Restrictions on test strips


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Today we’re attending a meeting with the All Party Parliamentary Group for Diabetes (APPG) about access to test strips. This APPG meeting will focus on access to test strips for people with Type 1 diabetes which has been highlighted in our recently released position statement on Self Monitoring of Blood Glucose (SMBG) for adults with Type 1 diabetes.

We have two speakers at the meeting – one highlighting the patient’s perspective and the other from a psychological and clinical perspective on the effects of limiting access to test strips. They will draw on case studies of personal accounts as well as clinical evidence to raise and highlight issues around test strip restriction.

Self monitoring of blood glucose levels is one of the most crucial parts of self care for people with Type 1 diabetes. The ability to monitor glucose levels and to take action to prevent hypoglycaemia and hyperglycaemia is one of the most significant parts of self care which allows the patient to feel in control of their health condition.

Yet anecdotal evidence and evidence that we’ve collected UK is increasingly showing that patients with Type 1 diabetes are subject to test strip restrictions that prevent them from carrying out self monitoring of blood glucose levels as often as they need to.

We know that patients are increasingly concerned. We have seen a lot of talk about this subject on our Facebook page and through Twitter, with an increased number of visits to our website where people are searching for information on the subject too. Our Careline and Advocacy team are also reporting more calls and enquiries on this.

There appears to be strong evidence that cost to the NHS may be the driving factor, however when considered along side the long term effects of poor glycaemic control this appears to be a false economy. Strong research evidence gathered over the last two decades shows that tight glycaemic control is associated with a significant reduction in serious long term diabetes related complication. NHS spending on diabetes was almost £10 billion in 2011, which is 10% of the NHS budget. 80% of the NHS spending on diabetes goes into managing avoidable complications.

The group is taking this opportunity to examine what can be done to ensure this basic yet crucial need of people with diabetes is met irrespective of where a patient lives.

We’ll be tweeting from the meeting with details of what’s being said, questions raised and responses from MPs, and sharing these updates elsewhere online too. Follow @DiabetesUK on Twitter – we’ll be using #teststrips so be sure to use this hashtag to have your say too.

If you’ve not had the chance to read our full position statement on this subject, here’s a summary:

1. There should be no restriction of blood glucose testing strips.

Self monitoring of blood glucose levels should be regarded as an integral part of treatment for everyone with Type 1 diabetes and access to blood glucose testing strips and meters should not be restricted.

2. SMGB reduces incidence of complications of long term complications in diabetes.

Self monitoring of blood glucose levels can improve glycaemic control in a person with Type 1 diabetes and reduce the incidence of the long term complications of diabetes.

3. Use and frequency of testing and target blood glucose level should be agreed between the person with Type 1 diabetes and their diabetes healthcare team.

4. Access to self monitoring strips should be individualised.

Access to self monitoring test strips should be based on individual need in a joint decision making process between the person with diabetes and their clinician.

5. Treatment regimen, lifestyle and individual needs will determine how frequently a person with Type 1 diabetes needs to test.

6. Self-monitoring skills should be taught close to the time of diagnoses and initiation of insulin therapy.

The education should enable self monitoring of blood glucose levels and the individual able to adjust treatment and activities appropriately. This will help to avoid hypoglycaemia, control hyperglycaemia and support optimal diabetes outcomes.

7. Self monitoring should be performed using meters and strips that suit the individual requirement of the person with Type 1 diabetes.

8. There should be a structured assessment of self-monitoring skills.

The quality and use made of the results obtained and the equipment used should be performed annually, or more frequently according to need, and reinforced where appropriate.

Follow our tweets live from the meeting from 16:00 this afternoon: @DiabetesUK. We’d love to hear what you have to say too – let us know your own experiences, or what you think can be done to improve the situation. Use #teststrips in your tweets.

Update: Check out our Storify that brings together everyone’s comments and tweets from throughout the day.

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I don’t understand why there is a need to limit the purchase of test strips. It is very important that people with diabetes are able to monitor their blood sugar level thru the use of test trips.

I’m not over in the UK, but we’re facing the same kind of problems here in the US. Usually It’s the Type 2’s here that don’t really receive the care they need, mainly because many doctors over here tell newly diagnosed Type 2’s that it’s ok to test only 1-2 times a day. Not sure how they expect anyone to get a proper pattern going when they only test once in the morning and once before bed. You pretty much skip every meal. When my doctor told me I was pre-diabetic and at serious risk I was testing 3-4 times a day just to be sure. That didn’t even include all the test strips that gave error messages or that I simply messed up with. The only reason I was able to test was because my mom is a CDE so she got me a meter and strips to use. Over here these pharm reps load the doctors up with closets full of sample strips(10-25 ct boxes) and they literally will have them just sit there and expire without giving them to people who need them. It’s almost like pulling teeth to get a prescription for more when you need em.

We’re trying to do our part at http://www.steps-to-success.org by providing low cost supplies over here, havent started shipping overseas yet but hopefully soon :-)

I have been diabetic for 23 and almost 24 years. Up until 3 years ago I hardly tested now I test a minimum of 4 times a day if I do not drive during the day. My last HbA1c was 6.4 I have been down to 6.3 which to quote the diabetic nurse at my GP’s surgery was the best she had seen I do this by regular testing with my Aviva Expert which I use because I carb count. My average work day goes like this wake up test before breakfast use that test as to see if I’m ok to drive to the station. Often at work I will do a midmorning test too. I will test before lunch and sometimes in the afternoon. I will then test when I get back to my car at the station. Then at dinner and finally before going to bed. Sometimes because I have Somogyi syndrome where my blood sugar drops in the night and means I end up rising quite high I test in at 2am to 3am to catch any hypos. Plus if I go to the gym I will test before and after. Also it is a good idea to test before a hot bath due to the heat of the bath or shower making insulin work better. Through this I have managed almost cure my retinopathy which to begin with was quite bad and could have had to have laser eye stuff done.

The other thing I would like to see D:UK deal with is PCTs, Commissioning Groups and GPs trying to dictate what meter people use as a ‘Carb Counter’ the Aviva Expert is a god send. This meter allows me to fine tune my insulin calculating my dose for the food and correction for being high or low plus takes into account any onboard insulin (insulin I have already injected) which to do myself is just to much of a headache this plus testing when I need to has turned around my control. Several months ago they tried to get me to change to a very basic meter which I managed to stop. The only thing better would be a pump but that is another battle which I hope D:UK will take up too.

I would like to have spoken to this committee and challenged them to walk about with a blind fold on at some points because that is what restricting strips is like.

I’ve been a type 1 diabetic since 1977. In those days before blood testing all the equipment was very basic, ie peeing on a stick and waiting a minute to compare with a test strip not to mention one needle to inject with a week.
However these days things are so much better, I test 4 and sometimes more a day and have never had any problems obtaining adequate supplies of blood test strips and if I want to change the make of meter I use there’s no problem.
I ‘m genuinely surprised when I read that people are having to test themselves 10 or more times a day other than when they have an illness or other problem that will affect their control. It seems that they are reacting to their lack of control rather then managing their condition.
I would recommend that anyone testing more than 4/5 times a day under normal conditions should ask their doctor about going on a DAFNE course which are run by diabetic centres in hospitals up and down the country. DAFNE stands for ‘dose adjustment for normal eating’ and teaches you how to adjust your insulin intake based on what you eat and when you eat it. The courses last a week with follow up refresher sessions. You will find that the support you get will enable you to manage your condition and significantly reduce the occurrence of hypos.

I have had 2 pots of strips in 4 years. I am well aware that Type 2’s in other areas are prescribed a reasonable amount a year and that I am the victim of the infamous postcode lottery. I have now changed my tester to one accepted by the medical profession where tests strips are fairly cheap and will ask for some and am in no doubt I will be told no. All I would ask for is 50 a month x £11.94 – £141.48 per year. By the way I pay for my strips and my HbA1C has been between 5.7 – 6.5 for 4 years (since diagnosis). My medication (metformin) has not increased since that time. The power of testing!

I’ve been type 1 diabetic for 7 years now, at the beginning i went to university and pretty much denied the fact I had diabetes and have since suffered the consequences (diabetic retinopathy and neuropathy). Now I am older and wiser I try to take care of myself a bit more and working with heavy machinery I need to have good control, if I have a hypo at work people could get hurt so I test myself with every meal and at breaks which is around 6 times a day thats 30 a week so 120 a month. If I had to pay for my testing strips what with the rising cost of rent and utility bills I just wouldnt be able to afford it and my diabetes would suffer which would mean time taken off work which would mean reduced earnings and even less testing. It would be the start of a never ending ownward spiral until I would be admitted to hospital and all to save a few pennies on testing strips?

Madness

I am only type 2 , but have been injecting insulin now for about 10 years . I am also disabled and rely on my Motability car for getting around .
On 24th March 2011 I received the following letter from my GP :-
” Currently you are prescribed test strips to enable you to test your blood glucose levels . NICE , who are an independent organisation responsible for providing national guidance on diabetic management , does not advise the need for over testing blood glucose levels , and the North Wales guidelines concur with this .
This review is supported by the Health Board who advises that you test twice a day and therefore do not exceed more than 3 boxes every other month . ”
To add insult to injury , this letter was also accompanied in the same envelope by a leaflet prepared by the Countess of Chester Hospital on Diabetes and Driving instructing me to test every time I drive , and that if I have a hypo ( defined as less than or equal to 4 mmol/l ) I have to test again and then wait 40 minutes after the symptoms have disappeared .
Consequently , my prescription requests for strips are only normally approved every other month . I made an appointment with my GP to say that this was preventing me from driving , and she said that the prescribing authorities operate this blanket ban which does not allow for people who drive .
I have since requested further strips and the receptionist quite bluntly told me I was only entitled to them every other month .
What am I to do ?? I seem to be faced with being isolated in my own home . As I have strong warning symptoms of hypos , I am continuing to ” guess ” that I am safe to be driving , but clearly , technically , I am breaking the law .
Would it be of any benefit to me if I were to contact Motability and ask them for advice ??
Surely , thousands of people must be having this same problem and a national response must be needed .

come on… what about type 2’s being restricted or even forbidden access to test strips? How are we supposed to manage our condition properly?

I have type 1 diabetes and at 30 have been for 15 years now. At first when diagnosed I barely tested my blood sugars and my blood results were awful. Since then I have taken the approach that its an essential part of every day life – if I do not know what my results are how can I be sure of how much to eat, how much insulin to take and how often? As a result my blood results are now excellent – almost level with someone without the condition. It may cost money for a few strips now, but the savings for the future by avoiding complications are huge.

This is especially serious when you consider that the DVLA and recent court decisions where people with diabetes have crashed their car and killed people means that you MUST test your blood levels before driving a vehicle.

I have noticed a trend that blood machines and strips are now worryingly given out on a one size fits all basis! I was told I had to have a really large machine with a finger pricker that went far too deep and made me bleed too much. It apparently was policy that “all diabetics get that machine, and no other!” . Fortunately after a tough fight I managed to keep my existing meter which is so much smaller, and the finger pricker that doesn’t make me cry! As a Trading Standards Officer I carry out dawn raids and often work 20+ hour days, therefore it is essential that the equipment I use is small and practical and that I can ensure I can carry out my job without fear of going hypo at a crucial point in the day.

Please those who are involved ensure that we are treated as individuals, were are not robots!!

J have been type 1 diabetic for 25 years now. My condition started gestationally. During my third pregnancy I became insulin dependant and altough after the birth of my daughter the condition began to recede I developed pneumonia a week later which tipped me into remaining diabetic. Now 25 years on I have just gained access to an insulin pump, (which was a battle in its own right ) and am finding a new freedom from constant hypos. As with so many other diabetics I have struggled and argued constantly with my doctors surgery for a greater free access to test strips. They are sympathetic to my arguements but are under scrutiny themselves for the dispensing of this item.
For my car insurance and the issue of a three year driving licence I have to test before driving. That’s a minimum 2 tests a day just to get to and from work. I eat 3 meals a dayand naturally teat prior to food to assess as accurately as possible the
necessaryinsulin dose needed for that. So now I have a minimum of 5 tests a day.
Of course if I exercise, garden go dancing etc I will again need at some point to test.
Then there are the usual episodes of illness which will increasse the number of test needed.
I suppose what I’m proving here is that no one knows better than a diabetic how to control their disease. So many medics have little true knowledge, and in some cases only ignorance, of how a diabetic should be attempting to control the episodes of hypos or hypers.
About time NHS listened to the true experts and took on board our points!

As someone who works in the motorsport industry, when working at track side I test myself every hour or so and especially during endurance races where I could be active for 30 hours or more. I have to check myself regularly to stop any hypo/hyper attacks as when it comes down to it, I have someone else’s life in my hands, if I was limited to the amount of strips available to me, it would be detrimental to my health and could put someone else at risk. It would probably end my career on safety grounds as race tracks are dangerous places at the best of times and having enough strips to see if I was going Hypoglcemic would be dangerous

I was diagnosed with Type 1 diabetes at 27, 2 years ago now, and after the initial shock and stress of testing, injecting and attending regular check ups with my local diabetes team I have now settled into a rhythm. The support from the team has been invaluable for my partner and I, implementing healthy eating, highlighting potential issues, explaining how to manage diabetes with my sporting commitments and therefore making us less reliant on testing. The cost of this support is invaluable, however, I have lost count of the times I have been there and appointments booked before and after mine have not been attended by the patient. Wasted appointments, time and resources lead to increased uncertainty, panic testing and emergencies when these non-attendees have a hypo or hyper and they are usually the first to complain when they should have sought the advice and followed the guidance available in the first place!

Diabetes is too often tarred with a broad brush stroke in the media and the difference between Type 1 and Type 2 is usually not highlighted. A newspaper highlighted the costs of treatment recently in an article claiming ‘diabetes would bankrupt the NHS’ but was forced to amend the article following complaints that all diabetics do not fall under one banner as ‘diabetic’. Only 10% of all diabetics in the UK are Type 1, of the other 90% that are Type 2, a large majority of those cases are avoidable due to weight problems and poor personal health. There is potentially a huge saving to be made by reducing the number of Type 2 diabetics but it means raising awareness, changing lifestyles, encouraging more exercise and society changing as a whole. If these changes happen it will still take many years to filter through and to see a difference.

With regards to testing, by managing my diet and recognising the signs of low blood sugar following consultation with my diabetes team, I test 4 times a day morning/breakfast, lunch, evening meal and bed time. This means I am using approx. 30 test strips a week. Initially I was requesting repeat prescriptions for a pot of 50 strips every 10 days or so until about 15 months ago I requested my GP to increase this to 3 pots or 150 strips to last a month and have not been informed of any ‘limit’. With these frequent visits I am now on first name terms with the chemist and was ‘interviewed’ by him recently as part of ‘new government guidelines’. Funnily enough he asked me about how I manage my diabetes, repeat prescriptions, frequency of request and was quite shocked when I replied that I attended the diabetes clinician appointments frequently, managed my diet and insulin injections accordingly as a result. He remarked that many people do not attend these appointments and use double the amount of strips that I do a month and hence why the government was clamping down on prescriptions! In conclusion, the advice to manage diabetes effectively and reduce reliance on testing is available for free from your local diabetes team; therefore reducing the consumption of test strips, reducing demand and in time the cost will fall. The advice is available, free and all you need to do is ask…

My 5 year old daughter was diagnosed in August. I have ongoing issues with my gp and their inability to get the items shes needs. Not only test strips but needles, Lancets for the finger pricker, even the insulin has been prescibee incorrectly or an inadequate amount supplied. All very frustrating and stressful.

Common sense is needed here as many diabetics hypo and need to re test every ten mins till bk within safe range this can take as many as 5 strips and stress or illness makes it more frequent. So personally I think limiting strips is totally wrong. Fix the problems not make them worse. Cutting corners will make more people becoming ill as they won’t be able to test as frequently as they’d like to feel safe.

From what Patricia McKillop said: Interesting how many doctors receptionists are now expert medical practitioners as well.

How many of us face ludicrous responses from people who have no right to make comment like this? This is the kind of thing we all face all the time and its driving the accountants to make health care decisions based on costs this week, not total costs which would include the cost of treatment and care for amputations and other horrible and avoidable complications.

When my daughter was diagnosed a couple of years ago she was so worried about her levels that she did check over 10 times a day – Every one is an individual and the more active the more you need to test too. Diabetes needs are forever changing we had our first really bad infection and it lasted over 2 weeks – I wouldnt like to guess at how many tests we used in that period. I notice it said Adult diabetics and so Im assuming anyone over 16 they are trying to put restrictions on? But they are still growing at that age and always going to have their share of unpredicted illness throughout their lives where it is essential they keep on top of things. My daughter has now stopped checking her bloods so much and does the bare minimum (4/5 a day) BUT that reflects in her 3 monthly reviews which are now the worst ever and over the recommended guidelines ! Not to be encouraged I think.

I an type one diabetic – I am a student nurse and work odd shift patterns which results in BMs either hypo or hyper am having to test up to 10 times per day : advised to do this by my GP yet can only get 150 strips per month – simple maths tells you this is not enough strips for a month – I had to argue my case to get strips increased from 100 to 150 per month !!! told could have 150 strips for 3 months then revert back to 100 however I work all year and varying shift patterns – feel bad for working and trying to give back to the NHS : maybe best if I did not work then have perfect blood sugars- If I have hypo overnight need to retest for a few hours – feel as if limits on test strips could be catastrophic for some people – if they do not have enough how can they assess their own health – recognise NHS make cost reductions however admitting someone to hospital is far greater than an extra pack of test strips (£25 per month or £500 per day in patient admission cost )

I would also like to add that for many of us that live overseas and don’t have access to a free healthcare system, that the cost of test strips is outrageous. Surely for these tiny little mass produced strips and with the rising rate in type 1 diabetes the cost of these strips should come down considerably and be more accessible to everyone. I am extremely lucky that I can afford to buy as many test strips for my daughter as she needs, however there must be hundred of thousands of people out there that cannot afford to buy more if they go over their NHS or healthcare quota or if they have no healthcare at all. These are an essential tool, need and the absolute right for every type 1 diabetic for the safe and continued control of this horrible disease. This will save governments, countries and the whole world in the long run. Most importantly it will help save lives and help improve & maintain a healthy life for every Type 1 patient.

My daughter is very good at monitoring her Blood Glucose levels, and I am extremely happy that she regularly tests herself. Her HBA1C levels are as good as mine and that is a result of good management and regular testing.

Everyone should have access to either free test strips or at least affordable ones!

I was diagnosed 6 months ago with type 1 and I always worry about the number of times I test in a day because the doctor’s receptionist said I should only test a couple of times a day and I test about 7 or more. People are ignorant and don”t realise if ou are driving or are low or high you have to retest and this gives me peace of mind. I would be stressed if I wasn’t able to test frequently. I shoukdn’t be made to feel wrong for wanting to keep healthy. My diabetic nurse agrees with me that test strips are vital to keeping well.