NHS-funded Libre users needed

[amp235]

Hi,

Please can we get a thread going that lists the criteria and locations in which people were successful in getting the Libre on the NHS? For example:

• Username: Your username
• Self-funded Libre user before prescription: Yes / No
• Prescription provided by: GP / Specialist diabetes team
• GP CCG: Name of your GP's CCG
• Specialist diabetes team CCG: Name of diabetes' team CCG
• HBA1C reading at time of prescription: X.X% / XX mmol/mol
• Monitoring with glucose strips possible: Yes / No
• Avg. no. of strips used at time of prescription: X per day (best to look at meter readings rather than best guess)

I hope this thread will help people assess their chance of getting the Libre prescribed themselves, and, should we get enough data, also help us as a community understand the extent of randomness and vagary in the interpretation of prescription guidance by specialist diabetes teams.

 

[Deleted Account]

You could take a look at this: https://www.diabetes.org.uk/get_involved/campaigning/flash-glucose-monitoring

 

[Shellback]

I was able to get one in the Wirral. I'm a type 1 diagnosed February 2018. One of the criteria for having one prescribed in the Wirral is that one was testing oneself at least 8 times a day. I took a print out from my reader recording the number of times I was testing myself per day on average - around 10 - and a letter to my appointment with the consultant and asked her if I could have one. She said yes as I had given her all of the evidence required for the application.

Form filled in below.

• Username: Shellback
• Self-funded Libre user before prescription: Yes
• Prescription provided by: Diabetic Consultant
• GP CCG: Arrowe Park Hospital
• Specialist diabetes team CCG:
• HBA1C reading at time of prescription: 115 in February on diagnosis 36 in July
• Monitoring with glucose strips possible: Yes
• Avg. no. of strips used at time of prescription: 10

 

[neels]

Hi,

I got approval just last week from my hospital, so nothing to report as yet, but hoping the process is quick. They said the waiting list is not long in my CCG. I was put under Category 1 for the approval by my consultant at St Barts Hospital (London).

• Username: neels
• Self-funded Libre user before prescription: No
• Prescription provided by: GP / Specialist diabetes team
• GP CCG: Redbridge
• Specialist diabetes team CCG: Name of diabetes' team CCG
• HBA1C reading at time of prescription: 47
• Monitoring with glucose strips possible:
• Avg. no. of strips used at time of prescription: 9 per day (avg)

Will update the above missing details as soon as I get more info.

 

[tim2000s]

You might want to read this: http://www.t1tenor.com/2018/08/august-libre-update-data-data-and-more.html

 

[Rach85]

Hi,

My 8 year old daughter is having one half term week. Rang the DSN as I had already brought the meter and sensors and asked if we would be OK to use or if they would rather us continue with test strips until our next appointment. They asked if we were self funding, I said yes and they said they would take her case to the CCG meeting for approval and she got it;

• Username: not quite sure but is on the post, sorry!
• Self-funded Libre user before prescription: No
• Prescription provided by: will be
• GP CCG: Dudley CCG
• Specialist diabetes team CCG: Dudley pediatric diabetes team (Venture way & Russell's Hall)
• HBA1C reading at time of prescription: X.X% / 47 mmol/mol
• Monitoring with glucose strips possible: Yes (at meal times and if symptomatic)
• Avg. no. of strips used at time of prescription: 11

 

[amp235]

Hi
Thanks everyone for the contributions so far - I think what is starting to appear is a clear picture that the prescription guidelines are being interpreted differently across geographies, and it essentially comes down to the person on the other end of the desk whether you get a prescription or not.

To get a clearer idea of what's going on, I also wished that I had also asked for people that have been refused to share their circumstances - so if you fall under that category please feel free to contribute.

 

[Deleted Account]

I attached the policy in Bath, North East Somerset, Swindon and Wiltshire CCG where it is very difficult to get a Libre and, even if you do, you have to jump through loops to keep it beyond 6 months.
Needless to say, I do not qualify for one.

 

[becca59]

Attended the hospital in Leeds today. Saw my consultant. Asked about funding as I do every time I go. It is a no, as I expected. The criteria are very strict. Hypo unawareness, hospital stays etc. Very few people qualify and there is absolutely no deviation from the criteria. Have self funded for the past year and have reduced my HbA1c another 2 to 47.

 

[Timostags]

A little of subject but I didn't want to start a new thread for something that has probably been answered a hundred times on the forum already....
I'm really keen to try Libre and am thinking of self funding it.
Can you just buy the sensor and use the app or do you NEED the reader/starter pack?
Can I go to a pharmacy and just ask to buy a sensor or do I have to get something from a doctor first?
Where do you recommend buying from, I've heard Asda?

 

[tim2000s]

@amp235 -I don’t know if you read the link I posted, but you’re a little behind the curve.

The guidelines that were published by the regional medicines optimisation committee that were “England” wide are not binding.

As a result, each CCG or Area Prescribing Committee can do what it wants to.

The result has been variability if criteria and in some places strict lockdown that makes access very difficult.

The link I provided is the blog of a T1 that has been working closely with NHSEngland on what the discrepancies and issues are and I’ve also dig into the issues in London.

It’s worth having a read around of the postcode lottery, but the reasons are well known and well understood.

 

[amp235]

@amp235 -I don’t know if you read the link I posted, but you’re a little behind the curve.

The guidelines that were published by the regional medicines optimisation committee that were “England” wide are not binding.

As a result, each CCG or Area Prescribing Committee can do what it wants to.

The result has been variability if criteria and in some places strict lockdown that makes access very difficult.

The link I provided is the blog of a T1 that has been working closely with NHSEngland on what the discrepancies and issues are and I’ve also dig into the issues in London.

It’s worth having a read around of the postcode lottery, but the reasons are well known and well understood.

Definitely thought it was an interesting read, and yes there is a problem around regional variability. What I am finding, or think I am finding is that there is variability even in terms of whether patients that meet whatever local criteria are being followed get their prescriptions or not.

You could live in an area that has the Libre, meet the local guidelines and fail at the hurdle where your local specialist simply does not want to prescribe it to you.

Currently in that situation, and waiting to hear back from them after forcing the issue.

 

[Rokaab]

Can you just buy the sensor and use the app or do you NEED the reader/starter pack?

You can just use a smart phone - I know it definitely works on my android phone (your phone must ahve NFC though)

Can I go to a pharmacy and just ask to buy a sensor or do I have to get something from a doctor first?
Where do you recommend buying from, I've heard Asda?

Don't need anything from the docs, and yes I just get mine from the Asda pharmacy a mile from where I live - though I don't know if they can all stock/get them.

And in reply to @amp235 , my local CCG (Wokingham) don't prescribe them.

 

[evilclive]

You can just use a smart phone - I know it definitely works on my android phone (your phone must ahve NFC though)

Do you still need the reader to start the sensors, or have they fixed that now?

 

[Deleted Account]

Do you still need the reader to start the sensors, or have they fixed that now?

You can start the sensor from the app.
No need for the reader.