Self funded my libre for 4 years

[Warrentype1]

Hey guys,

my first post here so il give you a small back story i have been on social media for years - I was under the Instagram warrentype1 which I used too help suffering type 1s. For
Years I helped people which I have loved doing - my a1c is 6.4 and I’m very well controlled and I follow a flexible diet / bodybuild.

in 2016 my diabetes clinic told me about the libres so I purchased them immediately. As you all know they take so much stress away and once you have had them it’s pretty difficult
Going back to pricking constantly - once I started speaking about I self fund hundreds of my followers told me I can get them prescribed. I asked my doctor and he said yes you can but you need Your diabetes team to email him, I explained which he knows that my clinic has been dissolved? I’m no longer under a clinic at 26 years old and I’m very well managed. I explained that there’s no reason for me to go to a new clinic and waste there time and money when I’m very well managed, I feel strongly that other people need the appointments which il just be wasting the NHS money. I will go but atm I have been on lockdown ( obviously ) for a year and there’s no possible way I can actually get to a diabetes team so I can get prescribed them.

my reasoning for no longer self funding is due to covid and work, I really can no longer afford them on top of my rent ect atm but going back to pricking my fingers have really made it difficult to manage. Now my doctor this week has put me down to 25 strips! Just 1 pot and won’t give me more until I have a blood test but we are in Essex which is so bad for covid and. I said is it worth it? I have a shielding letter / a great a1c and I just feel like his working against me!

is there any diabetes team I can speak to on the phone even if it’s just to up my prescription of test strips as someone who trains and is a athlete it’s impossible to control my sugars atm with such low strips.
Thank you for your time everyone
Warren

 

[MeiChanski]

Hello Warren

Welcome! I’m aware your GP can give you more test strips. I had a similar issue back in 2013, where my GP gave me just one box and I was suffering hypos, of course I’d go through weekends without testing so I needed an ambulance. GP since then has given more. Also you don’t need to keep repeating your prescription. Was there any reason why your GP decrease your strips? Minus blood test, If you are driving, you’ll need to test too, so one pot of test strips is arguably quite dangerous. I know COVID-19 is quite bad, from experience my journey to get my eyes tested for diabetes was quite safe with the measures put in place.

I’m afraid I only know your GP can refer you to see a diabetes team at your local hospital. Have you called your hospital team despite you are not under one? The one who mentioned libres to you? I have a similar mindset but my therapist has been telling me that we are all entitled to some level of care, whether we are in good management or not. Because you’ll need a consultants approval for future diabetes tech or newer insulins, so it’s best to get the referral underway.

 

[LittleGreyCat]

Noting that you refuse to sign on to a clinic and you also refuse to have a blood test.

Why are you surprised that your GP is not massively supportive?

 

[AlfonsoJones]

NHS requirements for funding the libre are public knowledge - google search it. It’s the “diabetes specialist service” who makes the decision.. whoever that is (DSN or Endo) is down to the local CCG

 

[oldgreymare]

Hey guys,

my first post here so il give you a small back story i have been on social media for years - I was under the Instagram warrentype1 which I used too help suffering type 1s. For
Years I helped people which I have loved doing - my a1c is 6.4 and I’m very well controlled and I follow a flexible diet / bodybuild.

in 2016 my diabetes clinic told me about the libres so I purchased them immediately. As you all know they take so much stress away and once you have had them it’s pretty difficult
Going back to pricking constantly - once I started speaking about I self fund hundreds of my followers told me I can get them prescribed. I asked my doctor and he said yes you can but you need Your diabetes team to email him, I explained which he knows that my clinic has been dissolved? I’m no longer under a clinic at 26 years old and I’m very well managed. I explained that there’s no reason for me to go to a new clinic and waste there time and money when I’m very well managed, I feel strongly that other people need the appointments which il just be wasting the NHS money. I will go but atm I have been on lockdown ( obviously ) for a year and there’s no possible way I can actually get to a diabetes team so I can get prescribed them.

my reasoning for no longer self funding is due to covid and work, I really can no longer afford them on top of my rent ect atm but going back to pricking my fingers have really made it difficult to manage. Now my doctor this week has put me down to 25 strips! Just 1 pot and won’t give me more until I have a blood test but we are in Essex which is so bad for covid and. I said is it worth it? I have a shielding letter / a great a1c and I just feel like his working against me!

is there any diabetes team I can speak to on the phone even if it’s just to up my prescription of test strips as someone who trains and is a athlete it’s impossible to control my sugars atm with such low strips.
Thank you for your time everyone
Warren

Hi @Warrentype1, I can certainly understand your frustration but you will make more headway by trying to understand how to optimise the NHS system for you. In many ways the NHS is brilliant, but it is also massively bureaucratic. Regardless how sympathetic or not any individual doctor or DSN you interact with is, they need to follow a complex set of guidelines before changing treatment, making referrals, etc. There are a lot of boxes to tick, hoops to jump through. Help them tick the boxes - get up to date bloods, inc A1c (when last measured?) . Actually blood draw should be fast and at safe facilities. Results are then easy to discuss via phone or video consult - you will not be wasting NHS time and there is no reason why your strip prescription cannot be approved after a phone/video consult! Remember all long term prescriptions need periodic formal review from time to time. That may be why your GP was reluctant to prescribe more scrips until up-to-date results have been reviewed.

As a Type 1 you ideally should be registered with a local diabetic endocrinology clinic to help support you and your GPs. Ask to be referred to a new one if you are no longer registered at present, as they may have more clout re referral for a Libre. You can even help them out if (like mine attached to a university), they are always looking for people interested in helping in research trials.

This ref. outlines latest NHS guidelines for Libre approvals. There is some discretion, but priority in adults is severe hypo unawareness, proven consistent ability to test 8+ times a day and/or some more complex situations.

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

Apologies in advance and you absolutely don't need to reply, just blatant curiosity - why were you given a shielding letter - a super fit 26 year old with well controlled T1, wouldn't normally be asked to shield? Hope you are not also having to manage other severe conditions. Take care!