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FREESTYLE LIBRE - Refused point blank

kazam401

Active Member
Messages
28
Visited my GP's today for my 6 month check up from the local Diabetic nurse.

Her initial question was "are you type 1 or 2?" as I've been type 1 since 1981 & at the surgery since 1992 I was a little taken aback especially when she started having a pop because my HA1Bc has gone down from 55 to 43 in 4 months since my last blood test.
I took this as an opportunity to try for the Libre & started to explain why my levels have been lower. I explained about my new roll at my employers (38 years service) being at times a lot more labour intensive & having to regularly take time out to go & check my levels (this takes me about 15 - 20 minutes, washing off, getting my meter doing the test & trying to sort myself out) it is awkward & at times I do struggle, plus there is a bit of resentment from supervision if I am having a particular bad day.

I requested to go on the libre to possibly save my job & my health - I was told in no uncertain terms "Not a chance - costs too much, you are wrong age (55) & apart from possible hypos you are in good health, I was gob smacked, she then complained my blood pressure was a bit high (no surprise there) Wished me a merry Christmas & said see you again in 6 months time.

Where I live has the unfortunate stigma of having the 2nd lowest male life expectancy in the whole of the UK & now I think I know why as the local health authority do not seem to want to do anything about these statistics because if they do it will cost money!

I came out of the surgery in a bit of a state of shock, I feel worthless it seems the 17-20k I pay every year in tax & national insurance is not worthy of an extra couple of quid to keep me healthy & possibly save my job.

In all my years as a diabetic I have had very very little in the way of "new things" I only got on the DAFNE course in 2016 (& that was hardly new as it has been around for nearly as long as I have been type1) & that is the 1st time in over 30 years as a diabetic that ANYONE has sat me down & explained properly about this condition.

I feel very down about this & I don't know who to talk to or where to go but one sentence of advise to fellow type 1's - don't go moving to Blackpool South.
 
Sorry to hear of your experience. I feel frustrated just reading your story. My thoughts of support are with you; keep fighting.
 
Sorry to hear that @kazam401, Is there another GP you could see your a second opinion? Or is there a specialist yuo can see to push for your case? Perhaps a letter to your local member of Parliament about your 'treatment' is warranted plus I think there are support groups for persons like yourself who have been discriminated against. Others on site will have the information.
There was supposed to be an end to the postcode lottery of Libre devices received by people so that is something your local member could use to question the appalling status quo where you reside.
You sound like you have been most conscientious in your care of your diabetes and deserve all the help that is available.
Ignorance by doctors is not bliss.
 
That is pretty bad. Even when I was initially refused the fsl, my GP was entirely supportive of the concept saying it was a 'no brainer' as far as cost benefit was concerned.
However it is known that provision is patchy and I believe diabetics are graded into those treated at GP surgeries who are doing well and thosed requiring expert led care. This hides the fact that those with excellent HBA1cs still have to spend lots of time managing their blood sugars/bypos whilst holding down jobs and that their quality of life and glucose manageement would improve immensely with the fsl. NICE agrees. Public Health England agrees and will fund it by April.
Further info (if you want to put up a fight)
https://www.diabetes.org.uk/get_inv...16.1418402561.1545203267-554970172.1510865123
This is a useful site whre you can enter your post code and offers a letter to your CCG. No idea if it is up to date but know that Diabetes UK have been trying to nudge the slower CCGs along behind the scenes as well as their public facing work!

Contact your CCG to ask for their prescribing policy for tier 1 patients like yourself. I did look on the relevant website but could not find up to date information easily without going into a labyrinth of older documents. Not a great sign!
Telephone: 01253 951200 (please make sure to ask for Blackpool CCG in order to be put through to our team)
Email:blackpool.ccgcomments@nhs.net
There will be criteria e.g. attendance of a DAFNE in the last 10 years, testing x 8 per day currently or more.....

The alternative is to fund yourself pending April. My consultant suggested I use the device for a couple of weeks per month to adjust my insulin doses. If your HBA1c is dropping because of frequent hypos then your team will want you to reduce these in case you begin to lose hypo awareness and the fsl will certainly help you spot if your basal is too high or if you are not adjusting for the extra physicality of your job. Its great for spotting what has happened to you overnight without the need to test every 2 hours. If you are exerting yourself during the day then you may find that your sugars are dropping hours afterwards too?

Best of luck!
 
Whilst it is frustrating the NHS won't fund your Libre, given how much time (and money) it saves at work, can you talk to your employer about funding it?
 
Are you under the care of a hospital? Personally I don't bother turning up (or booking- I don't waste appointments) for GPs 'diabetic checks' as they are a waste of time. From everything I see DSNs used in the loosest term have an interest but have no real idea unless they are working under a professor.
 
I think if you are well controlled with no complications like the OP, you have no choice but to get care via the GP and DSN team! And yes I'd agree the quality of those is variable given that they also deal with 90% patients being type 2.
 
NicoleC1971 said:
I think if you are well controlled with no complications like the OP, you have no choice but to get care via the GP and DSN team! And yes I'd agree the quality of those is variable given that they also deal with 90% patients being type 2.
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I cant even imagine not going to a hospital... How do you know you have any access to the most up to date research or meds? how do you find out there are new insulin or technologies available and how do you access them?

My Gp wont even give me a script for 1 vial of fiasp or change my insulin without a hospital letter!
 
I didn't think that Gps and the nurses at their practice could prescribe the libre, I thought it had to come from a consultant!!?? Maybe request your Gp refers you to a specialist to help you deal with the 'high levels' of hypos you are having ( they will only need to look at your excellent Hba1 to believe you!)
Good luck, i feel for you, follow nicole1971 advice and fight, it will be worth it!!
 
First of all, your GP can prescribe Libre, assuming your CCG is allowing it to be prescribed. If your CCG doesn't provide it or has imposed criteria you don't meet, my consultant tells me that your GP can over-ride CCG prescribing rules if he or she feels it to be clinically necessary (kudos to any GP who takes on their CCG). Also see para 6.3 of this: http://www.gplaw.co.uk/chapters/itemlist/user/804-davidlockqc. The NHS insisting that all CCGs provide Libre from April doesn't mean everyone will get it; the estimate is 25% of T1s. This is because you have to meet one or more of the NHS criteria for prescription; you can find those here: https://www.sps.nhs.uk/articles/reg...committee-freestyle-libre-position-statement/ Ignore the fact that this report is from the Regional Medicines Optimisation Committee, they produced this for the whole of the NHS.
I'd add that you're entitled to see a diabetes specialist as one of the 15 annual checks for pwd. A DSN is a nurse who works wholly in diabetes care; this doesn't apply to all nurses who see diabetes patients in GP surgeries.
 
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Many thanks for all the replies - they have given me a lot to think about & some inroads into what would be my best way forward.
I see my specialist in April so if I haven't started self funding by then I will again make the request.
I think work funding is unfortunately out of the question but I will ask when back on day shift in the new year, they can only say no.

In the last 12 months I have been in touch with my MP & had a reply regarding this issue, but it was a bit of a generic email that said nothing of any interest or hope (typical politicians talk).
Have had to re register on the Abbot site as there seems to be a waiting list for sensors for self funders, which just adds to the frustration.
Had some bad thought about this self funding, demanding more test strips from my GP - Accu Chek Mobile cassettes have a value on certain selling web sites, (it was just a though in an angry moment & not something I would actually do) but I will be demanding another 50 strips as have read the NHS's own "Guidelines for Home Monitoring of Blood Glucose Levels" & they are short changing me on there recommendations.
Again many thanks for the replies I will try & add to this post if anything changes.
 

I understand that its upsetting that they don't want to issue the libre, the best bet is as mentioned above, using the DSN.
However if you are paying 17-20K in taxes per YEAR. Then surely ~£1500 a year to improve your health is not too much of an investment?
 

I don't think the fact that you can afford one is the point here. If Kazam is entitled to one then he should get one on the NHS, which he has paid into, why should he go 'private'? Should we start paying for our medications as well then based on that principle? It is a very personal thing if you do decide to fork out for one but I do not hold with this 'You can afford one, buy it'.
 

I understand that, it should be available on the NHS; but the CCG rules do not allow it for every person atm. Medication is different as those rules are set in stone (i.e. type 1's get free insulin regardless), there is no such rule for a libre. But in the meantime, would the self funding health benefits not outweigh the cost? What good is money if you don't have health.
 


If you want to self fund the easiest way is to go and get one from a chemist - they aren't on backorder and can be cheaper depending where you go. These is a thread on it somewhere.

Completely understand though the rest, I've self funded a dexcom for 5 years now mostly. It can work out cheaper than libre if that's any use?
 
So let's be clear here. Across the board, the CCG adopted guidelines (which change in April to be England wide) pretty much all require that the initial prescribing of the Libre is done by the specialist Diabetes team.

This is not your practice's diabetes nurse, but the consultant at your hospital's diabetes clinic. Very few surgeries will prescribe direct, but it's not down to the diabetes nurse, who clearly doesn't understand the criteria either. From a cost perspective, you'll really struggle to get a GP to override a CCG unless you have a very good relationship with them and/or they are much more forward thinking than many, and most will refer to the CCG guidance and refer you to secondary care anyway.

NicoleC1971 said:
I think if you are well controlled with no complications like the OP, you have no choice but to get care via the GP and DSN team! And yes I'd agree the quality of those is variable given that they also deal with 90% patients being type 2.
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As a person with Type 1, it's very clear in both NICE guidance and NHS England guidance that you should have access to secondary care, and a clinic of your choice at that. If you have type one and are only under the care of a GP, you need to request a referral. This can't be turned down, however hard someone might protest.
 
Agree and voted with my feet to get to a better clinic but also know many friends who are with their GP including one friend who had to transfer to hospital care simply to be in the tier 3 category and get FSL. So yes there is a choice but it seems you have to be a bit bolshie to get it!
 
kazam401 said:
I think work funding is unfortunately out of the question but I will ask when back on day shift in the new year, they can only say no.
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If you're going to talk to your employers about it, maybe worthwhile running these links past them.

It looks like there's a tax break for employers who provide aids for people with disabilities, even where the aid is used in private life.

www.inputdiabetes.org.uk/tax-break/

https://www.gov.uk/hmrc-internal-manuals/employment-income-manual/eim21846

So, the employer pays for your libre/cgm, and pays correspondingly less tax.

The link has been on the Input site for a while now but there's not been much feedback on people successfully using it.

This poster did though:

https://www.dafneonline.co.uk/forums/1/topics/3004
 
Engineer88 said:
I don't waste appointments) for GPs 'diabetic checks' as they are a waste of time. From everything I see DSNs used in the loosest term have an interest but have no real idea unless they are working under a professor.
Click to expand...

Most nurses working in GP surgeries are basic Practice Nurses. The course most have done is 2 days long.......hardly a grounding to be called a Diabetes Specialist Nurse. I find most dont know their a**e from their elbow, and that's being generous! Basically they appear, in my area at least, to parrot 'the eat more carbs, 5 a day fruit and veg, low fat, exercise will work' mantra. If everything was as simple as they say then why are there so many diabetics facing complications? We need a shake up in diabetes care.
 
Something strange has happened since my meeting with my GP Practice nurse. I received a letter dated the day after my meeting cancelling my annual Specialist appointment at hospital stating "there will be no doctor available to see you" with no alternative date just a telephone number to use if I no longer require an appointment.
I honestly can not believe this is just unfortunately timed but only having an annual appointment with the hospital, which now seems to have been cancelled is not really giving me any hope regarding my longitivity (no wonder Blackpool South men die before they reach 75)
 
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