Keep being denied the Free Style Libre prescription

[karl76uk]

Hello diabetic forum I need some advice. I’ve been going to guys hospital in London for a year now and I’ve been seen twice. My first appointment I enquired about the Free Style Libre system and asked could I get on to it and they said it wasn’t available at the time bearing in mind this is 2018. I was told to help my case to test up to 8 times a day which I started doing until I was seen again in January. Now I told them that my meter wasn’t working correctly which they ignored but I just carried on using it testing 8 times a day when I was seen in January God was it horrible experience I saw a nurse at the hospital that was more interested in taking notes and not really listening to me properly but then said The Free Style Libre wasn’t available still even though for that area it was then I saw a Doctor Who said to me you meet all the criteria even though she ignored all my blood test sugar results and said something about they just don’t wanna Open the floodgates yet. Which I didn’t really understand what she was talking about so in the end I decided start self funding which I’ve been doing now for the past 5 months. I’ve got an appointment on Thursday to see the same doctor again and I’m just wondering if she won’t give me the Free Style Libre on prescription still is there any advice anyone can give me about what I could do because this hospital just seems to be totally ignoring me.

I’m a type 1

 

[Juicyj]

Hello @karl76uk Each CCG has an individual policy on prescribing the libre, my CCG doesn't allow type 1's access unless they meet certain criteria such as no hypo awareness so it's a postcode lottery. If they are not prescribing it then apart from self funding there isn't much you can do.

 

[slip]

As of April there is a national criteria for getting the sensors on prescription, BG testing 8 times a day is one of those criteria which you were doing, however there is also a section on self funders which you are now, if your hba1c has improved during your use of it that will help your cause, as will the doing of 8 tests a day before hand.
This may help:

https://www.england.nhs.uk/wp-conte...toring-national-arrangements-funding-v1.1.pdf

 

[karl76uk]

As of April there is a national criteria for getting the sensors on prescription, BG testing 8 times a day is one of those criteria which you were doing, however there is also a section on self funders which you are now, if your hba1c has improved during your use of it that will help your cause, as will the doing of 8 tests a day before hand.
This may help:

https://www.england.nhs.uk/wp-conte...toring-national-arrangements-funding-v1.1.pdf

Thank you I take a look.

 

[karl76uk]

Thank you I take a look.

Do you know if it counts I’m using the ssensor now I’m not fingerprinting ?

 

[slip]

"1. People with Type 1 diabetes OR with any form of diabetes on hemodialysis and on insulin treatment who, in either of the above, are clinically indicated as requiring intensive monitoring >8 times daily, as demonstrated on a meter download/review over the past 3 months OR with diabetes associated with cystic fibrosis on insulin treatment

5. Previous self-funders of Flash Glucose Monitors with Type 1 diabetes where those with clinical responsibility for their diabetes care are satisfied that their clinical history suggests that they would have satisfied one or more of these criteria prior to them commencing use of Flash Glucose Monitoring had these criteria been in place prior to April 2019 AND has shown improvement in HbA1c since selffunding"

Think these 2 points are most valid for you (unless you fulfil one of the other criteria). so prior to self funding had you got 3 months worth of a clinic need to test 8 times a day, and has your hba1c improved since using the sensors?

 

[Rokaab]

Do you know if it counts I’m using the ssensor now I’m not fingerprinting ?

I know for myself it did (admittedly I did have one day in the last few months where I did about 9 tests - this was because the sensor had started given very strange results - and I got it replaced by Abbott). Though note this may also be dependent on CCG's - my CCG did not prescribe any before April no matter what.
Also note, my HbA1c did improve quite a lot helping to fulfil part 5 that @slip quoted

 

[porl69]

Do you know if it counts I’m using the ssensor now I’m not fingerprinting ?

The Libre is only "accurate" between 4 - 8mmol. It is known to be off (can be way off) if higher or lower. I have the Libre and still finger prick 4 times a day

 

[karl76uk]

"1. People with Type 1 diabetes OR with any form of diabetes on hemodialysis and on insulin treatment who, in either of the above, are clinically indicated as requiring intensive monitoring >8 times daily, as demonstrated on a meter download/review over the past 3 months OR with diabetes associated with cystic fibrosis on insulin treatment

5. Previous self-funders of Flash Glucose Monitors with Type 1 diabetes where those with clinical responsibility for their diabetes care are satisfied that their clinical history suggests that they would have satisfied one or more of these criteria prior to them commencing use of Flash Glucose Monitoring had these criteria been in place prior to April 2019 AND has shown improvement in HbA1c since selffunding"

Think these 2 points are most valid for you (unless you fulfil one of the other criteria). so prior to self funding had you got 3 months worth of a clinic need to test 8 times a day, and has your hba1c improved since using the sensors?

The Freestyle app says it’s gone too 6.2 from 8.6 the HbA1c. And I’ve only been using the Libre for the past 5 months so I have almost 2,000 scans. This is what I’m wondering will this count ? It’s just before I when self funding the hospital just ignored my tests with the finger pricking method. So as the reason going to the Libre was to reduce the pain I stopped pricking.

 

[MeiChanski]

Hello, I think there are a lot of CCGs having issues with prescrbing the libre sensor. Last year, my previous CCG were not prescribing at that time and they were still speculating it and waiting for NHS to approve it, then they'll come out with their guidelines on who gets what. Even with the end of postcode lottery on April 1st 2019, we are still having issues and I'm guessing CCGs were not ready to open the floodgates for the sensors and some CCGs are suffering with the lack of funding prior to it. I would keep fighting and get someone to listen to you.
Since I've moved, I'm seeing my new consultant tomorrow and I'll let everyone know if he is willing to prescribe it.

 

[karl76uk]

I just talk to guys hospital today to find out if I’ll be wasting my time Thursday and to answer to that question I would be, they told me they would still ignore my blood sugar results from the libre because they would need to go by the finger prick and Method. So I cancelled my appointment and I’m no longer going to go to hospital I just give up.

 

[slip]

Contact Partha Kar, he's the NHS lead in getting these criteria sorted and working and has some clout, If you needed to do 8 BG test prior to self funding the libre and your hba1c has improved since using it they have to follow the national wide rules.

 

[MeiChanski]

I just talk to guys hospital today to find out if I’ll be wasting my time Thursday and to answer to that question I would be, they told me they would still ignore my blood sugar results from the libre because they would need to go by the finger prick and Method. So I cancelled my appointment and I’m no longer going to go to hospital I just give up.

Hello, I'm sorry to hear. How often do you see your consultant?(I only know that the consultant can prescribe libre sensors and not the nurse) if it is 3-4 months, maybe you can finger prick during that time to use as evidence to argue you fit the criteria for a sensor. Maybe you can ask to see another consultant or be referred to another hospital? I know a part of the criteria is finger pricking more than 8 times a day and another part is self funding which some diabetics have been able to get it on prescription because they showed their control has improved etc. I also agree that contacting Partha Kar will be able to help you out in getting the sensor on prescription. I was prescribed the sensors today, my consultant looked through my finger pricks and said he'll write to the GP to continue to prescribe it. He said for the duration of 6 months though so I doubt it'll be a permanent solution, but it'll be useful to identify patterns and trends.

 

[NicoleC1971]

I;'d try Diabetes UK careline as they have been instrumental in getting the fsl prescribed more uniformly:
https://www.diabetes.org.uk/resources-s3/2018-01/1303-Flash_Advocacy_pack-DL-digital.pdf
Jump through the hoops. Your consultant should be facilitating this but they will be mindful of the 20% cap (not to give it to more than 20% of diabetics in your CCG area). You should also agree a treatment target e.g. reduction in hypos or hba1 c which will enable your continued prescription to happen.
Best of luck and don't accept any fobbing off !

 

[Pieman85]

It’s basically been a postcode lottery with the libre up until now. I was lucky enough to be prescribed on prescription but I know my area in general didn’t approve of the funding...
As of April everyone should be able to get nhs funding for the libre. You might have to push for it as we estimated that in Solihull alone the yearly cost would be high up in the millions.
She may not have done us proud with brexit but I think the release of the funding has a lot to do with Theresa May.

Good luck

 

[MeiChanski]

It’s basically been a postcode lottery with the libre up until now. I was lucky enough to be prescribed on prescription but I know my area in general didn’t approve of the funding...
As of April everyone should be able to get nhs funding for the libre. You might have to push for it as we estimated that in Solihull alone the yearly cost would be high up in the millions.
She may not have done us proud with brexit but I think the release of the funding has a lot to do with Theresa May.

Good luck

We can agree to disagree but with the end of postcode lottery on the 1st April 2019, I don't think CCGs, especially some of them were suffering prior to it, were not ready for the floodgates to be opened. However I'd like to think St Thomas and Guy's hospital which is central london would have it sorted. I'm only saying this because prior to moving, I lived in SE london and the CCG there were not ready to prescribe sensors because of the lack of funding - they already shut down their A&E and cut the hospital size in half.
I hope OP finds someone in their diabetes team that will listen or contacts Partha Kar etc or gets a second consultant opinion or gets referred to another hospital. I'd like to note that OP can find the CCG guidelines or outcomes online and highlight that he or she fits the criteria to get it on prescription. I too, have read CCG guidelines in my area - which is South Warwickshire. Today my consultant said he'll prescribe it for 6 months because he read my spreadsheets and finger pricks.
I agree every T1 diabetic should have access to the sensors, but it really depends on the CCG. Some are suffering more than others with the end of postcode lottery and nhs will always be in debt. Even more so on insulin pumps, but it's my wishful thinking.

 

[Knightrider]

I’ve tried to self fund, but can’t get one. Where have you self funders been getting them?

I have at last been prescribed it – long battle. I don’t meet my CCG’s criteria BUT as I broke my neck (ooops) I have peripheral nerve damage so I have to finger prick up to 4 times to get a place that bleeds enough to get a sample. That swung it for me.
When prescribed, the NHS make you attend a couple of hour course on how to use it before you actually get one. I was finally prescribed in April and the first course I could be booked on was ....... October. Hooray!

Interesting that Karl has had “horrible experience” with the specialist nurses and doctors at the hospital. The consultant I see is extremely discursive and we have very open, detailed and respectful discussions. We have I believe learned from each other – certainly me from him. And I believe he from me – after all he hasn’t got T1 and I have!!
My consultant made a telling comment about the Libre “In 15 years as a consultant in diabetes the Libre is the most significant development I have ever seen”.

I think the criteria for prescribing will gradually be relaxed. Abbott have developed something so handy and demand is so great they cannot begin to cope with that demand. I presume as they ramp up their production capability this will, or at least should, change.
Currently it is expensive. Again, the price should come down as volume increases, if the normal manufacturing criteria apply. Although, based on some of the horror stories you read, I have little faith in the NHS purchasing function being capable of negotiating any decent prices for anything.

 

[MeiChanski]

I’ve tried to self fund, but can’t get one. Where have you self funders been getting them?

I have at last been prescribed it – long battle. I don’t meet my CCG’s criteria BUT as I broke my neck (ooops) I have peripheral nerve damage so I have to finger prick up to 4 times to get a place that bleeds enough to get a sample. That swung it for me.
When prescribed, the NHS make you attend a couple of hour course on how to use it before you actually get one. I was finally prescribed in April and the first course I could be booked on was ....... October. Hooray!

Interesting that Karl has had “horrible experience” with the specialist nurses and doctors at the hospital. The consultant I see is extremely discursive and we have very open, detailed and respectful discussions. We have I believe learned from each other – certainly me from him. And I believe he from me – after all he hasn’t got T1 and I have!!
My consultant made a telling comment about the Libre “In 15 years as a consultant in diabetes the Libre is the most significant development I have ever seen”.

I think the criteria for prescribing will gradually be relaxed. Abbott have developed something so handy and demand is so great they cannot begin to cope with that demand. I presume as they ramp up their production capability this will, or at least should, change.
Currently it is expensive. Again, the price should come down as volume increases, if the normal manufacturing criteria apply. Although, based on some of the horror stories you read, I have little faith in the NHS purchasing function being capable of negotiating any decent prices for anything.

I use to buy them from Asda pharmacy. With a few telephone calls, Asda were doing it for the cheapest compared to what Abbott was selling online. You have to call ahead of time though because they fulfil prescriptions first before selling one to you.

It depends on the CCG, I didn’t need to do any training or education for my consultant to prescribe me it. I have already completed DAFNE and learned about sensors through a lecture at the hospital, which included a sensor as a freebie.
I have agree to some extent that NHS might be overpaying for sensors or I could be wrong and they are paying a good bulk price for it. But they are overpaying for insulin. NHS can’t cope and along with Abbott not being able to keep up with demand is a recipe for disaster. I have little hope for the criteria to be relaxed, I’m comparing this to insulin pumps and we are still fighting tooth and nail for it.
I hope you get well soon!

 

[Knightrider]

I use to buy them from Asda pharmacy. With a few telephone calls, Asda were doing it for the cheapest compared to what Abbott was selling online. You have to call ahead of time though because they fulfil prescriptions first before selling one to you.

It depends on the CCG, I didn’t need to do any training or education for my consultant to prescribe me it. I have already completed DAFNE and learned about sensors through a lecture at the hospital, which included a sensor as a freebie.
I have agree to some extent that NHS might be overpaying for sensors or I could be wrong and they are paying a good bulk price for it. But they are overpaying for insulin. NHS can’t cope and along with Abbott not being able to keep up with demand is a recipe for disaster. I have little hope for the criteria to be relaxed, I’m comparing this to insulin pumps and we are still fighting tooth and nail for it.
I hope you get well soon!

Thanks for that, v useful. I'll get onto ASDA. TBH I'd rather buy it than have it prescribed. Yes, I know 2 people who buy them, not prescribed and they didn't do any training courses in order to use it. Both getting along well with it. The way it displays a graph showing what has been going on over the last period of time you select is fantastic. Should be able to see how fast/slowly a particular carb/meal brings up your blood sugars and how quickly/slowly a Novorapid shot acts. Mega info.