Tag Archives: funding

The Bionic Woman

For the last 6 days Mike has taken to calling me the “bionic woman”. Needless to say, I have not recently had a skydiving accident which has led to bionic modifications to my broken body resulting in amplified hearing, a right arm with the strength of 10 men and the ability to run at speeds over 60mph; in fact, there has been no incident of note and my 1 broken body part, my pancreas, remains well and truly broken. Rather there has been a conscious decision on my part to finally fully embrace a relatively new technological development that I hope will make a significant difference to my diabetes care.

I first became aware of this new bit of kit through M’s school friend, F and his fantastic parents, L and I. I can’t remember quite how we got onto the subject, but I’m reasonably certain that it had something to do with school Sports Day, the challenge of T1D vs. the active child and watching L check his blood sugars simply by waving a black box over his arm. To be fair, M had been wittering on telling me for quite some while about the “white, circular sensor-thingy” attached to F’s arm that enabled him to test his blood glucose levels (BGLs), but the lack of clarity in his description combined with my own lack of relevant knowledge meant that I had absolutely no idea what M was talking about and had dismissed the subject without really giving it a second thought. However, my interest was piqued through that chance encounter on the school field and it led to the opportunity for an enlightening conversation about what this thing was.

The Freestyle Libre (FSL) is marketed as a “flash glucose monitoring system” with a tagline of:

FL

and I was intrigued enough by this to want to find out more and discover whether this might be for me, or not. I read their website, researched on-line for users’ reviews, joined the FB forum for FSL users and wondered if it was too good to be true. I’ll be honest, when I first looked into whether it would be a benefit to me and my T1D care, I loved how easy it appeared to be and, having spoken at length to L and I on more than 1 occasion, could see just how revolutionary it could be, especially for children with T1D.IMG_0131[1] But, and believe me when I say it was quite a big “but”, the sticking point sadly was the price. This type of technology is not available to anyone through the NHS as yet and funding the sensors alone would cost in the region of £100 a month. I know that you cannot put a price on good health, but as a Mum to 2 children with multiple food allergies and an already increased monthly bill due to the high costs of free from food, the challenge of finding that extra £100 each month (£125 extra earned pre-tax) felt quite daunting and I shelved any thoughts of such an investment for the time being.

However, even though the price was making me think twice, I was reluctant to dismiss the option out-of-hand and, given the lengthy UK waiting list, decided to add my name and wait to see what happened in the meantime. The daily events of life with M and G quickly overtook everything else and the FSL soon dropped far down my list of priorities, though it was never far from my thoughts. I’m not exaggerating when I say months passed, but at long last, in January 2016, I saw the message I’d been waiting for: the news that monitors and sensors were once again readily available in the UK and I decided to bite the bullet and order a starter pack to finally see if the FSL’s claims were all true.

IMG_0135[1]The concept is a simple one and reassuringly easy to use. You insert a small sensor with a thin, 5mm needle into the back of your arm and, although the initial instructions for applying it appear quite complex, it really was quick and easy to do. I didn’t find it painful at all and whilst it takes some time to get used to the constant presence of this sensor on my arm, I’ve had no problems with it. The sensor measures what is called the interstitial fluid glucose levels, which are not identical to BGLs as this is the fluid found between the cells, but are considered accurate enough for monitoring what is going on. To find out your BGL, you simply wave the scanner over your arm and it gives you the result almost instantaneously. IMG_0129[1]The sensor continually reads the changes in the glucose levels and, as long as you scan at least once every 8 hours, the easy-to-read graphs given on the screen indicate what has happened during the times you didn’t test. As with most CGM systems (Continuous Glucose Monitoring), it is recommended that the FSL user occasionally uses a standard glucose monitor to test their blood sugars and check that reading to the one given by the FSL – my tests have shown a difference of less than 0.3 mmol, which is incredible.

I can’t begin to tell you how impressed I am with this small device. It really was easy to understand how to use it and the whole family – Mike, G, M and even my Mum – have taken their turn in testing my BGLs for me. Everyday I sit with the scanner amongst the rest of my accountancy paraphernalia in front of me on my desk IMG_0128[1]and am able to discreetly test whenever I want or feel the need. The amount of information available is vast and you can look at enough graphs, bar charts and log books to satisfy even the biggest techno-geek. It has become strangely addictive to do and has already started to give me an even greater understanding of what my T1D is doing than I’ve ever had before. The non-invasive nature of the testing means that it would be easy for a parent to do during the night with no fear of disturbing their child’s sleep, and similarly for Mike to do if he ever feels that my blood sugars are dropping overnight – no need to wake me to ask me if I’m going hypo and then having to survive the often stroppy response his concerns are rewarded with, whether they are or not – yes I am precious about my sleep! I also have no doubt that it would appeal to every tech-savvy under-18 out there, which would no doubt reduce the chances of non-compliance and teen rebellion that so many young T1Ds experience,IMG_0130[1] thereby similarly reducing the risk of complications from poor control. I really can’t speak highly enough of my experience so far with the Freestyle Libre and wouldn’t hesitate to recommend it to every T1D out there. It has been a struggle to find a down-side other than the price, which is due to the £50 sensors needing to be replaced every 14 days. My personal solution to that is to fund 1 sensor a month for the time being, or at least until the point I finally win that elusive lottery jackpot!

 

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Eosinophilic Awareness Week 18th-24th May 2014

This week I’m delighted to welcome Kate from The Recipe Resource as my guest blogger. Her blog was set up to support those catering for multiple food allergies, particularly in children and Kate is a fellow EGID Mum, who I’ve been privileged to meet through the fantastic FABED.  I was going to write a post to tell you all about Eosinophilic Awareness Week, but found Kate had already done an amazing job on her own blog and she kindly agreed to let me share it with you all:

 

18th-24th May 2014 is Eosinophilic Awareness Week.  Read about EGID here

Gastro research is drastically UNDER FUNDED.  It is not “glamorous” and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research.  Gastro conditions are badly neglected in the UK when it comes to research funding allocation, but without research treatment and outcomes are not likely to improve much.

Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research.  There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database.  GOSH are running a Gastro Research Project that will include related conditions/problems.  Alarmingly, children with allergic gut conditions are reaching epidemic proportions according to GOSH.

No one knows why the UK has the highest incidence for Allergy.  I went to Westmnister to attend the All Party Group for Allergy in October 2013 and heard how in the 19th Century, a study into Hay Fever took two decades as it was so rare and there were insufficient people to include in the study.  Today it is incredibly common.  The UK tops the league table in the incidence of allergy in its population, with Australia second – which is interesting as their population obviously share a similar root.  Allergic gut conditions are becoming common and hugely problematic for NHS paediatric services and Eosinophilic Disease is a specific subset of this group.

FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.

FABED

FABED are UK partners supporting the United States Eosinophilic Awareness Week.  This is coordinated by APFED.  Two years ago they made this video to promote awareness.

Read more about Eosinophilic Diseases here.

During Eosinophilic Awareness Week, do something to raise awareness.  Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK.

 

This blog was first posted on May 9th 2014 at The Recipe Resource here