• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Transition to Insulin Pump Therapy - would welcome some advice

M

MamaLou

Member
Messages
13
Type of diabetes
Type 1
Hi, I'm new to the group so apologies if this question has been asked a million times before. I've been type 1 for 32 years and have recently asked my hospital consultant if I can switch to pump therapy. I was told I was eligible but since then the Diabetic Team at the hospital have been unhelpful to say the least. I was told that I had to do a DAFNE course before I could even be considered - for funding reasons no less. I said no and then asked them what they thought I've been doing for the last 32 years with a HbA1C of around 7.5? Didn't go down well. Anyway, I've since been told that I can only get the wired pump (Medtronic) and not the wireless one (Omnipod). I'm in Croydon, Surrey - anyone got any info on this? My lifestyle would be much better suited to a wireless pump and I've had history before with this team being, shall we say, less than accurate with information. I'm having to push them at every stage - it took 4 phone calls to get the literature on the pump and a promise for an appointment with the clinic Consultant (which I haven't received yet).

On a slightly different note, I would like to say that most of the diabetic care I've received over the last decade or so has been terrible. On my last appointment, (when I asked for the pump) I said that I was experiencing a lot of night time hypos. The advise by the Doctor - here's your next appointment, come back in 12 months. No advice, no help - nada. Hence why I want to go on the pump so I can really get my bloods stable and flatlining. Sorry, rant over......

any advice on getting onto the pump treatment and which pumps are on offer will be very gratefully received.
Thanks in advance...
 
Hi MamaLou

I'm sure that all clinics require you to go on a DAFNE course before starting to use a pump. If it needs to be done to start the pump process then presumably your request will go no further if you decline to do it. Even with 32 years of carbohydrate counting under your belt it will provide some new and more up to date information for you and may also give you the chance to meet other potential pump users.

Most pump clinics only deal with specific pump companies so your clinic is probably not trying to be awkward with you. I don't know where you stand on requesting a different make of pump to those supported by your clinic and how you would be able to access the necessary support. The clinic staff have expertise on the pumps that they offer and the company reps often come to the clinic to deal with any problems. My pump clinic only deals with Medtronic so I don't know about patch pumps. Hopefully someone who knows your area will know which makes are supported.

A pump is a great bit of kit but requires a lot of input to get the maximum benefit from it. 12 years in I've got infinitely better control and fewer severe hypos but it isn't a universal answer to blood sugar control. I hope this helps and you are able to get the funding request started.
 
I did the DAFNE course last year and even after 26 years of carb counting I found that I learned a lot from the course. I'd strongly recommend going along to do it, to anyone wanting a pump or not.
When on a pump things can go wrong very quickly. The hospital must insure that you are up to date with how to handle illness, high levels, ketones etc. Having your insulin sensitivity as well as insulin:carb ratio worked out as perfectly as possibly also helps with transition to the pump and getting the ratios on it correct. All this is covered on the course.

Pumps are work. If you aren't prepared to do a short course updating your skills, are you sure you are willing to put in the work a pump can take to get right?
 
Hi, thanks so much for replying. As for the DAFNE course - I was more or less told it was a requirement for their funding not for my benefit and also not all of us are able to take 5 days off work to do it. The doctor said he'd look into it but didn't get back to me, hence my calls etc. I was diagnosed at 11 so I'm really quite well versed in carb counting and insulin dosages. I'm sure there are a few nuggets which I'd come away with from the course but I really haven't got 5 days spare in my life to spend looking for them! I'm a full time working mum and wife so my time is very precious. I've read a few posts on the DAFNE course and the overall conclusion seems to be that its best for newly diagnosed or badly managed diabetics not old hands like myself.

I would really like to hear of anyone in the region who has recently moved onto a pump and can give advice on what's available. It certainly does seem to be a postcode lottery - much like the rest of the NHS.

I have recently spoken to a rep from one of the diabetic pump companies - a friend of a friend - she uses an Omnipod despite working for a rival manufacturer so that tells you quite a bit about how good it must be.

Again, anyone with any advice to share would be very much appreciated
Thanks
 
Hooked said:
I did the DAFNE course last year and even after 26 years of carb counting I found that I learned a lot from the course. I'd strongly recommend going along to do it, to anyone wanting a pump or not.
When on a pump things can go wrong very quickly. The hospital must insure that you are up to date with how to handle illness, high levels, ketones etc. Having your insulin sensitivity as well as insulin:carb ratio worked out as perfectly as possibly also helps with transition to the pump and getting the ratios on it correct. All this is covered on the course.

Pumps are work. If you aren't prepared to do a short course updating your skills, are you sure you are willing to put in the work a pump can take to get right?
Click to expand...

I'm more than willing to do any kind of course to facilitate the pump if I think there is benefit in doing it but not sure my employer feels the same!! Whether you are on a pump or on multiple daily injections you have to deal with the same scenarios you mention : illness, high levels etc. I'm possibly being very naive here but I don't see the difference
 
To use a pump in an ok manner it requires insulin to carb ratios being used and not counting the carb and using guess work and trial and error with the bolus. Look at the INPUT website and click on the carb counting online course BDEC. It explains ratios and correction doses so you can do DAFNE from yr home using BDEC carb counting.

Sent from the Diabetes Forum App
 
One of the major differences on a pump is you only use quick acting insulin so when things go wrong you certainly know about them and pretty quickly. DKA is more likely without the presence of long acting insulin. An up to date course coping with all the potential pitfalls of using a pump, sick day rules, temporary basal rates, accurate carb ratios, correction doses etc is vital for your safety.
 
iHs said:
To use a pump in an ok manner it requires insulin to carb ratios being used and not counting the carb and using guess work and trial and error with the bolus. Look at the INPUT website and click on the carb counting online course BDEC. It explains ratios and correction doses so you can do DAFNE from yr home using BDEC carb counting.

Sent from the Diabetes Forum App
Click to expand...

great - I'll check that out - thank you for the info
 
I'm pretty sure your time is no more precious than my time, or anyone else's time on here. It's simply up to you if you want to put the work and effort in so that you can get a pump. As I already said: I'd recommend the course to any T1 diabetic, wanting a pump or not. But what is taught on the course, the hospital staff NEED to know that the patient is clear on it before they can offer them a pump.

Edit to add: Your employer should not stand in the way of your medical care. I'm sure others can advise on these matters as I'm not well versed on discrimination in the work place. Personally, I used holiday time for the course I did.
 
Flowerpot said:
One of the major differences on a pump is you only use quick acting insulin so when things go wrong you certainly know about them and pretty quickly. DKA is more likely without the presence of long acting insulin. An up to date course coping with all the potential pitfalls of using a pump, sick day rules, temporary basal rates, accurate carb ratios, correction doses etc is vital for your safety.
Click to expand...

Thanks - I do appreciate the advice
 
Hooked said:
I'm pretty sure your time is no more precious than my time, or anyone else's time on here. It's simply up to you if you want to put the work and effort in so that you can get a pump. As I already said: I'd recommend the course to any T1 diabetic, wanting a pump or not. But what is taught on the course, the hospital staff NEED to know that the patient is clear on it before they can offer them a pump.

Edit to add: Your employer should not stand in the way of your medical care. I'm sure others can advise on these matters as I'm not well versed on discrimination in the work place. Personally, I used holiday time for the course I did.
Click to expand...

I didn't say my time was more precious than anyone else's just that I haven't got time to waste. My entire time dealing with the Diabetic Team has been abysmal and that's being kind about it. At every turn I've had wrong and dangerous information from them and I have no confidence in any of them. hence why I want to go on the pump so I can secure for myself better sugar levels and a better long term future. I have no doubt the course is of value but only if delivered correctly by competent people, otherwise it's a complete waste of time. I have managed my diabetes on my own apart from a 10 minute review every 12 months for years. I've already been told I'm eligible for the pump - that's not the question - the question I had was 'which' pump they are offering and if anyone could provide an insight into the differences between the two - medtronic and omnipod. I also can't use holiday time to take the course - I have a 5 year old son and the school holidays are hard enough and expensive enough to cover without losing another 5 days. My employers are not exactly sympathetic either and usually fire people at the drop of a hat - then go through a lengthy legal process with them. Not exactly great policy, but it's how it is. hence my predicament if I'm made to take a course from people with whom I have zero confidence.
 
MamaLou said:
I didn't say my time was more precious than anyone else's just that I haven't got time to waste. My entire time dealing with the Diabetic Team has been abysmal and that's being kind about it. At every turn I've had wrong and dangerous information from them and I have no confidence in any of them. hence why I want to go on the pump so I can secure for myself better sugar levels and a better long term future. I have no doubt the course is of value but only if delivered correctly by competent people, otherwise it's a complete waste of time. I have managed my diabetes on my own apart from a 10 minute review every 12 months for years. I've already been told I'm eligible for the pump - that's not the question - the question I had was 'which' pump they are offering and if anyone could provide an insight into the differences between the two - medtronic and omnipod. I also can't use holiday time to take the course - I have a 5 year old son and the school holidays are hard enough and expensive enough to cover without losing another 5 days. My employers are not exactly sympathetic either and usually fire people at the drop of a hat - then go through a lengthy legal process with them. Not exactly great policy, but it's how it is. hence my predicament if I'm made to take a course from people with whom I have zero confidence.
Click to expand...
Sounds like you are better off not bothering and sticking with the MDI as that's what you know.
 
Hooked said:
Sounds like you are better off not bothering and sticking with the MDI as that's what you know.
Click to expand...

Really!!!! Your post says your on the animas vibe pump. Why don't you tell me about that - as per my original request to find out about the different pumps - that would be more helpful
 
MamaLou said:
Really!!!! Your post says your on the animas vibe pump. Why don't you tell me about that - as per my original request to find out about the different pumps - that would be more helpful
Click to expand...
Sorry?
I was talking about the difficulties you have re home life v work with regards to the time off you'd have to take for the DAFNE course and pump appointments, about your bosses eagerness to fire people and about the diabetes team where you are being pretty hopeless.

I have no idea what pumps your local hospital would offer and wasn't aware you wanted to know more about mine?!
 
Hooked said:
Sorry?
I was talking about the difficulties you have re home life v work with regards to the time off you'd have to take for the DAFNE course and pump appointments, about your bosses eagerness to fire people and about the diabetes team where you are being pretty hopeless.

I have no idea what pumps your local hospital would offer and wasn't aware you wanted to know more about mine?!
Click to expand...
 
Hooked said:
Sorry?
I was talking about the difficulties you have re home life v work with regards to the time off you'd have to take for the DAFNE course and pump appointments, about your bosses eagerness to fire people and about the diabetes team where you are being pretty hopeless.

I have no idea what pumps your local hospital would offer and wasn't aware you wanted to know more about mine?!
Click to expand...


You make me laugh... Honestly you had me going there for a minute. Thought you were being serious then I realised that couldn't possibly be so! I originally wanted to know about the pumps but the thread got derailed onto the DAFNE issue. I just thought that you may have a little nugget to share on your pump - so I can be more informed. I'm sure you've got valuable information to share.
 
Hi mamalou

I have skimmed this thread and think I get the gist... You are meant to have access to any one of six devices currently approved by a NICE technology appraisal, but it is a postcode lottery... You don't have to do a Dafne-type course you just have to be able to illustrate you are able to carb count / adjust your doses.
Please visit the Input website for really great help and advice on all this stuff:
www.inputme.org.uk

I would also recommend Pumping Insulin by John Walsh, it's been more help than any carb counting /pump course I've taken (I've done 5) and will give you more of an idea of if pumping is for you.

Best of luck! ;)

Sent from the Diabetes Forum App
 
Thank you so much, yes this was exactly the information I was looking for. I looked at the BDEC course suggested in an earlier thread and in truth it was exactly the same info as I was given when I was first diagnosed back in 1981 -just different terminology. Thanks also for the link - I'll definitely check it out. I'll let you know how I get on. I'm about to call the Diabetic Team as they haven't sent me the appointment to meet the clinical lead for the pump therapy as promised.
 
Input are great, the website also outlines some of the responses (read: excuses!) you may get at clinic and the best ways to respond. Really worth a look before you have any meetings or anything.

Sent from the Diabetes Forum App
 
Back
Top