Thursday, 21 November 2013

Would I and Should I?

Hi Again.

I write this post as an extract from an email conversation I've been having with Mike from Every Day Ups and Downs. I've mentioned him frequently and mainly because his blog pieces are so well written and entertaining. We also share similar thought processes and journeys in our battle to get control of the D. Soon after I started blogging I wrote a piece on whether pumping was what I wanted to do. Mike was having similar thoughts and after some mutual hand-holding we jumped in at similar times. Two years on and pumping is starting to become 'normal' so my head has tilted towards CGM. 

I've talked occasionally about CGM before but what is it? Continuous Glucose Monitoring involves attaching a device to the body that has a sensor under the skin that measures glucose in the interstitial fluid every five minutes. These readings allows a line graph to be produced that shows the wearers BG readings over time. There's an example here of when I used it and how blooming useful it was. It also has the ability to spot sharp changes in BG to highlight a possible hypo or hyper event. So it's potentially life-saving and can also be used to reduce peaks and troughs through ongoing analysis and therefore improve control and reduce future complications. Therefore it has both short and long-term benefits. The big practical negative is having another piece of kit attached 24/7 that, unlike the pump, can't really be disconnected apart from when changed or not used.

OK, so we have the background information and now it comes down to some key questions I went through with Mike.....

1 - Do I want a CGM? 

If it's a simple binary choice on a questionnaire then the answer would be a yes. The ability to be able to see trends and also spot potential dangers is a massive plus. Stick tests can give you that but you need to be dedicated and also willing to sacrifice the time and sleep to get a good 24 hour read. I've occasionally been able to use a Medtronic Enlite sensor from my local clinic for 6 days prior to my hospital appointment. Frequency of this has dropped though and it's well over a year since I last had one to try. The arguments 'for' are well known but the reasoning against is mainly a funding issue. The consequential improvement in control and reduction in dips and spikes will lower A1c etc. I strongly believe this WILL then lead to a percentage reduction in likelihood of me getting complications in years to come and the severity of them. These are my thoughts. I know others think otherwise and that's fine too but as it's my body, it's my brain making the decisions - and by chance sometimes it'll be the right choice (for me). I'm not naive enough to think I'm going to have survive my whole life (minus 3 years) with diabetes and not be affected by my control at some point. But the argument that I will save the NHS £x,000 in care in ten or twenty years time won't hold much weight with this year's bean counters trying to limit spending as much as possible. And I understand why that is so but it still stinks. There's also another part to the CGM; it's another external piece of kit permanently attached. Part of my pump resistance was having something on my body at all times. This would be bigger and also not removable when attached. Do I and the people around me want another larger item attached 24/7 that can't be removed as easily as pump tubing? This is a big factor too but not the focus today as it may be irrelevant anyway.

2 - Which CGM would I want? 

When I've had the Enlite I've had no concerns at all but I know others have over accuracy when used for extended periods. All anecdotal and I'd prefer to prove this myself but all knowledge is power. The big advantage that the Enlite has is that the receiver is already inside my pump. This means it doesn't need a separate receiver and can combine data with the pump to display all information on a single graph or chart. The sensor is also pretty small - large coin size. Tied with this is the auto-suspend function although I've never (that I'm aware) had a situation in the night-time when that would have been useful to me - an alarm for rising would have been useful on the handful of occasions where I've become disconnected though. My other choice would be the Dexcom G4. I know other systems are available but for me this would be my preferred other option. The big advantage over the Enlite is that the sensors can last for much longer with examples in the DOC getting more than 30 days out of one sensor. If paying for it myself then this is a huge difference. The Enlite's can sometimes stretch another couple of days over the 6 recommended but this doesn't come close. Because of all of the above the answer is if self-funding; probably the Dexcom based on average daily cost but if NHS funded then the Medtronic Enlite would be the choice. I think.

3 - Will (and should) I get CCG funding? 

In short no (and not sure). Discussions with the hospital and CCG have shown that increased CGM funding is unlikely unless there's a strong clinical need. Improving control and getting my HbA1c down from 7.3 to low 6's is not classed as a priority. It is for me, massively, but not for them. Pump therapy funding is hard enough to get locally as it stands, so achieving permanent funding for a CGM (for an adult) is not going to happen. Especially when paired with my local health authority's significant debt and cost saving exercises. Another attendee of the pump users group has secured one week a month that's paired with monthly consultant appointments. That's great for her but for me to try and go for that just isn't possible unfortunately. Each sensor fitting and appointment would take me the equivalent of half a day to commit to and I'm struggling to fit in enough time for my usual D care as it is, so an extra day a month can't be done. Feel free to say that I should stop whining about CGM then. If I can't commit 12 days a year to it then how could I expect my CCG to fund it? There's also the NICE issue. I found out last week that the number of people in England who get funding for CGM is around three figures. Because it's not NICE approved every case for it has to be exceptional and not previously seen. By default this means that the more people who get them, the less exceptional they become and so it's harder to get the next one approved. Without NICE backing it will never be seen as a recommended method of monitoring and thus won't arrive on the CCG shopping list as an option. And because of cost I doubt NICE will do that anyway. If certain cancer drugs struggle to get funding then why should I get something that is a glorified blood testing machine? As a person living in an area with obvious bigger funding concerns then how do I feel morally about taking £4k per year out of the finite pot of money available? Not sure is the answer. Yes, I'll be saving money in twenty years with an increased likelihood of fully functioning limbs, kidney and eyes but my day job I work in a financial role and understand that budgets are dealt with when they are there not where they might be in decades time. 
So in summary I don't know if I should get funding but I would like it if available. Maybe the answer is partial funding of say one or two sensors a month but where I can control when I use them and also do the insertion myself. Still highly unlikely though.
Medtronic currently have a UK promotion where as a first time user if I buy five Enlite sensors for £275 they'll chuck in the Minilink kit worth £495 for 'free'. And then once I've bought another two boxes of sensors I'll get another box free. So all in £825 ($1320) for 20 sensors or £6.88 ($11) a day for the first 120 days. After that £/day costs will rise without the free sensors and with the kit replacement after 12 to 18 months but as a start it's not a bad offer. There has been some unwritten promotion by Medtronic to suggest that armed with the CGM data and proven improved control the CCG would look at this and consider funding. I think this is a little deceptive as it still doesn't fit into any funding criteria model and if you've self-funded then the CCG is most likely to just say that's fantastic, but if you want to continue it you'll need to keep paying for it.

I'll now add a comment from Mike that pretty much sums up what I said just to prove I'm not bonkers: 


"However, where it comes to CGM there therefore is absolutely no room for manoeuvre. I cannot justify *that* level of expense (which is, lets face it obscene) for the sorts of improvements I could realistically see. Yes it would be amazing. Yes I would value all that extra information (well some of the time anyway!). Yes a low glucose suspend would be a lovely safety net on some evenings after I've had a few too many and can't really juggle the maths/factors in my head confidently. But honestly? For the NHS to fund that full-time for me is unsupportable."

4 - Would I self-fund? 

Possibly. As above though I think it would only be on an intermittent basis. This helps in two ways. Firstly having an extra external body part wouldn't be permanent although the long duration of the G4 might mean that's less of a benefit. And also it spreads the cost. With the Medtronic promo both the Enlite and the Dexcom G4 cost about the same in the first year if you can get 18 days out of every G4 sensor. If you get longer then the G4 wins easily. Also the Enlite will need a new sensor every year(ish) and for the second year with Medtronic you'd need to buy that at full price (also 4th box free won't last forever) which brings the break even day for the Dexcom down to day 9. But and this is a big but, it's still a lot of money for me to pay. In my personal household budget is paying a few of thousand pounds a year going to be justifiable with minimal visible short/medium term benefit? Not sure. Maybe we can sell a child? (Kids, if reading this, I'm joking we wouldn't get a lot of for you so you're safe.) (Still joking, don't stress, you're not going anywhere!)

All that is a really long way of saying I would love a CGM but the overriding problem of cost (to me or the NHS) means that at the end of the day it's not on my horizon at the moment. And yes I know that's possibly / probably to the detriment of my long-term health but then so is sneaking that Roses chocolate from the bowl in the living room last night. Our local Medtronic saleswoman was hinting at combined sensors and sets recently. Now that would be really sexy and would blow one of my biggest negatives straight out of the water. I'm sure the cost will be prohibitive initially and again I doubt my skint CCG would fund that either - would it need a new pump too? Not sure. Too many questions!!!!!!!

Just like being attached to a pump isn't for everyone I know others are repelled at the thought of CGM. I believe that's fantastic and proves that firstly 'your diabetes may vary' and also what a wide range of opinion the DOC has. No-one is wrong, their opinion is right for them. 

As always I've seemed to asked more questions than I've answered and I'm not sure I've even fully resolved the question in the title of this post.


As always thanks for reading and please comment below.


Dave

Thursday, 31 October 2013

A Walk in the Hills for JRDF

Just received this and as much as I'm tempted, timings aren't convenient. If you can though it sounds fantastic!!!

Calling all those living with type 1 diabetes – could you climb Kilimanjaro?

Be part of type 1 diabetes history and climb Kilimanjaro - JDRF, the type 1 diabetes charity, is looking to recruit the largest team of people living with the condition ever to scale the mighty Mount Kilimanjaro in Tanzania.  This thrilling event is also open to those without type 1 diabetes.

For seven consecutive days in June 2014, the JDRF team will trek the beautiful Marangu Trail, through muddy rainforest, along rocky paths and over valleys, past glaciers and ice cliffs. Each night will be spent at a different campsite offering team members the opportunity to wake up to a stunning scenic view every morning – and to return home with the satisfaction of having scaled Africa’s biggest mountain.

The challenge has been carefully assessed and planned by Classic Tours, with fully trained medical staff on hand to assist. With an extra day spent acclimatising on the mountain (compared to many routes), this is a great chance for those with type 1 diabetes to reach the summit.  But you don’t have to have type 1 diabetes to take part; this trip will take up to 35 people to the summit of Kilimanjaro.

‘The JDRF Climb Kilimanjaro challenge is a fantastic opportunity for those with type 1 diabetes to prove to themselves and the world that having the condition does not stop them embracing the most physical and exciting conquests. There will be DSNs (Diabetes Specialist Nurses) joining in the climb, who will provide specialist advice on training tips, equipment and nutrition. With careful understanding of how the body works, participants will have the chance to reach the summit, and return with the satisfaction of knowing that no challenge is ever impossible.’  Dr Ian Gallen, Editor of popular diabetes and exercise forum Runsweet.com and Consultant Diabetologist at the Royal Berkshire Foundation Trust, Reading.

JDRF is now recruiting people living with the condition to join the challenge – and to show the world what they can do. They will trek alongside Becky Botham-Armstrong, the daughter of Ian Botham, and professional snowboarder Chris Southwell.

'Being diagnosed with type 1 diabetes at the age of nine was incredibly challenging for me and my family. But I learned to manage my condition. I also learned that having type 1 needn’t stop you doing wonderful things in life. There’s no better way to prove this than climbing Africa’s highest mountain. In summer 2014, I will be joining a team of JDRF supporters – all living with type 1 diabetes – to climb Kilimanjaro. I am very proud to be supporting a charity that funds vital research to better treat, prevent and eventually cure type 1 diabetes.'  Becky Botham-Armstrong

‘Climbing Kilimanjaro is part of my 7C7A Challenge which will see me take on 7 of the most demanding endurance events on 7 continents, to prove that having type 1 diabetes should not stop people from living their lives to the full. I want to use this challenge to help raise awareness of type 1 diabetes worldwide and prove too what a person with diabetes can achieve.' Chris Southwell, professional snowboarder and JDRF Ambassador

 How to take part

JDRF would be thrilled to welcome those living with type 1 diabetes onto the bespoke JDRF Climb Kilimanjaro challenge. To take part you will need to register as a self-funder:

·         Pay a £350 registration fee at the time of booking to confirm your place and pay a further £1,749 + £450 in taxes nine weeks in advance of the event (11 April 2014).


You are then able to raise simply as much as you can.  We would suggest setting yourself a target of £750.

Friday, 25 October 2013

Emergency Treatment

As always it seems, apologies for the delay in a new post. You may be in luck though depending on how much you enjoy reading my ramblings! I'm half way through writing one unrelated (well, it's always about the D but you know what I mean) post when I received an email from a friend which has led to today's post. In other news my pump now has a name - Fred. I can't remember where I got inspiration for that from.

Apologies in advance to any MDIers reading this as it will be very pump centred. I am genuinely sorry about that but as I said this is an extra one that came up because of something I was asked to take part in, so it's just the way it is. Normal service will be resumed next time but keep reading anyway as it might be helpful.

I'm now part of a small group of local people with diabetes who meet every couple of months to discuss things pump related. Next meeting 11th November with the wonderful Lesley from INPUT coming up to offer her wisdom and knowledge. Please come along if you can - 7.30pm. The Gregson Centre, Lancaster.

Anyway the wonderful Hazel who leads the group has become a member of our local CCG (Clinical Commissioning Group) and as part of this attended training for HCP and community workers who deal with people with diabetes. She felt the training was good but lacked any detail on how to handle an insulin pump wearer who has a need for urgent assistance due to either hypo or DKA ----- wow! That paragraph contained a LOT of three letter acronyms. Sorry. I'm quickly turning into the man who gives really bad PowerPoint presentations.

Below is my response to the question. I'm sure everyone will have a different way of answering the same question as to how you'd like to be treated but I think the biggest point is discussion between patient and clinician....

In the event of needing assistance from a health professional for a hypo or DKA, (both in the community or as a hospital inpatient), how would you wish your pump treatment to be managed? 

I'll try to keep this simple without being patronising. Obviously being HCPs in the field of diabetes means you will have a good understanding of insulin and its needs and effects.

A good starting point in relation to how a HCP would handle me as a person with diabetes with a pump would be to remember that it stays attached to me 24/7 because I need it to stay alive. The pump continually feeds very small amounts of fast-acting insulin. This insulin has an active time of between 3 and four hours. If the pump is not attached to me then I have no other background or long-acting insulin to keep my body safe. Within a short space of time my blood glucose will rise to dangerously high levels.

I said above that my pump insulin works for between 3 and 4 hours. This is correct and it also starts to hit it's peak effectiveness around 30 minutes after being given. This means that disconnecting the pump in the event of a hypo won't have an immediate effect on my blood glucose levels and will instead cause problems in the following few hours.

You may be guessing where I'm going with this but I'll put it in very simple terms; if you remove my pump you may become physically harmed when I fight you Rambo-style to get it reattached. It's not an accessory, it is what is keeping me alive and disconnecting it shouldn't be an option. Ever. Unless you receive direct instruction from Dr X or Dr Y. The pump (mine's called Fred) is only providing me with background insulin. If you came into contact with a patient on the basal-bolus regime you wouldn't consider trying to stop their basal insulin's effectiveness first.

So what do you do in case of severe hypo? Exactly the same as you would for someone on MDI or other injection regimes. Treat either orally if possible or with glucagon if unconscious. Feel free to use the 15-15 rule of 15g of quick acting carbs every 15 minutes and hopefully within a short space of time I'll be conscious enough to thank you for your actions and we can work together to identify the cause. If I was unconscious then further investigation would be needed. In the case of hospitalisation the same rules apply in relation to the pump. Keep it connected and let me handle the dosage in partnership with a trained diabetes HCP.

DKA is slightly different. Treating in an emergency situation is less likely as the symptoms might come over a longer period. The pump may also be (amongst 101 other things) the cause of the DKA if it has a blockage or a fault. By the time DKA has kicked in I would expect to be correcting using my insulin pen or a syringe and partnered with this changing my pump reservoir and set. Discussion with Dr X or Dr Y should be had as quickly as possible and preferably with me involved in that discussion.

Some simple things to remember that will help you avoid injury and also ensure I recover from my hypo or DKA:
1: Don't touch Fred!
2: Treat then speak. Once I'm relatively conscious involve me in all discussions. It's my diabetes and I've lived with it 24/7 for thirty-too-many years so I feel I've got a decent understanding and can also potentially spot any impact of clinical decisions.
3: Don't take it personally. When low I may become abusive and say some not very nice things even if you don't touch Fred. That's out of my control unfortunately but hopefully we can laugh about it later together.
4: My diabetes will vary. Although it's hard to get a grasp of; all people with diabetes (I'm not a diabetic, I'm a person) need to manage their control differently. What works for me might not work for Bill down the road. That doesn't make your job easy but it does mean listening to me might be useful.
5: Afterwards we do need to find the cause but this is through discussion and please don't blame anyone. Things happen. Loading me with guilt won't help me engage with you.
6: Congratulate yourselves on saving a life. Diabetes is a serious condition but it only proves this now and again when severe hypo or DKA kick in. You've done a good job in bringing me back round and I do appreciate it.

Hopefully this is helpful and please feel free to contact me to discuss further at any time. 

Dave
aka @sowerbee

--------------------

I'm sure you might have said something different or threatened even more violence but if my words can help improve knowledge locally then all is good.

Thanks for reading and do return soon as I hope to have another piece up in the next few days (or weeks or months depending on my poor posting skills).

Take care,
Dave

Wednesday, 7 August 2013

Not What I (or Fred) Wanted

Hello readers. It's been a while. Sorry. 

Not much has happened since my last post so here's a quick summary:

  • I'm still have Type 1 Diabetes. I know! It surprised me too. So much that I was kindly given a t-shirt from my wife to reassure me that the cure is only ten years away - always has been since 1979!
  • Following my previous frustrating 'close but not close enough' result from the (still flawed) HbA1c measure I received my latest score from the Doctors a couple of weeks ago. On asking the receptionist she saw my big smile and asked if I understood what it meant. My reply of "Oh YES!" might have been a little over the top but I was very chuffed - 6.8%. Another PB so I'll take that. A good figure but still room for even more improvement. Although, if I stick at that for a few years I'll be happy(ish) too.
  • We had a fantastic holiday to Italy seeing many fantastic sights including the Colosseum, Sistine Chapel, Trevi Fountain, Herculaneum, Pompeii and Villa Adriana. Each fantastic but a special mention for the last as it was a surprising piece of magic. During the holiday Adam failed with a BUTTON ERROR and it was at that point that I realised leaving the holiday loan pump at home wasn't my cleverest move.
  • A little fact from the past was that I was almost called Fred before I was born. Not sure that's new news but I like to share things on every post. :)
Anyway, onto my main subject today. It's a story based on someone who recently (last week) went to his annual review at the hospital for a check-up and to hopefully gain a few tips and improvements at the same time. This person places a lot of importance on these meetings as the amount of time he spends with HCPs is limited to a few hours a year so the chance to meet the most qualified for thirty minutes is always a good thing. 

Things started worryingly a few weeks before when Fred was asked to move to a Friday appointment which Fred knew his usual excellent consultant didn't do. A quick call to the DSN proved this and instead he'd be seen by the new Registrar; let's call him Barney. Oh well, the previous Registrar he'd seen was a little nervous but admitted what she didn't know everything so it had gone OK. Fred, coincidentally, had also had a pump failure the previous week so his new pump had arrived on the Monday and the appointment was on the Friday. Fortunately he was able to download data from the failed one before it was returned but it meant all the data that Barney could download would be limited to three and a half days. No worries, Fred printed off the previous months BGs and dosages etc so they could use that for analysis.

Weight was measured before Fred went in and this was steady from his previous appointment so nothing to worry about. This time his feet weren't checked but he thought maybe that would be done afterwards.

Fred made the pleasantries as they met and Barney helpfully pointed out that he also had a renewal letter from the DVLA that they'd go through towards the end to identify if Fred was a safe person to drive. Immediately this put Fred on the back (unchecked) foot a little as he was conscious that being seen as a man out of control wouldn't be a good idea today.

Barney opened Fred's notes and asked a worrying question - and this was after discussing the pump and how it had failed - "So is it type 1 diabetes you have?". Erm, yes. For the last 34 years.

The consultation then followed with Barney reading Fred's notes and pulling out historical figures ("HbA1c is OK at 7.1%") and when Fred tried to update the number he just continued to read. Next up was the attempt to download pump data. Fred explained that the pump had been swapped so the data was limited but they could look at these copious reports he produced himself. No, that wasn't good enough. Instead they spent five minutes while Fred helped him work out how to download 3.5 days of data onto his PC.

Next for Fred came a textbook example of how to treat the condition and not the patient. Whilst focusing on the figures from the last 3.5 days Barney identified using the numbers below (for US, European and Aussie readers multiply all numbers by 18) .... 


.... that Fred has a huge problem with pre-lunch lows. Barney asked Fred "Do you know why you were low then?" "Not sure, probably a diabetes variable." replied Fred. "Hmm" frowned Barney giving a stare of "Are you stupid?". Barney then proceeded to explain to Fred that the low could be caused by too much insulin for his breakfast "that's your BO-LUS" or too much background insulin "which is also called BA-SAL". Fred decided now would be a good time to sit on his hands and count to ten.

Fred did try to point out that this was only three days data and he was concerned that big decisions were being made on limited information. At this point he showed Barney the rest of his figures....



.... but this was only glanced at by Barney before returning to his PC screen. (For those now analysing the data - Fred was overseas too between the 17th and 29th so this accounts for some random days in there for him). Barney decided that he'd write to Fred's DSN to see him in six weeks to problem-solve the lunchtime lows. Fred said that in the meantime he'd basal test on the following Monday and hopefully this should identify the cause. As an aside he did that today and the basal test showed an almost flatline between 7am and 12pm so he's tweaked the morning bolus ratio a little to solve the 'problem'.

For Fred breakfast is one of easiest meals of day so tweaks are helpful but not his big concern. Of more importance to him is the mid-afternoon dip followed by the pre-evening meal rise and the continual battle to find a plan of attack for nights out. 
  
Barney asked Fred if his feet were checked by his GP. Fred said no as he thought the hospital would do that. Apparently now it's the GP's role so he's to get a letter too.

The final step was to go through the DVLA form with Fred giving the obvious answers to the questions. This annoyed Fred as they were the true answers but he felt like he was lying (he wasn't!) just to get his driving licence renewed.

Barney asked Fred to see him again in three months so that they can go through the changes worked through with the DSN to solve the problem of the sample of four tests under four around the same time of day in a 3.5 day period. 

If they're going to focus on such timescales Fred needs weekly consultations as type 1 does that now and again; this week's problem is next week's solution.

Speaking to Fred afterwards there were a few things that annoyed him about the consultation so I asked him to list them in no particular order.
  1. The entire meeting was pretty much based on four days of data as that was all that Barney could download. Much more information was available but as this was user-supplied (just like the latest A1c) this was ignored.
  2. There was no historical consideration. Just like me, Fred's HbA1c has dropped from well into double figures just over two years ago through the 7s and now sits at 6.8. As said previously the number is a crap measure but as HCPs live by it, a little appreciation of the gains made would have been nice.
  3. There was very little eye contact or discussion. It was a return to the olden days of being told what was wrong and how to solve it.
  4. Fred offered some technical help with accessing the pump data using the PC and this may have intimidated Barney a little as he wasn't very open to Fred's very gentle suggestions on how it could be done.
  5. A couple of times Fred offered a couple of comments on how he felt emotionally about things. These were ignored and not once were the two key questions asked by Barney - "How do you feel?" and "Is there anything else you want to discuss?" These were the ones Fred really wanted as he needed to explore the possibility of some CGM access linked to long-term concerns. Oh well, only three months until he's back.
Fred came out of the appointment upset and frustrated at the lack of interest in his views and the fact he'd had a fairly lengthy 'telling off' about the 'problem' hypos he was having that he was obviously failing to deal with. The general feeling Fred had was that it didn't matter how hard he'd tried recently it wasn't worth the effort and maybe he shouldn't worry too much as the complications are coming anyway so what's the point. 

Is that how Fred should be feeling after his annual meeting?

Overall Barney may be new to the area and the position but he has to understand that he is treating a person not a condition. Win the person and getting a buy-in to your clinical expertise will be much, much easier.

As you can see Fred is pretty miffed and struggles to understand why, in times of financial hardship, the HCP he met chose to focus on a tiny bit of information as if it was the only issue. And even making it a bigger issue than other undiscussed worries Fred has.

Anyway. That's enough of a rant about Fred. I'm really hoping that the next time he sees Barney they can build a better relationship as, after all, if Fred has bad control he costs Barney's employers even more money to support.

Thank you for reading and I hope to have a cheerier post for you next time.

Take care,
Dave (not Fred) 

Saturday, 18 May 2013

Diabetes Blog Week - Day 5 - Diabetes Art



Hello. Day 5 and this where I prove I'm not creative....


This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!



Once there was boy who needed lots of wees,
They called the doctor who said he had diabetes. 
Many years later after thousands of stabs and injections,
He got a pump to help him achieve BG perfection. 
There'll be more stress to come but hopefully no tears,
Because the cure's coming in ten years*. 

*Always 10 years. 

That is all. Thank you and apologies for my damage to the arts. 

Dave

Friday, 17 May 2013

Diabetes Blog Week - Day 5 - Disease Switch



So we've got to day 5 already. And I'm still writing. Not sure if that will surprise you as much as it does me! So what did the random subject machine throw out for today? ......

"Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)"

This stumped me initially. Firstly because I'm sat here scratching my head thinking; can I name any other chronic diseases of a comparative seriousness to diabetes? And secondly because (don't say this too loudly) me and diabetes sort of get on.  

I'll come to the second bit after addressing the first.

I like to think I'm fairly knowledgeable about my Type 1 but I know even after so long I'm still on an upwards learning curve. With any other condition I know nothing, nada, nowt. For me to sit here and choose something else to live with would be incredibly insulting to people with that condition. I'd feel it would be a bit like the old people we all know, who know of someone with type 1 who either died horrendously or managed to cure themselves - yes I'm looking at you Halle Berry! For an example of fury inducing misinformation just read the first comment on my piece from yesterday. To trigger a twitstorm of wrath from people around the world with a different condition is not an action I'm keen on taking. I prefer to sit here hoping I don't upset too many people with my almost coherent words.

So how do me and the D get on? This is a strange thing. I'd love for there to be no need for me to inject, test and stress out daily, but life is life and sometimes these things happen. On the flip of the topic above I don't know the problems that having something else would throw up. I think having diabetes from such a young age is a factor. It's part of me and is my 'norm'. 

And I get 'kit'! More gadgets than any man can ask for; testing kits, insulin pump, occasionally a CGM which gives me super-sexy graphs (is that OTT?) and links to the best online community in the word. Yep, absolutely. Without the need to stab and press buttons daily I wouldn't have you now reading this and my world would be a much poorer place because of that. 

In my game of life-pontoon I'm choosing to stick rather than twist. Boring but safe.

Thanks for reading again and all comments are welcome, even if they're stoooooopid :)

Thursday, 16 May 2013

Diabetes Blog Week - Day 4 - Accomplishments Big and Small




Welcome back to day 4 of Diabetes Blog Week. It’s going OK so far and I’m loving to chance exploring other blogs I’d not seen before and hopefully I’ve got a few new readers here too. Regular visitors are welcomed back warmly too. Really short one today though I’m afraid but if you’re working your way through the many available this week you may appreciate that!

"We don’t always realise it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hilary of Rainie and Me for this topic suggestion.)"

Today’s topic is a hard one. My family is not traditionally known for it’s trumpet blowing and whilst a few things have been achieved over the years there comes a natural reticence to celebrate this with others. Saying all that however one of my biggest is recalled here when almost exactly a year ago I managed to drag my body through 40 miles of Lakeland fells.

So what have I achieved in relation to my diabetes? The topic I’ve chosen comes with no medals and the rewards won’t be felt for years to come but it’s significantly huge even though the action was almost invisible. 

My achievement is that ……..

Just over two years ago I switched on, engaged and got involved with the my diabetes.

That’s it. Not hugely noticeable to others but massive for me. Recently I went through this in more detail so I’ll keep this (relatively ) brief.  

By initially just reading then tentatively discussing diabetes with other people in similar situations for the first time in two decades the improvement in my diabetes control has been a natural consequence. I've 'met' people who know how frustrating this darn condition can be and also offer suggestions for improvements and changes that might help. Sometimes it's just a link to further reading but everything helps. It really does. And it's the thing that really gave my D a bit of a refresh by encouraging my to get Adam and share my journey with me while feeling similarly clueless.

The biggest beneficiary of this has been my family who I’m lucky enough to share my life with. Mrs Tangerine has said that I’m a much nicer and more confident person and the whole improvement in my health has played a big part in this. So it’s a thank you to everyone who’s engaged (Did I just use that word again? It’s a bit business like when what I really mean is ‘discussed’) with me and shown me that my random stress isn’t just me.

Thanks for reading and be sure to check out plenty of the other blogs written today that can be found by clicking the banner at the top of the page.

Dave

Wednesday, 15 May 2013

Diabetes Blog Week – Day 3 – Memories



So Diabetes Blog Week continues. 

"Today we’re going to share our most memorable diabetes day. You can take this anywhere.... you or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)"

Memorable day? Remembering a single day from too many years is a challenge. So I'm going to pick two.

Firstly I'll go back to a day in my much younger years when my parents took me on a very long car journey to Woburn Abbey / Safari Park. The special event was the British Diabetic Association (aka BDA but now called Diabetes UK) Teddy Bears Picnic. I've no idea if this was an annual event but we only went once so in my mind it was one-off. There were a few highlights of the day including my parents being significantly concerned that the baboons in the animal park would go onto the roof of our car. The car survived and thankfully we did too :)

Also on the day was the chance to meet Gary Mabbutt. Gary might not transcend international boundaries but he was a hero to me. At the time there weren't many famous people with diabetes that I was aware of and here was a man who was playing football (soccer) at the highest level regularly whilst managing his BGs and not letting it hold him back. He even managed to score two goals in the 1991 FA Cup Final (sorry Gary!). #hero As a side note I know Gary has recently undergone surgery so I hope you're recovering OK if by any chance you read this.

Final event of the day (in my memory anyway) was the Teddy Bear Competition with prizes including one for the biggest bear. I'm not sure if my parents new but the teddy we'd chosen to take was George, my sister's rather large but incredibly cuddly teddy. Guaranteed winner I thought and standing in the showring with the other children and their poor attempts at 'large' I was confident of my winning position. But, NO, I was robbed!!! Another, smaller girl managed to persuade the judges with a cunning smile that she should win and she was duly presented with the prize. To say this under-10 was a little disappointed is putting it mildly. However moral victory was won a month later when Balance magazine arrived from the BDA with a picture of a smiling me on the front holding the, obviously largest, stuffed toy. A good day all round not spoiled by the unjust decision of the judges.

Day number two comes back to the original question. What's my most memorable day when remembering my diabetes? Well, it's yesterday. And tomorrow it will be today. We're doing this every day and each one throws up a different challenge with too many flipping variables to contend with to make it easy. Yesterday was fairly 'normal' with a waking BG of 6.4 mmol/l (115 mg/dl). Breakfast of cereal and a dual wave bolus gave me an OK pre-lunch of 3.6 (65). Lunch of a filled wrap, crisps and biscuits gave me an unexpected dip late afternoon that was treated with the always at hand Fruit Pastilles. Pre-evening meal I'd gone up to 10.6 (191) probably as a result of over-treating the low earlier. Final test of the day was 4.1 (74) which I was happy with as I still had few carbs on board and I'm not scared by that figure at that time of day. So that was yesterday and today is more of the same but different.

I hope you enjoyed reading this and I recommend others from the week by other people with diabetes from around the world which can be found by clicking the banner at the top of the page.

That's two days done. Only four to go :)

Tuesday, 14 May 2013

Diabetes Blog Week – Day 2 – We, the undersigned



OK, I'm late to the party and for the perceptive ones amongst you the title above is a little bit abandoned as Day 1 didn't exist! Sloppy, I know but better late than never. If you're looking for the reason I've dived in pop over here to read Daisy explain why it's a huge challenge to judge 16 years of managing a condition in a 20 minute appointment.

So participating in Diabetes Blog Week in scarily new to me. I've read many fantastic posts over recent years but the thought of being able to do six consecutive posts (yes only six because I'm a day late!) strikes fear into me. If you're new to my page I hope you enjoy the read and please pop back as I occasionally do update it. Sometimes!

So today's subject is........ "We the Undersigned...." A challenge to write a petition to someone to make a change.

Mine will be 'We the undersigned demand that our healthcare professionals do not judge our control as success or failure.'

This goes out to every one of my Doctors, nurses, opticians, chiropodists, and dietitians. Just because my control isn't always between 4 and 8 mmol/l (72 to 144 mg/dl) and I sometimes eat without testing (I know. Rebel!!), doesn't mean I've failed. It just means I've got something to work towards in improving my control. yes, sometimes I know the answers to all the questions yet still don't follow the 'rules'. I'm not naughty; I'm normal.  The D isn't going anyway and I'll wake up tomorrow with another opportunity to have an attempt at achieving the perfect day. Life isn't perfect and sometimes stuff just happens that means I won't spend every minute focusing on balancing my body. We don't fail we just continue to manage it 24/7 with no days off or time off in lieu.

Hopefully that strikes a chord and my final comment goes to my optician. I like you, I really do. The pictures you take of my eyes are fantastic and I trust you a lot more than a man in the NHS van. However, please don't ask me "How's your diabetes been lately?" It's a crap question that is normally replied with an "It's been OK." The question really demands an answer with graphs, trends, and in depth discussion but you don't really want that. Do you?

Thanks for reading and please come back tomorrow for more ramblings.

Monday, 6 May 2013

Guest Post: Diagnosis From The Parent's Side

It is with the greatest pleasure and excitement that I have a guest writer for most of today's piece. After scouring the world for the best possible correspondent I narrowed down the search and found the best option. My mum. Any suggestion of bias is wrong, wrong, just wrong.

Last week I spoke to mum (aka Jean) about whether she'd be willing to put down a few words to describe what it was like back in the late 1970's when all our lives changed forever.

Anyway my words are the least important ones today so please read and enjoy:


David’s Story

Round about August 1978 when David was 3 we felt he was not well.  The Doctor came out and said it was probably due to him growing.

Later on in the year he started to drink a lot and wet his bed. We put this down to a temporary breakdown as we didn’t know anything about diabetes.

It was a Monday in February 1979.  Most of the family seemed to have the ‘flu. The day before, we had all been sitting by the fire trying to keep warm. The older children were off school. Around lunch time David seemed to worsen. John, his dad, rang the doctor (a different one). On giving his symptoms, the first thing he asked is is there was any diabetes in the family. He was round to our house within 10 minutes and sent us off immediately to the Children’s Ward at Lancaster with David.

They took blood tests which had to be sent to the Lab. which was the other side of town.
He was fixed on to a drip to get his liquids up.  It was taking so long for the result of the blood test to come through that the Doctor decided not to wait any longer, so he was given his first insulin.

He was in hospital for about a week where we learnt how to inject and measure the carbohydrates in his food. They even brought on a hypo by injecting and not giving food, to show us what to expect.
We went home very worried how we would cope but somehow we got though.

Starting school was a big occasion. All children had cooked meals at our village school. Off I went to meet the cook and she was wonderful even though she had never had to deal with a diabetic before.

All the mums of his friends were wonderful too if he went to play or to birthday parties.

We got lots of offers of help and advice.  Sometimes good but other times ridiculous such as the person who assured me it was just a nuisance and he would soon grow out of it!!!

Over the years we saw him grow up and not grumble to us about what he had. Our doctors and the paediatricians were great.  Even telling us we would probably know more than them as we had to live with it!

We joined a local Children’s Diabetic Group where we could swap experiences and realise we were not on our own.

Three times he went off to Children’s Diabetic Camp where he learnt how to inject himself.  It was the first time he was away from us but as the staffing was wonderful we knew he would be well looked after.

We have seen him grow through his teenage years and find a wonderful wife Laura who keeps him straight when he has a waffy turn, and two great children Joe and Martha.

Thank you mum for that and I hope you all enjoyed reading her thoughts. I'm sure it's similar to what others experienced and also different too. For me it's fascinating seeing it from the other side as I have very few memories from then. Please leave lots of comments and if you have any questions drop them in too as I'm sure their experiences can help others too.

Thanks for reading,
Dave (or David to my mum ;-))

Friday, 19 April 2013

What does the DOC mean to me?


Hello peeps. It’s been a while. Sorry.

I would say the wait will be worth it but there’s no singing red squirrels or videos of cats with toast on their back so I’m not sure but I hope you enjoy my thoughts anyway.

Over the last few months I’ve had thoughts about what to write next and I keep coming back to today’s subject.  It’s a thank you but it’s also an explanation of what something means to me. So what is this thing that has occupied my thoughts so much?  The D.O.C. or Diabetes Online Community. It’s a rough grouping of people ‘online’ and I’m guessing most of you reading this are already members. What I really love is that whilst the name seems simple it encompasses such a wide range of people, ages, viewpoints and experiences.

We’re made up of; people with diabetes, parents of people with diabetes, family members and friends of people with diabetes and a significant number of HCPs (healthcare professionals). Everyone is part of it for a different reason and what I’m going to try and explain here is what it means to me. For you it might be similar or it could be completely different but is that a problem? Nup. And that’s why it’s so good!

Without sounding like an ageing fuddy-duddy, diabetes has been a significant part of my life for over three decades and yet things back then were so different. Ee by gum. For me, only as far back as three years, I was operating in my own little self-contained diabetes bubble where I was the only PWD (person with diabetes) I knew and my support was limited to - but very ably catered for by - my close family and a couple of healthcare peeps I met every few months if I was feeling brave enough to be told off that day.

I’ll admit a few years previously I’d delved into the online world of forums but after reading a few posts bragging of HbA1c results and BG perfection a world away from where I existed I logged off and believed I was the only one who felt like I did. Of course it was the case that every 'diabetic' could manage perfection with a dedication and ease.

So what was my epiphany? Unfortunately I’m not sure. It’s one of three places and I’m not entirely clear which I stumbled upon first. In no particular order, it was either Emma the duck, the forum at Shoot Up or Put Up or Up and Down Mike. Over a few days the combination of these three made me realise that there were others out there like me who experienced similar issues and worries. After a small while I introduced myself on SUoPU and then found Twitter. Wow! There isn’t just three other groups of people from the UK thinking like me there’s a whole world full of them! Yes, I know! Who’d have thought it? Chance theory would suggest that there’d be at least a couple of me somewhere in the world but actually being able to find them. And chat. In nearly real time was just mind-blowing for me.

Over the past couple of years I’ve now been conversing mine and my wife’s contacts have grown giving plenty of pop-in-for-coffee opportunities around the world – yes, I’m looking at you New York! Added to this is the chance for my parents, family and other friends to see what living with D means to me in a way that I’ve never shared before.

So what does the DOC give to me:
  • There’s normally someone, somewhere who’s either experienced my latest problem or is going through it at exactly the same time. An example of this was last night where I’d had two consecutive, slightly painful set insertions. Obviously this wasn’t down to my technique as I’m perfect ;-) so it must be a technical fault. A quick question to the twitterverse on whether the inserter has a functional lifespan gave me multiple replies confirming that it was me who was to blame and a couple also suggesting I try a different set (i.e. mio instead of quickset). I had the answers I needed within minutes without any need to pester my DSN or call the Medtronic helpline; although whenever I have called them they’ve always been very helpful. For me and my family the switch to Adam has been huge. And anything new always gives a thousand questions - i.e. where do you put your pump when you sleep? - but the DOC gives a real opportunity to get different opinions. Often the answers are consistent but sometimes they aren’t and this isn’t a bad thing either. It just proves that there isn’t always a definitive answer and it’s a case of picking the best one for you. 
  • It’s reciprocal. I’ve received a LOT of help over the last couple of years and now whilst I’m still there grabbing new exciting information, I’m also able to offer a little experience to those with questions. The new-pumpers ‘should I or shouldn’t I’ are always the best; especially when they read what I said last year and understand that others think like them too. You, yes, you, there’s someone who feels just like you do today. And someone else who’ll understand how you feel tomorrow.
  • It’s not just about the D. Yes, we’re mostly closely linked to an annoyingly lifelong condition but other things happen in our life too. Recently a good friend on the DOC suffered some serious family heartbreak and I’m hoping the support the rest of us offered helped in a little way at a crap time. It can seem crass and oversensitive to call us a family but sometimes it feels just like an extended family with ‘relatives’ around the world and the support offered by me and others hopefully helps.
  • It gives a chance to encourage empowerment. For years I was afraid to ask questions of my HCPs. Not their fault; just that I felt I should have known the answer already. How can I have diabetes for 30 years and not understand the liver's involvement in my condition? Everyone must know it, as they don't talk about it, but it does 'something'. The DOC has given me the strength to ask the questions I need to for my benefit. Once again pumps aren’t for everyone but for me it’s worked well and I wouldn’t have even considered one without reading other people’s experiences – Duck that’s you again!
  • I can ask a question and get answers and then I can go back with my experiences. It’s a growing bank of knowledge and not everyone will read everything but if someone asks a question often there’ll be a link from someone else saying “Not sure but Dave has done that” and then I’ll dive in offering my expert knowledge . Well, I’ll let them know what happened and hope it helps anyway.
  • We’re not all the same age. Whilst I may still believe I’m youthful and cool my passport says otherwise and my use of the word ‘cool’ just there proves I’m not! So I can offer a memory of how I felt and and what I did to get where I am today or I can do my part by pointing in the right direction and offering educated guesses although obviously being very careful about not offering specific potentially dangerous advice. Sometimes it’s just an encouraging word to a parent that their efforts will eventually be appreciated and despite the constant promises of complications it’s possible for their child to achieve whatever they want to – flying fighter jets excluded; yes Top Gun still hurts!
  • It’s always there. My very capable DSN is available via answerphone message Monday to Friday 9am to 5pm. That’s 40 hours a week. For the other 128 I have my own personal encyclopedia of knowledge in varying levels of hypo, hyper or perfection. 
  • This one’s a big one. So I’ll build it up slightly. Are you ready? Really? Do you want to know the big one? The one that really makes me happy to be part of the DOC. You do? Good. Inspiration! Yes, that was it. I’ve never really had an attitude where the D will stop me from doing anything (excluding the previously mentioned highway to the danger zone) but the DOC has shown to me that anything really is possible. This month Roddy Riddle ran 156 miles across the Sahara desert in a time that anyone would be in awe of. Doing whilst attached to an insulin pump and CGM is truly, truly inspirational. 
  • We can offer support to people who’d previously be on their own (and maybe still are). If we can engage then almost by default control or even a willingness to try and gain control will improve. A consequence of improved confidence of our condition gives an improved chance we’ll engage with HCPs to improve our care and consequently control. It’s like a silent nagging but there’s no-one there saying that a high BG is judgement of you. More often it’s a comment on possible causes and resolutions. I seem to spend a lot of my time trying to encourage that there’s no such thing as a ‘bad’, BG just one that needs more correction than one within target range. For me removal the success judgement of a BG has helped a lot in improving my control. Which is a bit of squiffy thinking but it works so I’ll keep doing it! 
At this point I do need to offer a word of caution. The DOC is a part of the real world and therefore also needs a certain level of care and protection. Just like I’d never eat horseradish just because the Daily Mail tells me it will prevent cancer, I’ll not act on a single suggestion which might have implications I’m concerned about. If in any doubt then I’ll store it in my unorganised memory to ask the Dr or DSN at my next appointment.

So that’s why I love you DOC. Yep, you. Thank you for being there and giving me something that didn’t and couldn’t have existed 10 years ago with such a level of portability and immediacy.

OK, so it’s helped me and it might have helped you too but how do we help more of the Dave from 4 years ago? Don’t know. I keep plugging the DOC whenever I can but I also know there’s a lot of people just like me who will read about people in Balance in waiting rooms believing that they aren’t part of their world and they couldn’t feel how they feel. Let’s do what we can and shout it from the rooftop and slowly we’ll get there. HCP involvement such as from Partha (lots of links today but this one is REALLY good - and it's from a HCP perspective too) can help a lot too.

There’s a tenuous link here to another topic I’d like to quickly mention but please bear with me as it’s important. I asked above how we could get more people into the DOC but for many people the O bit of DOC is a huge issue of cost and priority – food or Internet. I was contacted by Lucy Laycock from The Pendsey Trust www.thependseytrust.org. It is an absolutely fantastic charity providing resources for people with diabetes in India. I’ll point you in the direction of a fantastic interview with Lucy here. And just in case you skipped that link here’s a quote from Lucy to inspire you:

Welcome back. Thanks for reading the interview linked to above.

It’s been a long one this time so sorry about that but as you might have guessed by now I do ramble a bit :-)

Stay healthy and safe and please let me know if you agree or disagree with anything I’ve said.

Take care,
Dave