How did you get your pump?

[ssrixty]

The nhs guidelines say that in order for adults to receive nhs insulin pump therapy funding you must satisfy one of these:

- If the person is aged 12 or older and hypos occur frequently or without warning, causing anxiety about recurrence and a negative impact on your quality of life
- OR your HbA1c is still 8.5% or above despite carefully trying to manage your diabetes, including the use of Lantus or Levemir

My control is good enough that I don't qualify for either of those, but I'm finding that I'm struggling to inject anymore, due to lipohypertrophy and scarring all over my body. I am wondering how everyone has managed to get their insulin pumps?

Did you have bad control, do you still have bad control, are you self funding, or did you get it on some other circumstances?

 

[Seacrow]

My consultant didn't tell me what reasons he presented to the board. Certainly I wasn't under the 8.5%, but there were a couple of other reasons. 1) I react badly to Lantus and Levemir, so back then the choice was pump or no basal. 2) The huge number of injections every day produced severe lipohypertrophy, which caused irregular insulin absorption.

Depending how sympathetic your consultant is, you might be able to argue that the probable reduction in lipohypertrophy produces enough improvement in your quality of life to justify a pump. Or not. It really is very dependent on each CCG and each consultant.

 

[MeiChanski]

The nhs guidelines say that in order for adults to receive nhs insulin pump therapy funding you must satisfy one of these:

- If the person is aged 12 or older and hypos occur frequently or without warning, causing anxiety about recurrence and a negative impact on your quality of life
- OR your HbA1c is still 8.5% or above despite carefully trying to manage your diabetes, including the use of Lantus or Levemir

My control is good enough that I don't qualify for either of those, but I'm finding that I'm struggling to inject anymore, due to hypertrophy and scarring all over my body. I am wondering how everyone has managed to get their insulin pumps?

Did you have bad control, do you still have bad control, are you self funding, or did you get it on some other circumstances?

Hello! Welcome
The main criteria would be a DAFNE course because you need to be educated and carb count precisely and effectively. Also the two criterias that you mentioned. There is a separate criteria like pregnancy, children who cannot convey their hypos etc.
You could ask your consultant but if you are struggling to inject, that reason might be difficult to be considered for one. Because a pump can fail so you might need to resort to injections. Also in other circumstances as well like illness, I know some run quite high with ketones and injections made sure the insulin went in to bring their BG back down. I have been considered for one because of my hypoglycaemias. I don't have a high hba1c because of hypos, so I fit into the other criteria of hypoglycemia unwareness. Unfortunately I don’t feel them coming on, my nurse is worried because I had a few severe accidents in 2013 and she thinks it might happen again. Despite me reducing both basal and bolus along with different ratios. My accident has left me in a different state of mind, so I sometimes don't sleep in fear my bf will wake up to a not so alive me. I use to stay up and constantly test to make sure I was okay. Again, it wouldn’t hurt to ask your team about it. Also it depends on your CCG and hospital, some are more pump friendly and some are not.

 

[MeiChanski]

Also if you feel you have a clinical need for one despite not fitting into the NICE NHS guidelines, do build a case and present it to your consultant.

 

[ssrixty]

The justification for my pump was hypos during and after exercise.

@ssrixty have you spoken to your diabetes team? The way decisions are made seems to vary per CCG. I did not think I would be entitled to a pump but my DSN suggested it and it has been great.
The NICE guidelines are just that: guidelines. There may be other justifications that your team are willing to consider and convince the CCG money bags.

My diabetic consultant has been very unhelpful ever since I've started seeing her, and always seems like she's just ticking boxes to get me out the door. When I told her the troubles I was having she said that I must be doing it wrong. Refused me the freestyle libre even though I met the criteria. She did eventually but it was a fight. So I don't have much faith in her giving me a pump unless I make a strong case

Hello! Welcome
The main criteria would be a DAFNE course because you need to be educated and carb count precisely and effectively. Also the two criterias that you mentioned. There is a separate criteria like pregnancy, children who cannot convey their hypos etc.
You could ask your consultant but if you are struggling to inject, that reason might be difficult to be considered for one. Because a pump can fail so you might need to resort to injections. Also in other circumstances as well like illness, I know some run quite high with ketones and injections made sure the insulin went in to bring their BG back down. I have been considered for one because of my hypoglycaemias. I don't have a high hba1c because of hypos, so I fit into the other criteria of hypoglycemia unwareness. Unfortunately I don’t feel them coming on, my nurse is worried because I had a few severe accidents in 2013 and she thinks it might happen again. Despite me reducing both basal and bolus along with different ratios. My accident has left me in a different state of mind, so I sometimes don't sleep in fear my bf will wake up to a not so alive me. I use to stay up and constantly test to make sure I was okay. Again, it wouldn’t hurt to ask your team about it. Also it depends on your CCG and hospital, some are more pump friendly and some are not.

I initially turned it down the DAFNE because I've learnt to judge carbs intuitively over my whole life, so can judge pretty well what I need to take. Never thought the DAFNE was necessary, and don't really have time for it, but now it's needed if I want to get anywhere. I've been waiting for the course for over a year now, so once I have that I guess I can move forward. My hypo awareness is fine. I've managed to get by in life doing ok with my diabetes and so I'm not really a worthy case for these extra treatments, in the eyes of the ccg, but my quality of life is really suffering now.

My consultant didn't tell me what reasons he presented to the board. Certainly I wasn't under the 8.5%, but there were a couple of other reasons. 1) I react badly to Lantus and Levemir, so back then the choice was pump or no basal. 2) The huge number of injections every day produced severe lipohypertrophy, which caused irregular insulin absorption.

Depending how sympathetic your consultant is, you might be able to argue that the probable reduction in lipohypertrophy produces enough improvement in your quality of life to justify a pump. Or not. It really is very dependent on each CCG and each consultant.

One of the other guidelines is an excessive number of daily injection. How many were you doing per day? Levemir is doing the job mostly, except for overnight, but I still end up having quite a lot per day

 

[MeiChanski]

My diabetic consultant has been very unhelpful ever since I've started seeing her, and always seems like she's just ticking boxes to get me out the door. When I told her the troubles I was having she said that I must be doing it wrong. Refused me the freestyle libre even though I met the criteria. She did eventually but it was a fight. So I don't have much faith in her giving me a pump unless I make a strong case



I initially turned it down the DAFNE because I've learnt to judge carbs intuitively over my whole life, so can judge pretty well what I need to take. Never thought the DAFNE was necessary, and don't really have time for it, but now it's needed if I want to get anywhere. I've been waiting for the course for over a year now, so once I have that I guess I can move forward. My hypo awareness is fine. I've managed to get by in life doing ok with my diabetes and so I'm not really a worthy case for these extra treatments, in the eyes of the ccg, but my quality of life is really suffering now.

Back in 2014 where I explained to my consultant, as soon as I mentioned an insulin pump, she said I must do DAFNE first. I was offered DAFNE but couldn't attend because of university commitments, because it was a whole week. Eventually I was able to attend in november 2018. DAFNE does give you heads up about other things, like exercise, adult activities, illnesses, injection sites, making sure your prescription is up to date etc. So DAFNE is a prerequisite in order to get yourself on a pump route, but even then you have to wait another 6 months after the course.
Also back at my old hospital, very few patients were entitled to get a libre because they were so strapped for cash. Only 2% of patients were able to get it since the end of postcode lottery. My friends from DAFNE haven't been able to get one. I got one when I moved in with my bf to another CCG, my consultant looked at my readings and said I'll prescribe it to you for 6 months. Along with this week, I spoke to my DSN and she asked if I considered a pump, at the time I wasn't expecting much because I was expecting her to say have you tried another ratio in this instance etc. But she said she will speak to my consultant and he will write to get funding approve, then she'll send me a prepump appointment. All in all, your consultant is the person but if he or she isn't helpful, is there another consultant you could ask to speak to? If you develop a strong case, I'm sure someone will listen but DAFNE must be completed first.

 

[novorapidboi26]

For me its was dawn phenomenon, and at that time my Hb was 8% despite rigorous DAFNE implementation....

I would think that having bad injections sites is a clear cut case for overruling all the usual criteria.....just as DP does in a way...

 

[MeiChanski]

For me its was dawn phenomenon, and at that time my Hb was 8% despite rigorous DAFNE implementation....

I would think that having bad injections sites is a clear cut case for overruling all the usual criteria.....just as DP does in a way...

DP is in another criteria, along with pregnancy, mental health issues - severe anxiety but I don't know about lipohypertrophy. But OP needs to do a DAFNE or a similar carb counting course before being considered for it. I know a few others who have been considered for a pump due to DP. I'm not saying it's not possible but he would have to make a very strong case to convince his CCG.

ABCD recommends that insulin pump therapy is also considered in the following situations:

• Pregnancy
• Acute painful neuropathy or symptomatic autonomic neuropathy if conventional treatment fails to enable adequate blood glucose control
• Hypoglycaemia unawareness
• Extreme insulin sensitivity
• Needle phobia
• Severe insulin resistance with poor blood glucose control (especially if the person has type 2 diabetes)
• Specific quality of life issues:

• Pathological fear of hypoglycaemia
• Marked glycaemic excursions/dawn phenomenon
• Excessive number of injections for optimised control
• Impaired exercise capacity, abnormal eating behaviour or an unacceptable number of sick days
• Shift work or frequent travel across time zones
• In children: sub-optimal school performance, exclusion from aspects of a full school life; behavioural problems (for example, mealtimes); adverse impact on family dynamics

I also understand not everyone fits into the criteria for one, I know there are exceptions to the rule.

 

[Peter03]

I just said to my diabetic consultant maybe one day I could have a insulin pump, she replied would you like one, I said yes, she said you need to do blood tests 8 times a day for the next 2week's, 2weeks later I had my insulin pump that was 18 years ago I really love living in France

 

[sleepster]

I was having seizures from night-time hypos that weren't waking me up.
I haven't done a DAFNE course, after I got my pump they asked if I wanted to do one but I couldn't because of work. When I have asked about doing it since, I have been told that the person who ran the DAFNE for pump users has retired and not been replaced, and that the normal DAFNE would be confusing for pump users

 

[porl69]

Totally hypo unaware was one of the main reasons I got mine.

I was having seizures from night-time hypos that weren't waking me up.
I haven't done a DAFNE course, after I got my pump they asked if I wanted to do one but I couldn't because of work. When I have asked about doing it since, I have been told that the person who ran the DAFNE for pump users has retired and not been replaced, and that the normal DAFNE would be confusing for pump users

I was not aware that there was a different DAFNE for pump users!?

 

[MeiChanski]

Totally hypo unaware was one of the main reasons I got mine.


I was not aware that there was a different DAFNE for pump users!?

After reading, apparently there is a DAFNE course for pump users.

http://www.dafne.uk.com/Pump_Curriculum_Training_Workshop-I498.html

 

[sleepster]

I was not aware that there was a different DAFNE for pump users!?

That's just what I was told. I don't know anything about DAFNE

 

[porl69]

Learned something new again today

 

[DCUKMod]

@ssrixty - have you looked at INPUT / JDRF for any additional information?

https://jdrf.org.uk/

 

[Seacrow]

One of the other guidelines is an excessive number of daily injection. How many were you doing per day? Levemir is doing the job mostly, except for overnight, but I still end up having quite a lot per day

I have severe insulin resistance. When the lipohypertrophy was at it worst I could only inject 30u into one site before the absorption became unpredictably variable. Needing 600u for a main meal = 20 injections per meal. Sometimes I'd skip meals just because of the injections.

Never been offered a DAFNE course. I think I rather shot myself in the foot there. Consultant asked 'What did I know about carb counting?' I gave him a 15 min impromptu presentation on the history of carb exchanges, calculating carbs, glycaemic index, glycaemic load, insulin sensitivity factors, insulin and carbohydrate response, the role of the liver and the real biggie, variability. The consultant actually got happy - an interested and involved patient!

 

[porl69]

Needing 600u for a main meal

Just WOW!