PCT says no to Levemir???!!!

[pippaandben]

I am spitting feathers - very cold ones at that! Have just come from meeting with nurse over moving to basal/bolus regime from a mix. I was told 2 weeks ago I would have to go onto Lantus because NICE guidelines said so.

So having 2 weeks to do my research and with the help of you good folks I presented my evidence that NICE did NOT discriminate, plus all the arguments that showed Levemir was the most suitable one for my particular year long circumstances and lifestyle. The answer came back that the local PCT had said that everyone MUST be on Lantus and that ALL CURRENT PATIENTS ON LEVEMIR WILL BE MOVED OVER TO LANTUS. If the Dr prescribed otherwise he would be in trouble. It cannot be a monetary decision as there is little difference.

My Practice Manager has agreed to make a case to the PCT for me to have the drug I want. Diabetes UK Careline have not heard of this elsewhere in the country and have referred me to the local PALS office who I will be contacting as soon as I have hit the keys as hard as I can in typing this!
I understand that I can appeal to the Chief Executive of my PCT if next weeks response is still a "NO". Obviously the post code lottery is still operating well in Kent!

 

[Northerner]

That is outrageous! How can they possibly justify such a blanket decision? Very angry on your behalf, I don't see how they can do this 😡 Can you contact others in your area who might be getting moved from levemir to lantus? That would be particularly bad if they had established good control using it.

Good luck with your fight!

 

[Pumper_Sue]

Have you actually contacted your PCT yourself Pippa? If not do so.
This all sounds very silly to me, what are they going to do when someone turns round and say's I'm allergic to Lantoss?
A PCT can not make a clinical descion like that either. It's a bit like saying on x antibiotic will be prescribed and hard luck if you are allergic to it.
Have you also contacted NICE and the dept of health regarding this issue?

 

[Twitchy]

Get you MP on the case too!! Ask them to ask the health secretary if diabetics are having inappropriate insulin regimes imposed as a cost cutting measure...hopefully that will get them backing down promptly!!! 😡 best of luck!!!

 

[everydayupsanddowns]

Get you MP on the case too!! Ask them to ask the health secretary if diabetics are having inappropriate insulin regimes imposed as a cost cutting measure...hopefully that will get them backing down promptly!!! 😡 best of luck!!!

That's the weird thing Twitchy... the cost is so similar as to make no difference (according to BNF there's 50p in it for a box of cartridges). If they were insisting on HumulinI or Insulatard I could understand it a bit better.

Maybe they've done a deal with Sanofi?

 

[trophywench]

WHAAAAAAAAATT ?

I venture to suggest they must all be male and really do use their bollards for brains .......

Some twerp who knows F all has probably told em they are completely interchangeable.

Contact everybody, including your local Press .....

and good luck and also {{{Hugs}}}

 

[Abi]

I went to an evening event mainly about blood glucose monitoring yesterday. A rep from Sanofi Aventis was there demonstrating their new metre. I started to stir regarding lantus and mentioned that I am o n levemir. He kept on quoting the blurb about how in doses of 0.35 U per kg their product always lasts 24 hours wherea lev is only 14 to 16. He could not seem to comprehend that real life patients are not lab rats and that the above is about as useful as a chocolate teapot if you 're on unusually low doses. I,m afraid it's the same robotic mentality undermining these sweeping prescribing decisions. No two patients with diabetes are alike and I suspect insulin profiles vary enourmously Even Aventis admitt that in some patients lantus action is unusually prolonged or truncated. Oh and the berk kept on about how you need 77 percent less lantus than levermir and couldn't even see how as a person using the enourmousdose of 10 to 12 units I wasn't particularly impressed? kept on saying what acost saving this is
Oh but the BG star strips are 50 % more than themylifepura and wavesense strips
Personally I'd rather he kept his costly strips as I can do my own sums, and I continue to have an insulin that works for me
Another thin to consider is that a generic lantus is coming onto the market soon so even cheaper
Personally if anyone tries to force me off and insulin with which I am happy_,--- I"ll ?ithe go straight ,bac.k onto pump costing countless times more or be contacting A solicitor to find out what action I can take in the event of DKA due to refusing an insulin which is forced on me
Utterly unacceptable

 

[trophywench]

Hey Abi, which hat were you wearing whilst speaking to the ejit from Sanofi?

And was it the same one who told Patti she obviously wasn't screwing her pen needles on right?

 

[Abi]

Doctor and patient all at once
It wouldn't be the same one Patti saw as I'm in West Wales

 

[DeusXM]

Frankly if I encountered a rep from Sanofi I'd ask them why they'd spend all that money developing Lantus and then somehow not think to allocating the budget towards a half decent pen ie one that can actually inject accurately or doesn't have the numbers rub off after two weeks. I'd love to be able to use Levemir purely for the pens but unfortunately I'm one of those rare individuals for whom Levemir simply doesn't work.

 

[mcdonagh47]

Oh and the berk kept on about how you need 77 percent less lantus than levermir and couldn't even see how as a person using the enourmousdose of 10 to 12 units I wasn't particularly impressed?

perhaps you should have been impressed, dropping from 12u of levemir to 3 of Lantus ?

 

[trophywench]

and how is 18u of Lantus a day changing to 18u of Levemir a day (over 2 jabs) ANY sort of a reduction?

Cos that's what happened to me! - started off on 20u Levemir when I swapped and was hypo-ing all over the place!

Idiots.

Patti was told this in a letter Abi after she wrote and complained of their Apidra pens leaking up to 3u at a time! She's got round it now by using Apidra cartridges in a Humapen cos someone else did that to get round it too. (there's instructions for it somewhere kicking about certainly on t'other DSF if not here as well - if anyone wants to know, dunno if it works for Lantus cartridges though?)

 

[caroleann]

I am spitting feathers - very cold ones at that! Have just come from meeting with nurse over moving to basal/bolus regime from a mix. I was told 2 weeks ago I would have to go onto Lantus because NICE guidelines said so.

So having 2 weeks to do my research and with the help of you good folks I presented my evidence that NICE did NOT discriminate, plus all the arguments that showed Levemir was the most suitable one for my particular year long circumstances and lifestyle. The answer came back that the local PCT had said that everyone MUST be on Lantus and that ALL CURRENT PATIENTS ON LEVEMIR WILL BE MOVED OVER TO LANTUS. If the Dr prescribed otherwise he would be in trouble. It cannot be a monetary decision as there is little difference.

My Practice Manager has agreed to make a case to the PCT for me to have the drug I want. Diabetes UK Careline have not heard of this elsewhere in the country and have referred me to the local PALS office who I will be contacting as soon as I have hit the keys as hard as I can in typing this!
I understand that I can appeal to the Chief Executive of my PCT if next weeks response is still a "NO". Obviously the post code lottery is still operating well in Kent!

Hi i live in maidstone as well im also on levimir nothing has been mentiioned to me,if you not already could you not ask for a referal to be seen by a dsn at the hospital they are realy good ,i see my dsn on the 28th so i will ask her about this lantus thing.

 

[Abi]

Please let us know how both of you get on
I really can't stand this dumbed down, making it easy for healthcare professionals and saving NHS a few pennies, business. All people with diabetes are different and every manufactured insulin should be available according to individual needs

 

[pippaandben]

Caroleann - I did contact the Diabetes Clinic at the hospital as I was under them when first diagnosed. That was when I was initially told NICE guidelines said it had to be Lantus. A "proper" DSN rang back and despite telling her my reasons for Levemir still stated she would recommend Lantus. BUT would not give a reason - that is the problem NOBODY is giving me a medically based reason. Perhaps there is something in me that makes me unsuitable - but it would be better if I knew.

 

[Abi]

Well generally lantus is supposed to give a better and closer to 24 hour profile than levemir if used once daily. But it doesn't work well for everyone. Some people do not get 24 hour basal cover, or they get unpredictable results with frequent hypos, of they find it stings, or their night time requirements differ from daytime in which case split levemir works best, or they need to frequently adjust basal due to exercise and lantus takes 2-3 days to level out again after an adjustment

So it's highly dangerous to make sweeping generalisations about what suits somebody and what should be available

 

[bennyg70]

I think theres a few deals being pushed through with Sanofi, The way apidra was pushed on me for no apparent reason after gaining decent control with Novarapid for instance. Once Id tried it however and it showed that it wasn the insulin for me, I soon got switched back..

 

[PattiEvans]

It wouldn't be the same one Patti saw as I'm in West Wales

Sanofi Aventis written response to my complaint about their dire pens was from their head office and was both patronising and unfounded in fact. To tell an experienced diabetic that they don't know how to screw a needle on is completely ridiculous. I suggested in my response that if they're so difficult to screw on then they looked to their design.

 

[DeusXM]

To tell an experienced diabetic that they don't know how to screw a needle on is completely ridiculous. I suggested in my response that if they're so difficult to screw on then they looked to their design.

It's also completely besides the point as far as they're concerned. There are far more people with diabetes who are in their senior years and could very possibly have attendant vision problems and mobility/flexibility issues from both plain old age or complications. That's the reason why most meters make a big song and dance about having a big clear screen. By all means there should be specialised products for those of us with full dexterity and vision (plus a specialised range for those who are less fortunate) but the 'standard' range should be accessible to all. It's no different from a public building having step-free access.

 

[PattiEvans]

Exactly so there should be no margin for error screwing needles on should there?

It was a load of twaddle anyway, their pens were useless and leaked.