• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

I'm a newbie here but not as far as T1D is concerned

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
S

SteveG4

Member
Relationship to Diabetes
Type 1
I was diagnosed with type 1 diabetes 44 years ago and throughout that period I've been on Multiple Daily Injection Therapy. I'm very conscious of the great technology out there (insulin pumps and even closed loop). I've been told today by my clinic team that I cannot have an insulin pump because I don't satisfy the NICE criteria. Does anyone have any advice on how I can move forward from this disappointing situation? I guess I'm not the only one in this predicament and I'm not expecting a 'quick fix'.
 
I must admit I've never even asked, though in retrospect maybe I should have when I was having significant hypos unexpectedly. (I doubt a pump would have been the answer even so.)

A source (who I won't name) mentioned that the hypo route is probably the more straightforward one (presuming you're well controlled enough that you won't meet the HbA1c one) since it's hard to disprove a claim that you're anxious about hypos.

Having said that, if your team doesn't really think you ought to have a pump then I'd guess that's the real problem. (If they want you to have the pump then you can collectively come up with a way for them to justify it.)

There's a trial of closed loop systems but I think it's limited to certain areas. If you were in one I'd hope your team would have suggested it. (It may be that it requires current pump users, however. I don't know the details.)
 
Many thanks for your reply Bruce, appreciated. I reduced the number of hypos I've been experiencing lately by acquiring an Abbott Freestyle Libre 2 glucose monitoring system, which has a very useful alarm on it to warn you if you're getting low. So I've painted myself into a corner here for a pump as far as the hypo line of argument is concerned as I used to have a high frequency of these, none of them severe though. I take your point that there needs to be a will and a mindset to move this forward for me and at the moment, for whatever reason, I don't detect this. I fully appreciate that there will be those really struggling with their control of course who will be more deserving than myself. I'm just trying to seek an easier way as I've had T1D for so long.
 
Bruce Stephens said:
I must admit I've never even asked, though in retrospect maybe I should have when I was having significant hypos unexpectedly. (I doubt a pump would have been the answer even so.)
Click to expand...

Welcome to the forum @SteveG4

Actually I think Bruce has hit the nail on the head.

After many years of diabetes, awareness of hypoglycaemia often becomes slightly impaired (though not in a driving-preventing way). And the strongest evidence for insulin pumps is for their ability to reduce incidence of hypoglycaemia.

If you have to work hard to avoid hypos, because you never know quite when then might happen, if you feel the need to take additional precautions when driving, or at bedtime, then you would seem to be a suitable candidate, if you have a supportive clinic.
 
SteveG4 said:
I've been told today by my clinic team that I cannot have an insulin pump because I don't satisfy the NICE criteria. Does anyone have any advice on how I can move forward from this disappointing situation? I guess I'm not the only one in this predicament and I'm not expecting a 'quick fix'.
Click to expand...
Did they tell you in what dept you do not meet the criteria?
 
I was refused a pump the first time that I asked. I asked for their reasons then spent the following 6 months gathering data to meet the criteria and then got a pump.

The main reason for me getting a pump was I was on low doses of insulin so with just half unit pens I found it difficult to get the right amount of insulin without going hypo or high (for me). I also was anxious about keeping a tight control. Having the pump definitely reduced the frequency of hypos. They initially thought that my having a pump would increase my anxiety as I would have more work to do in making finer adjustments, but it has definitely improved things for me.
 
Hi @SteveG4

INPUT is a charity that helps people access pumps. I know they have merged with JDRF but I think they still do the same job. This page might be helpful There's a contact link at the bottom.
 
Not that I know of @Leadinglights Although from time to time some manufacturers offer a free meter, but you still have to pay for strips. Spirit Healthcare used to give free meters IIRC and their strips are pretty cheap.
 
SB2015 said:
I was refused a pump the first time that I asked. I asked for their reasons then spent the following 6 months gathering data to meet the criteria and then got a pump.

The main reason for me getting a pump was I was on low doses of insulin so with just half unit pens I found it difficult to get the right amount of insulin without going hypo or high (for me). I also was anxious about keeping a tight control. Having the pump definitely reduced the frequency of hypos. They initially thought that my having a pump would increase my anxiety as I would have more work to do in making finer adjustments, but it has definitely improved things for me.
Click to expand...
Insulin pump is a hassle
 
pearlzo436 said:
Insulin pump is a hassle
Click to expand...
What do you base that comment on?
Initially, I found it a bit of a challenge to learn how to use my pump but my diabetes management is far better and now it is more second nature than injecting for 12 years.
When I had to resort to injecting recently, I found it a major hassle. I was unable to make small corrections, bolus doses were way out because I could only calculate to half a unit of insulin and exercise was near impossible without hypoing.
 
pearlzo436 said:
Insulin pump is a hassle
Click to expand...

It’s extra work changing the sets and cannulas and filling the reservoir with insulin but the pay-off is that you get a much better insulin delivery system, particularly with regard to delivering your basal. You can vary your basal hour by hour, reducing hypos and hypers, and dealing with exercise and illness more easily.

Type 1 diabetes is a hassle for sure, but a pump can be the closest thing to a working pancreas that we can get currently.
 
pearlzo436 said:
Insulin pump is a hassle
Click to expand...
Have you had a bad experience with pumping?

Having a pump has transformed my management and how I feel about my diabetes.
The ability to alter my basal insulin rate hour by hour through a day has enabled me to more closely match what I need through the day, which I found impossible with injections.

T1 is definitely a hassle and pumping is not for everyone, but it is well worth researching
 
everydayupsanddowns said:
Welcome to the forum @SteveG4

Actually I think Bruce has hit the nail on the head.

After many years of diabetes, awareness of hypoglycaemia often becomes slightly impaired (though not in a driving-preventing way). And the strongest evidence for insulin pumps is for their ability to reduce incidence of hypoglycaemia.

If you have to work hard to avoid hypos, because you never know quite when then might happen, if you feel the need to take additional precautions when driving, or at bedtime, then you would seem to be a suitable candidate, if you have a supportive clinic.
Click to expand...
Many thanks, I think I can see a potential way forward here.
 
SteveG4 said:
No unfortunately I haven't had a detailed discussion at this stage. I will however look to nail this down in my next clinic appointment.
Click to expand...
Hello Steve,
may I suggest you actually write to the consultant who said you did not meet the criteria for a pump? This way you have it in black and white and can then work on things to achieve your aim for a pump. Many of us had to jump through hoops to get a pump, so we can help you out in that dept. 🙂
 
SteveG4 said:
Many thanks Pat, I'll look to contact JDRF (I tried this once by email but didn't get a firm lead).
Click to expand...
I have contacted a friend who may be able to tell me of a direct contact you can use.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top