Petition for the limits on prescriptions for testing strips to be removed....

[koko]

Hi all

I am completely new to this so thought I should start by saying hello. I'm 24 and have type 1 and was diagnosed exactly 14 years ago last month. I also have Poly Cystic Ovarian Syndrome (PCOS) which if anyone has this and type 1 or 2 knows it affects your control in quite an adverse way due to hormonal swings.
My PCOS was only diagnosed at the beginning of 2010 when I went to the GP about my erratic periods and she asked me if I had always suffered from Acne.
I already knew I had it but my diabetes consultant/s at the time refused to accept this or even test for it one even quoting the problems I was having with control were all my fault which I knew was not the case. In 2009 I asked this same consultant for the test again and I quote she said "your an adult now, hormones do not affect your diabetes anymore" I subsequently walked out and never saw her again and returned to my original consultant who after years of blaming my poor control on me finally admitted he had got it wrong and apologised.

Anyway the only thing that has kept my BM's and HbA1c at a good level is doing 10+ BM's a day. My BM's swing uncontrollably some days. My reading can be 20.1 so I will do 4 units of novorapid without food and an hour later my BM will have risen to 25.9 so I will do 5 units and again it won't move so I will do another 5 units. This can go on for hours. I have tried everything from changing my diet to constant night time BM's absolutely nothing changes the outcome.
And in the last few weeks I put my repeat prescription into the GP for testing strips and only received 3 boxes of 50 strips supposed to last me for 6 weeks. I get through almost 3 boxes in just over week sometimes! My previous prescription was for 10 boxes and they changed this without even contacting me! This has caused me no end of worry and stress!
I didn't get anywhere with the GP and have another appointment tomorrow. I am getting sick to death of the way diabetics are being vilified by the Government and the NHS, my consultant has told me on a number of occasions the diabetes care is this country is way below standard.

I am asking you to please sign the following petition and to pass it round to friends and family - http://epetitions.direct.gov.uk/petitions/21905.
If my GP still refuses to do anything I will be speaking my local MP and other groups this isn't going to be something I am going to give up on. Its not fair on any diabetics.

Thank you!

 

[trophywench]

Hi Koko - so what are you taking for the PCOS? - as I have heard it say that metformin actually assists?

Can you not get your DSN or consultant to write to your GP and say that you need X number of test strips a month? Mine would if I needed to ask em to!

As it happens I only get 150 at a time and they only do repeats of up to 6 x - but I can order em as often as needed. And then when I put in the order for the last one on repeats, the GP just goes into the repeats screen and writes up another 6 x.

 

[cherrypie]

Hi Koko - so what are you taking for the PCOS? - as I have heard it say that metformin actually assists?

Can you not get your DSN or consultant to write to your GP and say that you need X number of test strips a month? Mine would if I needed to ask em to!

As it happens I only get 150 at a time and they only do repeats of up to 6 x - but I can order em as often as needed. And then when I put in the order for the last one on repeats, the GP just goes into the repeats screen and writes up another 6 x.

Hi Koko and welcome to the forum.
I hope you don't drive as this requires further testing. Is your GP aware of his responsibility to provide test strips if you do?
Get the consultant to write to the GP as most Type1's do if they are refused a suitable number of test strips.
There are a lot of petitions doing the rounds regarding test strips and it is a pity that they cannot be merged into one document to get a lot more signatures.

 

[koko]

Hi Guys,

I have asked my diabetes to nurse to write a letter but it hasn't done anything yet but that could be down to how useless my GP surgery is with admin I have had to be on the land line to my consultants office while on my mobile to the GP while they fax a prescription request through after waiting over 6 months for it and constantly being on the phone to both offices. I have also left a message with my consultants secretary and hoping that gets me somewhere.

I have tried metformin a couple of times and it just hasn't agreed with me. The first time I tried it for a month and I felt like my stomach was ripped out with a hot poker the second time I could barely get out of bed. My consultant did say it just doesn't work for some people, I was really hoping I was one of those people it worked for. But I've never been able to take anything that might upset my stomach.

Because of the problems I have had with my diabetes I have put off learning to drive for a long time it was only recently that I and my consultant felt it was safe for me to do so, then the new rules came in and that's gone out the window. My last HbA1c was 7.0. Its just one thing after another at the moment!

 

[Robster65]

Hi koko. Welcome 🙂

I'm not sure the petition will help much but it's not an acceptable situation when your GP does all they can to make life difficult.

Is there a possibility of changing surgeries ?

Rob

 

[Northerner]

Hi Guys,

I have asked my diabetes to nurse to write a letter but it hasn't done anything yet but that could be down to how useless my GP surgery is with admin I have had to be on the land line to my consultants office while on my mobile to the GP while they fax a prescription request through after waiting over 6 months for it and constantly being on the phone to both offices. I have also left a message with my consultants secretary and hoping that gets me somewhere.

I have tried metformin a couple of times and it just hasn't agreed with me. The first time I tried it for a month and I felt like my stomach was ripped out with a hot poker the second time I could barely get out of bed. My consultant did say it just doesn't work for some people, I was really hoping I was one of those people it worked for. But I've never been able to take anything that might upset my stomach.

Because of the problems I have had with my diabetes I have put off learning to drive for a long time it was only recently that I and my consultant felt it was safe for me to do so, then the new rules came in and that's gone out the window. My last HbA1c was 7.0. Its just one thing after another at the moment!

I would write a letter to the practise manager detailing your problems with their terrible admin - might also be worth contacting PALS. It sounds like you have a particularly bad surgery - it is such a shame that things are so variable up and down the country. My surgery are very good on the whole and I get 300 strips per prescription.

As for metformin, it might be worth trying the slow-release form (Glucophage SR) if you haven't already done so - some people are able to tolerate it much better 🙂

 

[koko]

Hi koko. Welcome 🙂

I'm not sure the petition will help much but it's not an acceptable situation when your GP does all they can to make life difficult.

Is there a possibility of changing surgeries ?

Rob

Hi Rob

I'm not sure what the petition will do either just feel I need to do something. Not long before I was diagnosed you couldn't get pen needles on the NHS when they cost almost the same as syringes there was a rally in London and soon after that pen needles were available.
I will be speaking to my local MP who before the Tories came to power was shadow secretary for health so I am hoping he will be able to give me some advice.
Not much possibility of changing surgeries at the moment but it is something I am going to look into. The really annoying thing is I actually really like and trust my GP, this is the first time I have ever had a problem with her and she's sworn her hands are tied. So I am just knocking on any door possible at the moment.

Kay

 

[koko]

I would write a letter to the practise manager detailing your problems with their terrible admin - might also be worth contacting PALS. It sounds like you have a particularly bad surgery - it is such a shame that things are so variable up and down the country. My surgery are very good on the whole and I get 300 strips per prescription.

As for metformin, it might be worth trying the slow-release form (Glucophage SR) if you haven't already done so - some people are able to tolerate it much better 🙂

Hi Northerner

I have tried to contact PALS last week actually and they haven't gotten back to me. You've reminded me I need to chase them! 🙂

I haven't been told about the slow release metformin, I have a appointment with my consultant in Jan and will mention it to him.

The NHS area that I am in is well and truly broke. We lost our hospital a couple of years - it was a really good hospital always clean, Dr's and nurses always caring and listening - now we have to go to a hospital miles away that is down a narrow Victorian lane next door to a large football stadium and the hospital is dreadful and can't cope. Everything is being cut round here, every week there is something new!

I have mentioned the appalling admin to various Dr's they always say they know its bad but nothing ever happens. And they make it very clear you will be removed from there patient list if you complain! Even nicely!

Think I am just a bit fed up!

K X

 

[Pumper_Sue]

Have you done any basal testing? Or even considered using a different basal insulin or even splitting the dose?
Must admit I'm surprised that anyone would inject more insulin within 1 hour of the intial injection stacking springs to mind and a massive rebound.😱
I also wonder about an absorption problem as well has this been exsplored with you?

 

[margie]

If you do try the slow release metformin then some Dr recommend you start with a low dose and slowly increase it - that gives the body some time to try and adjust.

Hope you have some success with getting more test strips.

 

[koko]

Have you done any basal testing? Or even considered using a different basal insulin or even splitting the dose?
Must admit I'm surprised that anyone would inject more insulin within 1 hour of the intial injection stacking springs to mind and a massive rebound.😱
I also wonder about an absorption problem as well has this been exsplored with you?

Yes, yes and yes many times. I do have unusually big hormonal swings and an awful lot of stress in my life at the moment. I was told by both my consultant and my diabetes nurse to do those units when I am having highs as I am prone to being DKA very quickly. I have never had a massive rebound yes occasionally I will have a hypo hours later but nothing substantial. Absorption is a big problem with me and that has been put down to the PCOS. I am always very careful to alternate injection sites and never do my Novo Rapid and Glargine in the same site. One day my blood sugars can be really good, not going about 9.0 and being around 5.0 before meals then the next day out of the blue I can be 18.9 which will increase and increase and increase no matter how many units I do.
My consultant said last time I saw him not all diabetics are the same nor are peoples hormonal swings or stress levels and that's an area that needs to be looked into more. I have offered myself as a guinea pig! I guess I am just one of the unlucky ones.

 

[koko]

If you do try the slow release metformin then some Dr recommend you start with a low dose and slowly increase it - that gives the body some time to try and adjust.

Hope you have some success with getting more test strips.

Thank's for the advice Margie 🙂

 

[Pumper_Sue]

Koko, have you ever looked into changing to a different type of insulin ie, human or animal insulin? I know when my insulin was changed I used to go to 0 -60 and back within an hour. There are a lot of reports from patients on others forum who have massive problems with Lantus. So keep an open mind and explore all possibilities and not just hormones. Personally a change from 1 day with good control the next not and so on would make me want to explore the insulin you are using.

 

[koko]

Koko, have you ever looked into changing to a different type of insulin ie, human or animal insulin? I know when my insulin was changed I used to go to 0 -60 and back within an hour. There are a lot of reports from patients on others forum who have massive problems with Lantus. So keep an open mind and explore all possibilities and not just hormones. Personally a change from 1 day with good control the next not and so on would make me want to explore the insulin you are using.

Believe me I have a very open mind about it and have tried other insulin's. The PCT where I am no longer offers animal insulin it was stopped a couple of years ago. I have had many tests in the last year on my hormones.
I feel like you are attacking me. I have tried everything! I have been on Levemir and back to lantus! I have stayed in hospital for 7 days while they have monitored my blood sugars levels every 2 hours 24 hours. I fought for almost 10 years to get the test done for PCOS, mine is very sever I can't have children, I have sever acne on my face and back. I can't take the pill to help it as I have had a DVT. I have been blamed for my problems when it wasn't my fault my consultant finally admitted he was wrong and apologized profusely for everything he put me through. I spent from the ages of 13 - 16 in and out of hospital every month when my period was due. Another consultant finally changed my insulin from M3 to separate injections but then I found it this was just M3 by any other name. I was then put on another long acting (can't remember the name have been through so many) and Novo rapid then I was put on Glargine. Then at the beginning of this year I was put on Levemir but consultant wasn't happy about results of this so went back on Glargine. I get extreme shooting pain sometimes when I inject Glargine so believe me if there was anything I could try I would and I am in constant talks with my GP, consultant and diabetes nurse about different insulins.
I have done many hours of research and talked to other type 1's with PCOS across the world. Its just something there hasn't been a lot of research in yet.

 

[Northerner]

Hi koko, Sue was just trying to be helpful, but I can appreciate it must be difficult hearing suggestions for things that you have already tried and they have not succeeded - remember though that we don't know your full history so can only offer suggestions based on our own experience. I hope that you can get some better, appropriate treatment soon - new treatments and combinations of meds are being discovered all the time, so I hope that there is something that can give you much better and more predictable control and relief from your additional problems 🙂

 

[koko]

Hi koko, Sue was just trying to be helpful, but I can appreciate it must be difficult hearing suggestions for things that you have already tried and they have not succeeded - remember though that we don't know your full history so can only offer suggestions based on our own experience. I hope that you can get some better, appropriate treatment soon - new treatments and combinations of meds are being discovered all the time, so I hope that there is something that can give you much better and more predictable control and relief from your additional problems 🙂

Yes sorry, it is very frustrating. I think I have just had years of people telling me what to do it makes me snap sometimes or read into things the wrong way.
I would be the first one knocking down the door if there was a new treatment, god I hope there is soon! I have sore fingers from the amount of BM's I do!

I am sorry Sue! You probably feel like you've been attacked!

I will make sure I take a breath in future before replying to anything!

 

[Northerner]

Yes sorry, it is very frustrating. I think I have just had years of people telling me what to do it makes me snap sometimes or read into things the wrong way.
I would be the first one knocking down the door if there was a new treatment, god I hope there is soon! I have sore fingers from the amount of BM's I do!

I am sorry Sue! You probably feel like you've been attacked!

I will make sure I take a breath in future before replying to anything!

I think it's very understandable you feel like you do after so many years Hopefully one of these days you'll come across something that really helps, and I hope you find it soon. 🙂

 

[Pumper_Sue]

Yes sorry, it is very frustrating. I think I have just had years of people telling me what to do it makes me snap sometimes or read into things the wrong way.
I would be the first one knocking down the door if there was a new treatment, god I hope there is soon! I have sore fingers from the amount of BM's I do!

I am sorry Sue! You probably feel like you've been attacked!

I will make sure I take a breath in future before replying to anything!

Hi Koko,
no problem,
If it is any help to you though animal insulin is still available. Well if it isn't I dread to think what I'm using

 

[koko]

I think it's very understandable you feel like you do after so many years Hopefully one of these days you'll come across something that really helps, and I hope you find it soon. 🙂

Thank you Northerner I wish more people were like you 🙂. I will be asking about the slow release Metformin at my next hosp appointment. Sounds like its worth a shot from what I have been reading.

 

[koko]

Thank you Northerner I wish more people were like you 🙂. I will be asking about the slow release Metformin at my next hosp appointment. Sounds like its worth a shot from what I have been reading.

Ha ha! Oh dear that wouldn't be good😱! There was a big thing around here with notices up at the clinic saying they were no longer going to be supplying animal insulin and anyone on it would have to change to synthetic maybe they decided not to go ahead. I remember thinking that was unfair to people on animal insulin that it worked for. I will ask my diabetes nurse but they've always kind of shied away from animal insulin.
I also imagine it being more stable maybe that's just my strange mind but thinking if it works for animals its get to be better than man made.

Ooh yes I had some luck with the strips finally! My GP has agreed to add another 2 boxes to my script for a month so am getting 5 boxes now and I told her I would see how that goes. Will still be talking to my MP. I spoke to my pharmacist yesterday he told me that only 2 out 100 will get more strips which I think is terrible he was already fighting on behalf of a guy who had had the same think happen, apparently a really sporty guy with good control but does lots of things like bike riding, mountain climbing etc.. who also needs to test a lot otherwise he wouldn't be able to do those things. Your damned if you and damned if you don't! 😡