Judgement Day

9 Apr

Disclaimer:

I have not been paid in any way or received any products for writing this blog. The views expressed in this post are mine and do not represent any others. Also, the QiC programme has been made possible with sponsorship from Sanofi. Sanofi has had no editorial control over any of its contents

I have never blogged at the request of any third party or company in the past. In fact if I’ve been asked to, I have refused, even if I was intending to off my own back before the request. I’m stubborn that way…..

But, I was asked if I’d write this blog, and I have agreed to.

Why?….

Because The Quality in Care Diabetes team are looking to invite some people with diabetes to be part of the judging panel for this year’s QiC Diabetes programme.

I was lucky enough to be a judge last year and I would like to tell you what is involved.

So.

Here we go….

First thing I need to clear up is the title that they gave me on the web site.

“Patient Representative and Blogger”

The only person I could, or would ever want to represent me, is me. I was there to give my opinion based on my experience of my diabetes. The fact that I blog is irrelevant. You don’t need to have a blog to be a judge.

So learning point number one is that we need to find a more accurate title. For me it would probably be “Grumpy looking bloke with Type 1 Diabetes”

Personally I do think that it is a good thing to have people with diabetes on the judging panel, and indeed parents of children with diabetes too. I would of course love to see a large number being able to attend from cross sections of diabetes type, age, gender, etc, and I think that expanding the number by a few this year is a good progression and step in the right direction. This is why I am supportive of this and agreed to write this blog.

The Judging….

In March, applications were opened and HCP (or teams) are encouraged to enter their projects or initiatives in the appropriate category via the QiC web site – www.qualityincare.org/awards/diabetes – until the entry deadline day of 28th May.

Once applications have closed, the entries are collated by the guys at QiC and sent out to the judges for scoring, via big file links on email.

Judges are split into 3 groups, so no one judges all entries, just a third of them.

Scoring is carried out by each individual judge against a list of criteria and a defined scoring system that the QiC team will provide you with.

You get a few weeks to go through and score the entries assigned to you. Boy did I need those weeks!

Why?

Well…

Volume to start with. I wondered why we didn’t judge all entries, but as soon as I started printing them all out I realised why….

They can be very detailed and take a while to read through. That’s not a bad thing as they need to be detailed to describe the initiative or project fully with objectives, outcomes etc.

The biggest challenge for me though was the medical language used. Of course having lived with Type1 Diabetes for a few years it was not all new to me, but my formal medical education in the form of watching both Casualty, Holby City and (for those of you old enough to remember) The Flying Doctors was clearly not enough…..

So I did have to spend a fair amount of time on the internet making sure I understood what the terms mean.

So, I now know that “et al” does not mean that all submissions were written by a small alien with a glowing finger and his mate The Pub Landlord…….

After scoring is completed, the scores are sent into the QiC guys to be collated (they do a lot of collating) and individual first round scores are circulated amongst the three judging groups. This gives you the opportunity to see how your scores match up against your fellow judges, before the formal judging day.

Final Judging in the form of moderation is done in a full day and face to face with the other judges on your panel.

This was really interesting from my point of view. The first thing that stood out was that in many cases, my scores were directly opposite to those of the HCPs that had judged the same entries.

As discussions progressed throughout the day the reason was clear (not that it was a massive surprise). Simply that the HCPs in general were looking at the clinical benefit to the patient and running of the hospital, but I was looking at it from the “how would I feel if this was happening to me” perspective.

My view is that the whole day was a two way learning experience between my fellow judges and myself and that if just one of them went away from the session thinking even more about how the patient would feel, then it had been a worthwhile day.

By the end of the day, winners and commendations had been agreed and I had to keep my mouth shut (managed it for a change) about who had won. The results are announced at the awards ceremony in October, which as a judge I was lucky enough to be able to attend.

Basically it is a lot of work, you have to hit the deadline for returning your scores and commit to a full day’s judging so it takes a fair bit of time, but I found it an interesting and rewarding experience and I am pleased that QiC are looking to involve new people this year.

Like I said these are just my views about my experience, but if you think that you may be interested in being a judge this year then please apply via the Quality in Care website – http://www.qualityincare.org/awards/diabetes/qic_diabetes_2015_patient_blogger_judge

Live Long and Bolus.

Grumps.

My Nan’s Cat………

6 Feb

scared cat

Ok. We have all heard this at some point in our #WalkWithD when we discuss that we have Type 1 Diabetes with someone and then says………. “Oh! My Nan’s Cat had Diabetes. She had to inject it and everything………”

Note: This post is in no way meant to upset animal lovers in any way so please do not take offence. There is a very serious point to this somewhere in the post so please read on.

So.

I have heard this several times in the last 20 years since my Diagnosis, and there are a lot of pet owners and animal lovers in the UK that have a Cat, Dog, Gerbil or Goldfish (I made that one up) that unfortunately have Type1 Diabetes.

This has me thinking (really never a good thing, and, quite painful).

In the UK we do not have to pay for our insulin, for which we are very lucky and I will be forever grateful. In fact paying for medicine or medical equipment is quite alien to us and if we have to for things like CGM or Flash Glucose Monitoring we occasionally get a bit pissed off annoyed about it. Unless it’s for our pets.  If our aforementioned Cat, Dog, Gerbil or Goldfish needed insulin, then most of us would willingly pay for this in order to keep the animal that we love alive, because of course, without insulin, that pet would die.

What’s the point to this Grumpy post?

The point is this. In other countries, children are dying because they have no insulin. It is not provided, they cannot afford it. Simple as that!

If I would fund the insulin to keep my pet alive, then I should donate to #SpareARose this Valentines to help keep a child alive.

 Sparearose

The Spare a Rose Campaign is raising money to provide insulin to keep children with Type1 Diabetes in other countries alive. There is more information at http://www.p4dc.com/spare-a-rose

Please donate.

Live Long and Bolus

Grumps.

Grumpy Tidings

30 Nov

Ok, so its not my best effort, but here is this years Christmas offering.

 

Christmas 2014

Live Long and Bolus

Grumps

Psychosocial Impact of Diabetes – Related Technology / Devices / Stuff!

12 Oct

Latest guest blog is from Professor Kath Barnard @DrKathBarnard

It has been an exciting year for diabetes related technology, particularly for those with type 1 diabetes. There have been widely reported leaps forward in the development of the artificial pancreas with research teams around the world conducting clinical trials outside of hospital and laboratory settings.  Summer camps and ‘at home’ trials are ongoing around the world with some very positive results thus far.

New self-monitoring of blood glucose devices are becoming available which add explanation and context to the numbers presented on standard meters. Such devices present an evolutionary development away from simple ‘snapshot’ finger prick testing, to support systems for users and furthermore to flash monitoring systems.  This is where retrospective trend data can provide more detailed information about patterns of blood glucose and help the user fine-tune their basal and bolus insulin delivery to best match their needs.

So, it’s all good one would think on the technologies front and before too long we should be able to report significantly improved outcomes for people living with type 1 diabetes using this advanced technology. Or perhaps it’s a little early for such optimism.

Where is the evidence-base? How do we actually know that new, ‘whizzier’, faster and more detailed are actually beneficial?  How do we know whether there are any specific groups of people with type 1 diabetes who would benefit most from these from these devices and, if there are any for whom the potential for additional burden and increased anxiety associated with these devices could result in unintended detrimental health outcomes?

This is the thing with evidence-based medicine, as practiced in the NHS. It very much relies on a critical appraisal of the evidence-base, and for these new devices this currently seems to be lacking somewhat.  How then are we able to assess the clinical, psychosocial and cost effectiveness of these new devices?  Taking this argument a step further, what outcomes should be we evaluating in such a critical appraisal?  By knowing this, we can then design the clinical trials required to provide the evidence-base that we require.

There is no doubt that glycaemic control, as assessed by HbA1c is a key outcome.  As much as it may pain me as a psychologist, it is difficult to get around the argument that with even the best psychological outcomes, sub-optimal glycaemic control remains the gold standard marker of risk of long-term diabetes related complications.  I would obviously counter that argument with the overwhelming evidence that improved psychosocial and psychological functioning are associated with improved glycaemic control and therefore are of equal importance but this does not always wash with my medical colleagues.

So let’s look at technologies currently available to support diabetes management for people with type 1 diabetes. There is undoubtedly engineering excellence associated with these devices and on paper they should support optimal glycaemic control for users ….. so why is it that so many users still have sub-optimal glycaemic control?  That’s where I come in.  The simple answer that I always give is ‘because life gets in the way’.  On paper, type 1 diabetes seems a ‘not too challenging’ mathematical problem, particularly with the devices available to facilitate optimal self-management.  In reality however, it could not be further from that.  Everything impacts on diabetes control, everything.  Even a maths genius would be hard-pushed to achieve perfect glycaemic control (whatever that is!) without sacrificing other aspects of their psychosocial well-being.  Whilst this may be acceptable in the short term, diabetes is not a short-term condition and for even the most persistent personality, it will eventually become onerous and unreasonable.

Insulin pump therapy for example is associated with numerous quality of life benefits such as increased independence, fewer injections, greater food related freedom and improved psychosocial functioning, as well as biomedical benefits such as reduced frequency and severity of hypoglycaemia. Yet there are also a number of downsides including constant attachment to the device, potential increased visibility of disease state, cost and risk of occlusion and pump failure.   Continuous glucose monitoring devices are associated with improvements in glucose control, however evidence shows that this is dependent upon regular use.  Psychosocial benefits include increased confidence about diabetes control, ability to identify trends and act to remedy patterns of hypo- or hyperglycaemia, and reassurance for parents whilst their child is at school.    Alarm fatigue (particularly false alarms), technical failure and accuracy problems are limiting factors to ongoing engagement, with lack of trust in the devices and irritation with technological failure cited as key reasons for cessation of use. These factors may contribute to the low uptake of CGM use at around 6% at best.

So, the new self-monitoring of blood glucose meters have a lot to live up to. There is no doubt that SMBG is a crucial aspect of diabetes self-management for people with type 1 diabetes and many people with type 2 diabetes, however previous research shows that SMBG is associated increased anxiety and depression for some users.  How do we know that this will not be the case with the new SMBG systems and flash monitoring devices?  The ability to simply ‘swipe the device over the sensor’ is clearly very tempting and enables users to frequently check their blood glucose without having to conduct a finger prick test.  I wonder whether this ability for more frequent, non-invasive checking rather than engaging in the recommended testing frequency of 4-6 times a day is reassuring or whether it contributes to increased anxiety and worry for users.  The truth is that currently we are unable to answer that question.  Nor will we be able to do so until robust clinical trials have been conducted to find out.

Whilst I still maintain that the future is very bright for technologies in the support of diabetes self-management, I equally believe that these must fill a real need. They must be evidence-based and theory driven, developed with people with diabetes as equal members of the clinical research team and meet the needs of the end users from an engineering, biomedical and psychosocial perspective.  Only when we can genuinely say that we have achieved this goal will a device be truly fit for purpose.

My Walk With D

9 Oct

I know!….

I use this quote time after time, but a quick video about my #WalkWithD

http://youtu.be/GJoxETMisj4

Live Long and Bolus

Grumps

20 Shades of D

26 Aug

Diagnosed with Type 1 Diabetes 20 years ago today. It’s been……

 20 Shades

The Strip

I remember the first strip.

She took me through it.

Showing me what to do.

She was gentle, but firm.

First time it took 15 seconds, now it only takes 5.

Now I do it alone, sometimes in public, I don’t care who sees….

(Testing Blood Glucose 8-10 times a day)

 

The First Prick

I was a bit nervous.

I didn’t know where to put it.

How big would it be?

Would it hurt?

How deep would it go?

How much fluid would there be?

(Started on 2 injections per day of mixed insulin. Moved to MDI a few years later)

 

A Full Load

This time she wanted more.

A full load!

She wrapped something around it.

I felt it tighten.

A slight pulsing.

Then it throbbed.

The veins stood proud.

She took it all, but would be back for more tomorrow…..

(Full bloods from arm. Wonder how much taken in 20 years)

 

Insertion

Was fed up with so many small pricks.

Needed something that lasted longer.

Something that gave me more control.

Something that would stay in for longer.

It went in hard and fast, but stayed in as for days….

(Insulin Pump infusion set looked scary, but I prefer it to MDI now)

 

Double Insertion

I struggled with this one.

Could I stand 2 a time?

I’d have to pay for it. Would that be right?

I took the plunge.

Made my request and paid my cash.

Wasn’t sure if I liked it, but got strangely addicted.

I can’t take it twice in the same place, it gets sore.

I sometimes get a nasty rash, so use protection.

(CGM – Expensive, I get a rash off the tape sometimes, but I’ve found it useful in managing my Diabetes)

 

Live Long and Bolus

Grumps

Lift Music…..

28 Jul

Lift Music

You know how it is, you go into a lift, shop or restaurant and playing in the background is that bloody awful music. As soon as you notice it, it annoys the crap out of you, interrupts your thought process and no matter how hard you try to push it to the back of your mind you can’t.

After a while it begins to become background noise. Because it’s been there for a while it’s started to become a constant and you brain knows it’s there but starts to tune it out. It’s less annoying and you can live with it. You notice if there is a change of song, but basically it’s not pissing you off as much it did at the start.

Then you basically ignore it. Not deliberately, but it’s been there for so long droning on in the background that you don’t even notice the change in song track. You are too busy going about your business to bother with it.

So after almost 20 years of managing my Type 1 Diabetes it’s kind of become like lift music recently. Too busy with daily life and tuning out the drone of the daily BG checks. Noticing the big changes and reacting to them, but once in range it’s just a drone again that gets ignored. Not in a “rebellious” way, just a “I’m a lazy old git” kind of way where I intend to focus on it tomorrow………..

Personally I don’t see this as a failing or burn out in any way. Just human nature and a hazard of living with Type1 Diabetes for so long. I’m not going to let myself, or anyone else give me a hard time about it. However, I will give myself the kick up the arse I need to start paying attention to what’s important again in my Diabetes Management.

The annual review appointment letter hitting the door mat is a good reminder that I need to sort this out, and the focus starts now, not tomorrow!

Live Long and Bolus.

Grumps.

 

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