Hello...and a question

[Lord Moletrouser]

Hello all

I was diagnosed with Type 2 three years ago at the age of 69, even though my weight and BMI were perfectly OK, I took (and still take) plenty of exercise and She Who Must Be Obeyed has always been fanatical about "healthy eating." Just one of those things, I suppose.

Knowing that blood glucose test strips are expensive and that NHS money should not be wasted, I have never been profligate with them, testing maybe two or three times a week in order to satisfy myself that I was doing the right things, or maybe a few more times if I was feeling ill.

However, I have now been told by my local health centre that my free (as a pensioner) test strips and lancets have been withdrawn on the instructions of the Primary Care Trust. I have diabetic friends in other parts of the country who still receive their kit. Do I detect cost cutting and a post code lottery here?

 

[cugila]

Most definitely cost cutting, although it also comes down to why you test and what you do ?

If you only test a few times and do nothing much with the information then that is a waste of strips etc.......however, if you are pro-active and change things because of the readings in order to control your Diabetes then you should be allowed the strips.

We are all in a state of 'flux' at the minute because of the changes being made and proposed in the NHS.......it may get worse before it (hopefully) gets better !

There should, according to the Prime Minister's office be no blanket ban on anything by PCT's.... :roll:

There have been many threads here about this issue for some time now......I am sure we will see many more........ :shock:

Even worse is this from one of my News feeds.......

GPs are being banned from prescribing high-cost drugs approved by NICE as NHS managers seek drastic savings on prescribing budgets.

More than half of primary care organisations have brought in new blacklists within the past year, a Pulse investigation reveals.

PCOs are redrawing formularies in changes they estimate will slice £250m from this year’s drug budget. Responses from 134 PCOs under the Freedom of Information Act show that more than half have blacklists of drugs – in some trusts of more than 100 – that GPs are banned from prescribing.

http://www.pulsetoday.co.uk/story.asp?s ... d=36490539

 

[JUSTFOCUS]

Hi Lord
the strips thing is a big topic on this site as likeyourself Diabetec members on this forum seem to be getting denied strips and moniters .As you are so young :wink: I feel you should write a letter to your Practice manager explaining that you are a type 2 and you certainly would benefit from testing your Bg's and feel it could be a senscible thing to have on you at all times .Also if you drive it is even more important as this could lead to a accident and how would he/she feel if a non testing diabetic run over there child /wife etc. You are allowed all your meds for free as you are diabetic. Please please let us know we are a right crazy bunch on here and we all help each over .Welcome to you and good luck.
JF.

 

[Lord Moletrouser]

Hi JF

Thanks for that info. In all honesty my GP and the practice diabetes nurse were a bit embarrassed when I started to make a fuss about it...a classic case of "Ve are only obeying ze orders."

I contacted the PCT who sent me eight pages (!) of stuff which boiled down to (a) there is a Canadian study which says you can get paranoid and depressed about diabetes if you test too much and (b) you're costing us a lot of money.

For various reasons I have let things slide, but since I discovered this forum earlier today I have resolved to re-commence making a **** nuisance of myself (something which can be very satisfying in one's dotage!) about the issue. You raise some interesting points, and I will be quoting them when I write to my MP, the controversial (and drop dead gorgeous!) Nadine Dorries, who was a nurse an owner of a private healthcare company before becoming an MP, and probably knows a lot more about health matters than the incumbent minister.

Moley

Ps: Well, if you are a "right crazy bunch on here" I will feel perfectly at home with you all. They don't come much crazier than Lord Moletrouser, who once ran for the presidency of the National Association of Village Idiots but was disqualified on the grounds of over-qualification. Seriously, thanks for the welcome which is much appreciated.

Pps: My thanks too to Cuglia. I certainly try to be responsible with my test strips - even more so since I now buy them as I believe they are vital. And yes, I thought that was the real reason.......

 

[catherinecherub]

Have just read your post Ken.

The article in Pulse is a great worry. It is to be hoped that existing diabetics who are doing well on their medications will be allowed to continue. I feel for newbies who may have to take what is on offer as opposed as to what is suitable. It could become another postcode lottery like the test strips and only rich diabetics will get the best treatments. This is all happening before the PCT's are disbanded and the private sector get involved.

 

[cugila]

Lordy......
Testing.....how much is TOO much I wonder ?

Is it too much if you test and start to get great control of your Diabetes, good Bg levels ?

Is it too much if because you test you avoid complications, avoid further illness ?

Is it too much that because of that you save the NHS money by reducing treatment costs ?

Is it too much that because you test you have a better quality of life, a longer life ?

I suppose when you look at it like that.........Yeah......it's obviously too much.......... :roll:

As for the Canadian Study......that was slanted, and a load of %£&*%*$ !!!!!

Catherine.
Yes.....it's scary. Seems we who need the help are going to be denied it from the very organisation that we all trusted would be there for us in a time of need...... Looks like we will have to start rolling dice....because that's what it will become now......a gamble with peoples lives and health.

If I didn't have Byetta they would most certainly stick me on Insulin.....MUCH cheaper for them. Despite all my best efforts I cannot do without medication, so now I have something that works for me, they suggest taking it away. What sort of Health Service is that I wonder........

 

[zhaith]

Thanks Cuglia that article is kinda worrying to say the least, I was recently prescribed Sitagliptin and that's now on the list, and as i'm now well behaved and my levels are a lot better i've now been told that i should only be testing once or twice a week (currently i'm testing up to 6 times a day).
My DN did give me another strip prescription as I did have a hypo but she has already confirmed what my doctor says even though she does not agree with the restriction on test stips.

I wont be happy if they now decide to withdraw the sitagliptin as well, metformin cannot control my levels sufficantly and with my job insulin is really not an option.

Ho hum being diabetic doesn't get any easier does it!

 

[bowell]

If I didn't have Byetta they would most certainly stick me on Insulin.....MUCH cheaper for them. Despite all my best efforts I cannot do without medication,

Snap !!

Byetta thing Our nurse told me if I go onto Byetta next You will no longer need the Glicazide

SO YOUR TEST STRIPS WILL BE STOPPED AS TESTING IS NOT NEEDED WITH BYETTA ?:?

Insulin is your next step anyhow

Our nurse keeps trying to remove the test strips shes not even a DSN ?

Then go back to GP just to over rule it all ? Grrrrrrrrr

also on Sitagliptin (Januvia) baned list ???? :?

 

[cugila]

I have been on Byetta for over 2 yrs and throughout that time I have always had to test as the Byetta on its own in the evening was causing me to hypo all the time.......Byetta can and does cause hypo's whatever the info states. You DO need to test, especially if you drive. It was one of the first things I was given alongside the Byetta .....a prescription for test strips and Lancet's ! I get as many as I need.

There are others on it who have had the same problem and been told "Oh it doesn't cause hypo's"......Oh yes it does ! My Endo and SDSN will all agree with that. Even when carbs were upped to around 25g per meal I still couldn't avoid them so had to reduce the dose from 10ug to 5ug instead. At that time I wasn't on any other anti-Diabetic drugs either........

As for the strips, My GP is going to have a hard time stopping mine if it comes to that......I have known him for a long time and I have a few 'cards' tucked away........ :twisted: I'll cross that bridge if it comes to it.

 

[bowell]

My GP seems OK
Its the nurse thats my problem trying at every step to stop the strips

Agree with you 100%

Only just started the Sitagliptin (Januvia) and doing well,, Now thats on the RED list :?

Whats that old song ,, Times they are a changing :?

 

[Unbeliever]

I was en years younger than his lordship when I was diagnosed. like him I was not overweight and had always eaten a "good diet.

Upon accidental diagnosis I was told to eat starchy carbs with every meal and was overwhelmed with drugs in a sort of mad rush to reduce my BG readings,

i suffered reallly dreadful side effects and eventually reinal bleeding when my bg levels eventuallly came down too quickly. the initial laser treatment made things worse. For the first time in my life i put on weight.

My first diabetic doctor was very much a box ticker. I soon moved on to a more simpatheic Gp in the same practice but had great difficulty in fighing the systenm which was geared o diabetics only seeing the designated doctor.

in spite of this second GP trying o help things continued to deteriorate. however, I know he tried to help and would have got there in the end had he not had o fight prcice protocol.

Then I moved house and in my new practice i found that I was not allowed to speak to any of the Gps lest i offend the DSN or ask the Gps a question they would prefer not to answer.

Recenly. after 4 years of absolutely nothing working for me and my macular oedema resisting all treatment I was prescribed sitagliptin . I then discovered this forum As a result I reverted o the diet i had been following before diagnosis and my levels dropped and all was well For the first time i actually understood the value of testing.

Now ,after ruining my health by bad advice etc it would just be typical if I am to be denied sitagliptin and test strips. These threats may be down to the present government but I feel that I owe nothing to the previous system either.
My own persistence and the help of some concerned hospital staff allowed me to find the way back.

Why is there never any happy mediium? One lot threw money around without checking whether the results were effective and the others want to throw the baby out with the bathwater.
They really don't take this serious disease very seriously do they?

A great deal of damage was done by portraying diabees as a "lifesyle -induced" disease. I can understand why some tyoe !s would prefer o disance themselves from type 2s.

I don't think certain other sites help this perception by focusing on extreme sporting events and diet as if these were applicable to all dibetics and all that was needed..to combat the disease.

Januvia -takers of the world unite! hands off our siatgliptin!

I have been able o reduce my other medications since aking sitagliptin. where can I look to compare coss please?

 

[catherinecherub]

Good article in the Telegraph today about PCT's denying patients drugs approved by NICE.

http://www.telegraph.co.uk/health/healt ... rusts.html

 

[Unbeliever]

Thanks catherinecherub, Very interesting and very useful to me, personally. but very unfair.

I often wonder what criteria they use to cost these things.

 

[Sid Bonkers]

Only just started the Sitagliptin (Januvia) and doing well,, Now thats on the RED list :?

Is there a reported problem with Sitagliptin now Bowell, I can't find anything on it.

I am not on this drug but it was offered to me when I came off insulin in case I needed it, luckily I have managed without so far, over a year now insulin free But when it was offered I did a bit of reading up on it and to me it seemed like a very clever drug in deed, be a shame if there is now a problem with it.... :cry:

 

[cugila]

Sid.
It isn't a problem with the drug........bowell was responding to this article........

http://www.pulsetoday.co.uk/story.asp?s ... d=36490539

GPs are being banned from prescribing high-cost drugs approved by NICE as NHS managers seek drastic savings on prescribing budgets.
More than half of primary care organisations have brought in new blacklists within the past year, a Pulse investigation reveals.

PCOs are redrawing formularies in changes they estimate will slice £250m from this year’s drug budget. Responses from 134 PCOs under the Freedom of Information Act show that more than half have blacklists of drugs – in some trusts of more than 100 – that GPs are banned from prescribing.

 

[mandydowns]

Hi

I have lost 4 stone, come off BP meds and statins, aspirin too.....if my liraglutide is stopped I am truly worried about my future health. Why finance research into new drugs and carry out trials for their effectiveness only to have them witheld?

I am absolutely furious....would you be able to appeal if your meds were withdrawn and you were already receiving them and could prove that there was a medical need?

Just been taken off anti depressants - the stress of this worry wont help......thank you Mr Lansley.

 

[silvarbullet1]

Thanks catherinecherub, Very interesting and very useful to me, personally. but very unfair.

I often wonder what criteria they use to cost these things.

My wife (a Dr) says that NICE use some sort of scale that measures years of life improvement, e.g. does this drug offer great improvement for 1 month vs. the other offers 10years of moderate improvement for the patient. The score is then balanced against the cost to work out the benefit to the number of people, so basically each of these is considered:

- Overall improvement to the patients life (reducing, removing or controlling the effects of the illness or disability)
- Improvement timescale (how long does the improvement last, or could last)
- Cost (ie. how many people can we afford to give this to)

This is as I understood it from my wife who gave me a quick 'for idiots' explanation, so if anyone has actually read the NICE guidelines and knows better please correct me.