Funding and changing hospitals

[saruhbeau]

Hello,

I have a few questions regarding pumps/funding and criteria and know you are the experts here!

I am 26, been t1 for 19 years. Had periods of very poor control mainly due to ED-DMT1 (diabulimia) but haven't omitted insulin in 2 yrs and have been trying my hardest to control my diabetes for a year now.

I have painful neuropathy which no medication has helped, non alcoholic fatty liver disease, gastroparesis, and most recently found d out I have proliferative retinopathy in both eyes which I am waiting for treatment for.

I inject levemir twice daily and humalog up to 8 times a day in between. My latest hba1c was 8.4 but I think it will be slightly lower next time as I have been using a libre (which is amazing!)

I want an insulin pump because my poor control is affecting the quality of my life. It affects my mental and physical health. I have more time off work due to hypos hypers and gastroparesis which has led to me not being able to work full time anymore. I am constantly tired from fluctuations in bg level. 8.4 doesn't sound high but it is that % due to wide fluctuations.

I carb count religiously and when not using the libre test between 6-12 times a day. Anything over 11 I correct for hence 10+ injections a day. It is more than a full time job!!

I contacted input who recommend I get referred to Kings College hospital London (UCL). I am at a pump hospital in Surrey (probably giving away which one!) But input said I will have more luck at UCL.

I am also keen to start a family as soon as my retinopathy has settled down, but want to get better control before thinking about this. I feel like a pump is my only option and I am desperate to be honest. I don't expect pumping to be easy at all and I'm prepared for hard work, I just need to get some kind of quality of life and good control.

My questions are:

Has anyone else asked for a referral to another hospital? Do I need to ask my consultant or can my GP do this? Did you have any problems doing this?

Has anyone managed to get pump funding on the ABCD guidelines alone, with a hba1c under 8.5 and no disabling hypo's?

My dsn is completely against the idea of me getting a pump. I see my consultant this month so will prepare my argument to present to him but I am not hopeful and think I will end up following input's advice.

Thanks in advance for your replies.

Sarah x

 

[tircoed]

I asked to change the hospital i was at because they did not do the pump i wanted, i spoke to my consultant and he contacted the other hospital who were happy for me to move over to them. Good Luck

 

[mentat]

My dsn is completely against the idea of me getting a pump.

That's ridiculous. IMO anyone with gastroparesis should be encouraged to try a pump. The ability to do extended boluses and temporary basals can be a huge help with slow digestion and unexpected lows. For instance if there is too much insulin in your system at present, you can shut your basal off entirely for an hour or two, which can reduce the amount of hypos/treatments you need.

It sounds like you are already doing the "poor man's insulin pump" as well as "poor man's CGM". If you were not injecting 8 times a day you would have a higher HbA1c. You are definitely demonstrating the level of commitment required for a pump.

Anything over 11 I correct for hence 10+ injections a day.

Do you take into account insulin-on-board? If not, this could be contributing to a cycle of highs and lows. Most insulin pumps can incorporate insulin-on-board for you.

 

[Snapsy]

Has anyone managed to get pump funding on the ABCD guidelines alone, with a hba1c under 8.5 and no disabling hypo's?

My dsn is completely against the idea of me getting a pump. I see my consultant this month so will prepare my argument to present to him but I am not hopeful and think I will end up following input's advice.

Hi @saruhbeau ,

I have no experience of getting referred to another hospital, but it sounds like INPUT have been of help, so I'm glad to hear that.

Regarding preparing your case to put to your consultant - well, you've put it very well and very eloquently in your post - I would recommend (as this is what helped me) writing it as a letter to your DSN and/or consultant in advance of your appointment. I have 'form' for writing essays to my team! Do have a read of my post of page 3 of this thread (it's the 8th one down the page) - this is my own letter saying why I felt a pump would benefit me.
http://www.diabetes.co.uk/forum/thr...really-like-to-live-with-type-1.103794/page-3

I got pump funding when my HbA1c was 42mmol/mol (6% in 'old money'). I had a lot of hypos, but was always able to deal with them myself - but I did have entire days that I would need to 'write off' and not be able to work. For me it came down to quality of life issues. I was so, so obsessive about my sugar levels that I would micromicromicromanage myself.

Sending strength! Do keep us posted.

Love Snapsy


(Edited to clarify HbA1c)

 

[paulliljeros]

Hi @saruhbeau I live in Surrey also and did not get on with my diabetes clinic (it was partly my fault as well though, to be honest) however, when I sorted myself out, I wanted a fresh start, and went to my GP, who referred me to a different hospital/clinic without issue. Personally, I would speak to my GP first. Feel free to PM me if I can help further. Out of interest, have you read "Sugar Surfing"? You sound like you are already doing it, but it may help further while you are trying to sort a pump out?

 

[Deleted Account]

I was provided with a pump despite low Hb1AC and no bad hypos.
The main motivation was quality of life as I am very active so need the variable basal to be able to maintain exercise.

Although I have found the pump excellent in this regard, it is not without effort: a pump requires much more commitment regarding carb counting and using temporary basal as well as the "joy" of changing the sets every 2 - 4 days. Due to this, I know the HCP in my area make an assessment about whether they think you are likely to be able to provide this level of management both physically and mentally.

It is great news that you have not omitted your insulin for two years and you have your diabulima under control. However, your history may result in some uncertainty amongst your diabetes team regarding your ability to provide the necessary commitment. Therefore, unfortunately, you may have to provide additional evidence. As you have a Libre, a download of your results may help.

However, this may be a double-edged sword: if you show great results on MDI, you may be questioned why you need a pump. Alas, this means you need to have a very strong case.

Good luck.

 

[Engineer88]

yes I've changed hospitals to get a pump. you can just tell your GP and they can sort it out, I moved from northamptonshire to Oxford which is very good hospital

 

[Djdiabetic]

I moved hospital from one that had a 14 month waiting list to another that had no waiting list. I was refered in the middle of april and I am starting live on insulin on Monday after a two three week period of having it home and playing around with the settings. I contacted my gp and they just moved everything over. hopefully it will be hassle free for yourself. I have had five eye operations and gasteoperisis symptoms that are being investigated just now. honestly reading your original post it sounds exactly like me same age same problems its scarey but as far as I have been told its not anything that cant be managed and sorted. I have also been told the pump will help 100% with these issues.

hope it goes well

 

[saruhbeau]

That's ridiculous. IMO anyone with gastroparesis should be encouraged to try a pump. The ability to do extended boluses and temporary basals can be a huge help with slow digestion and unexpected lows. For instance if there is too much insulin in your system at present, you can shut your basal off entirely for an hour or two, which can reduce the amount of hypos/treatments you need.

It sounds like you are already doing the "poor man's insulin pump" as well as "poor man's CGM". If you were not injecting 8 times a day you would have a higher HbA1c. You are definitely demonstrating the level of commitment required for a pump.



Do you take into account insulin-on-board? If not, this could be contributing to a cycle of highs and lows. Most insulin pumps can incorporate insulin-on-board for you.

That's ridiculous. IMO anyone with gastroparesis should be encouraged to try a pump. The ability to do extended boluses and temporary basals can be a huge help with slow digestion and unexpected lows. For instance if there is too much insulin in your system at present, you can shut your basal off entirely for an hour or two, which can reduce the amount of hypos/treatments you need.

It sounds like you are already doing the "poor man's insulin pump" as well as "poor man's CGM". If you were not injecting 8 times a day you would have a higher HbA1c. You are definitely demonstrating the level of commitment required for a pump.



Do you take into account insulin-on-board? If not, this could be contributing to a cycle of highs and lows. Most insulin pumps can incorporate insulin-on-board for you.

Thanks for your reply. I use mysugr app to take into account IOB, although when I'm busy don't always manage to use it. That is a good point though so will try to make sure I always use it.

 

[saruhbeau]

@Snapsy thanks for your reply I will keep you all posted.

Hi @saruhbeau I live in Surrey also and did not get on with my diabetes clinic (it was partly my fault as well though, to be honest) however, when I sorted myself out, I wanted a fresh start, and went to my GP, who referred me to a different hospital/clinic without issue. Personally, I would speak to my GP first. Feel free to PM me if I can help further. Out of interest, have you read "Sugar Surfing"? You sound like you are already doing it, but it may help further while you are trying to sort a pump out?

Thank you. I am currently at the Royal Surrey in Guildford, but want to change to UCL. Like I said though I will wait until the end of the month and see how my clinic appointment goes.

I have heard of sugar surfing but haven't read the book. I will look on Amazon now. Thanks for the recommendation.

Thanks @helensaramay. Like you say I expect I will need a very strong case to get funding. The main reason I want to try a pump is due to the gastroparesis. I am struggling to manage post meal due to slow digestion and really could do with multiwave bolusing. I hope I can get a consultant on my side.

Thanks for replying g @Engineer88

 

[himtoo]

I have not changed hospitals , but wanted to add I got my pump based on ABCD ( HbA1c was 5.9%) -- IE quality of life as I was having a fair few hypos and injecting 7-8 times per day to micromanage.

I genuinely wish you all the best in getting a pump. you are working so hard at this and deserve the help it can give.

all the best !
x

 

[tigger]

I tried changing hospital once. I was at uni at the time and fancied trying a different consultant. I think I called the hospital and asked how and they let me self refer. If that doesn't work your gp can definitely do it for you. Do you want to go to kings of ucl? They're 2 different hospitals.

 

[saruhbeau]

Thanks @himtoo! Your situation sounds very similar to mine although my hba1c is higher. I am expecting it to have dropped to 7.5ish hopefully though as I have been using the libre and also been having hypo's more. My estimated hba1c is 6.9 on the libre.

I am tired of all these injections and I am considering buying i-ports while I wait and see if I will get the funding. I would need my dsn to give the ok to the company though. I just don't feel 8+ daily injections is sustainable. But feel stuck because I am an all or nothing kind of person and the perfectionist in me can't see a slightly raised bg and not correct! So the cycle of lots of injections continues.

Sorry I am ranting here. I have had a bad day with hypo's and yoyoing and just wish I had better tools to deal with my diabetes (a pump!!)

 

[saruhbeau]

Thanks @tigger I thought they were different hospitals but a friend told me they were the same. Obviously they aren't... INPUT told me to ask for a referral to Kings College, Denmark Hill. Are you in that area?

 

[tigger]

Thanks @tigger I thought they were different hospitals but a friend told me they were the same. Obviously they aren't... INPUT told me to ask for a referral to Kings College, Denmark Hill. Are you in that area?

No i'm the other side of London but there are lots of good hospitals in London. Goodluck with finding a solution. In the meantime why not copy and paste your post describing what you do each day and email it to your current dsn and ask what her recommendation is to improve your controland why she won't recommend you gor a pump.

 

[saruhbeau]

Tht is a good idea thanks. I edit it a bit tomorrow so it makes sense as an email and will see what she says

 

[mentat]

But feel stuck because I am an all or nothing kind of person and the perfectionist in me can't see a slightly raised bg and not correct! So the cycle of lots of injections continues.

As someone with a similar personality, I need to point out a few things that you may already know, but they are worth reviewing from time to time anyway.

• Sometimes a high sugar comes down to normal range by itself, particularly if it has only been 1-2 hours since your last meal bolus. This is due to insulin acting more slowly than the food you have eaten.
• If this is likely to happen, it's probably best not to correct it, as that is likely to cause delayed hypos and add extra lingering insulin to your system which complicates later meal boluses.
  
• Unfortunately it can be hard to tell whether a post-meal spike will come down by itself or not, because our body doesn't always digest meals at the same rate, moreso with gastroparesis—and insulin does not always absorb at the same rate either.

Something I would suggest: a few times a week, resist the urge to correct for 4 hours after a random meal, and just see what happens. It's important to do this several times, because the same thing won't happen every time. A high sugar may often come down on its own, and if that's the case, it's an important fact to know.

"Sugar surfing" is without a doubt the right approach for some people. But sometimes, it just gives an illusion of control while actually making sugars more unpredictable and much more stressful, because of all the random extra insulin in one's system. I was in that situation and I would not admit it to myself for a very long time.

But my diabetes was also genuinely erratic and hard to control, which just compounded the problem. My health was a ruin. To be honest I'm surprised I managed to recover from that, but I did. I had to learn a lot of things the hard way. I fought hard to get myself better tools and they were very important. My most helpful tools were my CGM, ultra-fast insulin, and pump, in that order.
If you think I have anything to offer you I'd be happy to chat.

 

[ce81ar]

I have had my pump for just under 4 years and am at the Royal Surrey. I know most of the team up there and would be happy to chat and fill you in on how I qualified for my pump.

 

[CJOtter]

I am with Guy's hospital. They interpret (or at least when I went on the pump) problematic hypos as hypos that interfere with your life. Because of the nature of my job going hypo would be a big deal so I have a pump.

 

[donnellysdogs]

Hi

You should actually ask your GP for a referral to a different hospital.. do not ask your current hospital to refer you to another one. There is a difference...

1) if GP refers you (and you are entitled to go to your chosen hospital), then you will stay with your new hospital.

2) if your current hospital refer you on.. you will end up (or could!) being seen at new hospital for a short period and end up back at your old hospital...

Wherever your hospital is, it doesnt matter.
Your funding for pumps, cgm's is based upon where you are registered living.

With gastrparesis it is vital to have a pump. Your current DSN is thick and dangerously stupid.

Some hospitals can apply for exceptional funding.. and this may well get you a CGM funded.
With gastroparesis it is vital to see how your glucose reacts.. (sorry, dont know if you are still able to eat or with tube feeds)... whatever though, you need to also ask your new hospital for a pump and because of gastroparesis and other problems l-ask them to out you forward for exceptional funding request for a CGM.

I got a CGM funded using this scheme... You will have to submit evidence for this funding but PM me and I can send you a copy of my evidence...