Diabetes meds problem..

[becca19962014]

So my healthboard (in Wales) are stopping funding glucophage slow release tablets - they're advising all pharmacies to stop stocking it. They claim this is due to new research saying they're unnecessary. However, having asked in the pharmacy they've told me the reality is the other brands are more than twice as expensive and they know nothing of this research saying they're better.

Can anyone help me word a complaint? People likely won't remember but when I was put on the cheaper generic metformin brands I ended up hospitalised with severe vomiting and dihorrea for a week - think blood and green bile for over three days; I was really sick.

The hospital said it must a dodgy kebab (my diet doesn't vary at all and I never eat anything that may be slightly off so there's no way) and there and was no way it was the cheaper tablets as they're "exactly the same" however, all that changed was I had started on the cheaper alternatives.

My GP has mentioned if my diabetes gets worse I'll need a pump, but they won't fund those anymore either and other meds are being changed to generics too and working less well - probably due to a condition I have that effects how I digest meds.

Any advise on how I can handle this? My GP is leaving and the others there are not going to be fighting my corner like they have. The next nearest GP is many miles away and I don't want to be deregistered which is basically how they handle complaints now.

 

[grovesy]

Do you mean the Brand Glucophage Slow Release, or any Generic Slow Release Metformin. I would have thought if you have reactions to others that is good reason to continue what suits you. In England CCG's often have preferences to various brands of drugs and test strips. Why not contact the Diabetes UK helpline.
I have not heard of any Type 2 been given an Insulin pump, even all Type 1 get them.

 

[Kaylz]

if there is a reason you cant take the other ones then you need to tell your GP this and fight to stay on what your on

As for a pump, are you on insulin already? us Type 1's have a hard enough time at times getting approval for a pump and by any means it isn't a quick process so I don't understand why they've said that, are you sure they didn't mean they may want to start you on insulin?
xx

 

[everydayupsanddowns]

Sounds like you are worried about these changes @becca19962014 - and I can completely understand why.

I agree with @grovesy that the Diabetes UK helpline might be a useful source of information and help about how to appeal these changes.

Personally I think it is really important that healthcare is tailored to each individual and that there is room for manoeuvre around any ‘blanket changes’.

Have you had a conversation with your GP about any possible alternatives to the tablets you tried last time? Perhaps you were sensitive to one ingredient in the other brand?

 

[becca19962014]

To answer questions. The medication that's being stopped is the glucophage slow release. They want everyone on the generic only. Which I'm not able to take, there are two generics available only, both landed me in hospital, but the diabetes nurse in hospital both times said it was impossible it was the medication that was to blame, despite that being the only change in my diet. My GP ignored their advice to put me on generic and there was other inappropriate suggestions in the discharge letter as well (don't know what).

I'm not on insulin at the moment. My other disabilties severely effect my hands and I think that's why GP was at one point mentioning a pump. However, the healthboard wants those stopped for everyone as well.

I'm not in England. I'm in Wales and it's very different here.

My GP is due to retire soon, and whilst for now they will support me having prescription for glucophageSR and there's a pharmacy that continues to get stock I'm ok, however, after Christmas the intention is it becomes special order only which requires prescription from a consultant which I'm not able to get to (no longer in my county and I can't travel - physically or financially (no free hospital transport here anymore)) and will take at least seven days to get in. All my meds are daily prescriptions due to risk of overdose so a seven day order time is useless in those circumstances. Mental health support has ended, again my GP has been told to stop the daily prescriptions but refuses and there have been issues with other meds I take being too expensive as well (again GP just ignores them) but the worry is what happens when they retire? When I asked the health board about it they said there's no difference and just to try the generics again - I'm not as well as I was last time I took them and this time the problems could be life threatening - it took a GP physically taking me to hospital before they'd admit me as they told me to just drink dioralyte and eat toast and bananas and I was fine (dioralyte isn't suitable for diabetics and I cannot have bananas as they cause me to have seizure causing hypers!).

I'll try the helpline later as I need to go out this morning for medication and food.

Thankyou for the replies.

 

[Kaylz]

I'm not on insulin at the moment. My other disabilties severely effect my hands and I think that's why GP was at one point mentioning a pump. However, the healthboard wants those stopped for everyone as well.

there are aids that make injections easier and I know of people with mobility issues in their hands etc that use a pen to inject as they really don't require much pressure to deliver the dose

dioralyte isn't suitable for diabetics

while yes the patient information leaflet states that it also states "The use of Dioralyte in patients with these conditions should be supervised by a physician." so it isn't impossible to use as a diabetic, I'm not sure on the reasons though

I'm not in England either, I'm Scotland and our healthcare varies widely by area alone in just Scotland
xx

 

[DaveB]

Hi. I can understand the NHS in Wales changing to generics where possible. My English surgery changed my Glucophage to generic Metformin SR many years ago and I've had various brands since some called SR and some MR or ER. I'm very surprised that you have a problem with those generics when Glucophage SR is OK. What you have been told about pharmacies being told to stop stocking Glucophage etc is pure rubbish and someone has misunderstood that they are moving to generics which all the NHS has been doing for years to save money without normally affecting the medications efficacy. When you are a T2 and being told you may go onto a pump is equally silly. I know long-term T1s who are having to argue for a pump due to the cost. No way will a T2 be offered a pump. I think you need to check with your local pharmacy that they are still stocking one of the Metformin 'SR' brands and discuss that with the GP if they are. I think you should try one of the other brands again? If pharmacies have been told to stock stocking SR variants then you do need to take up the battle with the Welsh NHS using Diabetes UK to help.

 

[grovesy]

Hi. I can understand the NHS in Wales changing to generics where possible. My English surgery changed my Glucophage to generic Metformin SR many years ago and I've had various brands since some called SR and some MR or ER. I'm very surprised that you have a problem with those generics when Glucophage SR is OK. What you have been told about pharmacies being told to stop stocking Glucophage etc is pure rubbish and someone has misunderstood that they are moving to generics which all the NHS has been doing for years to save money without normally affecting the medications efficacy. When you are a T2 and being told you may go onto a pump is equally silly. I know long-term T1s who are having to argue for a pump due to the cost. No way will a T2 be offered a pump. I think you need to check with your local pharmacy that they are still stocking one of the Metformin 'SR' brands and discuss that with the GP if they are. I think you should try one of the other brands again? If pharmacies have been told to stock stocking SR variants then you do need to take up the battle with the Welsh NHS using Diabetes UK to help.

I too have over the last 10 years had many differnt brands of generic Metformin Slow release over the years as @DaveB says. The last few years my CCG has changed the brand more than once, recently there was a supply problem with current brand my Pharmacist just gave me an alternative.

becca
I suspect your GP and Pharmacy are not treating you as an individual.

 

[becca19962014]

It's the carrier in the generics I'm allergic to, it's happened before with generics. The current pharmacy/GP aren't going to give me medication that puts my life at risk just to prove a point.

My GP recognises my needs as does a pharmacy but the healthboard contacted the pharmacies to say not to stock it as its not being prescribed anymore - I saw the memo sent, so whoever said it was rubbish is wrong and I don't appreciate being called silly. I was at the discussion re meds bring stopped and pump with carer who knows my needs, recorded the information for me due my disability and, just because I have severe mental health problems doesn't mean you should call me names.

 

[Pumper_Sue]

I'm not on insulin at the moment. My other disabilties severely effect my hands and I think that's why GP was at one point mentioning a pump. However, the healthboard wants those stopped for everyone as well.

Hello Becca,
sorry to hear of your medication problems.
Just so you know though it's very rare for someone with type 2 diabetes to be given a pump and as you say you have dexterity problems with your hands it's very doubtful you will be able to use one any way, a simple syringe or a pen injector would be your options if or when you get as far as needing insulin. There are plenty of other meds available to try first though before you go down the insulin route.

 

[Pumper_Sue]

My GP recognises my needs as does a pharmacy but the healthboard contacted the pharmacies to say not to stock it as its not being prescribed anymore - I saw the memo sent, so whoever said it was rubbish is wrong and I don't appreciate being called silly. I was at the discussion re meds bring stopped and pump with carer who knows my needs, recorded the information for me due my disability and, just because I have severe mental health problems doesn't mean you should call me names.

Hi again Becca, I think you need to read the post again no one has called you silly.

 

[Docb]

Hi Becca, your post prompted me to go back to first principles so I looked up the formulations of glucophase SR and Sukkarto SR which I take. Both being slow release metformin I assumed they were the same but I was amazed to find that whereas glucophase has 3 extra components over and above the metformin, the sukkarto has 12. Don't know what brands you have been offered but it might make sense to check out the formulations because although they contain the same amount of active ingredient they may be very different when it comes to the additives.

My first thought was that metformin is metformin is metformin but maybe that is not the case.

 

[grovesy]

Hi Becca, your post prompted me to go back to first principles so I looked up the formulations of glucophase SR and Sukkarto SR which I take. Both being slow release metformin I assumed they were the same but I was amazed to find that whereas glucophase has 3 extra components over and above the metformin, the sukkarto has 12. Don't know what brands you have been offered but it might make sense to check out the formulations because although they contain the same amount of active ingredient they may be very different when it comes to the additives.

My first thought was that metformin is metformin is metformin but maybe that is not the case.

I have read a few people who seem to react to the so called fillers in some of the generic Metformin Slow Release, the only difference I have noticed in the numerous brands I have had over the years is the size of the tablets.

 

[everydayupsanddowns]

I saw the memo sent, so whoever said it was rubbish is wrong and I don't appreciate being called silly. I was at the discussion re meds bring stopped and pump with carer who knows my needs, recorded the information for me due my disability and, just because I have severe mental health problems doesn't mean you should call me names.

Sorry you feel some of the responses you received were inappropriate Becca, but it was the suggestion of a pump that was described as silly, not you... and that’s only because a T2 would almost never have access to an insulin pump on the NHS. Plus as @Pumper_Sue says, you need to be quite dexterous to cope with regular infusion set changes, reservoir filling etc - so it doesn’t seem like a great fit for you in many ways.

We really want to support you to keep access to the meds that suit you. Sometimes pharmacy staff or nurses seem to make statements on the basis of whether they will be a quick end to the conversation rather than being 100% accurate (eg I’ve been told there was a ‘manufacturing problem’ with some of my repeat items, when I know for sure that it was just a warehouse / stock availability issue because I was in contact with the manufacturer about something else!).
But if you’ve seen the memo in question then it’s going to be a matter of battling with the CCG to ensure you get the medication that you need. There’s no cost saving in switching you to a tablet that means you’ll be calling out ambulances right left and centre because of your reaction!