# How long can i expect to wait for pump approval?



## olliej96 (Sep 12, 2022)

Hi all! new here, but not new to type 1.

I had an appointment with my endo just over 2 months ago now where I discussed  pumping with her and expressed that I feel I could benefit from one. (Type 1 for 13 years, only ever MDI's) - my numbers are fairly good and I count carbs (did a KAT1E course) but I do more injections throughout the day than average I suppose, and these are smaller units I deliver.

Anyway back to the point, she wrote in the follow up letter that although she doesn't see any reason as to why I should be on a pump, because I can count carbs well and have completed the KAT1E course, she has reffered me to the pump-friendly team in hopes they take me in to consideration. So I guess I'm looking for experiences on how long it can be before I can expect an approval call/letter/email, or if im notified of a denial at all? I'm in the loop (no pun) with NICE, ABCD, JDRF and also those on twitter such as the lovely man himself, Professor Partha Kar.

Any info is greatly appreciated. Cheers!

UPDATE: I've finally managed to get in contact with the secretary for my consultant. I spoke with her and she said that she couldn't see my first referral, but has now sent another referral to the pump clinic (which is at a different site) and I should hear back within 2 weeks.. hopefully. She's also said she'll keep chasing it up for me and will keep me updated. I'm hoping this is the contact i've needed to actually help move things along!


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## Inka (Sep 12, 2022)

Hi @olliej96  I think it depends on your clinic. I’ve had my pump 18 years now, but once I was approved, it took 2 or so months.


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## olliej96 (Sep 12, 2022)

Inka said:


> Hi @olliej96  I think it depends on your clinic. I’ve had my pump 18 years now, but once I was approved, it took 2 or so months.


Thanks for the response!

That's good to know. I don't suppose you can remember how long it took from the referral to approval? I'm a little worried that If im not successful in being approved, that I won't be contacted (in which that could be time to take my case further)


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## helli (Sep 12, 2022)

@olliej96 approval to pump only took a month for me but
- this was 6 years ago and, whilst the NHS can be slow over some things, this is the kind of thing that changes
- this was the time it took at my CCG and all CCGs have different processes
- one reason why my case took little time was that there was a pump start session coming up. Clinics try to start a group of people together and only run this a few times a year. If I had missed my pump start, I think the next one was 3 or 4 months later.

I would recommend getting in touch with your clinic/DSN as ask them what to expect. Only they know what their schedule looks like and what their process is. Unfortunately, someone's experience from 6 years ago in a different part of the country is pretty irrelevant.


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## olliej96 (Sep 12, 2022)

helli said:


> @olliej96 approval to pump only took a month for me but
> - this was 6 years ago and, whilst the NHS can be slow over some things, this is the kind of thing that changes
> - this was the time it took at my CCG and all CCGs have different processes
> - one reason why my case took little time was that there was a pump start session coming up. Clinics try to start a group of people together and only run this a few times a year. If I had missed my pump start, I think the next one was 3 or 4 months later.
> ...


Thanks for the reply, I guess there is a few different processes to factor in that need to to be set in motion, My clinic/specialist is usually quite hard to reach, so I think I'll try and contact my DSN and ask whether or not they've got any update on the referral.


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## Bloden (Sep 12, 2022)

Hi @olliej96.   

I got the go-ahead from my consultant a year ago (Sept 2021). I wasn't as well-qualified as you LOL, so had to jump thru all the carb-counting course hoops. Once I'd done all the necessary courses (by March this year), I waited for a month for the pump clinic to get in touch. They didn't contact me (very busy, short-staffed), so I emailed them, and that got the ball rolling. My pump start was June 28, 2022.
As others have noted, every area in the UK is different. 
Good luck! Do you know which pump you want yet?


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## helli (Sep 12, 2022)

Bloden said:


> Do you know which pump you want yet?


Before contemplating which pump you want, I strongly recommend finding out what pumps are available. There is no point setting your heart on something and then find out, as in my CCG, there is only one pump on offer.


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## olliej96 (Sep 12, 2022)

Bloden said:


> Hi @olliej96.
> 
> I got the go-ahead from my consultant a year ago (Sept 2021). I wasn't as well-qualified as you LOL, so had to jump thru all the carb-counting course hoops. Once I'd done all the necessary courses (by March this year), I waited for a month for the pump clinic to get in touch. They didn't contact me (very busy, short-staffed), so I emailed them, and that got the ball rolling. My pump start was June 28, 2022.
> As others have noted, every area in the UK is different.
> Good luck! Do you know which pump you want yet?


Hey!

if there's one things us type 1's know.. it's the unnescessary hoops we have to leap through to get what we need. Was part of your approval terms having to do the carb counting course? I actually did mine back when the Libre's were first being prescribed and my consultant wanted me to do it first (SO glad I did for the extra control) the pump team here is 40 mins away at a different clinic, so I could send an email their way too.

If i'm accepted, i'm very much swaying toward T-slim X2, i'vjumped the gun and done extensive research on a fair few pumps, and this appeals to me the most. It's also available at the pump clinic here!


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## olliej96 (Sep 12, 2022)

helli said:


> Before contemplating which pump you want, I strongly recommend finding out what pumps are available. There is no point setting your heart on something and then find out, as in my CCG, there is only one pump on offer.


Thankfully the list is fairly big here with about 5 pumps available, and they've got the T-slim X2 which is the pump that i'd go for.


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## Inka (Sep 12, 2022)

olliej96 said:


> Thanks for the response!
> 
> That's good to know. I don't suppose you can remember how long it took from the referral to approval? I'm a little worried that If im not successful in being approved, that I won't be contacted (in which that could be time to take my case further)



I don’t remember exactly but I had to be approved for funding by a panel. I failed the first time but there was an appeal and I was then approved for a pump. Then 2 or so months later I got it.


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## PhoebeC (Sep 12, 2022)

I have been wondering the same myself. My appointment with the consultant is 20th October, I want to know after this how long it will be, but we will just have to wait and see.

I was hoping I would have time before my holiday in December to get to grips with a pump, but now I don't mind if it is after.


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## olliej96 (Sep 12, 2022)

PhoebeC said:


> I have been wondering the same myself. My appointment with the consultant is 20th October, I want to know after this how long it will be, but we will just have to wait and see.
> 
> I was hoping I would have time before my holiday in December to get to grips with a pump, but now I don't mind if it is after.


Ahh that's good to hear you're in a similar boat.

It seems time can vary depending on location with approval time and being seen/choosing pump. I'd say to give it at least a couple of months before taking action, start by phoning your DSN/Consultant's secretary and ask for any updates when you feel is appropriate.


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## Pumper_Sue (Sep 12, 2022)

olliej96 said:


> Anyway back to the point, she wrote in the follow up letter that although she doesn't see any reason as to why I should be on a pump, because I can count carbs well and have completed the KAT1E course, she has reffered me to the pump-friendly team in hopes they take me in to consideration. So I guess I'm looking for experiences on how long it can be before I can expect an approval call/letter/email, or if im notified of a denial at all? I'm in the loop (no pun) with NICE, ABCD, JDRF and also those on twitter such as the lovely man himself, Professor Partha Kar.


Simple solution to find your answer is ring the team and ask when your apt is


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## olliej96 (Sep 12, 2022)

Pumper_Sue said:


> Simple solution to find your answer is ring the team and ask when your apt is


Been sent on a bit of a roundabout, contacted the clinic (who are pump friendly) they said to contact my consultant at my hospital (who isn't pump friendly) to find out, I'm getting no luck calling them, and the assistant(?) for the DSN says she wont have that kind of information, the communication seems to have fallen off haha


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## Pumper_Sue (Sep 12, 2022)

olliej96 said:


> Been sent on a bit of a roundabout, contacted the clinic (who are pump friendly) they said to contact my consultant at my hospital (who isn't pump friendly) to find out, I'm getting no luck calling them, and the assistant(?) for the DSN says she wont have that kind of information, the communication seems to have fallen off haha


Can you not contact the consultants sectary?


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## olliej96 (Sep 12, 2022)

Pumper_Sue said:


> Can you not contact the consultants sectary?


That's who i've been trying to contact yeah. I've noticed that it's tricky to even get through to the secretary with stuff in the past unrelated to this. I've left voicemails before but I don't feel like they listen to them and just rely on you constantly trying again


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## helli (Sep 12, 2022)

Have you tried email? Email addresses are available online for my consultant and my DSN gave me hers years ago. 
They are both responsive. The advantage of an email is that they can respond when convenient for them rather than being interrupted by a phone call.


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## olliej96 (Sep 12, 2022)

helli said:


> Have you tried email? Email addresses are available online for my consultant and my DSN gave me hers years ago.
> They are both responsive. The advantage of an email is that they can respond when convenient for them rather than being interrupted by a phone call.


I've checked online, and we've only got mobile numbers/extensions for the 3 hospitals that are around my area. That's clinic numbers/DSN numbers, but no email addresses.


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## Bloden (Sep 12, 2022)

olliej96 said:


> Was part of your approval terms having to do the carb counting course?


Yep.  I'd already been carb counting for 13 years but had no proof of my abilities - it was all very useful tho, and I learned some new things.  

If you get the tslim, will you be looping?


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## olliej96 (Sep 12, 2022)

Bloden said:


> Yep.  I'd already been carb counting for 13 years but had no proof of my abilities - it was all very useful tho, and I learned some new things.
> 
> If you get the tslim, will you be looping?


You're very experienced then!

Oh you bet I will be!


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## Bloden (Sep 12, 2022)

olliej96 said:


> You're very experienced then!


Hahaha...you'd think so by now! I'm still rubbish at guesstimating carb when I eat out.


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## olliej96 (Sep 12, 2022)

Bloden said:


> Hahaha...you'd think so by now! I'm still rubbish at guesstimating carb when I eat out.


I agree with you there. travelled in India in 2019 and although the food was lovely, I just couldn't get it right haha, eating out will always be a guesstimate. Unless using Carbs & Cals which has some info available for chain restaurants.


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## helli (Sep 12, 2022)

olliej96 said:


> I agree with you there. travelled in India in 2019 and although the food was lovely, I just couldn't get it right haha, eating out will always be a guesstimate. Unless using Carbs & Cals which has some info available for chain restaurants.


My philosophy is I don't want diabetes to control my life. Accurate carb calculations takes too much effort and, with everything else that can affect our levels, our blood sugars will decide to do something else anyway.
Like you, I guestimate and, with a pump and CGM, I can tweak as I go along when necessary. This can be a bolus top up or a basal suspension.
This may not be what is recommended (there is a bigger emphasis on carb counting with a pump) but, for me, it takes less brain power albeit  a little more time.


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## everydayupsanddowns (Sep 12, 2022)

I don’t think it was long for me - but I guess it will vary greatly from place to place and clinic to clinic. A few months perhaps?

I just went to look for a blog post I was sure I made at some point which included the timing details I can no longer remember off the top of my head (it was a decade ago!), but couldn’t find the post I was looking for.

EDIT: Found it! (way earlier than I half remembered). September I asked in clinic, couple of weeks later I saw the pump nurse to be assessed, and by November I was up and running.

I have read others’ experiences which were far more of an uphill battle, and involved many delays and ‘wait untils’. Sometimes over the course of *years* not months. 

Hope you get some positive news soon.


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## nonethewiser (Sep 12, 2022)

Got told wait could be up to year, as it happened it was 10 weeks till day started on pump, that was 10 years ago.


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## olliej96 (Sep 13, 2022)

everydayupsanddowns said:


> I don’t think it was long for me - but I guess it will vary greatly from place to place and clinic to clinic. A few months perhaps?
> 
> I just went to look for a blog post I was sure I made at some point which included the timing details I can no longer remember off the top of my head (it was a decade ago!), but couldn’t find the post I was looking for.
> 
> ...


Thank you for your help!

it's pretty crazy how the wait times can differ so much, but I guess they're working as hard as they can. Hopefully I'll hear something soon. I'm in touch with a few people who've had bad experiences on twitter and they're always happy to support me. I'm just wary of how my consultant has referred me, as she was pretty reluctant to so that might not look great, but as I feel I meet the guidlines, i'll definitely be looking at other options if I have to


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## olliej96 (Sep 13, 2022)

nonethewiser said:


> Got told wait could be up to year, as it happened it was 10 weeks till day started on pump, that was 10 years ago.


That's insane! "could be next week, could be next year." haha - I'm glad your process took way less time. I'm guessing as you're still pumping that you're definitely benefiting from it?


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## SB2015 (Sep 13, 2022)

I was refused a pump the first time that I asked about it.  I asked for a list of their reasons, then gathered data over the following 6 months against each of their reasons, and got agreement at my next appointment 6 months later.  I was switched to Levemir to do a split basal in preparation. 
Then there was a wait until the next pump start group as the clinic need to have group ready at the same time to justify the expense of the trainer.  This may have changed with the advent of zoom training, and may vary with different pumps.  I waited about 9 months.

With regard to whether it is worth it.  Definitely from my point of view, as I saw the benefits pretty quickly as I was on tiny doses of insulin and the pump allowed me to match my basal to what I needed hour by hour Which wiped out virtually all night hypos on normal days. It took some work to get it to match what I needed and to get used to setting temporary changes, but well worth the effort.

I hope that you have success in getting yours.  The NIcE guidelines have changed in favour of pumping so you could fall back in those if necessary, and set Partha Kar on to your CCG if you get no joy.


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## olliej96 (Sep 13, 2022)

SB2015 said:


> I was refused a pump the first time that I asked about it.  I asked for a list of their reasons, then gathered data over the following 6 months against each of their reasons, and got agreement at my next appointment 6 months later.  I was switched to Levemir to do a split basal in preparation.
> Then there was a wait until the next pump start group as the clinic need to have group ready at the same time to justify the expense of the trainer.  This may have changed with the advent of zoom training, and may vary with different pumps.  I waited about 9 months.
> 
> With regard to whether it is worth it.  Definitely from my point of view, as I saw the benefits pretty quickly as I was on tiny doses of insulin and the pump allowed me to match my basal to what I needed hour by hour Which wiped out virtually all night hypos on normal days. It took some work to get it to match what I needed and to get used to setting temporary changes, but well worth the effort.
> ...


Thanks for your advice and experience.. it actually appears we are similar in the sense of dosage. I'm currently already on a split basal (Levemir) once in morning and once before bed. My eatings habbits are never the same nor meal sizes, and i seem to inject 'little and often' if that makes sense.

I've been trying to contact the secretary for my consultant this morning but no luck yet, I think if I'm not successful in getting funding, i'll go further. I follow Partha's work pretty closely and the amazing things he has done for us, so I will copy him in if i'm struggling for sure!


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## SB2015 (Sep 13, 2022)

olliej96 said:


> Thanks for your advice and experience.. it actually appears we are similar in the sense of dosage. I'm currently already on a split basal (Levemir) once in morning and once before bed. My eatings habbits are never the same nor meal sizes, and i seem to inject 'little and often' if that makes sense.
> 
> I've been trying to contact the secretary for my consultant this morning but no luck yet, I think if I'm not successful in getting funding, i'll go further. I follow Partha's work pretty closely and the amazing things he has done for us, so I will copy him in if i'm struggling for sure!


It can be frustrating how many hoops we have to Juno through but if it works and we get what we need then it is worth it.  I look forward to hearing what happens next, as I get the feeling you will persist with this and they might as well give in now.


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## olliej96 (Sep 13, 2022)

SB2015 said:


> It can be frustrating how many hoops we have to Juno through but if it works and we get what we need then it is worth it.  I look forward to hearing what happens next, as I get the feeling you will persist with this and they might as well give in now.


I agree, as someone who completely understands just how much pressure our NHS is under, I HATE being 'that guy' who calls constantly, emails constantly etc. I feel like i'm being a massive burden, but in my eyes once I'm pumping, that'll  eliminate the badgering. 

Been diagnosed type 1 for almost 14 years now and I don't think i've ever tried to contact the clinic so much, I was given MDI and I felt that I just had to get on with it, which is what i've been doing, but when there's a potential opportunity to ease my life, im going for it.


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## SB2015 (Sep 13, 2022)

It was reading things on here that made me aware of what was available, as well as lots of useful strategies . 

Now looping with my 780g and guardian 4 sensors and finding life so much easier.


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## Pumper_Sue (Sep 13, 2022)

olliej96 said:


> I've been trying to contact the secretary for my consultant this morning but no luck yet, I think if I'm not successful in getting funding, i'll go further. I follow Partha's work pretty closely and the amazing things he has done for us, so I will copy him in if i'm struggling for sure!


You can also go through PALS. I was more than peed off with a hospital situation yesterday and went straight to PALS, who can access your medical records if you give the say so and they can tell you if a referral has been made or they can directly contact the sectary you want to speak too.


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## nonethewiser (Sep 14, 2022)

olliej96 said:


> That's insane! "could be next week, could be next year." haha - I'm glad your process took way less time. I'm guessing as you're still pumping that you're definitely benefiting from it?



Certainly do, so many benefits from using one, especially ability to have multiple basal rates to meet body's demands throughout day.


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## olliej96 (Sep 14, 2022)

nonethewiser said:


> Certainly do, so many benefits from using one, especially ability to have multiple basal rates to meet body's demands throughout day.


To be fair i am a big fan of the the half units, and even smaller amounts you can deliver with pumps, gives you the chance to really fine tune things.


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## olliej96 (Sep 14, 2022)

Pumper_Sue said:


> You can also go through PALS. I was more than peed off with a hospital situation yesterday and went straight to PALS, who can access your medical records if you give the say so and they can tell you if a referral has been made or they can directly contact the sectary you want to speak too.


I've heard of PALS, but didn't realise they could do this! thank you! As i've spoken to the secretary yesterday who told me i should hear within 2 weeks, i'll wait the 2 weeks before making contact with them to see what they can do..

thanks again!


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## nonethewiser (Sep 14, 2022)

olliej96 said:


> To be fair i am a big fan of the the half units, and even smaller amounts you can deliver with pumps, gives you the chance to really fine tune things.



Absolutely my friend, plus you can extend that bolus dose over many hours, ideal for difficult meals like those high in protein & fat.


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## olliej96 (Sep 14, 2022)

nonethewiser said:


> Absolutely my friend, plus you can extend that bolus dose over many hours, ideal for difficult meals like those high in protein & fat.


I LOVE that. I still sometimes can't wrap my head around how far tech has come, it's insane to think that we can actually do this now.


Also, I'm realising how much like my nan i'm sounding haha


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## nonethewiser (Sep 15, 2022)

olliej96 said:


> I LOVE that. I still sometimes can't wrap my head around how far tech has come, it's insane to think that we can actually do this now.
> 
> 
> Also, I'm realising how much like my nan i'm sounding haha



Good thing is it will only get better.


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## SB2015 (Sep 17, 2022)

I look forward to hearing how you get on. 
Just had a great holiday where my pump has got on with its job in the background most of the time. As you say tech has come on so far, and for me that is just looking back fourteen years.

Let us know how things progress.


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## olliej96 (Sep 17, 2022)

SB2015 said:


> I look forward to hearing how you get on.
> Just had a great holiday where my pump has got on with its job in the background most of the time. As you say tech has come on so far, and for me that is just looking back fourteen years.
> 
> Let us know how things progress.


I'm glad it has served you well on your holiday! Oh for sure as and when I get any updates, I'll post them here. I'm currently in the New Forest so signal is a bit spotty, but if I hear something I'll update during next week!


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