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

 

 

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.

The Big Event

The Big Event



Following the great blog post of fellow Diabetes Family member Kev Winchcombe http://circles-of-blue.winchcombe.org/index.php/2013/09/17/diabetes-uks-big-event-2013/ i've been tasked with writing up my own musings of the Diabetes UK Big Event on Saturday the 14th of September 2013.

I have to admit I usually avoid things like this, I know a lot of other people want to connect with other people with diabetes, its not ever been something high up on my agenda, strange given I help run a Support Group in my local area www.north-down-and-ards.diabetesukgroup.org but nonetheless true.

This time I was kinda forced into attendance, as a member of the Council for People living with Diabetes (CPD) our meeting had been moved to the Big Event day, coincidentally there was a need for volunteers on the day...not that i'm a great believer in coincidence...and so it turned out...my fellow CPD members from NI and myself got roped into helping out during the day - i pulled the 'MUG' straw - Morning Guide to the Venue and Room Monitor for two of the sessions.

Beginnings

The day started as a cold one, and alas it turned into a wet one, a hardy band of volunteers stationed at Hammersmith Tube & Bus Station dressed in our 'dress-blues' and maps in hand all ready to guide travellers to the Novotel and start their day at the Big Event off with a little less hassle.

As a worrying sign of what was to come the first person I came across at my guiding point was none other than Richard Lane the President of Diabetes UK, and he was lost, and I got the brunt of a mini-rant, fair play to Richard though as he made a point of finding me in the hotel later that day and apologising for his rant and thanking me and my fellow guides for our work, he'd had lots of positive comments from attendees about how friendly and helpful we had all been.

I have to say the Guide part was really enjoyable, I got to meet lots of really friendly people who were really glad to have someone to point them in the right direction, a great mix of what makes up my Facebook Group https://www.facebook.com/groups/408751785902265/ The Diabetes Family - People with Diabetes of all types, parents, pals, partners and professionals.

Alas one down side to my guiding duties was that I missed my first planned session which was to have been Diabetes Care in Your Area, but a rather cold and wet me much preferred a cup of tea and a wander round the stands warming up to walking in late!

The first session ended at 11.30 and then the enormity of what the Big Event was hit me - a mass of people of every age and character and then a tap on the shoulder and a face with a large smile and a warm handshake - i'd finally got to meet Kev Winchcombe in person!

Midday came round very quick and so I was off to my first session 'Type 1 Research' a smallish room was being used for this session, and it soon became apparent that the room was going to be full to busting, which presented a fellow Council member, Dilys Sheppard, with the unenviable task of turning people away, and alas volunteers in our 'dress-blues' where the first to be evicted, or you could stand, I chose to stay, so more standing it was :(

Research

Type 1 Research - An introduction from Richard Elliott, Research Communications Officer at Diabetes UK highlighted the work that has gone on through Diabetes UK in the past for Type 1 research and a pointer to the charities Research Timeline http://timeline.diabetes.org.uk/ - 1/5th of Diabetes UK's budget is spent on research, though there was also the negative highlight that less than 3% of people are involved in a clinical trial http://www.diabetes.org.uk/Research/Take-part-in-research/

The main talk was then given by Yuk-Fun Liu from Kings College London, she focused on 3 areas -

• Artificial Pancreas
• Stem Cell, and her own area
• Immunotherapy

The artificial pancreas is probably the one that is closest to be available to many, but alas its not a cure, but it is some extremely advanced technology that could remove a lot of the worry and the harm of fluctuating blood sugar readings, but it would still require human interfacing.

Stem cell research will always have ethical issues for many, but it is a area which could offer huge potential for the creation of new beta-cells

Immunotherapy is probably the one a lot of people will have heard of through the news of the potential vaccine for Type 1 Diabetes, though in a way it not really a normal vaccine, where the body is given a controlled dose and learns to fight the infection, in the Type 1 vaccine its about training the body to recognise the good and leave it be.  The trials here though are very much with the newly diagnosed.

The Question and Answer session through up the usual query on how long - a lot of people used to say the cure will be here in 10 years, in this case it was 20 years.

There was also the question on what about those who have been Type 1 for sometime...and yes there was good news of sorts...the work on Stem Cell and Islet treatment could see cells being implanted back into people with diabetes, but the body will still attack these new cells, Immunotherapy could be the answer to help protect those new cells, and as such there is hope!

My next two sessions saw me being Room Monitor, so forgive me if i get a bit brief here, I was mad mic man for a bit and didn;t really pick up as much as I probably should have!

Discrimination

The first session was 'Discrimination' a very sparsely attended session with only 34 people, we couldn't compete with a repeat session of Type 1 Research or Advanced Pumps and CGM's and that hypo dog!

The session here was led by Gavin Terry from Diabetes UK, and the main speaker was Paul Jennings, a Senior Associate - the focus was on Employment and Diabetes and reasonable adjustments.

One interesting point I got from this session was that no employer should ask you in the application process if you have a disability anymore, this should only be done post recruitment, unless the position in question is one where having a medical condition could be an issue, then an employer can ask.

No employer or service provider should discriminate against someone with diabetes, debate in the room became quite heated on issues such as employers not giving rest breaks for food and checking blood sugars, children being excluded from school as the diabetes trained teacher was off that day.

Paul did his best to field the questions, but he did caveat that each case has its own individual issues, Gavin did point out that Diabetes UK has an Advocacy Service, alas of one poor lady on her own who is very busy, but is contactable and will do her best to help.

Emotions

My last session was Emotional Issues in Type 1 Diabetes, and in contrast to my first Room Monitoring session this was a very different animal, over 130 in the room!

I was a bit headless...and really quite useless chicken in this session, by the time i found who was speaking they'd asked their question - people will not wait for the mic!!

I did pick up the following things - in that room with 130 people a question was asked about how many had access to Psychological Support - and the surprising result was as many as 20 hands went up - the speakers did recognise though that this was nowhere near enough, the cover is patchy and poorly resourced in terms of time.

Think Positive - The brain is like velcro for negative experiences, but teflon like for positive...notice what is good and savour it...every day find 3 things you're thankful for and savour it!

The session was very inter-active and the feedback from others who'd been in the room was very positive, some even saying it was the best session of the day.

Conclusions

So I ended the day tired but happy, would i willingly go to one of these events again if i wasn't being volunteered into it? Honest answer? No i probably wouldn't...but the reason why is more to do with the kind of person I am and my relationship with my diabetes rather than what the event was about....I do my sharing in small groups or on-line....one thing I left out from the research talk above was the fact that not one persons diabetes is the same, each and everyone of us will have our own reaction to it from a physical point of view, but just as much so, each of us will have our own psychological relationship with diabetes, mine is to care of it, but open enough to help others, whilst remaining ME rather than that bloke with diabetes who talks about nothing else :)

What do Diabetes UK do?

This is my first go at writing a blog, so please forgive me if its rubbish!

I'm taking this step because of issues raised by several posters on Twitter via the 'diabetes online community' or #doc about the work of Diabetes UK and the recognition of the work of the charity by people who don't have diabetes.

The conception among some is that although 'they' know about Diabetes UK they struggle to see its relevance, feel that its well known in society or feel appreciation for their work.

In some of the posts on Twitter I feel this can be because the comment posters are relatively newly diagnosed and maybe there is still a degree of hurt and resentment that they now have this condition called diabetes; their newness perhaps is clouding them from what Diabetes UK has done for people with diabetes, so my challenge to people is ask yourselves the questions I pose below and replace my answers with your own thoughts -

(i) What did you know about diabetes before you were diagnosed?

I personally can say I knew nothing, ok I knew the stereo-type misconceptions 'oh that's from eating too many sweets', but the reality is I knew nothing and didn't care. There are a lot of comments from posters, again in the #doc, about Type Zero, I might blog about my annoyance at some of the comments posted surrounding that issue in another post.

(ii) What did you know about Diabetes UK before you were diagnosed?

I will draw on my statement from above - I knew nothing, I probably would have seen someone standing raising money, but the reality is I wouldn't have cared who they were, they couldn't do anything for me, but I might have thrown a pound in their bucket just out of the spirit of being charitable.

(iii) What has been your involvement with Diabetes UK post diagnosis?

My involvement started of with simply being a member of the charity, at the time it was still the British Diabetic Association, my relationship with the charity boiled down to receiving correspondence from them about campaigns and getting the Balance magazine, I now had a condition and was now happy to know there was an organisation that was fighting on my behalf, but I wasn't interested in much more than that.

As the years have gone I have become much more involved, I now help to run a support group in my local area, I fund-raise and I campaign on behalf of Diabetes UK and diabetes issues locally, and just recently I became a member of the Council of People Living with Diabetes, a governance council within Diabetes UK designed to ensure that the views of those with diabetes are heard by the charity and are central to their work.

(iv) What has Diabetes UK done for us and what are they doing now?

Quite a wide ranging question and one that maybe Diabetes UK themselves need to consider but I will point out the things I have noticed

• Careline - A communication tool for people with diabetes to talk to a real person about concerns they have;
• Voluntary Support Groups - A tool for getting together with people going through the same thing as you, talking issues with someone else who has similar experiences can be a very therapeutic thing;
• Children & Family Support Camps - A vital tool in helping children and families come to terms with what is, and lets not deny it, a life altering condition;
• Raising Awareness - The Measure-Up and 4T's campaigns have got media attention - as diabetics we need to help by promoting these campaigns and taking them to the masses - we follow famous people on Twitter - make use of it - other charities are RT'd all the time;
• Research - Diabetes UK is currently funds of and has funded in the past research into the cause and the search for a cure - without this research we could still be in the dark about so much, we still are, but Diabetes UK is shining a light into that darkness;
• Campaigning - There are too many to list seperately, but people need to give some consideration to what they have access to now and think, how did this come about? A lot of it came about because of the work of Diabetes UK - access to choice of insulin, access to disposable syringes and needles, access to test strips, access to a driving license (although I know this has become an issue - but Diabetes UK in fighting on our behalf)

So I end this blog by asking those who want to challenge the work of Diabetes UK to first of all think about what is has done, but lets not settle for past glories, also think about what you as someone with diabetes can do to help a good charity be a great charity and expand its work in the coming years.