Has anyone got consumables from NHS?

[CelalDari]

I’m starting university in a few months and have been diagnosed recently. I know getting a pump on the NHS is going to be very difficult and long.

I want to get a pump before I start university in September 2020 but the NHS is notoriously known for its waiting times and the painfully slow care they give (I’m 2.5 months into Type1 diabetes and no-one taught me anything— I taught everything about diabetes to myself including carb counting and adjusting insulin with no help whatsoever)

My parents can help me finance a pump since it’s a one off £3000 cost which is worth it considering it lasts 4-8 years. However I don’t want to constantly finance consumables like infusion sets.

Does anyone have the experience of self funding a pump and the NHS covering the cost of infusion sets and the other stuff necessary? I don’t want to get a pump then constantly have to fund infusion sets out of my pocket especially since I will be a student.

Of course I’m going to talk with my diabetes team since they would have to give me training on the pump but I just want to hear what some of you have experienced

 

[Rokaab]

I don't mean to be a downer but remember that the £3000 is not a one-off cost, its a cost roughly every 3 years as that's how long the warranty on pumps last - and do you really want to be using an out of warranty pump (that you depend on to live)?

I suspect (but don't know, so don;'t quote me), that even if you were to self fund you'd need your consultants approval so that your prescription could be changed to the vials necessary for the pump as I suspect your doctor wont do it without the consultants approval.

I do wish you luck as you're obviously trying to get things done but one thing I will say is 'don't try to run before you can walk'

 

[Juicyj]

@CelalDari Have you done any research into consumables at all yet ?

Consumables are expensive and I know from my experience with Medtronic that they only supply patients in the UK through the NHS, as you have not completed DAFNE I doubt they will fund you for this as you have only 2 months experience of living with type 1 and likely to be in the honeymoon phase, using a pump with so little experience is dangerous as you are dosing with a potentially lethal medication. From reading your posts you are trying to run before you can walk, you need to bed in with your type 1, keep doing what you are doing in terms of building your knowledge - speak to your DSN as I suggested before and find out what they can do for you as every trust/CCG will have a different set of criteria, a pump will only be an option to you with the support of your team.

 

[DCUKMod]

I’m starting university in a few months and have been diagnosed recently. I know getting a pump on the NHS is going to be very difficult and long.

I want to get a pump before I start university in September 2020 but the NHS is notoriously known for its waiting times and the painfully slow care they give (I’m 2.5 months into Type1 diabetes and no-one taught me anything— I taught everything about diabetes to myself including carb counting and adjusting insulin with no help whatsoever)

My parents can help me finance a pump since it’s a one off £3000 cost which is worth it considering it lasts 4-8 years. However I don’t want to constantly finance consumables like infusion sets.

Does anyone have the experience of self funding a pump and the NHS covering the cost of infusion sets and the other stuff necessary? I don’t want to get a pump then constantly have to fund infusion sets out of my pocket especially since I will be a student.

Of course I’m going to talk with my diabetes team since they would have to give me training on the pump but I just want to hear what some of you have experienced

CelalDari - As I understand things, the NHS is very reluctant to consider pumps for people living with diabetes, until they are a bit settled and have learned to manage their condition "old school" as that will always be the fall-back, should the clever tech fail - which it unfortunately can from time to time. (Young children are sometimes viewed differently - mainly due to micro-dosing requirements, and other factors.)

A pump doesn't "do it all", as lots of people think, and indeed from observation, I understand the first period of months, if not year of pumping is much harder than MDI. There's a huge amount of investment of time, effort and intellectual input to get things right. If this is done whilst, say, in honeymoon, it all just has to be repeated a few months later, then possibly again, and again.

I also don't believe the NHS will cut a deal with you for supplying consumables if you buy the kit (even if you find a way to do that). If they do not consider a pump is in your best interests (for now at least), why would they fund all that goes with it, to facilitate a course of action/treatment not in your best interests?

My suggestion is you are going to have to find some patience from somewhere and wear it with pride, until you have the foundations well established and any possible honeymoon period is in the past.

I'm sure that sounds harsh, but reality often is.

Good luck with it all.

 

[CelalDari]

I don't mean to be a downer but remember that the £3000 is not a one-off cost, its a cost roughly every 3 years as that's how long the warranty on pumps last - and do you really want to be using an out of warranty pump (that you depend on to live)?

I suspect (but don't know, so don;'t quote me), that even if you were to self fund you'd need your consultants approval so that your prescription could be changed to the vials necessary for the pump as I suspect your doctor wont do it without the consultants approval.

I do wish you luck as you're obviously trying to get things done but one thing I will say is 'don't try to run before you can walk'

I suppose I’m just bored so I’m spending the extra time I have concentrating on my health condition and I am extremely impatient about getting the relevant help from the NHS.

So far with very little help from my diabetes team I have managed to stay alive and haven’t had any hypos below 3.2 mmol/L so I think I’m doing well overall. And have recently done a BERTIE course which was my own initiative.

Thanks for your help anyways

 

[Rokaab]

I suppose I’m just bored so I’m spending the extra time I have concentrating on my health condition and I am extremely impatient about getting the relevant help from the NHS.

That is good that you're trying to learn as much as you can, butyou will just have to wait I'm afraid - but yes the tech is now much better but expensive so you may just have to use what most are using (ie, insulin pens) at least for the time being.

Heck, its taken me 40 years to get a flash glucose monitor and pump (ok I havent got the pump yet - I will as soon as medtronic are willing to send people out to the hospitals for the training, ie once lockdown has eased a bit more) - but then pumps and flash glucose monitoring didn't exist when I was diagnosed, in fact home blood glucose monitoring didn't even exist at that point, don't think the HbA1c existed or was widely used either.

 

[LooperCat]

I feel you on your frustration, but a pump isn’t just “fit and forget” - it often takes a lot more time and effort than injections. Sadly, type one diabetes will always require work, no matter how you manage it. I run a closed loop artificial pancreas system and I still have to think about things a lot. It becomes second nature, but we’ll always have to put work in to keep our levels healthy and consider everything we eat, drink and do.

 

[Chas C]

Hi @CelalDari - if you have done a Bertie course then your Bournemouth/Poole based ?.

I've been IDD for nearly 50 yrs and on injections for 42 yrs prior to pumping. Happy to pass on anything that might help you including how to get the best out of the hospital contacts.

As others have already said, and not wanting to put a downer on your great enthusiasm but you do need to get past the honeymoon phase before moving onto a pump. Don't let others put you off though as you do need some drive to make things happen

 

[Hopeful34]

Hi @CelalDari. When I couldn't get a pump on the NHS initially, I looked into buying one and the NHS paying for the consumables, but it was a definite no. Had to wait quite a long time before I got an NHS funded pump, as there was a long waiting list.

 

[Antje77]

Not an answer to your question (looks like the question has gotten a clear answer by now) but a look from another view point.
What is the reason you want a pump? You seem to be doing very well as it is, and while many diabetics love their pumps, there are a lot of us preferring MDI.
If you can manage your diabetes well on MDI it's a pretty good system. I wouldn't want to change to a pump if it was offered. I like seeing my insulin went in right with every injection without the risk of suddenly going high because of a faulty infusion site. I also like not having to tell the pump how many carbs I'm about to eat but simply dial up the amount of insulin I want and get it in. No fuss with buttons, injection sites, fluctuating ratio's etc. If I want a dual bolus I just inject a second time.

While pumps are loved by many who use them, MDI has some advantages as well.

 

[Charisma_1630]

I think it depends on which hospital you’re under. I jumped through hoops to try and get a pump for a couple of years from my local hospital. I got so frustrated that in the end I called my GP and requested a transfer to Addenbrookes. It’s about 3 times the distance but their supposed to be one of the best in diabetes care. On my very first appointment I was approved and bumped up the waiting list due to having to wait so long under my previous hospital. There is a charity called INPUT that has a list of “pro-pump” hospitals where you’re more likely to be approved.. although even if these circumstances you need to have a reason that meets the criteria. My reason was I live with just my young daughter and I suffered extreme hypo fear while she’s in my care. I’ve had my pump 4 years now and I love it i wouldn’t want to go back to injections. Don’t get me wrong it takes a lot of work but for me it’s much more convenient!

 

[Babyweed]

From experience I would wait awhile. I love my pump but in hindsight I went on it too early my sugars weren’t settled which makes it much harder using the pump

 

[CelalDari]

Not an answer to your question (looks like the question has gotten a clear answer by now) but a look from another view point.
What is the reason you want a pump? You seem to be doing very well as it is, and while many diabetics love their pumps, there are a lot of us preferring MDI.
If you can manage your diabetes well on MDI it's a pretty good system. I wouldn't want to change to a pump if it was offered. I like seeing my insulin went in right with every injection without the risk of suddenly going high because of a faulty infusion site. I also like not having to tell the pump how many carbs I'm about to eat but simply dial up the amount of insulin I want and get it in. No fuss with buttons, injection sites, fluctuating ratio's etc. If I want a dual bolus I just inject a second time.

While pumps are loved by many who use them, MDI has some advantages as well.

Why I need a pump:

- Different bolus settings- square bolus for slow vegetables, dual bolus for high fat meals, standard bolus for a normal balanced meal. This is much harder to replicate with MDI. I’m going to go university (studying biology) and can’t really invest a significant time for my diabetes with school work and a job piling on.

- The ability to suspend your basal if you’re having a hypo or near one so you don’t need to get out of laboratories, lecture halls or out of a staff meeting to correct it

-I will be able to give insulin in smaller increments. Injecting below 3 units doesn’t work for me, I don’t know if the pressure is not enough and the insulin is not going in or something but injecting 2 units doesn’t have any effect on my BG. So I’m forced to take at least 3 units or more

- Ability to prebolus. If there are 20 minutes to lunch time and I have a set lunch time then during a lecture I can prebolus discreetly then eat my meal 20 minutes later. You don’t need to reveal your thighs, abdomen, buttocks, arms or anywhere else to anyone in public. Almost like a phone in your pocket

- Greater flexibility in terms of eating. The fact that I have to inject every time I eat carbohydrates is discouraging me from eating. I was underweight when first diagnosed and right now I’m just about in the healthy BMI range with a BMI of 18.6 although my dietician said I’m not Asian so it should be at least 20 for me. I want to gain weight and pump will allow me to eat what I want whenever I want.

I can’t know for sure if I will like it if I haven’t tried it I’m afraid. I know the many complications that come with it but using a steel cannula instead of Teflon can avoid kinked cannulas and I know the struggles of how an incorrect delivery of insulin can spike your BG as you miss your basal.

 

[CelalDari]

Hi @CelalDari - if you have done a Bertie course then your Bournemouth/Poole based ?.

I've been IDD for nearly 50 yrs and on injections for 42 yrs prior to pumping. Happy to pass on anything that might help you including how to get the best out of the hospital contacts.

As others have already said, and not wanting to put a downer on your great enthusiasm but you do need to get past the honeymoon phase before moving onto a pump. Don't let others put you off though as you do need some drive to make things happen

I’m actually based in London. The BERTIE course is offered online to anyone regardless of location. I initially signed up for it because there are two courses for T1D: DAFNE and BERTIE, DAFNE is by invite only so I just spent my free time doing the BERTIE course.

Within the 2 months and a bit I had to teach everything myself like carb counting, bolus adjustment, basal adjustment and so forth. I am managing so well so my diabetes team are quite relaxed about me. I was probably carb counting 3 days after coming from the hospital and had stable BG around 5-7 mmol/L.

Someone suggested a charity called INPUT which gives a list of pro-pump hospitals. As I’m going to move away from London due to uni starting in September I may decide to change my hospital if it helps my prospects of getting a pump. I will have to search that up though

 

[Rokaab]

Why I need a pump:

Again, not meaning to be a downer, but 4 of those 5 reasons are reasons why 90% of T1's could benefit from a pump - yet only a small percentage can/will be funded by each hospital.
Yes most of us do have to juggle diabetes with busy jobs/lives etc - and yes many of us have been through school/uni having to deal with it (without the latest tech - the internet wasn't even around when I was at school), you will learn how to

The one about taking lesser amounts make just require a different needle size or something - or just the insulin, for instance I know several people have reported small amounts of fiasp acting like water rather than insulin, can't find it offhand at the mo.

 

[Chas C]

I’m actually based in London. The BERTIE course is offered online to anyone regardless of location. I initially signed up for it because there are two courses for T1D: DAFNE and BERTIE, DAFNE is by invite only so I just spent my free time doing the BERTIE course.

Ah yes forgot it was also online , BERTIE was developed by BDEC in Bournemouth, hence my question.

 

[Juicyj]

- Different bolus settings- square bolus for slow vegetables, dual bolus for high fat meals, standard bolus for a normal balanced meal. This is much harder to replicate with MDI. I’m going to go university (studying biology) and can’t really invest a significant time for my diabetes with school work and a job piling on.

This isn't so difficult to do on multiple injections, you still need to work out fat/protein content and base your bolus injection on that, then to take a further injection 2-3 hours later when the food is still being digested and you will need a CGM to monitor this too, otherwise keep testing. I appreciate Uni will keep you occupied but even using a pump requires effort the same as injections, there's no getting away from the effort required with t1 management regardless of what insulin delivery system you use.

- The ability to suspend your basal if you’re having a hypo or near one so you don’t need to get out of laboratories, lecture halls or out of a staff meeting to correct it

If you want to avoid a hypo then you will need to use a CGM with an alert to see what's happening to then program a temp basal into your pump, otherwise if you go hypo on a pump you will need to treat immediately with quick acting glucose.

I can’t know for sure if I will like it if I haven’t tried it I’m afraid. I know the many complications that come with it but using a steel cannula instead of Teflon can avoid kinked cannulas and I know the struggles of how an incorrect delivery of insulin can spike your BG as you miss your basal.

Only until you use a pump will you know what cannula set will suit you, each body is different so a teflon set might be fine for you, set issues are rare but that's why having a good knowledge of managing insulin to avoid hypers whilst using a pump is essential and being prepared to switch to injections if having an issue.

As i've said before it's great your doing research but until you've had the conversation with your team about their criteria then and only then will you know if they are prepared to fund you, and as you haven't attended DAFNE yet this is unlikely to happen anytime soon so getting to grips with MDI and managing as well as you have done already is vital to help keep you on course.

 

[LooperCat]

I appreciate Uni will keep you occupied but even using a pump requires effort the same as injections, there's no getting away from the effort required with t1 management regardless of what insulin delivery system you use.

I was a uni student (Biology) in the 1990s on injections and fingerpricks, and I’m a uni student now, with a pump, CGM and all the bells and whistles. Diabetes management takes just as much time now, if not more so - with the really fine-tuning available, getting it just right can be really hard. And if you’re a female of childbearing years, your hormonal cycle has a massive impact on your day to day management, what works perfectly one day can leave you with horrendous levels the next, as I’ve had today. And a pump can get in the way of some of the spontaneity of student life, always having something attached. Not trying to dampen your enthusiasm, although it probably reads like it. And while you want to deal with a hypo by just suspending the pump, it’s not always so simple. You’d still have to leave the lecture if the cannula kinked, or an occlusion alarm went off... I just chuck a couple of glucose tablets down my neck and crack on.