Why was I refused a Pump?

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Marykinz

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Type 1
Hi All,

I've been a type 1 diabetic since 2007 and have been refused a pump on several occasions.

Could anyone advise on what the best thing is to do?

I have read online that NICE guidelines advise that we should have the option between a GCM or a Flash glucose monitor.
And a pump if you have a HbA1c high despite trying to manage you're diabetes.

I have been suffering with high bloods since i was 16 and I'm 27 now.

I was refused the pump when i was 20, The dietician/specialist words when i asked for a pump was 'we wouldn't touch you with a barge pole with a pump'

After those comments I felt defeated and dismissed, I had all sorts of emotions running through my head like 'I wasn't a good diabetic or patient' no matter how hard I tried to control my diabetes.

I recently went back to the doctors for my regular check ups, and after 7 years Since my first attempt at asking for a pump, I was asked if I ever consider one. I explained to the nurse that I would love to have one and explained what the previous dietician/specialist had said but her response was 'I guess the NHS only really give a pump to young children now'

Is there any reason as to why I would be refused?
My HbA1c is very high, nearly off the charts and no matter what I do doctors do not believe I'm trying to control my diabetes.

I've now had high HbA1c since the age of 16.

Could someone please offer some advise or inform me as to why I may not meet the requirements?
 
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Sorry you've had that experience. My understanding is thata pump may be an option if you struggle with poor bs control but, no doubt, more experienced posters will have more info.
 
Welcome to the forum @Marykinz sorry you’ve had such a negative experience when trying to improve your diabetes management. :(

Sounds like you could do with a much more supportive clinic.

Have you ever been offered a structured education course such as DAFNE (dose adjustment for normal eating) or a local equivalent?There are online courses such as ‘BERTIE’ which you can do yourself if you would like to?

Pumps can add precision to diabetes management, but they aren’t a ‘silver bullet’. A pump may very well be an important part of your diabetes management in the future, but to make best use of an insulin pump involves adjusting and readjusting the settings as your diabetes changes, counting carbs accurately, and understanding how to make adjustments around exercise, activity, illness etc.

There is also additional risk with a pump. Because you have no long-acting basal insulin active (basal on a pump is a series of micro doses of rapid insulin), you are more at risk of DKA if something goes wrong like a pump occlusion, bad site etc

When I was asking about starting on a pump it really helped to be able to show the clinic that I had a pump-friendly approach to managing my diabetes on multiple daily injections.

A diabetes course, can also help you explain how a pump would help (eg properly matching your basal insulin to your needs, flexible bolus ratios, extended bolus options… temporary basal rates etc)
 
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If you are not able to get good blood glucose management that suggests that your insulin regime is not right for you. What insulins are you on and do you have a Libre or similar to help you.
From what I gather it is still not easy even with a pump.
 
Welcome to the forum

Some CCGs can be a bit more difficult , despite the NICE guidance

Have you shown your diabetes team evidence of what you have been doing to try and lower your HbA1C? Have you shown evidence that you meet the guidelines for getting a pump?
 
everydayupsanddowns said:
Welcome to the forum @Marykinz sorry you’ve had such a negative experience when trying to improve your diabetes management. :(

Have you ever been offered a structured education course such as DAFNE (dose adjustment for normal eating) or a local equivalent?There are online courses such as ‘BERTIE’ which you can do yourself if you would like to.

Pumps can add precision to diabetes management, but they aren’t a ‘silver bullet’, it may very well be an important part of your diabetes management in the future, but to make best use of an insulin pump involves adjusting and readjusting the settings as your diabetes changes, counting carbs accurately, and understanding how to make adjustments around exercise, activity, illness etc.

When I was asking about starting on a pump it really helped to be able to show the clinic that I had a pump-friendly approach to managing my diabetes on multiple daily injections.
Click to expand...
Thank you @everydayupsanddowns, @Leadinglights and @Lily123 in answer to you're questions,

I have been on several educational courses and two of them being last year as a top up course.
I had a Berties refresher last year and a teams meeting with a dietician on a set carb counting course.

I'm currently on NovoRapid and Tresiba with a LibreLink 2 with an additional testing kit in case the sensor is not accurate.

I monitor my blood sugar levels in a diary with the amount of carbs i eat and any activity's i do in the day.
I also record this on a phone diary for diabetes and my LibraLink app.

I scan/test my blood on average 25-35 times a day due to how many ups and downs I have during the course of the day.

I had a Hypo today which lasted 1Hr and 30Mins which I have advised seems a lot longer than a hypo is recommended to last. I have tried different Gluco Gel's and Tablets which don't seem very fast acting.

When ever I approach a doctor, nurse or specialist they almost throw my diary to the side and say that they do not believe I'm recording correctly even through all the evidence is in front of them.

When ever I have spoken to a diabetes specialist they just say 'I'm not looking after my diabetes' and advise me to carb count which I have been doing for years now. (This is without mentioning a pump)
 
Do you know of anyone under the same diabetes team as you who have a pump? This may be helpful knowing if your diabetes team are pump-friendly or not

What insulins are you on?
 
Marykinz said:
Thank you @everydayupsanddowns, @Leadinglights and @Lily123 in answer to you're questions,

I have been on several educational courses and two of them being last year as a top up course.
I had a Berties refresher last year and a teams meeting with a dietician on a set carb counting course.

I'm currently on NovoRapid and Tresiba with a LibreLink 2 with an additional testing kit in case the sensor is not accurate.

I monitor my blood sugar levels in a diary with the amount of carbs i eat and any activity's i do in the day.
I also record this on a phone diary for diabetes and my LibraLink app.

I scan/test my blood on average 25-35 times a day due to how many ups and downs I have during the course of the day.

I had a Hypo today which lasted 1Hr and 30Mins which I have advised seems a lot longer than a hypo is recommended to last. I have tried different Gluco Gel's and Tablets which don't seem very fast acting.

When ever I approach a doctor, nurse or specialist they almost throw my diary to the side and say that they do not believe I'm recording correctly even through all the evidence is in front of them.

When ever I have spoken to a diabetes specialist they just say 'I'm not looking after my diabetes' and advise me to carb count which I have been doing for years now. (This is without mentioning a pump)
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Doesn't sound like a helpful patient/professional relationship. Time for a referal elsewhere?
 
Marykinz said:
When ever I approach a doctor, nurse or specialist they almost throw my diary to the side and say that they do not believe I'm recording correctly even through all the evidence is in front of them.
Click to expand...
That seems just rude. Anyway, can't they see your Libre data through LibreView? (Admittedly that's just one part of the picture.)

The technical appraisal is here https://www.nice.org.uk/guidance/ta151/chapter/1-Guidance and I assume you're looking at
  • HbA1c levels have remained high (that is, at 8.5% [69 mmol/mol] or above) on MDI therapy (including, if appropriate, the use of long-acting insulin analogues) despite a high level of care.
or perhaps the first part (since you mention significant hypos) and I guess they're thinking you're not using a suitable level of care. Seems horribly rude on their part. If you possibly can, see if you can get referred to another team.
 
I scan/test my blood on average 25-35 times a day due to how many ups and downs I have during the course of the day. I had a Hypo today which lasted 1Hr and 30Mins which I have advised seems a lot longer than a hypo is recommended to last. I have tried different Gluco Gel's and Tablets which don't seem very fast acting.

That sounds very unpleasant for you @Marykinz Usually glucose works fast so you’re right to be concerned. Have you worked out the possible cause of that hypo? When was it (what time of day?) Where did you inject your bolus (if it was after a meal). Some injection sites work a lot quicker than others and that can sometimes cause a hypo.

When did you last do a basal test? Have you tried a twice-daily basal eg Levemir, as that’s more flexible?

To get a pump, it’s a good idea to identify your specific problems and, importantly, then show how you’ve tried to solve them on MDI. If you can prove you’ve made appropriate attempts and the problems still exist, then that greatly increases your chance of getting a pump (because other methods have failed).
 
Must be so frustrating for you to be working so hard at your diabetes management and to be so poorly treated by your team :(

That hypo sounds grim! How many treatments did you try? Were you using the 15 rule of 15g of fast carbs every 15 minutes until back up above 4? Did you follow up the treatment with longer lasting carbs? Were you checking sensor readings only, or confirming with fingersticks?

I think many of us will have had one of those nightmare lows which just won’t shift :( But I’ve also had sensor readings which claimed long hypos which weren’t backed up by fingersticks 😱

What are your sites like? Any lumps or hard areas? Just wondering if part of the challenges you are facing might be connected to insulin absorption and/or insulin trapped in scar tissue suddenly releasing?

Given what you’ve said, it does seem bewildering that your clinic aren’t considering whether a pump might help you.
 
Can I suggest you do a basal test?
This hopefully will prove that you do not have a flat basal pattern thus the cause of all your problems.
So simple solution would be a pump.

I would also ask them to put in writing to you why a pump is not being provided for you.
Do this in writing not verbally keep your letter short and to the point whilst pointing out you have kept diaries of food intake carb counted adjusted insulin, been on refresher courses all blood sugars logged and also available re your Libre as proof.
I would also add in the letter that in your opinion calling you a liar is totally unprofessional and is not helpful for your long term health and wellbeing.
 
So sorry to hear that you are having such problems both with your diabetes management and even worse a lack of support from your medical professionals. It sounds like they are not only failing to give you useful advice but undermining your confidence in yourself, without offering alternative suggestions. That suggests that they are not doing their job well at all, because their job is to support you, not make you feel like a failure.

Would you be able to post a few photos of a typical days Libre graphs so that we can perhaps spot if there is something that we could help you with. I am thinking that perhaps the Tresiba is not suiting your body. There is no way that I could make it work for me because I need so much less basal insulin at night than through the day and Tresiba provides a very uniform amount, day and night. Levemir gives me the flexibility to adjust my daytime and night time doses separately because it has a much shorter action than Tresiba. It does mean an extra injection, but well worth it for the improved control.
Doing some basal testing as @Pumper_Sue suggests and understanding the different profiles of activity of the different basal insulins may help you to figure out a way to manage your levels better on MDI or give you evidence to show that a pump is the only solution, but if you can post a few of your graphs we may be able to spot particular issues or patterns.

I totally agree with asking for an explanation of their refusal in writing. Many people use these letters to then address the issues mentioned and then go back to their consultant with a list of things they have tried to deal with those particular issues and why they believe that a pump is the solution. You then put the ball back in their court by asking them what else they suggest you can do to improve things and again get that in writing. If you are already doing those things with no success then politely challenge them or ask your GP for a referral to a different clinic.

As others have said, pumps do not do it all for you and they can need a lot of work initially to set them up and then regular tweaking, so it isn't a simple hook you up and it does it for you.

As regards Libre, it is really important to understand it's limitations and when you need to double check it and as Mike says, finger prick checking when it says you are hypo (or hyper) and then 15 mins after each hypo treatment are really important because there is at least a 15 min lag on the Libre, so it will almost always show your levels are lower 15 mins after you ate your hypo treatment, when a finger prick will usually show your levels are coming back up, so never rely on Libre at those times or you will end up over treating your hypos and then you start on the roller coaster of highs and lows. Similarly, if you are considering a correction dose, always double check with a finger prick because Libre is less accurate at high and low levels..... usually Libre reads a bit higher than BG at high levels and lower than BG at low levels, but reasonably accurate when you are in range, so if you calculate a correction off Libre and it is showing that your levels are actually higher than they really are, then you may end up hypo.

I really hope we can help you to improve your diabetes management and perhaps give you some specific suggestions for why a pump would be beneficial, especially if there is anything obvious on your Libre graphs that we can spot.

I would say that I have learned far more from this forum and it's wonderful members than from any other source, although I did find the DAFNE course pretty helpful. It is the interaction with people here which has given me the confidence and knowledge to manage my diabetes well on MDI. For me Levemir as a basal insulin is an integral part of that success, but understanding how the different basal insulins work is helpful in figuring out if a different basal might be helpful to you. If you want to know more about this then please ask and we will try to explain.

Good luck!
 
Marykinz said:
Hi All,

I've been a type 1 diabetic since 2007 and have been refused a pump on several occasions.

Could anyone advise on what the best thing is to do?

I have read online that NICE guidelines advise that we should have the option between a GCM or a Flash glucose monitor.
And a pump if you have a HbA1c high despite trying to manage you're diabetes.

I have been suffering with high bloods since i was 16 and I'm 27 now.

I was refused the pump when i was 20, The dietician/specialist words when i asked for a pump was 'we wouldn't touch you with a barge pole with a pump'

After those comments I felt defeated and dismissed, I had all sorts of emotions running through my head like 'I wasn't a good diabetic or patient' no matter how hard I tried to control my diabetes.

I recently went back to the doctors for my regular check ups, and after 7 years Since my first attempt at asking for a pump, I was asked if I ever consider one. I explained to the nurse that I would love to have one and explained what the previous dietician/specialist had said but her response was 'I guess the NHS only really give a pump to young children now'

Is there any reason as to why I would be refused?
My HbA1c is very high, nearly off the charts and no matter what I do doctors do not believe I'm trying to control my diabetes.

I've now had high HbA1c since the age of 16.

Could someone please offer some advise or inform me as to why I may not meet the requirements?
Click to expand...

Your prime candidate for switching to pump, why oh why your team can't see it is bewildering.

Unless criteria has changed which don't think it has but quality of life is one factor in NICE guidelines, so keep pushing or look to change hospitals if possible, goes without saying that some clinics/consultants are more pro pump than others.
 
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