Prime Minister and the Libre

[dbr10]

The NHS in its current form is unsustainable.
I'm very very doubtful that it will continue to fund products for anyone in the quite near future.
There are too many people using the service and also people abusing it.

On the other hand I see my consultant twice a year and the dsn at the hospital twice a year too. On top of this my surgery now want me to see the 'diabetic' nurse annually in the surgery. I've been once and it was bloody hopeless. She asked if I took insulin after I'd told her I was t1. Felt like saying ah that's where I've been going wrong. She also said I should have statins just because I was t1 and most t1s have them even though my cholesterol is absolutely fine. And she was morbidly obese. It annoys me when people who don't know what they are taking about try and give advice and aren't even that healthy themselves!
I also have to see my named dr annually at the surgery. Even though it is pointless as I'm on a pump and they just aren't specialist enough.

So four appointments at the hospital, plus eyes, plus now two appointments at the surgery is now 7 annual diabetes appointments. I am well controlled by the way. The appointments at the GP really annoy me.

So that's two pointless appointments that I have to attend. Meanwhile I've been waiting over 18 months for some help with chronic anxiety and depression.

My point is what they aren't exactly a streamlined service but how you sort it out I've no idea. It will go under at some point. It cannot continue as it is.

It may be a situation where we are being softened up to think it is not sustainable. I believe tis is deliberate. We really need all party agreement on the percentage of GDP that should be allocated to Health Care.

 

[dbr10]

Totally agree in an ideal world everyone should be allowed everything they need - but we all know it's not like that - and if everyone was given one would everyone use it properly? Probably not - but on the other hand I agree everyone who has a case for one should be offered one. But as a T2 on gliclizide who had to fight for 50 strips every 2 months and self fund the rest I don't hold out much hope for any of us getting what we need

There needs to be an assessment to ensure people would benefit of course. But if people can achieve better BG control the NHS would save some money at least.

 

[slip]

Totally agree in an ideal world everyone should be allowed everything they need - but we all know it's not like that - and if everyone was given one would everyone use it properly? Probably not - but on the other hand I agree everyone who has a case for one should be offered one. But as a T2 on gliclizide who had to fight for 50 strips every 2 months and self fund the rest I don't hold out much hope for any of us getting what we need

Gliclizide is hypo inducing, they should not be restricting strips!

 

[dbr10]

Gliclizide is hypo inducing, they should not be restricting strips!

They should not.

 

[lovinglife]

They should not.

Apparently because I don't drive I don't need to test so often? I sort of agree with that - to be honest it took me 4 years to get the strips that I get now and I really don't test that often now unless I feel off or I am testing a new food. My routine is pretty ridged with virtually similar meals each week and set meal times I don't buy too many of my own strips these days (sorry derailing the thread)

 

[dbr10]

Apparently because I don't drive I don't need to test so often? I sort of agree with that - to be honest it took me 4 years to get the strips that I get now and I really don't test that often now unless I feel off or I am testing a new food. My routine is pretty ridged with virtually similar meals each week and set meal times I don't buy too many of my own strips these days (sorry derailing the thread)

Surely if you are at risk of hypos you need to test. Was the "you don't need to test so often" just BS because they didn't want to give you the strips? I know of people who've been told they'll test so often their fingers will be cut to ribbons. Just rubbish.

 

[lovinglife]

Surely if you are at risk of hypos you need to test. Was the "you don't need to test so often" just BS because they didn't want to give you the strips? I know of people who've been told they'll test so often their fingers will be cut to ribbons. Just rubbish.

I don't really go what I consider hypo i.e. 3.5, I'm usually between 4 and 6 when I do test ( I meant to add that I do do "test days" every now and then where I test everything for s couple of days just to make sure I'm not drifting) - no I think they have a valid point about my not needing to test so often if I'm not driving - why would I ? - for me that would be just random testing for no reason.

Like I said I have a pretty set routine and can pretty much judge by the way I'm feeling what my bloods will be. I did test an awful lot in the beginning to get a handle on it but just don't need to now

 

[dbr10]

I don't really go what I consider hypo i.e. 3.5, I'm usually between 4 and 6 when I do test ( I meant to add that I do do "test days" every now and then where I test everything for s couple of days just to make sure I'm not drifting) - no I think they have a valid point about my not needing to test so often if I'm not driving - why would I ? - for me that would be just random testing for no reason.

Like I said I have a pretty set routine and can pretty much judge by the way I'm feeling what my bloods will be. I did test an awful lot in the beginning to get a handle on it but just don't need to now

I see. I also tested a lot originally to weed out those foods which raised BG the most. After that, I've been eating similar kinds of meals, so don't think that I need to. I still do it occasionally to make sure I'm still on track.

 

[ringi]

When a CGM system at the cost level of the libre keeps to the standards the DVLA require for driving, then I expect the NHS will find it very hard to avoid funding for everyone who drives and uses inslin.. (Until then, the NHS can't save the cost of the test strips.)

@lovinglife I think it is time you took at least one driving lesson as learning to drive will require your GP to prescribe however many test strips you need.

 

[dbr10]

When a CGM system at the cost level of the libre keeps to the standards the DVLA require for driving, then I expect the NHS will find it very hard to avoid funding for everyone who drives and uses inslin.. (Until then, the NHS can't save the cost of the test strips.)

@lovinglife I think it is time you took at least one driving lesson as learning to drive will require your GP to prescribe however many test strips you need.

 

[first14808]

It may be a situation where we are being softened up to think it is not sustainable. I believe tis is deliberate. We really need all party agreement on the percentage of GDP that should be allocated to Health Care.

I think that would be very bad, but then the NHS has become extremely politicised. So GDP measures the size of the economy, so economic activity both private and public. So GDP's around $2.6tn, but government's revenues are only £769bn, and the November budget committed to spending £809bn, ie we're running a deficit and the government is borrowing money on our behalf.

So to get more money, government revenues need to increase, ie raise/collect more taxes and duties, or spend less. And there's also inflation, and because the NHS is such a big beast, giving it more money would boost wage inflation, and general inflation as suppliers line up at the trough. Then when inflation rises, so does the cost of everything the government's allowed to be linked to RPI+ like transport, energy, water etc which then means Mark Carney has to write a 'Well, Duh!' letter to the Treasury gurus.

But arguably the NHS needs more money allocated to the right areas, ie providing front-line care, not boosting executive's pay and pensions.. Or vanishing into PFI black holes. Arguably NHS PR people are also wasting resources at the moment fending off 'NHS in Crisis!' calls. This kind of thing happens pretty much every winter, and this winter's been made worse by it being a particularly nasty flu strain combined with cold weather.

That aside.. I do think there'd be a lot of value in using CGMs in a wide study. Enrol a representitative sample of say, 3.000 people, rig them with CGMs, ask them to keep a food/exercise diary for 6 months or a year and then study the results.. Which would probably show that the NHS diet advice has been incorrect..

 

[Madmaureen]

I have today written to my MP regarding funding for the Libre and on this issue I would like everyone on here to write to theirs as we need all the support and help we can get as it just isn't fair.is it?
We are using the Libre to help ourselves not to become a burden on the NHS so come on everybody do it!!!!

 

[Paul520785]

Hi all - T1 for 57 years - still here so must have been doing something right.

When I think about the NHS all I get is a feeling of disgust and despair!
I want the tax I paid back so I can afford to go privately and get a decent service >>>>>
Why ?
a) Last DNS visit (about 5 years ago) I was told to stop insulin so she could cancel the BG strips - I told her to learn about diabetics then read my notes so she could realise what a total idiot she was so I walked out as I needed about 50 units a day to balance my food.
b) It took me 20 months to get the full number of strips I needed when I retired and I almost got an apology from my GP for the surgery's ignorance and then she told me she was retiring in 5 days time.
c) My doctor at the surgery has changed 4 times in last 2 years so not convinced the practise manager has a clue - Oops sorry I forgot that he left as well.
d) 4 visits to the surgery because of an eye infection, different person on each visit, with last visit being told the drops and ointment prescribed would not help and something different was needed. It used to be - one visit one fix - Obviously a general lack of knowledge.

The good bit - A forum now exists where valuable information is available if you ask!

 

[Rob Bailey]

The NHS in its current form is unsustainable.
I'm very very doubtful that it will continue to fund products for anyone in the quite near future.
There are too many people using the service and also people abusing it.

On the other hand I see my consultant twice a year and the dsn at the hospital twice a year too. On top of this my surgery now want me to see the 'diabetic' nurse annually in the surgery. I've been once and it was bloody hopeless. She asked if I took insulin after I'd told her I was t1. Felt like saying ah that's where I've been going wrong. She also said I should have statins just because I was t1 and most t1s have them even though my cholesterol is absolutely fine. And she was morbidly obese. It annoys me when people who don't know what they are taking about try and give advice and aren't even that healthy themselves!
I also have to see my named dr annually at the surgery. Even though it is pointless as I'm on a pump and they just aren't specialist enough.

So four appointments at the hospital, plus eyes, plus now two appointments at the surgery is now 7 annual diabetes appointments. I am well controlled by the way. The appointments at the GP really annoy me.

So that's two pointless appointments that I have to attend. Meanwhile I've been waiting over 18 months for some help with chronic anxiety and depression.

My point is what they aren't exactly a streamlined service but how you sort it out I've no idea. It will go under at some point. It cannot continue as it is.

 

[Rob Bailey]

Hi all - T1 for 57 years - still here so must have been doing something right.

When I think about the NHS all I get is a feeling of disgust and despair!
I want the tax I paid back so I can afford to go privately and get a decent service >>>>>
Why ?
a) Last DNS visit (about 5 years ago) I was told to stop insulin so she could cancel the BG strips - I told her to learn about diabetics then read my notes so she could realise what a total idiot she was so I walked out as I needed about 50 units a day to balance my food.
b) It took me 20 months to get the full number of strips I needed when I retired and I almost got an apology from my GP for the surgery's ignorance and then she told me she was retiring in 5 days time.
c) My doctor at the surgery has changed 4 times in last 2 years so not convinced the practise manager has a clue - Oops sorry I forgot that he left as well.
d) 4 visits to the surgery because of an eye infection, different person on each visit, with last visit being told the drops and ointment prescribed would not help and something different was needed. It used to be - one visit one fix - Obviously a general lack of knowledge.

The good bit - A forum now exists where valuable information is available if you ask!

There are a number of threads here. I am type1 (35 years) and also a GP. The NHS is in dire straits due not only to lack of funding but also the waste of funds that it does have. I totally agree about the needless duplication of appointments, blood tests etc. To understand why this happens is that GPs are paid for looking after patients with diabetes through the Quality and Outcomed Framework (QOF). For GPs do this they have to do the checks and there are no allowances if patients are getting adequate care and checks elsewhere (eg hospital) For goodness sake, the NHS is meant to be a joined up organisation but over the years I have seen a wedge driven between primary and secondary care leading to unnecessary waste.

My second point, which the CCGs who refuse to endorse the prescription of Libre seem unable to understand is that through devices like the Libre we are freed up to enhance our own control and self management like never before. Libre is not “just another” glucose testing system, it is a step change (along with other CGM or flash monitoring systems) in diabetes management. CCGs seem to think that if they allow prescription then GPS will be prescribing them to everyone with diabetes. On the contrary, Libre is only helpful if the user is responsible and understands how it can help them. This is certainly not fall all and for some could do more harm than good by causing untold anxieties etc. It is interesting to note that NHS Wales seems to have far more foresight than the great majority of CCGs in England and can see the benefits. I feel that for the time being it should be prescribable to all those who can really benefit from it ( and what is more show that they can).

Finally, although I am no fan of Mrs May as a politician, her personal health is her own concern and to expect her to reveal details about her health is frankly unreasonable and unfair. One might consider that by showing her Libre she was making some sort of statement about it’s value as a tool in diabetes self management but one cannot expect her to come out and overtly express her opinion on the matter for obvious reasons.

 

[Wjohn]

http://www.dailymail.co.uk/news/article-5242733/Diabetics-denied-access-life-changing-monitor.html

"A Department of Health spokesman said the device is ‘available for prescribing’, and that guidance has been issued, ‘suggesting a careful start to its use and data collection to better understand the benefits’."

In other words Gps, don't use up your budget.
Is it fair to say that the PM is a good role model for T1s leading a full, busy life? (whatever you think of her politics.)
There's also a comment at the bottom that says refills work out at a fiver per day?? Sounds a lot.

As a T1 of long standing I am very upset at this governments health politicians using diabeties as a self promoting area ,promoting untrue statements ,never saying no ,but never fulfilling promises .
Here was my attempt (failed )to get the Libre on prescription in Scotland .
Because of control problems ,my Diabetic specialist fitted and assisted improvement ,by fitting a Libre system ,resulting in a far better control system ,mainly by being able to monitor more often ,now monitor on average 14 times daily ,previously was limited to 6 on NHS .
So ,when it was announced that Libre was to be prescribed ,my Specialist wrote to my doctor recommending supply on NHS prescription .This puts you into a circle ,
Doctor informs you he has no authority /funding/whatever ,but you must meet the criteria,,( criteria set by Scottish Gov. Committee )ask them about the criteria ,informing them about your recommendation from you specialist ,they reply ,They cannot discuss medical matters ?,and refer you back to your doctor. Doctor replies he is confused and will look into it but not to look for a quick answer .
I then wrote to my MP ,who contacts the Health minister who replies saying I should discuss with my Diabetic Specialist ,???.
Sorry it's so long ,but blame the politicians
Thanks Wjohn

 

[Wjohn]

There are a number of threads here. I am type1 (35 years) and also a GP. The NHS is in dire straits due not only to lack of funding but also the waste of funds that it does have. I totally agree about the needless duplication of appointments, blood tests etc. To understand why this happens is that GPs are paid for looking after patients with diabetes through the Quality and Outcomed Framework (QOF). For GPs do this they have to do the checks and there are no allowances if patients are getting adequate care and checks elsewhere (eg hospital) For goodness sake, the NHS is meant to be a joined up organisation but over the years I have seen a wedge driven between primary and secondary care leading to unnecessary waste.

My second point, which the CCGs who refuse to endorse the prescription of Libre seem unable to understand is that through devices like the Libre we are freed up to enhance our own control and self management like never before. Libre is not “just another” glucose testing system, it is a step change (along with other CGM or flash monitoring systems) in diabetes management. CCGs seem to think that if they allow prescription then GPS will be prescribing them to everyone with diabetes. On the contrary, Libre is only helpful if the user is responsible and understands how it can help them. This is certainly not fall all and for some could do more harm than good by causing untold anxieties etc. It is interesting to note that NHS Wales seems to have far more foresight than the great majority of CCGs in England and can see the benefits. I feel that for the time being it should be prescribable to all those who can really benefit from it ( and what is more show that they can).

Finally, although I am no fan of Mrs May as a politician, her personal health is her own concern and to expect her to reveal details about her health is frankly unreasonable and unfair. One might consider that by showing her Libre she was making some sort of statement about it’s value as a tool in diabetes self management but one cannot expect her to come out and overtly express her opinion on the matter for obvious reasons.

Several good points ,but regarding Mrs May and her Libre system ,as a politician she must be able to stand up to public scrutiny ,so ,Is her Libre system funded by the tax payer ,( another political perk ) ,or self funded or whatever ,
Wjohn

 

[Jo_the_boat]

As a T1 of long standing I am very upset at this governments health politicians using diabeties as a self promoting area ,promoting untrue statements ,never saying no ,but never fulfilling promises .
Here was my attempt (failed )to get the Libre on prescription in Scotland .
Because of control problems ,my Diabetic specialist fitted and assisted improvement ,by fitting a Libre system ,resulting in a far better control system ,mainly by being able to monitor more often ,now monitor on average 14 times daily ,previously was limited to 6 on NHS .
So ,when it was announced that Libre was to be prescribed ,my Specialist wrote to my doctor recommending supply on NHS prescription .This puts you into a circle ,
Doctor informs you he has no authority /funding/whatever ,but you must meet the criteria,,( criteria set by Scottish Gov. Committee )ask them about the criteria ,informing them about your recommendation from you specialist ,they reply ,They cannot discuss medical matters ?,and refer you back to your doctor. Doctor replies he is confused and will look into it but not to look for a quick answer .
I then wrote to my MP ,who contacts the Health minister who replies saying I should discuss with my Diabetic Specialist ,???.
Sorry it's so long ,but blame the politicians
Thanks Wjohn

Very poor. People have every right to be ratty.
At the end of the day, diabetics looking after themselves, and being helped to do so, saves money (not to mention aggravation and angst).

 

[ringi]

The problem is that it has been proven many times over that giving people “free” health monitoring equipment does not give a good return on investment, as so many people don’t use the equipment as a learning tool.

We on this forum are not representative of the general population.

So, to get a good result from giving out the Libre, the NHS will need to provide training to go with it, along with support to get people to engage with the data. Most people have no skill or willingness to engage with data. It is no coincidence that these systems are often used most effectively by people who have work in professions where they are expected to monitor systems, collect data, and respond to the data.

Just someone making use of a forum proves they are more engaged than most members of the general population. But the NHS can't use the number of forum posts as the selection method for who gets libre.

 

[first14808]

It is no coincidence that these systems are often used most effectively by people who have work in professions where they are expected to monitor systems, collect data, and respond to the data.

Just someone making use of a forum proves they are more engaged than most members of the general population. But the NHS can't use the number of forum posts as the selection method for who gets libre.

Well said. But I think it's also about the potential of CGMs and telemedicine. Other CGMs are available, and may be better than the Libre. Or don't make you look like you've been fitted with an anti-shoplifting tag. A couple were mentioned in the sports medicine study that were subcutaneous and inserted into the abdomen. But most can be networked and allow data sharing, which could make it easier for GPs or DNs to review and monitor patients, as well as the patients themselves. I think that would benefit patient's whose diabetes isn't well managed because then care professionals would have the data, and not have to rely on the patient. From reading studies, there are challenges with diet reporting, ie people may 'forget' to mention treats. Remote monitoring and alerting could give hypo warnings and check person's ok. Or see a BG spike and tell them to put down the cake, and back away slowly..

But that in itself presents technical and confidentiality challenges. Most CGMs seem to use proprietary data formats and sharing, so might need the NHS to define a common reporting schema, and method to add data to our records.. And NHS IT is.. challenging.