Can my diabetes nurse change my Insulin on request?

[AutumnDust]

Hello, iv been Type 1 Diabetic for 25 years.

Iv recently moved from the south east to the south. I incurred alot of messing about in the south east with my diabetes nurse, with trying to change my insulin. She wouldn't change it and referred me to a consultant in a hospital.
Iv recently moved to the south. These days everything is a post code lottery and rules appear to different wherever you move.

Now I've moved to the south. Can my diabetes nurse (when I eventually get an appointment, this seems to be an issue) Can they change my insulin on request, or will I be thrown through hoops again and have to see a consultant at a hospital?

I'm getting increasingly frustrated with the service Im receiving regarding my type 1 Diabetes.

I'm currently on Tresiba which I changed to last year because I had ongoing issues with Levimir.


My fast acting is Fiasp also changed from Rapid, again I had ongoing issues with that.


My HB1AC levels have dropped from 88 to 67. Still where they shouldn't be.
Also looking for advice on Tojeou or Lantus, to go on instead Tresiba, as they have discontinued the flexpens up until January 2024.

Iv tried for a few years to get an insulin pump, but had to put up with alot excuses from the healthcare professionals. My diabetic blood levels have never reached anything lower since being diagnosed. I'm finding this increasingly upsetting, as I'm just not being listened to at all.


Please help.

 

[EllieM]

Hi @AutumnDust and welcome to the forums. Hopefully some UK T1s will be along soon to answer your question as to whether your GP can change your insulin. (I suspect that may depend on the GP as some are a lot more competent with T1 than others. But think it's likely you'll want to see a consultant anyway if you want to eventually move to a pump).

Also looking for advice on Tojeou or Lantus, to go on instead Tresiba, as they have discontinued the flexpens up until January 2024.

I'm pretty familiar with lantus (it's the only long basal insulin available in New Zealand) but am I correct that toujeo is a stronger version of lantus? Are you needing quite a high dose of insulin?

I thought toujeo was pretty commonly used in the UK so am puzzled as to why it's no longer available for you. Does it have to be in a flexpen? And if it's not available then surely your GP will have to authorise a different insulin because they can't leave you without a basal insulin...

Hopefully you'll get some better answers from UK T1s when it's UK daytime. Until then, once more welcome.

ps and congrats on getting your levels down from 88 to 67, even if you'd rather be lower.

 

[becca59]

Welcome @AutumnDust I have never found my Gp to be able to change medication. However I am under a good hospital team and have had no trouble getting things altered. We have a DN team, I ring leave a message on an answer phone and they return my call in 24 hours. They write to my Gp to get the changes sorted. I believe all type 1s should have access to a consultant led team and I suspect that would be your best bet. There may be a good one in the south.
I don’t have a pump, but those that get one tend to use the nice guidelines and address each point to put in a strong case as to why they should have one.
Insulins-Toujeo is just the extended version of Lantus and I personally didn’t rate either. It had the same reactions as Lantus but lasted longer. Have been on Tresiba 4 years and love it. When you say you cannot get the flexpens ask for a Novopen Echo and cartridges. I have one for each insulin in different colours and oh joy they do half units if you request them. Have found that a boon for small corrections.
I take it you wear a CGM.

 

[CatsFive]

'the south' (of the UK) is a pretty large area and will have several consultant-lead teams and many GP practices and DNs. I suspect the answer depends on which bit of 'the south' you have moved to.

 

[In Response]

Welcome @AutumnDust
I am surprised you don't want to see a consultant at a diabetes clinic. I sometimes wonder if my GO can spell "Type 1". I recently gave into the constant badgering from my GP surgery for a review with their DSN. I have had Type 1 for 20 years. She asked if I have ever had a hypo!
Each year, I have an appointment at the local hospital in the endocrinology department with a consultant who was able to get me Libre 1 before it was common, get me a pump when I struggled with hypos when exercising, change my insulin to Fiasp because I needed something faster acting, arrange a DAFNE course to learn more about type 1 management, ...
The DSN at that clinic is responsive to emails. Some of my changes (e.g. a trial of Humalog) were just arranged via email.
Could the DSN at my GP surgery do these things? Definitely not the pump or the Libre at the time. I would be surprised if she knew about DAFNE She definitely does not have the knowledge to recommend different insulins or even respond if I requested one.
My advice would be to take the opportunity to talk to someone who specialises in Type 1 and visit a diabetes clinic
No one knows as much about our own diabetes as ourselves..But a diabetes consultant has spoken to more people with Type 1 and can offer great support.

 

[AutumnDust]

Hi @AutumnDust and welcome to the forums. Hopefully some UK T1s will be along soon to answer your question as to whether your GP can change your insulin. (I suspect that may depend on the GP as some are a lot more competent with T1 than others. But think it's likely you'll want to see a consultant anyway if you want to eventually move to a pump).


I'm pretty familiar with lantus (it's the only long basal insulin available in New Zealand) but am I correct that toujeo is a stronger version of lantus? Are you needing quite a high dose of insulin?

I thought toujeo was pretty commonly used in the UK so am puzzled as to why it's no longer available for you. Does it have to be in a flexpen? And if it's not available then surely your GP will have to authorise a different insulin because they can't leave you without a basal insulin...

Hopefully you'll get some better answers from UK T1s when it's UK daytime. Until then, once more welcome.

ps and congrats on getting your levels down from 88 to 67, even if you'd rather be lower.

It's Tresiba that has been discontinued in UK, until 2024. Not Toujeo. Toujeo is one I'm looking to move onto, as the other is no longer available and I just need better control, where I'm not feeling rubbish all the time. I'm currently using flexpens, with screw on needle heads. I'm on a very high dose of Tresiba currently. The diabetic nurse started me off on 32 units, iv managed to bring it down to around 22 units every 24 hours. I'm taking Fiasp up to 4 - 6 times a day. My diet is pretty good, I don't eat sugary items, only when I hypo, I tend to rely on Glucose tablets for that. Thank you for your response, it's been helpful. The fight continues. GP's here, tend to use Type 2 talk or just talk to you like you don't what your doing. I find this very frustrating and have made countless complaints in the past. I feel very uncomfortable talking to the medical team about things anymore.

 

[AutumnDust]

'the south' (of the UK) is a pretty large area and will have several consultant-lead teams and many GP practices and DNs. I suspect the answer depends on which bit of 'the south' you have moved to.

I've recently moved to Fareham, I'm not familiar with this place at all, cause I moved here with my partner. I'm hoping I can find someone that has an understanding and won't talk to me like rubbish. In the south east , I was constantly spoken to like a type 2 diabetic, or just told I wasn't able to get certain things. I funded my CGM for a year before I found myself begging for them to just please pop it on to my prescription. I waited months to get help to change my insulin I had before, because I felt my sugars were not stable at all.. and I was absolutely correct on that looking at my blood levels. The consultant I saw there, left me feeling bitter and very upset after appointments, because she kept talking to me like I had been newly diagnosed even though Iv had this condition for 25 years and that I didn't know what I was doing. Iv lost alot of faith with medical teams regarding Type 1, which is why I just want to keep it simple and not see a consultant, in fear the same treatment will happen again.

 

[AutumnDust]

Apologies, there are so many people to reply too. Please read some of my replys that I have posted. I'v lost faith in medical teams, cause they all appear to be all doing the same thing, treatment like a type 2, not letting us have access to certain things, talking to you like your new to the condition. I was booked an appointment after moving down here to have my bloods checked along with the usual bloods. Then I was booked a "telephone appointment" with the diabetic nurse after I queried a few things like more hypos during the night, and extreme highs during the day, since starting on Fiasp and Tresiba. That appointment never happened. I tried booking another one only to be told it will be another telephone appointment.. that came and went, no one called me. Back in the south east, I was told to go to different areas such as Canterbury hospital, Ashford hospital, etc.. different places, just to be seen by consultants who appear to not really care. I'm getting really irratated by the whole thing. Self management has been really tough, especially with my job which is physically demanding, but my sugars still remain high? I'm at a loss here. It's very upsetting.

 

[In Response]

It's Tresiba that has been discontinued in UK

I thought there was only a problem with pre-filled Tresiba pens but the cartridges are available for reusable pens. As these are far more robust, the cartridges take up less space in your fridge, they create less waste, they come in half units and they have a reminder on the top, they are better anyway. I don’t understand why anyone would want single use pens unless you have dexterity problems.

 

[Tolkatim]

Hello, iv been Type 1 Diabetic for 25 years.

Iv recently moved from the south east to the south. I incurred alot of messing about in the south east with my diabetes nurse, with trying to change my insulin. She wouldn't change it and referred me to a consultant in a hospital.
Iv recently moved to the south. These days everything is a post code lottery and rules appear to different wherever you move.

Now I've moved to the south. Can my diabetes nurse (when I eventually get an appointment, this seems to be an issue) Can they change my insulin on request, or will I be thrown through hoops again and have to see a consultant at a hospital?

I'm getting increasingly frustrated with the service Im receiving regarding my type 1 Diabetes.

I'm currently on Tresiba which I changed to last year because I had ongoing issues with Levimir.


My fast acting is Fiasp also changed from Rapid, again I had ongoing issues with that.


My HB1AC levels have dropped from 88 to 67. Still where they shouldn't be.
Also looking for advice on Tojeou or Lantus, to go on instead Tresiba, as they have discontinued the flexpens up until January 2024.

Iv tried for a few years to get an insulin pump, but had to put up with alot excuses from the healthcare professionals. My diabetic blood levels have never reached anything lower since being diagnosed. I'm finding this increasingly upsetting, as I'm just not being listened to at all.


Please help.

Tresiba pre-filled pens are in short supply as my GP has just advised me. They have put me on Tresiba 3ml cartridges available 5 at a time. You may have to get the cartridge pen to go with it as I had too.

 

[alanned]

Hello, I've been T1 since 1958.
Your case sounds somewhat familiar. I find that the situation regarding getting access to help changes at the same hospital group with time and in different hospital groups can be very different from the one next-door! Truth is some doctors tend to play it strictly by the book while others realise that you know what you are experiencing. The introduction of DSN was a great step forward and I used to be able to ring them direct. They tend to be close to the patient and have seen lots of "situations" before. If you can, I would try and find a DSN team or member that you can converse with. Even if they don't have the power to change your medication they will have direct access to those who can. Good luck.

 

[micksmixxx]

Hi, AutumnDust. Welcome.

In my 43 years as a Type 1 diabetic my doctor's surgery has NEVER changed which type of insulin that I use. They also seemed to be unaware of how to change insulin doses, always referring me to my local hospital. (It tickled me when I was asked to "see our new diabetes specialist nurse" and I ended up having to show her how to use a blood glucose meter. That didn't exactly inspire me with any degree of confidence. Admittedly, there have been many different brands and/or models of blood glucose meters over the years, but they're pretty much of a muchness. i.e. there's no great difference in their functionality.)

Thankfully, the diabetes support team that I have is phenomenal. My advice, if you are able, is to utilise the service of your local hospital as it WILL be much easier for you to go through the process of being accepted for pump (Continuous Insulin Infusion System) use.

My present endocrinologist is a well-educated person and was first introduced to pump technology when he was giving a speech in the United States. His interest was sparked when he walked around a display area and one particular brand of pump was being demonstrated. He asked questions such as how do they work? What's the cost of them? Whether recipients have received benefit from using them?, etc. etc.

As it happens, the person demonstrating the pump happened to be a Type 1 diabetic, and she explained that she felt it was incredibly beneficial in her diabetes care. Apparently, my endo and the demonstrator got into quite some discussion, with my endo indicating that he'd got a patient that MAY well benefit from using a pump. (I was the person that he had in mind. He had some concern with how regularly I was ending up in hospital as it seemed that I was spending as much time in hospital as I was at home.)

My endo put his idea to me at a meeting that we had and asked if I'd be willing to 'give it a try'. As it happens, I was the first person in my local area to have been chosen to 'try' pump technology, and I've had nothing but good things to say about pump technology. I was even asked to speak with a former local MP, who agreed that he would raise the matter of pump technology in the House of Commons, indicating that he'd spoken with a Type 1 diabetic who'd found it most beneficial. (My endo also indicated the matter of 'cost savings' to the NHS, which came about due to the amount of time I was spending in hospital.)

Thankfully, the 'problem' with hospital admissions has, in my humble opinion, improved tremendously. I've only been admitted to hospital a handful of times over recent years.

To be chosen to try pump technology you now have to undertake a week-long training session on a course that's called DAfNE (Dose Adjustment for Normal Eating). This might sound like a 'big thing' to you, but believe me, it's a very good course to attend. You are taught on how to change settings on your pump; how and why to change insulin doses ... pumps, by the way aren't normally used with a continuous basal amount as you would be getting with a once or twice daily long-acting insulin. I currently have 6 changes of my bolus settings applied on my pump, and if I need to change any of these I simply inform my diabetes Support Team what I've done and why.

To be accepted for pump use your endocrinologist/diabetes doctor would need to submit an application as these things are NOT cheap ... plus there's the added costs involved as you'd need to have insulin infusion sets (the cannula which is inserted into your body and the reservoirs that need to be replaced when insulin is running low) prescribed. Your endocrinologist MIGHT also determine that you would benefit from CGM (Continuous Glucose Monitoring) where you could keep track of what your blood glucose (sugar) level is doing at any given point in time. (This COULD be a short-term need, as decided by your endo/diabetes doctor, or it COULD be seen as a long-term investment in your health.)

My Diabetes Specialist Nurses are able to change my insulin doses whenever they see fit. To change types of insulin they would NORMALLY speak with the endocrinologist first, to justify their thinking based on their knowledge of why it might be more beneficial for me. Hopefully, you'll have a Diabetes Support Team that is also more open to discussing YOUR needs, rather than 'going by' what their hospital says is relevant.

You MIGHT like to take a look at NICE (National Institute for Health and Care Excellence) guidelines on the use of pumps: https://www.nice.org.uk/Guidance/TA151

Be aware that the NICE Guidelines is a hefty document that spans of many pages and will take a while to read and assimilate, but it's well-worth taking a look at. It gives you some idea of what your endocrinologist/diabetes doctor would need to refer to in order to formulate an application to get a pump on your behalf.

Do, please, let us know how things work out for you.

 

[Hopeful34]

My Diabetes Specialist Nurses are able to change my insulin doses whenever they see fit.

Surely you do that yourself based on your blood sugar and basal testing etc.

 

[Mike_T]

Hello, iv been Type 1 Diabetic for 25 years.

Iv recently moved from the south east to the south. I incurred alot of messing about in the south east with my diabetes nurse, with trying to change my insulin. She wouldn't change it and referred me to a consultant in a hospital.
Iv recently moved to the south. These days everything is a post code lottery and rules appear to different wherever you move.

Now I've moved to the south. Can my diabetes nurse (when I eventually get an appointment, this seems to be an issue) Can they change my insulin on request, or will I be thrown through hoops again and have to see a consultant at a hospital?

I'm getting increasingly frustrated with the service Im receiving regarding my type 1 Diabetes.

I'm currently on Tresiba which I changed to last year because I had ongoing issues with Levimir.


My fast acting is Fiasp also changed from Rapid, again I had ongoing issues with that.


My HB1AC levels have dropped from 88 to 67. Still where they shouldn't be.
Also looking for advice on Tojeou or Lantus, to go on instead Tresiba, as they have discontinued the flexpens up until January 2024.

Iv tried for a few years to get an insulin pump, but had to put up with alot excuses from the healthcare professionals. My diabetic blood levels have never reached anything lower since being diagnosed. I'm finding this increasingly upsetting, as I'm just not being listened to at all.


Please help.

Earlier this year I had diabetic review by the nurse at my surgery. I don’t normally have this as I would normally attend the clinic at my local hospital but as I got to see a nurse face to face itook the opportunity. There really wasn’t much she could help me with but I asked if I could get onto a DAFNE course. I went on one over 10 years ago but felt that I could do with some help and she kindly got me onto a course in May at a neighbouring hospital. The course is about Dose Adjustment Fir Normal Eating hence the name DAFNE. Over 5 weeks of half day sessions it covered everything about our condition including monitoring glucose levels and treatment.
It was amazing, I’m using Libre but they said would we like to try Dexcom One or vice versa if you were using Dexcom and wanted to try Libre2. I asked about Dexcom and was given a starter set to try. We talked about insulin and the different types of quick acting and long acting. I said that novo rapid was taking too long to act so I was given a pack of fiasp to try. At the end of the course I decided I would like to change to FIASP and Dexcom. They wrote a letter to my surgery getting them to change my prescription which went through with no problem. I can only recommend you try the same approach.

 

[JoolsSugar]

Welcome @AutumnDust I have never found my Gp to be able to change medication. However I am under a good hospital team and have had no trouble getting things altered. We have a DN team, I ring leave a message on an answer phone and they return my call in 24 hours. They write to my Gp to get the changes sorted. I believe all type 1s should have access to a consultant led team and I suspect that would be your best bet. There may be a good one in the south.
I don’t have a pump, but those that get one tend to use the nice guidelines and address each point to put in a strong case as to why they should have one.
Insulins-Toujeo is just the extended version of Lantus and I personally didn’t rate either. It had the same reactions as Lantus but lasted longer. Have been on Tresiba 4 years and love it. When you say you cannot get the flexpens ask for a Novopen Echo and cartridges. I have one for each insulin in different colours and oh joy they do half units if you request them. Have found that a boon for small corrections.
I take it you wear a CGM.

What's a DN team? Thanks