How much difficulty did you have getting a pump?

[EllsKBells]

What it says on the tin really. I would love a pump, but my DSN is dead set against it, but won't really give me any solid reason, apart from the fact that 'my mental health is a bit suspect'. I could point out that the diabetes contributes to that...

A bit of background. Have been T1 for 5 years, and I am not the most insulin sensitive person on the planet at the best of times, although I am extremely sensitive to stress, temperature, and some of my other medications. No Dawn Phenomenon, thankfully, but I do get a very aggressive feet to the floor rise - up to 5 or 6 mmol/L sometimes, and I also have very, very bad hypo rebound - this afternoon I went down to 2.2, for no good reason I might add, and two hours later it was 20.3. The hypo was treated with five jelly babies, which long experimenting has shown to be the right amount - four doesn't bring me up enough. Sometimes I end up having 7 or 8 injections a day with all the corrections, and once I'm high, it really, really doesn't like coming down. Even on tresiba, which has helped, my profile is still pretty erratic throughout the day.

Basically, then, I have two questions. One, do people think that I would actually benefit from a pump - I do, and I've done a lot of reading, but you are the experts? And two, do I push harder? Or do I just accept that my DSN has decided she doesn't want me to have one, whatever her reasons are, and leave it at that?

Sorry for the essay!

 

[glavesr]

Your in the exact position I was and am in it's has took me eight years of pleading with my doctors and DSN the amount of hoops I've had to jump though to even get them to approach the subject I've been changed from novo rapid to humalog then to apidra then on to humilin then back to novorapid I've been on 4 different sizes of needle from 4mm to 8mm I've been on levimir then switched to tresiba they have given me accuchek aviva experts then I finally after multiple periods of burnout and dka I finally got a break with my current DSN she wanted me to use a loaner libre and sensor for two weeks saw my patterns and after a few months of using a libre sensor which I got a trail for and all the expense of buying the sensors she has put me forward to have a assessment by my clinics pump doctor after of 8 years of asking I am the closest I've ever been and from what I have seen and researched a pump can work wonders for most people but my main advice is to make friends with religion if your choosing your going to need prayer and hope but keep pushing and try to give them as much evidence as possible

After 8-9 years I'm 10 days away from finding out if I get a pump if they say yes my DSN want me on the pump by the end of may so it can be done it just requires perseverance

 

[noblehead]

Sometimes I end up having 7 or 8 injections a day with all the corrections, and once I'm high, it really, really doesn't like coming down. Even on tresiba, which has helped, my profile is still pretty erratic throughout the day.

@EllsKBells , argue your case using the ABCD recommendations which includes Excessive number of injections for optimised control:

http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/

 

[Snapsy]

Hi @EllsKBells . I encountered some difficulty getting my foot in the door for a pump. Please forgive the scale of this post - I've posted it before, on the 'what it's really like to live with type 1' sticky, and I apologise for clogging up this thread with it!

But I did want to show you how I expressed my feelings to my DSN.

Love Snapsy


I wrote the essay below in the middle of July 2015 - I'd had enough, and I really, really wanted a pump. Writing it all down got my thoughts in order, and I e-mailed it to my DSN, who I'd been seeing very frequently - every few weeks - together with my very supportive husband, as I had really been struggling with the psychological aspects of needing to be so very much in control. I'll just repeat that there is a happy ending to all this - I have a pump, I have a Libre, I HAVE A LIFE - well, I'm getting there.

(Posted below in a separate chunk due to it being too long!)

 

[Snapsy]

Ooops. It's too long to post! Wonder how I managed it the first time.

Page 3 of this link.... http://www.diabetes.co.uk/forum/thr...really-like-to-live-with-type-1.103794/page-3

 

[EllsKBells]

@glavesr Thank you, that definitely makes me feel better!

@azure I might print that out and take it with me when I go. My DSN got very, very cross when she found out I was injecting in between meals, but as I said to her then, what else am I supposed to do?

@Snapsy Wow, just wow! I don't think I could put my feelings about it down on paper anywhere near so eloquently, but you have put your finger on it exactly! I might have to try. My mental health is dodgy, she's not wrong, but it is even worse when I am struggling for control, because I feel so guilty.

Thank you for your really supportive posts everyone! They have really inspired me to fight on

Much love E xxx

 

[Snapsy]

Kindred spirits, @EllsKBells ! Glad it's helped.

For what it's worth it sounds to me that you've got a good case for being considered for a pump. Is there another team member you'd be able to talk to about it? Not just your DSN, I mean?

And if when you're in contact with your DSN you'd like to use any of my words in that post I linked to, they're my gift to you.

 

[paulliljeros]

If you have done the research into pumps, and genuinely believe it will improve your life and control, and you honestly take you your diabetes seriously, willingly taking sufficient tests, and intend to continue doing so, then on the face of it, there really isn't a reason why you shouldn't have a pump. Perhaps asking your DSN to outline the exact reasons, and elaborate on why he/she thinks a pump is not appropriate for you is the first step. You will then have either an understanding of what you need to change to achieve your objective, or if you believe your DSN is not right, then you can consider changing clinics. I know that for the first 25 years of being T1, I simply did not have the right attitude towards diabetes to be given a pump, so for me, it required a complete change of attitude, and a fresh start at a new clinic.

 

[Deleted Account]

I have two thoughts:
- how do your symptoms relate to what NICE require?
- are you over-correcting?

Have you read the NICE guidelines (https://www.nice.org.uk/guidance/ta151/resources/insulin-pump-therapy-for-diabetes-374892589)?
It says
Continuous subcutaneous insulin infusion or ‘insulin pump’ therapy is recommended as a possible treatment for adults and children 12 years and over with type 1 diabetes mellitus if:
• attempts to reach target haemoglobin A1c (HbA1c) levels with multiple daily injections result in the person having ‘disabling hypoglycaemia’, or
• HbA1c levels have remained high (8.5% or above) with multiple daily injections (including using long-acting insulin analogues if appropriate) despite the person and/or their carer carefully trying to manage their diabetes.

Unfortunately, with your multiple correction doses, you may be helping to keep your HbA1C in check and, hence, not complying with the guidelines. Not that I would recommend putting your control at risk.

Regarding your multiple injections: 8 - 9 per day does not sound overly excessive depending how often you've eaten. However, if you are doing lost of corrections, this may be contributing to your BG swings if you are over correcting. The advice I was given was to only correct 4 hours after injecting (although I reduced this to 3 hours). 8 - 9 injections suggests you are correcting more often.

 

[Engineer88]

yes It took me 10 years and eventually a change of not just clinic but location (south wales to Northampton).

Have you spoken to Input?

 

[tim2000s]

@helensaramay - NICE guidelines are not the only way to get a pump. The Association of British Clinical Diabetologists (ABCD) also recommends pumps for the following reasons:

• 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 type 2)
• 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

@EllsKBells Most people fall into one of these, so it's usually possible to persuade a consultant to recommend you for a pump, especially if you have demonstrated that you are trying on MDI. If your hospital doesn't help, speak to INPUT about your options.

 

[Juicyj]

One, do people think that I would actually benefit from a pump - I do, and I've done a lot of reading, but you are the experts? And two, do I push harder? Or do I just accept that my DSN has decided she doesn't want me to have one, whatever her reasons are, and leave it at that?

Hey i've just read through your post, your story sounds very similar to mine, I struggled massively on MDI, I was always anxious, I worked so hard at trying to stay stable, but coupled with DP, hormones each month running savage, and my ever changing moods, I finally sat down with my DSN and she could see how hard I was working with very little return. She supported me fully for the pump which was the turning point, my reasons were based on the fact that my type 1 had affected my quality of life and that i'd had to change jobs because I had suffered numerous hypos in meetings which affected my confidence. Your priority is to get your DSN on side and establish with them why they are not supporting you, and if they continue to deny you then go to your consultant, they have discretion in putting people forward for a pump, as @tim2000s has said you don't necessarily need to meet NICE criteria. Be prepared to stand your ground though, you may get turned down at the first hearing but if you keep pushing then you stand a good chance of being accepted at the next hearing, each trust has a different process and timescales will of course vary, it's really down to you to keep pushing your team though to make this happen.

 

[tim2000s]

Be prepared to stand your ground though, you may get turned down at the first hearing but if you keep pushing then you stand a good chance of being accepted at the next hearing, each trust has a different process and timescales will of course vary, it's really down to you to keep pushing your team though to make this happen.

Absolutely. I turned up to ask for a pump to be met with a registrar that couldn't read Libre graphs and therefore didn't believe me when I told him about dealing with Dawn Phenomenon and the number of shots required to maintain good control.

I wasted 45 mins of other people's time using the broken record technique. When he asked if we were done I repeated that I was there to be put forward for a pump. When he refused we did the same dance again. About eight times. He finally agreed to speak to the lead consultant about it and within two weeks I had a letter inviting me to a pump pre-appointment.

That was the one where they assess whether you can cope/should go onto a pump. It required seeing a consultant, the dietitian and the clinic psychologist. I insisted on seeing all three that morning in any gaps in their schedules to make sure I got it all done in one hit. I was pumped up a month later.

I guess the moral of this is that the only way to get what you want if you're not being offered it is to be bloody minded about it and fight for yourself. It's not something most brits are all that comfortable with, but in an institution like the NHS, no-one is going to look out for you if you are perceived as "doing okay with what's on offer".

 

[Gemma2]

Have you been on a DAFNE Course? That might increase your chance of getting a Pump.

 

[EllsKBells]

@helensaramay I don't *think* I'm over correcting. I'm fortunate enough to have an Accu-chek Aviva Expert Meter, which calculates your insulin still on board. I eat 2 - 3 meals a day, so it is more injections than I would like.

@Gemma2 Sort of - I've done a BERTIE, which is a local variant of DAFNE, and if my Hba1c hasn't really improved next time they check, I think my DSN is planning to put me on the waiting list for the DAFNE course in our area, so hopefully in the next year or so.

@Juicyj That's really interesting about changing jobs. I'm in my final year of my degree - Biochemistry - and I would love to pursue a career in research, but currently, I just don't see it as being realistic - my numbers are bad a sufficiently significant portion of the time, and lab work doesn't just 'wait' for you to finish having a hypo, or come back down again so your motor skills come back. I might have to try and explain that as well.

@tim2000s thank you for all that very helpful information I have just been back through my records, and I have seen the consultant exactly once in the past three years - my hospital is covering a large area, and consequently a lot of people, so they don't get to see people as often as they would like. My DSN is really my only point of contact, along with the 'diabetic specialist GP', and I'd better not get started on that one!

Thank you everybody