Is anyone else really struggling to get a Libre? T1

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francescakate

francescakate

Active Member
Relationship to Diabetes
Type 1
Hi everyone, apologies in advance for a bit of a rant incoming.

I was diagnosed in December with T1 diabetes after waiting 2 months for blood test results. The hospital consultant rang me in January, said 'yup you've got T1 speak to you again in a few months when you're out of your honeymoon period.' I've said before on here that nobody explained what T1 was or anything, I've had to research this all by myself. I had to move hospital because I was originally put under one too far away from me, and I hoped my new consultant would be a bit more helpful but nope.

It's now 3-4 months later and I've had one appointment, with the dietitian in person. No nurse appointments, no consultant appointments, not even telephone appointments. I'm coming out of the honeymoon phase now and I'm on slow acting insulin, fast acting insulin and metformin. I'm trying to work out my insulin ratios but my levels are absolutely all over the place. The only help I'm getting is that the dietitian took pity on me and has been ringing me every few weeks, taking my numbers, speaking with a nurse and then calling back to tell me to adjust my insulin.

I asked her a few weeks ago about the Libre because I struggle with anxiety and I'm basically just not leaving the house. I don't feel like I can predict my levels because sometimes I'm too high, other times I'm too low. Yesterday I went to 3.0 after my evening meal and didn't realise until I felt like I couldn't speak. She said she'd speak with the doctor and call me back but never did, then I got a letter through saying I had an appointment with the consultant over the phone today. The appointment time comes, my phone rings and it's the dietitian. The appointment letter was wrong and my consultant has no interest in seeing me. I burst out crying out of frustration and the fact I've been waiting to speak to the consultant for so long and I thought today was it. She said when she'd spoken to him last, he didn't think I really needed a Libre any time soon and it could wait til mid-May when he saw me - and that's just for me to argue my point, not that he'd agree to me having one.

I explained to her what had been happening with my anxiety and that a nurse I spoke with the other week (I had to ring to get insulin advice) said I should definitely be eligible. I also said the NICE guidelines were changing in April so I thought I was eligible for one regardless of whether the consultant thought so. She just said she'd speak with him and see if he'd change his mind and then call me next week.

I just feel so lost with the way my diagnosis has been handled. The fact that my dietitian, as lovely as she is, is the only one keeping in contact with me and I've just been left to adjust my insulin doses alone with no advice. I'm upset that the doctor, who has never spoken with me, said I wasn't in need when he has no idea about my situation. I almost want to discharge myself from their care and just handle it alone because that's what I've been doing since October last year.
 
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That sounds like one heck of a lot to deal with on top of the diagnosis so it's no wonder you're feeling like you are.

Have you called the DUK helpine to see what advice and assistance they can offer to get the care you deserve?
 
francescakate said:
Hi everyone, apologies in advance for a bit of a rant incoming.

I was diagnosed in December with T1 diabetes after waiting 2 months for blood test results. The hospital consultant rang me in January, said 'yup you've got T1 speak to you again in a few months when you're out of your honeymoon period.' I've said before on here that nobody explained what T1 was or anything, I've had to research this all by myself. I had to move hospital because I was originally put under one too far away from me, and I hoped my new consultant would be a bit more helpful but nope.

It's now 3-4 months later and I've had one appointment, with the dietitian in person. No nurse appointments, no consultant appointments, not even telephone appointments. I'm coming out of the honeymoon phase now and I'm on slow acting insulin, fast acting insulin and metformin. I'm trying to work out my insulin ratios but my levels are absolutely all over the place. The only help I'm getting is that the dietitian took pity on me and has been ringing me every few weeks, taking my numbers, speaking with a nurse and then calling back to tell me to adjust my insulin.

I asked her a few weeks ago about the Libre because I struggle with anxiety and I'm basically just not leaving the house. I don't feel like I can predict my levels because sometimes I'm too high, other times I'm too low. Yesterday I went to 3.0 after my evening meal and didn't realise until I felt like I couldn't speak. She said she'd speak with the doctor and call me back but never did, then I got a letter through saying I had an appointment with the consultant over the phone today. The appointment time comes, my phone rings and it's the dietitian. The appointment letter was wrong and my consultant has no interest in seeing me. I burst out crying out of frustration and the fact I've been waiting to speak to the consultant for so long and I thought today was it. She said when she'd spoken to him last, he didn't think I really needed a Libre any time soon and it could wait til mid-May when he saw me.

I explained to her what had been happening with my anxiety and that a nurse I spoke with the other week (I had to ring to get insulin advice) said I should definitely be eligible. I also said the NICE guidelines were changing in April so I thought I was eligible for one regardless of whether the consultant thought so. She just said she'd speak with him and see if he'd change his mind and then call me next week.

I just feel so lost with the way my diagnosis has been handled. The fact that my dietitian, as lovely as she is, is the only one keeping in contact with me and I've just been left to adjust my insulin doses alone with no advice. I'm upset that the doctor, who has never spoken with me, said I wasn't in need when he has no idea about my situation. I almost want to discharge myself from their care and just handle it alone because that's what I've been doing since October last year.
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Hi @francescakate
Very sorry to read about the struggles you are having and the lack of support.
Whilst a Libre may be beneficial for you, I believe you need that initial meeting with the consultant and would be most annoyed that this is so far off. I believe, today, only a consultant can approve a Libre and, until he sees you, he has no clue whether you will be able to use the Libre to get the value out of it that NHS pay.
The guidelines are expected to change next month but bear in mind these are "guidelines" which are likely to be interpreted differently by different CCGs especially as they are unlikely to suddenly get new budget to fund these.

In your position, I would be pushed to see that consultant and then pushing for the Libre no the other way round.
 
ColinUK said:
That sounds like one heck of a lot to deal with on top of the diagnosis so it's no wonder you're feeling like you are.

Have you called the DUK helpine to see what advice and assistance they can offer to get the care you deserve?
Click to expand...
Thank you, that might be my next step. A nurse I spoke with last week was really surprised that I'm basically not on anyones radar but nothing changed so I don't know if I'm going to get anywhere doing what I'm doing now.
 
helli said:
Hi @francescakate
Very sorry to read about the struggles you are having and the lack of support.
Whilst a Libre may be beneficial for you, I believe you need that initial meeting with the consultant and would be most annoyed that this is so far off. I believe, today, only a consultant can approve a Libre and, until he sees you, he has no clue whether you will be able to use the Libre to get the value out of it that NHS pay.
The guidelines are expected to change next month but bear in mind these are "guidelines" which are likely to be interpreted differently by different CCGs especially as they are unlikely to suddenly get new budget to fund these.

In your position, I would be pushed to see that consultant and then pushing for the Libre no the other way round.
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Thank you. That's all I want, to be able to speak with the consultant to discuss the pros and cons of it. I had that discussion with a nurse last week and she said she definitely thought I needed one and that she'd leave a note for the consultant calling me today, but it turns out it was my dietitian not consultant. She's trying to get me an earlier appointment with him but by the sounds of it, he's not interested in seeing me yet. I've not had any appointments with consultants other than ten minutes at New Years to tell me I've got type 1 and that they'd see me soon.
 
francescakate said:
Thank you for that link. I knew the guidelines were changing but I've basically been told the consultant isn't interested in speaking to me about it so I don't know how to convince him.
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Send him this link. You need to get some decent advice and help from those paid to help you. Many of us came onto this forum for the same reasons you have given. The consultant is saying that your diabetes is unstable at the moment and needs to see you when it's settled down, but I'd imagine you would like some help dealing with things as they are. Keep chipping away and make the most of this forum! 🙂
 
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Just want to say that many of us self funded before we got Libre on prescription and there are some Type 1s still self funding. I know it isn't cheap and I am low income but I used birthday money to help fund it. Prior to that I used to test lots to give me more confidence and information about what my levels were doing. I went through a phase of testing 10-16 times a day to understand what was going on and how best to manage my levels and I learned a huge amount from that alone. Libre is something I am incredibly grateful for but I don't see it as a right and I know that diabetes is manageable without it. In fact in the early days of using it I needed a break from it occasionally because it was sometimes overwhelming me with data.

I appreciate that you have not received the support that you should have and I am sorry for that. Unfortunately diabetes clinic staff have been really stretched to the limit by the pandemic due to the link/interaction between Covid and diabetes and from speaking to my own consultant, I know that they are aware that they are falling short of the service they would like to provide for some people. I know that doesn't help you, but there is a lot you can do yourself to increase your knowledge and understanding. Abbott are doing a free 14 day trial of Libre which you might qualify for. It would also be a good idea to enroll in the Libre Academy on the Abbott website and work your way through the modules, so that you can show the consultant when you see/speak to him/her that you are proactively helping yourself. Keep good notes/food/BG diary. Do the online BERTIE course if you haven't already. Come onto the forum and ask questions or just learn from others.
There are thousands of people who have managed their diabetes over decades without Libre and coped very well and some didn't even have BG meters for some of that time! That said, Libre is a game changer for many people, but there are also some people who find it knocks their confidence because it isn't as reliable as we would all like it to be and it isn't as accurate as BG meters, so you need to understand how to interpret the results it gives you and when to double check it etc.

I hope you are able to get an appointment with the consultant soon, but use the interim to become more knowledgeable, perhaps trial the Libre and/or if necessary, do lots more testing if that is stopping you from getting on with your life. If you are testing more that 8 times a day then Libre becomes cost effective. Don't feel restricted to testing just the 5 "advised" times a day. Test as many times as you need to, to give you the confidence to get on with your life.
 
francescakate said:
Hi everyone, apologies in advance for a bit of a rant incoming.

I was diagnosed in December with T1 diabetes after waiting 2 months for blood test results. The hospital consultant rang me in January, said 'yup you've got T1 speak to you again in a few months when you're out of your honeymoon period.' I've said before on here that nobody explained what T1 was or anything, I've had to research this all by myself. I had to move hospital because I was originally put under one too far away from me, and I hoped my new consultant would be a bit more helpful but nope.

It's now 3-4 months later and I've had one appointment, with the dietitian in person. No nurse appointments, no consultant appointments, not even telephone appointments.
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Hello,
I'm fairly new to all of this also, but 2 yrs on and I've come to realise that to get support you have to be politely forceful. My GP has been less than helpful, but in practice I only need a GP to do referrals to Consultants and then to write the prescriptions!

In my opinion, the person you need help from before a Consultant is a Diabetes Specialist Nurse (DSN). This is not a nurse in your GP's practice, who rarely sees T1s and usually will have very little experience of insulin dependent diabetics. A DSN normally works from a Hospital based Diabetes Clinic. If you can get details, phone and leave a message saying you are a new T1 needing Urgent assistance and could a DSN contact you. If you don't have contact details for a DSN, try asking the dietician (who may work from the same Specialist Clinic). Otherwise speak to your GP and insist you are given an Urgent referral to a DSN because you are really struggling.

Once you can get a DSN helping you they should be able to help you interpret your BG readings and generally improve your management. I emailed phots of my log book to my DSN for about 5 months and she guided me, by email and the odd phone call. They can also recommend to the Consultant that you need Libre. I never met a Consultant, but was put on the list and got my Libre 6 weeks later.

The Consultant has the "higher" overview of your condition and my experience was that they authorise the big adjustments, but the DSN instructs the GP to change the type of insulin, eg my basal, and got me a better test meter as well as changing me onto the half unit NovoEcho pen.


francescakate said:
I'm coming out of the honeymoon phase now and I'm on slow acting insulin, fast acting insulin and metformin. I'm trying to work out my insulin ratios but my levels are absolutely all over the place. The only help I'm getting is that the dietitian took pity on me and has been ringing me every few weeks, taking my numbers, speaking with a nurse and then calling back to tell me to adjust my insulin.
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Which is what my DSN did directly for me. Are you carb counting yet?
francescakate said:
I asked her a few weeks ago about the Libre because I struggle with anxiety and I'm basically just not leaving the house. I don't feel like I can predict my levels because sometimes I'm too high, other times I'm too low.
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I can totally understand this. I felt trapped at home because whenever I ventured out, I crashed. In hindsight, I now realise I was totally inactive (also recovering from major surgery, then chemotherapy) and each trip away from home meant I was active and that activity was significantly affecting my BG. I didn't understand this, never mind knowing how to prevent it from happening. Steady discussions with my DSN helped steady me.
francescakate said:
Yesterday I went to 3.0 after my evening meal and didn't realise until I felt like I couldn't speak. She said she'd speak with the doctor and call me back but never did, then I got a letter through saying I had an appointment with the consultant over the phone today. The appointment time comes, my phone rings and it's the dietitian. The appointment letter was wrong and my consultant has no interest in seeing me. I burst out crying out of frustration and the fact I've been waiting to speak to the consultant for so long and I thought today was it. She said when she'd spoken to him last, he didn't think I really needed a Libre any time soon and it could wait til mid-May when he saw me - and that's just for me to argue my point, not that he'd agree to me having one.
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I sympathise, yet there is a certain amount of benefit from this perspective of holding off. I spent 12 months on Multiple Daily Injections (MDI) and learnt enough to feel confident about managing by finger pricking and MDI. Now, when Libre let's me down, it's annoying but manageable. And for all its huge benefits, Libre does have limitations.

But, you need the Consultant to confirm a recommendation for Libre and THEN there is a certain amount of luck whether your GP has the financial headroom from the CCG to allow it to be prescribed. That funding decision is nothing to do with the Consultant, unless there is further reason for the Consultant to add weight to an argument for you having a funding priority.
francescakate said:
I explained to her what had been happening with my anxiety and that a nurse I spoke with the other week (I had to ring to get insulin advice) said I should definitely be eligible. I also said the NICE guidelines were changing in April so I thought I was eligible for one regardless of whether the consultant thought so. She just said she'd speak with him and see if he'd change his mind and then call me next week.
Click to expand...
The NICE guidelines are a bit of a distraction here. All T1s have been eligible for over 12 months, but not insulin dependent T2s. The issue has been whether the CCGs can afford to provide and that will become a bigger problem once the future NICE guidelines are formally published

Nevertheless, once you get Libre it will greatly help you, but that brings me back to the question of carb counting. Without that Libre isn't so much help.
francescakate said:
I just feel so lost with the way my diagnosis has been handled. The fact that my dietitian, as lovely as she is, is the only one keeping in contact with me and I've just been left to adjust my insulin doses alone with no advice. I'm upset that the doctor, who has never spoken with me, said I wasn't in need when he has no idea about my situation. I almost want to discharge myself from their care and just handle it alone because that's what I've been doing since October last year.
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I understand you wanting to discharge yourself from your GP. But you need a GP to initiate the prescriptions. I contemplated changing mine, who I felt had allowed COVID to overtake the common sense I'd previously associated with the Practice. But I decided to politely, but strongly, make the Practice and my named GP respond to my requirements. I've sent 3 polite but robust emails, quoting the necessary guideline and got the result I needed. This shouldn't be necessary and I said so in my 3rd email, but sadly it was; and more sense has been restored. I still am resentful that I'd had to do this and no longer respect or trust the Practice, which will take time to get corrected.

Good luck.
 
Proud to be erratic said:
All T1s have been eligible for over 12 months, but not insulin dependent T2s
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Not quite, there were still criteria that had to be met, like needing to test more than 8 times a day, or having unmanageable blood glucose or severe hypos. Only a small proportion of Type 1s managed to get their hands on one.
 
Robin said:
Only a small proportion of Type 1s managed to get their hands on one.
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I recently read that 50% of T1s have Libre now. But agree with you that it is not a given - there are still criteria to "qualify" which are interpreted differently across the CCGs

And I think this only covers England as the other nations have different guidelines.
 
Robin said:
Not quite, there were still criteria that had to be met, like needing to test more than 8 times a day, or having unmanageable blood glucose or severe hypos. Only a small proportion of Type 1s managed to get their hands on one.
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The target seems to have been 20-25% (and that's what the funding was for), but the current figure is 55% or so, I think. So not everyone by a long way but not a small proportion either.
Proud to be erratic said:
In my opinion, the person you need help from before a Consultant is a Diabetes Specialist Nurse (DSN).
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I agree, they're most likely the best people to get in contact with. It's probably the consultant who needs to sign off, but persuading your DSN ought to be fine (they can talk with the consultant if needed).
 
helli said:
I recently read that 50% of T1s have Libre now. But agree with you that it is not a given - there are still criteria to "qualify" which are interpreted differently across the CCGs

And I think this only covers England as the other nations have different guidelines.
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I was taking the comment that they’d been eligible for over a year. I think a year ago, the proportion was more like 20%. It has certainly seemed from reports on the forum, that encouragingly, more and more people are getting their hands on one.
 
Thank you @Robin , @helli and @Bruce Stephens for tidying up my statement and accordingly managing the possible expectations of @francescakate .

I think how many T1s were offered Libre 12 months ago is something we don't truly know. But I do know, with considerable confidence, of 2 long standing T1s (both well over 35yrs T1) who were offered at least 12 months ago and definitely said "no thanks". I asked each why and one I deduced was apathetic about any technology and the other said he managed well enough with finger-pricking and MDI. The first had a massive brain bleed a few years ago, spending 6 months in hosp & recuperation (somehow related to his DM) and had to be hospitalised 3 yrs ago because he lost control (!); the second had DKA while out walking on his own in the Highlands and spent a week in a hospital in Aberdeen with his abandoned car 100 miles away and accumulating parking fines - and his anxious wife with 2 small children stranded in Surrey.

So it takes all sorts .... and it seems that by no means every T1 wanted (or yet wants) Libre.

I think 20% or 50% & whenever, is not particularly relevant. And the criteria were not exactly challenging, if you wanted to have Libre. Fundamentally it came down to finance by CCGs. My DSN, in Bucks, leant on the guideline from not so many years ago that said T1s should be supported with whatever they need. So for her it was a question of whether I would benefit from having Libre. I confirmed that by reducing my HbA1c. My first Consultant was simply dreadful. I never met him; he phoned me (inconveniently) an hour ahead of the appointment time and his opening remark was how did I know I had DM. He hadn't even bothered to read my case notes nor realised that I was T3c. I changed Consultant, assisted by my DSN.

I also think that quibbling about eligibility is a minor issue in relation to what seems like appallingly poor support that @francescakate has received so far since her diagnosis and the discussion should centre on what else can we offer or suggest to her by way of help. 🙂?🙂
 
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