Desperate for the freestyle libre

[Abipm]

hi,

I have joined today in the hope of obtaining some advice for getting a freestyle libre. I live a crazy busy lifestyle: exercising for at least 2 hours a day as my mother in law is a fitness instructor, have just finished my degree and now training to be a primary school teacher starting in a school in September full time.

As a result I’m even more desperate for the libre than ever but having spoken to my nurse at east surrey hospital she said the criteria was having been hospitalised twice in the last year for hypos or ketones, testing more than eight times a day, and having an hba1c about 15% above mine... I don’t meet any of these criteria and feel like I’m being penalised for having tried really hard with my control. I’m in no way a ‘good diabetic’ but have never completely lost control (apart from when I was put on the wrong anti depressants which made me hypo and seizure).

I didn’t know if this criteria was universal or I could argue it at all if the same rules don’t apply elsewhere. I’m in no position to pay for the sensors myself and didn’t know if anyone had ideas on what I could do?

Thanks, Abi

 

[Docb]

Copied from the NICE guidelines on continuous monitoring.

1.6.22 Consider real‑time continuous glucose monitoring for adults with type 1 diabetes who are willing to commit to using it at least 70% of the time and to calibrate it as needed, and who have any of the following despite optimised use of insulin therapy and conventional blood glucose monitoring:

• More than 1 episode a year of severe hypoglycaemia with no obviously preventable precipitating cause.
  
• Complete loss of awareness of hypoglycaemia.
  
• Frequent (more than 2 episodes a week) asymptomatic hypoglycaemia that is causing problems with daily activities.
  
• Extreme fear of hypoglycaemia.
  
• 
  Hyperglycaemia (HbA1c level of 75 mmol/mol [9%] or higher) that persists despite testing at least 10 times a day (see recommendations 1.6.11 and 1.6.12). Continue real‑time continuous glucose monitoring only if HbA1c can be sustained at or below 53 mmol/mol (7%) and/or there has been a fall in HbA1c of 27 mmol/mol (2.5%) or more. [new 2015

Your hospital is stretching things a little in their interpretation. The guidelines say you only need to meet any of the criteria, not all of them. Hospitalisation is their interpretation of criterion 1 and their other reqirements are their interpretation of criterion 5. What about criteria 2, 3 and 4?

Don't know if that helps but it always is a good idea to get the rules straight.

 

[Northerner]

The bottom line is that if you test 8+ times a day then you should be eligible, as that is the 'break even' point where issuing a Libre is 'cost neutral' i.e. what it costs them to give you the Libre is offset by the reduced number of blood test strips you will use. That's it, in theory, although I have read that only 20% of people meeting this criteria will be prescribed.

 

[Abipm]

Copied from the NICE guidelines on continuous monitoring.

1.6.22 Consider real‑time continuous glucose monitoring for adults with type 1 diabetes who are willing to commit to using it at least 70% of the time and to calibrate it as needed, and who have any of the following despite optimised use of insulin therapy and conventional blood glucose monitoring:

• More than 1 episode a year of severe hypoglycaemia with no obviously preventable precipitating cause.
• Complete loss of awareness of hypoglycaemia.
• Frequent (more than 2 episodes a week) asymptomatic hypoglycaemia that is causing problems with daily activities.
• Extreme fear of hypoglycaemia.
• 
  Hyperglycaemia (HbA1c level of 75 mmol/mol [9%] or higher) that persists despite testing at least 10 times a day (see recommendations 1.6.11 and 1.6.12). Continue real‑time continuous glucose monitoring only if HbA1c can be sustained at or below 53 mmol/mol (7%) and/or there has been a fall in HbA1c of 27 mmol/mol (2.5%) or more. [new 2015

Your hospital is stretching things a little in their interpretation. The guidelines say you only need to meet any of the criteria, not all of them. Hospitalisation is their interpretation of criterion 1 and their other reqirements are their interpretation of criterion 5. What about criteria 2, 3 and 4?

Don't know if that helps but it always is a good idea to get the rules straight.

Oh thank you that’s really good to know as hopefully I can work with some of that at least! Thank you so much!

 

[Abipm]

The bottom line is that if you test 8+ times a day then you should be eligible, as that is the 'break even' point where issuing a Libre is 'cost neutral' i.e. what it costs them to give you the Libre is offset by the reduced number of blood test strips you will use. That's it, in theory, although I have read that only 20% of people meeting this criteria will be prescribed.

This is true... It makes sense but just seems crazy to me as I am close friends with a few other diabetics and none of us test that much!

 

[SB2015]

This is true... It makes sense but just seems crazy to me as I am close friends with a few other diabetics and none of us test that much!

You already know that the freestyle really helps with prevention of long term problems. I think it would be very helpful for you to have when teaching (from an ex teacher) as it would enable you to head off hypos and hypers, important when you are caring for a class of children.
Would it be worth testing a bit more? Surprising how easy it is to get to 8 tests, especially if you drive, eat, sleep (that gets to six already) and then add in some to do before a lesson.

 

[Northerner]

This is true... It makes sense but just seems crazy to me as I am close friends with a few other diabetics and none of us test that much!

As @SB2015 says, it's worth upping your tests for a bit before requesting it 😱 😉 I have a review next month and my fingers are a bit more sore than they usually are... 😱

 

[novorapidboi26]

This is true... It makes sense but just seems crazy to me as I am close friends with a few other diabetics and none of us test that much!

You would though if you had time, right? 😉

 

[Abipm]

You already know that the freestyle really helps with prevention of long term problems. I think it would be very helpful for you to have when teaching (from an ex teacher) as it would enable you to head off hypos and hypers, important when you are caring for a class of children.
Would it be worth testing a bit more? Surprising how easy it is to get to 8 tests, especially if you drive, eat, sleep (that gets to six already) and then add in some to do before a lesson.

I am try to just hard sometimes to stay focussed and on track doing ‘unnecessary’ tests (like when you aren’t doing/ eating anything and feel fine. I think you are definitely right about doing some before lessons too though and the befits of it!

Thank you

 

[Abipm]

Mi

As @SB2015 says, it's worth upping your tests for a bit before requesting it 😱 😉 I have a review next month and my fingers are a bit more sore than they usually are... 😱

Mine seem to always be sore but think it’d definitely be worth it! Good luck with your review!

 

[everydayupsanddowns]

my nurse at east surrey hospital she said the criteria was having been hospitalised twice in the last year for hypos or ketones, testing more than eight times a day, and having an hba1c about 15% above mine...

She’s almost right. The NHS England criteria that came into effect in April (to stamp out the postcode lottery that had developed) are as follows:

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

2. Pregnant women with Type 1 Diabetes - 12 months in total inclusive of post- delivery period.

3. People with Type 1 diabetes unable to routinely self-monitor blood glucose due to disability who require carers to support glucose monitoring and insulin management.

4. People with Type 1 diabetes for whom the specialist diabetes MDT determines have occupational (e.g. working in insufficiently hygienic conditions to safely facilitate finger-prick testing) or psychosocial circumstances that warrant a 6- month trial of Libre with appropriate adjunct support.

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 self- funding.

6. For those with Type 1 diabetes and recurrent severe hypoglycemia or impaired
awareness of hypoglycemia, NICE suggests that Continuous Glucose Monitoring with an alarm is the standard. Other evidence-based alternatives with NICE guidance or NICE TA support are pump therapy, psychological support, structured education, islet transplantation and whole pancreas transplantation. However, if the person with diabetes and their clinician consider that a Flash Glucose
Monitoring system would be more appropriate for the individual’s specific situation, then this can be considered.​

https://www.england.nhs.uk/publicat...ts-for-funding-of-relevant-diabetes-patients/

There is no HbA1c requirement for Libre, and the criteria are either/or, not ‘and’. And there is certainly NO requirement to have to have been hospitalised!

Libre has separate criteria from real-time CGM (for which the recommendations / guidance have already been posted).

 

[everydayupsanddowns]

That's it, in theory, although I have read that only 20% of people meeting this criteria will be prescribed.

That’s not quite how I understand it Northie. When the Libre was first approved for prescription, take-up was poor and many CCGs blanket refused to prescribe it, even where it would have offered benefit. At that stage only 3% of T1s in the UK could get Libre on prescription.

So NHS England ‘top sliced’ CCG budgets, and established national criteria such that 20-25% of the T1 population (those who need it most as defined in the criteria) will get access. CCGs only get their budget back if they prescribe at the expected level, so the postcode lottery should end.

Of course that means that 80% of T1s will not meet the criteria - but they didn’t have the money to offer it to everyone unfortunately, Plus the research evidence suggested that it ‘worked’ for a certain subgroup, better than if you just gave it to everyone.

But as far as I understand it *everyone* who meets the criteria should get access, not only a fraction of them. I think!

 

[Northerner]

That’s not quite how I understand it Northie. When the Libre was first approved for prescription, take-up was poor and many CCGs blanket refused to prescribe it, even where it would have offered benefit. At that stage only 3% of T1s in the UK could get Libre on prescription.

So NHS England ‘top sliced’ CCG budgets, and established national criteria such that 20-25% of the T1 population (those who need it most as defined in the criteria) will get access. CCGs only get their budget back if they prescribe at the expected level, so the postcode lottery should end.

Of course that means that 80% of T1s will not meet the criteria - but they didn’t have the money to offer it to everyone unfortunately, Plus the research evidence suggested that it ‘worked’ for a certain subgroup, better than if you just gave it to everyone.

But as far as I understand it *everyone* who meets the criteria should get access, not only a fraction of them. I think!

Thanks for the clarification Mike, that makes sense 🙂

 

[Bronco Billy]

Copied from the NICE guidelines on continuous monitoring.

1.6.22 Consider real‑time continuous glucose monitoring for adults with type 1 diabetes who are willing to commit to using it at least 70% of the time and to calibrate it as needed, and who have any of the following despite optimised use of insulin therapy and conventional blood glucose monitoring:

• More than 1 episode a year of severe hypoglycaemia with no obviously preventable precipitating cause.
• Complete loss of awareness of hypoglycaemia.
• Frequent (more than 2 episodes a week) asymptomatic hypoglycaemia that is causing problems with daily activities.
• Extreme fear of hypoglycaemia.
• 
  Hyperglycaemia (HbA1c level of 75 mmol/mol [9%] or higher) that persists despite testing at least 10 times a day (see recommendations 1.6.11 and 1.6.12). Continue real‑time continuous glucose monitoring only if HbA1c can be sustained at or below 53 mmol/mol (7%) and/or there has been a fall in HbA1c of 27 mmol/mol (2.5%) or more. [new 2015

Your hospital is stretching things a little in their interpretation. The guidelines say you only need to meet any of the criteria, not all of them. Hospitalisation is their interpretation of criterion 1 and their other reqirements are their interpretation of criterion 5. What about criteria 2, 3 and 4?

Don't know if that helps but it always is a good idea to get the rules straight.

A note of caution, the Libre isn’t considered to be a continuous glucose monitoring system, so the NICE guidelines don’t apply to it. I know that in paediatrics, each CCG has set their own criteria. Alas, there isn’t one set of criteria that all CCGs have to abide by, so the element of the ‘postcode lottery’ hasn’t gone away. I don’t know if this is the same for adult services.

@Abipm, if you want clarification about the criteria, you can ask the hospital what theirs are.

 

[everydayupsanddowns]

@Abipm, if you want clarification about the criteria, you can ask the hospital what theirs are.

All areas/hospitals/CCGs need to operate under the April mandatory criteria I posted above. Those that are trying to add in extra requirements are getting leant on by NHS England from what I can tell!

 

[JasonM]

It's a sorry state of affairs to be honest some countries it's free.

Though does it really benefit us - it certainly helps when I'm traveling overseas - I purchase them myself albeit some challenges with them currently.

When I'm not I get through 200 strips a month and with no complication for 30 years - and every 6 months when they do my hba1cs I'm always slightly above the guidelines.
So perhaps that's their argument

 

[stephknits]

That’s not quite how I understand it Northie. When the Libre was first approved for prescription, take-up was poor and many CCGs blanket refused to prescribe it, even where it would have offered benefit. At that stage only 3% of T1s in the UK could get Libre on prescription.

So NHS England ‘top sliced’ CCG budgets, and established national criteria such that 20-25% of the T1 population (those who need it most as defined in the criteria) will get access. CCGs only get their budget back if they prescribe at the expected level, so the postcode lottery should end.

Of course that means that 80% of T1s will not meet the criteria - but they didn’t have the money to offer it to everyone unfortunately, Plus the research evidence suggested that it ‘worked’ for a certain subgroup, better than if you just gave it to everyone.

But as far as I understand it *everyone* who meets the criteria should get access, not only a fraction of them. I think!

That's how I would have read it, but just went to an update in my area and our CCG has chosen to give it on a first come first served basis until 20 percent of type 1s in the area who meet the criteria have one. Those applying after that will have to go on a waiting list until someone drops out.

 

[everydayupsanddowns]

That's how I would have read it, but just went to an update in my area and our CCG has chosen to give it on a first come first served basis until 20 percent of type 1s in the area who meet the criteria have one. Those applying after that will have to go on a waiting list until someone drops out.

It seems that this is very not the intended intention of the national criteria. 20% is supposed to be the minimum for a CCG, not an arbitrary limit. Partha and Nick were central to the development of the April criteria.

 

[stephknits]

Interesting, will pass this on - thanks Mike

 

[Northerner]

It seems that this is very not the intended intention of the national criteria. 20% is supposed to be the minimum for a CCG, not an arbitrary limit. Partha and Nick were central to the development of the April criteria.

View attachment 11297

Thanks Mike 🙂 I think Harrogate are normally good with things like this, but will have this as back up should there be any talk of a 20% cap! 🙂 Of course, it is common sense if it is cost-neutral, yet offers greater benefits!