Glucose Meters

[haward]

I was with a friend recently and noticed him waving a small device at his arm and checking a reading. Turned out he is diabetic and finds this Abbott Freestyle device whicH works using a sensor on your arm, very useful. He is able to monitor his blood sugar level constantly. Does anyone here use one? It may be that it would be useful only for the more extreme cases in our cohort but I wonder whether anyone has tried this out.

[AoifeMcC]

I have been a type 1 diabetic since childhood, I also was diagnosed with esophageal cancer in 2006 when I was only 32. Since the chemo and total esophagectomy my diabetes has been brittle but I have used the Freestyle Libre for over a year at this stage and have found it incredibly useful.

[Kate1503]

Sorry Howard but I can't help with this query!! Best wishes, Kate

[brucemillar]

Hayward

I have been actively campaigning to have the Abbott Freestyle LIbre made available on the NHS.

Why is that important? It costs £50 per sensor with each sensor lasting a maximum of 10 days. Or, put another way £150 pcm.

The position to day is: Abbott, have made the device available to the NHS in the United Kingdom. It is now down to individual NHS trusts (CCG's) to agree funding for individual cases. At the time of writing this, most have declined to do so on the basis of cost and lack of evidence that this device is as accurate and reliable as some claim.

My own experience of the device: It is brilliant and although the accuracy can be questioned it can be tested against standard finger prick tests (if in doubt). IT's main beenefits to us:

1) The sensor stores data for up to 12 hours. So, as long as you scan the sensor with the reader (or your mobile phone) at least once every 12 hours, it will dump the last 12 hours data (Including sleep patterns) to your reader, that will then plot a graph(s). From this data you can immediately see where your highs and lows are happening and then link these to events (like food intake, drink, excercise etc)

2) It is working in "real time - 10 minutes) This allows you to see what is happening to your blood levels as you walk about and MOST IMPORTANTLY!! Allows you take preventive action to avoid any episode occuring, long before it happens.

3) It is discreet and painless. You can check your blood sat in room full of people and none will notice. You can check it on the train, in a restaurant, anywhere you choose.

4) NO FINGER PRICKING is required, unless you wish to query the accuracy of the readings.

* I have just had my second Individual Funding Request declined by the Kent & Swale CCG's.

* I have lobbied Jeremy Hunt (wasted my breath)

* Various NHS groups.

* Spoken to Abbott.

I have explained that this is (for us and others) a life saver and a Money Saver for the NHS. So far this has fallen on deaf ears.

There is a very good and strong facebook campaign that you can all join. Just search Abbott Freestyle in facebook.

I am happy to share my findings and data or to help others on here. Let me know.

Bruce

I use this (self funded)

[AoifeMcC in reply to brucemillar]

Mine is self funded currently too - I do find it brilliant.

[haward in reply to brucemillar]

Bruce. Thanks. Merry Christmas!! I think the OPA should throw it's weight behind this campaign. I will investigate further, ask our surgeon Trustees for comment and get back to you on this thread. Do I have your email address? I am [e-mail] and would like to get as much info as you have.

Have a super day today. I am in poor digestive condition this morning but still hope to manage a few small courses and some booze this afternoon.

Regards

Haward

[brucemillar in reply to haward]

Haward

Merry Christmas to you & yours.

email: [e-mail]

James Gossage is aware of some of the work I have been doing here as I have seen a battery of blood specialists etc. My most recent IFR was sponsored by Dr Jesse Kumar (Blood Specialist).

If you fancy wasting some valuable oxygen and having fun at the same time? Write a detailed and data weighted letter, to Jeremy Hunt (rhymes with something else). He gets one of minions to reply, after about six months.

They will:

a) Spell your name incorrectly.

b) Completely ignore the point of your letter.

c) Enclose helpful details on Jeremy Hunts career to date.

d) Answer none of your points but refer you to your local CCG that you pointed you have already written to without success.

Sticking your head up a dead bears backside would bring faster and easier results.

[Hidden in reply to brucemillar]

I do not know much about these meters, but I imagine that the funding issue might well depend on how they are treated by various NICE Guidelines. I do not know the answer to the NICE issues but it might be worth asking somebody knowledgeable?

[AoifeMcC in reply to haward]

My blood sugars are messed up at the moment too, they were badly low last night but we had our 6 year old who wanted to sleep in her parent's bed as she was excited about Santa and our 7 year old son who wanted to get up at 4 so was unable to put the usual care in Happy Christmas everyone. I will be having stuffing, gravy, a roast potato and some prosecco for the big feed - I have learnt the hard way to choose the things that mean the most to me and that i can mannage...lucky to have an amazing husband that cooks. Before I had the surgery in 2007 I did have an amazing trip to Paris so I will always have that as a memory. The Libre has been a life changer for me though.

Aoife

[Kate1503]

I know this reply is not in the same vein - and has nothing to do with blood sugars - but I nonetheless feel it's an important issue to raise.

My husband has only just had his second dose of FLOT chemotherapy so we have only just embarked on this journey. Before his chemo commenced, we were informed that it was essential to take his temperature twice a day because chemotherapy patients are at greater risk of infection. We were told to ring the emergency line if it fell below 35.5 or went above 37.5.

I had bought a new oral digital thermometer for his use only and dutifully did this. During the first 9 days following the first dose, his temperature twice dipped below 35.5 necessitating two trips to the hospital to have his blood checked. On both occasions it was fine. It wasn't until one of the oncology nurses asked what sort of thermometer I was using, that we were advised to buy a tympanic (ear) one as apparently they are much more accurate and readings can be up to one whole degree out on the oral ones!!

We now have one and I feel much reassured. The reason I'm raising this is that: a) I wish we'd been told this at the outset as it would have saved two unnecessary trips to the hospital with its inherent cost to the NHS and b) these thermometers are not cheap (I went for a reputable top end make which cost £45). I would imagine that not everyone can afford this outlay so would it not be more cost-effective if patients were at least offered one at the start of treatment? Surely that amount of money is a mere drop in the ocean compared to the wasted time we cost them during our two unnecessary visits. I was happy to pay for such a thermometer (and would have done so from the outset had I been advised) but perhaps they should be provided for those who may not.

Just a thought, but would welcome others' views!

Best wishes, Kate

[Kate1503]

Sorry! I should have said - if his temp goes below 36 or above 37.5!!

Kate

[gutlesswonder]

haward........is your friend's meter funded by the NHS?

If yes then why is a diabetic more deserving than a hypoglycemic?

No doubt 'they' would argue that it's about saving diabetics from further, more serious consequences. My response? An admission of hypos can cost you your driving license so the consequences must be pretty serious! Not to mention the cost to the NHS of my six weeks as an in-patient in a caste for double fractures of the spine, following an hypo seizure and the subsequent lengthy rehabilitation.

We all know that NICE is simply an arbitrary budget limitation contrivance.

What's next in this brave New Year?

[haward]

Hi GW. And a Happy New Year. My friend is German and his meter is funded. I agree with you. It shouldn't be a lottery. H