condition, why is there no obvious bench-marking of good practice, and if there is, how possible is it for each area to implement it if they aren't given equivalent access to resources - and that's not just money, quite often that can be something as simple as a room in which a Diabetes Specialist Nurse can take someone for a chat.

I'm not asking for the moon, i'm not asking for the stars either, what I want is a little bit of joined up thinking

That's just chronic

Going through some stuff today and I got to thinking about the word 'chronic', for years I used that word to mean something bad, but in truth it means something long term, usually an illness, an illness like diabetes in all its forms and neuropathy.

But the way i've been feeling the last few months I really think diabetes and neuropathy deserve the 'bad' link.

If i think too much about chronic in its literal sense, as in 'length of time' it gets me very down, at the minute anyway, maybe its my upcoming 'zero' birthday that has me thinking this way, i've had diabetes nearly 24 years now and neuropathy confirmed only this last 4 months, but you get to thinking, this is for life now, how much longer could that really be - does this mean I have another 20, 30, 40...more years with these conditions?

Can I cope with that length of time? In a way that's not even a question I should ask, its not a case of Can I?, its more a case of I HAVE to!

Diabetes in itself throws many things your way, and many will wish for a cure for it, the cure may come, but diabetes will have done its damage for some, I will be stuck with neuropathy for life, other with kidney damage, some left blind, others without limbs.

For the first time recently I had to ask myself what would I want first, a cure for diabetes or a cure for neuropathy.  Maybe its my time with diabetes compared to my time with neuropathy that had an impact on my answer, but I like to think it had more to do with the impact on the quality of my life, my answer was neuropathy.

Chronic conditions leave you having to ask yourself many difficult questions, I hope for many they get the answers they deserve.