losing cgm funding

[Angusc]

my funding body in Cambridge has just changed it funding policy for CGM(continuous glucose monitor) to be only for training purposes which may open access to more people for new diabetics but seems to be losing me access so appealing Monday morning as going low with no warnings 2-10 times a week and used to end up in hospital 4+ times a year which will end up costing more than the sensors as a 999 call out used to end up with a 5+ stay in hospital since having the sensor I've had no diabetic 999 call outs or hospital admissions so this is very stupid

 

[Juicyj]

Hello @Angusc It sounds like you need to fight this decision, there will be a way round this, as they cannot blanket enforce a policy like this without reviewing individual cases such as yours which presents a very valid reason for ensuring your funding continues, can you raise a complaint letter outlining what your circumstances were like before funding including hospital admissions vs what life is like with the CGM, (you will need to establish what the complaints procedure is and who you need to write to) once someone with any sense can see your case clearly they will then understand the cost impact of providing CGM funding to you, perhaps also copy in your local MP ?

 

[Angusc]

in the process doing this atm

 

[Juicyj]

Good luck @Angusc Can you keep the forum updated on this, as others may find themselves in the same position and would benefit from hearing of this ?

 

[Angusc]

atm in the process of writing a impact statement

 

[Angusc]

Sent in impact statement yesterday also copied to my MP as well

 

[Juicyj]

Sent in impact statement yesterday also copied to my MP as well

Good luck Angus, keeping my fingers crossed for you.

 

[Angusc]

Impact statement below :-
i have chronic pain which makes me resistant to insulin so therefore have to take more insulin to cope and stop myself tipping in to DKA.
therefore if the pain drops i have more insulin than i need in my system that causes my blood sugars to drop very rapidly which causes the CGM low blood sugar warning to suspend the insulin delivery and stop the drop in blood sugars. there fore no hypo
i have very poor low blood sugar warning symptoms normally only kick in when blood sugars are below 1.2 which is far too low. and I'm semi conscious a bit below that and tend to be aggressive
Before having the sensor funding i used to experience severe hypoglycaemia, requiring 3rd Party assistance between 2 and 10 times a week. I was admitted to the hospital on a regular basis – averaging 4 times a year and had other visits to A&E as well as 999 call outs.

Having the sensor on gives me the confidence to give my self more insulin at the times I need it to stop myself going too high when I am in pain. I feel safer knowing that although I have no / limited warning signs, the smart guard on my insulin pump will stop insulin delivery and avoid the hypo. As well as feeling better, since having the sensor I've had no diabetic 999 call outs or diabetic hospital admissions or severe hypos. my blood sugar can change up or down without reason so there is no logical way to track it with out the cgm as while I'm awake i'm altering basal and bolus frequently dependent on sensor to alert me to the way my blood sugar is moving

 

[Juicyj]

Good letter Angus - can you be more specific with hospital admissions so do you have dates and also note which hospital - no need to advise on here though so as to protect your privacy but as much specific info as possible would help.

 

[Angusc]

Looking at old data the 2 years before pump 35 days in hospital not sure of 999 callouts but more than 7 for that amount in hospital days

 

[Angusc]

all gone on hold as they've asked for more information from addenbrookes my clinic and knowing them they will not answer fast luckily still got 1 month of sensors left but not hopeful ATM

 

[Angusc]

the pain is to get my blood sugars any where normal I have to be very aggressive with basal and bolus's which causes the cgm on the pump to suspend insulin delivery a lot

 

[donnellysdogs]

I fear that Cambridge will force you to take other measures to pain management... to be honest.

Oh, and yes the CCG have banned all but training needs although their policy states that exceptional cases will be considered.. they are not considering exceptional cases at all and are doing a carte blanche ban.

They have to consider exceptional cases, thats more relevant and the consultants arent pursuing this...

I too have been stopped. They gave me 9 months of funding and I have managed to get over 15 months usage but they dont consider that either.
Not my colon, stomach, hypos, cancer, injecting at 3.30, my husbands death and he was my total support or the fact that I am the only person on two basal injections as cant tolerate cannulas and had to give up pump....

 

[Angusc]

I fear that Cambridge will force you to take other measures to pain management... to be honest.

Oh, and yes the CCG have banned all but training needs although their policy states that exceptional cases will be considered.. they are not considering exceptional cases at all and are doing a carte blanche ban.

They have to consider exceptional cases, thats more relevant and the consultants arent pursuing this...

I too have been stopped. They gave me 9 months of funding and I have managed to get over 15 months usage but they dont consider that either.
Not my colon, stomach, hypos, cancer, injecting at 3.30, my husbands death and he was my total support or the fact that I am the only person on two basal injections as cant tolerate cannulas and had to give up pump....

the problem all the drugs they tried did not effect the pain and altered insulin effectiveness and upset my stomach or other things and 3 pain clinics say they can't help. pre-gablin gave me low warning signs randomly while bm's were med to high

 

[donnellysdogs]

the problem all the drugs they tried did not effect the pain and altered insulin effectiveness and upset my stomach or other things and 3 pain clinics say they can't help. pre-gablin gave me low warning signs randomly while bm's were med to high

The pain clinic in Stamford do wonders. I am under them for my pain. They have a completely different attitude towards drugs and acceptance etc. Brilliant.
Painkilling drugs can badly affect your colon. My colon was very slow and then it pretty much stopped due to main meds and therefore I found Stamford superb. Colon never returned to just properly slow, so now have to have meds for that but I am off pain meds totally but do pay to see a **** good physio twice a week.

Pain unfortunately wont be counted necessarily under being exceptional for funding, as the panel will probably know many, many people with pain.
I was discussing pain levels with physio today and how my hubby said his pain with his aortic dissection happening - he described it as a 5. I told ambulance crew he had never felt pain before so he wouldnt know what pain was.. either a 1 or a 10. Told them if he said 5 it would be normally 9/10 for others... he died... probably not helping himself because he didnt know degrees of pain.... we all have different pain and levels we can tolerate. Physio said today when she asks someone what pain is, and they say 10. She asks does it feel like a level 19 when that is your leg being amputated without anaesthetic?? That is what 10 is to my physio..

So as we all feel pain it could be difficukt for the panel to judge that you are exceptional.. I cannot tolerate any painkillers but morphine/butrans patches... so again I know these kill off my colon so I too have pain daily. The panel wouldnt necessarily be able to differentiate between your pain levels and mine so neither of us would be likely to get funding based around pain, despite it being troublesome for you and your diabetes...

Its not meant as criticism, as I too am faced with the same difficulties with the same trust/ccg.

If they have stopped exceptional funding that is a different matter. It would be interesting to read the NICE guidelines and CGM advice under exceptional funding details... and if they can stop it.

 

[Angusc]

I'm appealing on cost of treatment as 1 999 callout + A&E + 4-8 days on a ward cost more than 1 years sensor cost and before pump I had 3-6 stays in hospital per year with a lot more severe hypos not involving hospital stays but 999 calls with treatment at home or else where but now tend to get a lot of low blood sugars while asleep which invokes insulin suspend so keep's BM above 2.2 as I only get warnings when BM drops below 1.2 which is far to late I've had 3 suspends before low today 2 while asleep one of which reached 2.7 even after suspend at 5.5 I tend to get very unexpected drops I've seen in charts drops of 17 in 10-15 mins in the past with no warnings I'm very unstable at times

 

[donnellysdogs]

I'm appealing on cost of treatment as 1 999 callout + A&E + 4-8 days on a ward cost more than 1 years sensor cost and before pump I had 3-6 stays in hospital per year with a lot more severe hypos not involving hospital stays but 999 calls with treatment at home or else where but now tend to get a lot of low blood sugars while asleep which invokes insulin suspend so keep's BM above 2.2 as I only get warnings when BM drops below 1.2 which is far to late I've had 3 suspends before low today 2 while asleep one of which reached 2.7 even after suspend at 5.5 I tend to get very unexpected drops I've seen in charts drops of 17 in 10-15 mins in the past with no warnings I'm very unstable at times

Drops of 17... is your body swinging between highs after cannula changes and then going low? Specificaly to cannula changes.. not pain etc...

 

[Angusc]

no it has no relation to canula changes, it tends to happen when start doing something that distracts from pain, blood sugar levels lock at a level no matter what I do with insulin then either go up or down rapidly it, if I go out bm,s go up as pain increases, come home got to bed with electric blanket on max +read a book and blood sugar dives rapidly to low levels insulin suspends for a while the starts climbing. I have to change basal's regularly some times up to 3-4x more with bolus's as well

 

[BeccyB]

http://www.inputdiabetes.org.uk/ may have some advice

 

[Angusc]

very odd I got 5 sensors in the post today with no notification tried to contact my DSN not in the office so no clue what's going on ATM.