Gp refusing the drugs my endo recommended

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Gottapee

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I’m so frustrated right now and this may be equally a question and a rant.

I have been struggling for two years to get my numbers under control and ultimately failed. I’m mid 30sf type 2 and have tried diets and exercise, metformin, jardiance and am now on aloglyptin which is doing very little. I also have a huge trauma response to taking oral meds (long story) which means an injectable med would make my quality of life better.

My bloods have huge spikes ( up to mid twenties) after eating and after being told the wait for an nhs referral to an Endo was 30 weeks at least I went private. The Endo agreed that something like liraglutide would help me massively and also recommended testing for monogenic diabetes.

So I phoned my gp today and they have refused to give me the prescription. They say it’s not something they usually do. I am going in for an appointment on Tuesday to discuss this but it feels so crazy and unfair. The Endo is the expert, and they are refusing his advice.

Is there anything I can do or way at my gp appointment or am I stuck being out of control forever?
 
I know the genetic testing is very expensive and most people struggle to get it done on the NHS. It is also quite rare, the the chances of a positive result from it are low for an expensive test.
As regards the Liraglutide, you might be best talking to the Diabetes UK helpline people to find out where you stand legally from being recommended medication by a private consultant and your GP being unwilling to fulfill it. It may be that that medication is not on their prescribing list and therefore they are unable to but there might be an equivalent brand which is or it may be that they are simply not prepared to listen to a consultant that they have not sanctioned. I imagine there is the option for the private consultant to issue a private prescription but no doubt at a significant cost.
 
Gottapee said:
I’m so frustrated right now and this may be equally a question and a rant.

I have been struggling for two years to get my numbers under control and ultimately failed. I’m mid 30sf type 2 and have tried diets and exercise, metformin, jardiance and am now on aloglyptin which is doing very little. I also have a huge trauma response to taking oral meds (long story) which means an injectable med would make my quality of life better.

My bloods have huge spikes ( up to mid twenties) after eating and after being told the wait for an nhs referral to an Endo was 30 weeks at least I went private. The Endo agreed that something like liraglutide would help me massively and also recommended testing for monogenic diabetes.

So I phoned my gp today and they have refused to give me the prescription. They say it’s not something they usually do. I am going in for an appointment on Tuesday to discuss this but it feels so crazy and unfair. The Endo is the expert, and they are refusing his advice.

Is there anything I can do or way at my gp appointment or am I stuck being out of control forever?
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Did you go to an endo that works for the NHS, or is exclusively private?
The usual way to beat the system is to pay for a private consultation, but they then refer you back into the NHS system, so you jump the waiting list.
Can he refer you back to your own doctor, which would mean him normally simply sending a letter?
 
Hi. I guess being recommended to have a 'glutide' implies you may have excess weight. Exercise will always work but the right diet will have more effect. Are you aware that the Carbs in our diet are the biggest offender for weight and blood sugar gain so these need to be kept down. Metformin and the gliptins may help but not by a lot. Jardiance can have more effect. So do keep the carbs way down and hopefully the surgery will prescribe the Glutide if it's still needed.
 
Looking back over your earlier posts you appear to have been doing all you can to get your blood glucose levels down, have you still been having less than 50g carbs per day which does suggest the possibility that you may be Type 1 or LADA in which case probably the only thing likely to help you is insulin.
Did you private endo not suggest that as an option.
If you are in Scotland then the system following having a private consult may be different which is why your GP is hesitant.
 
Sorry to hear you are having such a difficult and frustrating time @Gottapee :(

Have you had a copy of any letters your endo may have sent to your GP?

I wonder if it might be helpful to call the Diabetes UK Helpline on Monday (9-6) at the number at the top of the page to discuss things with them before your appointment on Tuesday?

Hope the appointment goes well, and you are able to move towards a satisfactory outcome.
 
travellor said:
Did you go to an endo that works for the NHS, or is exclusively private?
The usual way to beat the system is to pay for a private consultation, but they then refer you back into the NHS system, so you jump the waiting list.
Can he refer you back to your own doctor, which would mean him normally simply sending a letter?
Click to expand...
Hi there

I’ve done exactly what you said above. My private Endo did send a letter detailing exactly what he would like to happen, but they are not allowing me to access the med.
 
Leadinglights said:
Looking back over your earlier posts you appear to have been doing all you can to get your blood glucose levels down, have you still been having less than 50g carbs per day which does suggest the possibility that you may be Type 1 or LADA in which case probably the only thing likely to help you is insulin.
Did you private endo not suggest that as an option.
If you are in Scotland then the system following having a private consult may be different which is why your GP is hesitant.
Click to expand...
In the letter the endo also recommends c peptide and antibody testing to rule out type 1 or other subtypes and a referral to a monogenic specialist who happens to be very near me.

I’m not sure if they are doing to do these tests or referral - for now all I know about is that they are refusing the medication. It’s so frustrating.
 
Pumper_Sue said:
AS I understand it the medication is for type2 diabetics who are very overweight and have to follow a strict diet to comply with the NICE guidelines.
https://www.nice.org.uk/guidance/ta...ing-overweight-and-obesity-pdf-82609259121349

If you are not overweight so you do not need the medication, why have you not been offered insulin as you can not take oral meds?
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I am definitely not within perfect normal bmi range, but absolutely not morbidly obese by any means. They say they don’t want me to go on insulin because I’m “too young”.
 
Depending on your finances, would it be affordable to get the drug your endo recommended privately? If so, he could, I assume, prescribe it for you himself?

If then it 'does you good' maybe that would help convince your GP to make it available to you. But, as in one of the posts above, GPs cannot prescribe drugs on the NHS which breach Nice guidelines. Nice is 'supposed' to be based on medical considerations alone, but..... (!!) (as in, don't tell me cost does not play a factor in what they allow or not!!!!!)
 
DaveB said:
Hi. I guess being recommended to have a 'glutide' implies you may have excess weight. Exercise will always work but the right diet will have more effect. Are you aware that the Carbs in our diet are the biggest offender for weight and blood sugar gain so these need to be kept down. Metformin and the gliptins may help but not by a lot. Jardiance can have more effect. So do keep the carbs way down and hopefully the surgery will prescribe the Glutide if it's still needed.
Click to expand...
Thanks for this. I know it’s good advice but something that hasn’t worked historically. I am overweight, although not in the obese category and I already massively limit carbs and exercise and still see massive spikes (think going up 10-15 points) after a meal. Have been categorically unable to lose any weight at all despite all this, probably because my bloods are so all over the place.
Sadly I’m allergic to jardiance - my lips swell up and the skin starts peeling off my face - which is a shame because I had no gastric side effects. I also really struggle with oral meds.
 
Callista said:
Depending on your finances, would it be affordable to get the drug your endo recommended privately? If so, he could, I assume, prescribe it for you himself?

If then it 'does you good' maybe that would help convince your GP to make it available to you. But, as in one of the posts above, GPs cannot prescribe drugs on the NHS which breach Nice guidelines. Nice is 'supposed' to be based on medical considerations alone, but..... (!!) (as in, don't tell me cost does not play a factor in what they allow or not!!!!!)
Click to expand...
I think this will be my next step if the nhs still refuse. It seems the doctor who refused did it because they were not “comfortable” prescribing it to me… ( despite the fact I could actually just get it over the counter or online for weight loss )
 
Providing you take it under the medical management of your endo consultant then hopefully it will not have any (substantial) risks for you???

If it's available over the counter for other conditions, then it can't be that prohibitive cost-wise?

Try cautiously???
(Check what the AEs - Adverse Effects, ie side effects are, and that they don't make problems for you, and you know what you need to do if they do hit, etc etc - again, just being 'prudent' when starting on a new med.)
 
Gottapee said:
I think this will be my next step if the nhs still refuse. It seems the doctor who refused did it because they were not “comfortable” prescribing it to me… ( despite the fact I could actually just get it over the counter or online for weight loss )
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Maybe try the argument that you could just get hold of it and see what the effect is - but you'd far rather that it was done with medical supervision and have the GPs opinion on the results either that there was or was not any improvement with use of the drug.
 
Callista said:
(as in, don't tell me cost does not play a factor in what they allow or not!!!!!)
Click to expand...
NICE guidelines are based on cost/benefit analysis. So a medication may be more effective than an alternative, but, when costs are factored in, the benefits gained are not worth the extra cost. (See here)

This can be a difficult concept to get your head around, especially for a lot of members of this forum who are desperate, but you have to understand that, often, any perceived benefits of one drug over another is so marginal that it only becomes apparent in very large trials.

Don't get me wrong here, I am not in any way suggesting the medication suggested by @Gottapee's Endo are ineffective or inappropriate, I am just responding to a comment about how NICE guidelines are arrived at.
 
Gottapee said:
I am definitely not within perfect normal bmi range, but absolutely not morbidly obese by any means. They say they don’t want me to go on insulin because I’m “too young”.
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So it's ok to damage your kidneys and eye sight at a young age rather than give you insulin?
Sounds very odd to me.
 
Gottapee said:
I am definitely not within perfect normal bmi range, but absolutely not morbidly obese by any means. They say they don’t want me to go on insulin because I’m “too young”.
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What’s your actual bmi? The nhs has requirements that you have to meet related to weight and a1c to prescribe this class of drug. Perhaps you don’t meet them? Read the GLP-1 notes in the NICE guidance, screenshot below. You have to have tried lots of other medications before and have a bmi of 35, unless there’s a reason to avoid insulin.

 

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When you have your face to face appointment say you want the c peptide etc tests to rule out type 1 diabetes and if they refuse say you want it written into your records as to why they have refused. You don’t need to be confrontational but do be firm. My experience of getting diagnosis for a non diabetes illness was it only happened when I was firm that I wanted it absolutely ruled out instead of just being fobbed off. Turned out I did have it. The tests for type 1 are cheap and will give you an answer one way or another. From there you can decide on other medical approaches.
 
@Thebearcametoo - so how much does it actually cost a GP surgery to get these 2 tests, and does the NHS in the area @Gottapee lives/has their GP surgery reimburse every penny of that to the GP?

The reason why I ask is that my husband was recommended something (a one-off device rather than an ongoing drug) by the hospital following an operation and told to trot off to his GP to get it prescribed. However where we live, unless the GP had paperwork from the hospital saying 'Please prescribe this patient X to help with his Y that you already know he's been operated on for' - then they couldn't actually get the money for the X. As soon as the GP realised husband possibly had the Cancer in question of course he was immediately referred to the hospital for all the proper tests, and then the hospital saw to removing it and ongoing check ups for a few years before being handed back to the GP for follow ups - hence they hadn't ever actually treated him for it - and therefore would not be able to reclaim money for any prescriptions. Yes it's bats, when they're all working for the NHS - but just the way the primary and secondary care systems differ.

The consultant was not even aware of this stupidity and blew his top when told this saying 'he'd have to make enquiries' with the look of complete disbelief on his face at the time - and subsequently thanked husband for drawing it to the hospital's attention, since none of the medical or oncology drs/surgeons had a clue - and the CCG were read the veritable Riot Act about restricting payments to this extent. Our GP only knew immediately that they wouldn't get the dosh because they'd prescribed something else for a different patient, that they been refused reimbursed for.

The NHS works in mysterious ways, it's wonders to perform !
 
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