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Please help - sign my petition to Scottish Parliament for CGM sensors

tim2000s said:
@Stuart K because that's not going to make any difference. I prefer to lobby my MP and the Health Minister directly and I encourage everyone else to do the same. There is more power in that!
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Point taken Tim, I've started this and I intend finishing but if unsuccessful, as you suspect I will be, I will try a different approach. Nothing ventured, nothing gained. Please realise though, I am trying to do something positive. I don't expect praise or even thanks but I really don't want to get dragged into political debates. For me, it's black & white. I have no doubt in my mind that CGMs will save Govt money and will, indirectly, save lives. I can sit and do nothing or stand up and do something. Something might not be enough but nothing is never enough. Cheers
 
 
Tim, Thank you very much for your input to Stuart K's petition for CGM to be made available on prescription in Scotland. From the posts you have made it is very obvious you have a lot of knowledge and opinion on the subject. I am Stuart's partner and I was diagnosed with Type 1 just over 41 years ago, I have been using the FreeStyle Libre since May 2016. In this short space of time I am already seeing and feeling the benefits and learning on a daily basis what works for me in terms of food. As Stuart quoted it has given me the boost I needed to get my diabetes care back on track. I happened upon the petition that MP Jamie Reed has launched and I signed it immediately as I would like more Type 1 diabetics to enjoy their monitoring as much as I do now. At time of posting this petition has 20,965 signatures. Mr Reed advised me by email that if successful it would not affect the availability on prescription in Scotland. He suggested we could launch our own petition north of the border, I mentioned this to Stuart and as the caring, supportive partner he is, he contacted the Scottish Parliament for advice. They agreed for him to launch the petition and that is what he did. This petition was not intended to disregard the monetary issues the Government has, but only to highlight the benefits the FreeStyle Libre users like me have experienced. I have submitted a number of posts on the FreeStyle Libre facebook page agreeing that it is expensive for me as an individual, but I am happy to pay for my sensors as I would not be without them now. This is a massive step forward in diabetes care and when I purchase the sensors I know that I am putting funding back into research that will improve the understanding and care of all Type 1 diabetics now and in the future. Over the years I have seen my insulin administered from a glass syringe with reused needles, to disposable syringes with needles I have had to purchase, to an insulin pen and soon from an insulin pump. I had to test my sugar levels with a test tube, urine sample and Clinitest tablet, then finger prick blood tests. It has taken 41 years of my life to get to this stage. I am not naïve, I do not believe this petition is, as you said, a waste of time. As a Type 1 yourself I would have thought you would have been supportive on this issue and not try to destroy the hope of so many like me. Once again I thank you for your input but I hope people will remain supportive on this issue and continue to sign and hopefully share the petition with others.
 
Hi @Poli I fully understand your viewpoint, and I'd love to see all types of advanced monitoring available on prescription, but as Jamie Reed knows, a petition to get the Libre or any other form of CGM available on the NHS, wherever in the UK that is is not how the system works and will not make the process that is currently being gone through any faster. In many cases it can hinder the process.

Why?

The NHS has to assess products like the Libre based on clinical evidence. It is, ultimately, an outcomes based system, and needs to determine a "value" approach. Historically, CGM has not been able to provide evidence of the value of the product versus the cost, because, as you'll understand, the rate at which sensors are replaced according to the manufacturer has always been what cost has had to be based on, and the NICE models have set a limit above which they consider the costs to be unsustainable. Sadly, we are not the only people with long term conditions that cost a lot of money. Let's remember that although Type 2 diabetics would benefit if they were taught to use test strips properly, they are supplied none and it is considered unnecessary. I'd say that they have a far greater need of intervention, yet we as a population are demanding superior monitoring because it is there.

My understanding is that the clinical factors that trials have to demonstrate will be in line with what the NICE guidelines state, namely that by the introduction of a product that reduces fingerpricks, Hba1C will have to be shown to be non-inferior (which I think the studies they've published already show) and that there are other benefits, such as reduced hypoglycaemia (which is a good analogue for glycaemic variability).

Abbott believe that they have already pulled together enough evidence to demonstrate the criteria that the NHS needs to prescribe this product in particular and have entered into the appropriate process with the NHS BSA to get it made available on prescription. This will include/need a NICE technology assessment and recommendation.

Note that this has taken place without any involvement of either the UK or Scottish Parliaments, and without the use of any petitions. The next step in the process is to get CCGs in the UK to fund the prescriptions.

But let's take the step to the CCGs, where the prescribing budget lies. Our local CCG, like many, is trying to drop their prescribing budget by 5% to 8%. All CCGs has a whole have been given a target to reduce spend on prescriptions by £150mn this year.

So let's look at this range of groups involved in handling the money and dealing with new technology on the NHS. And let's take a proper strategy into dealing with it. So far we've had a variety of petitions demanding things of parliaments. How about we take a different approach. How about we do something collectively and structured? As a UK population?

Here's my proposal. Everyone who wants this stuff on the NHS needs to participate in a patient led capture of data that provides evidence of the benefits they see from it. We need to get together at the CCG level and demonstrate the difference that introducing these technologies has on our Hba1C levels and our glycaemic variability. I'll volunteer to set up the data capture if you like?

Real evidence from the people who it counts for. Once you start to capture the data, then you can present it to the bodies, and start to talk to the media about what's being done. If we want to beat the system, we need to do it in a way the system isn't yet ready for. And boy is it ready for petitions that will take you nowhere.
 
Couldn't agree with @tim2000s more. One of the biggest problems I see is that there still isn't enough evidence to support the use of CGM technology. Of course, those of us who utilize it understand the benefits, but those experiences need to be quantified and consolidated to create a more compelling case to those who may not live with or understand diabetes.

@Poli you're making a serious mistake of assuming Tim isn't being supportive of this issue. That couldn't be further from the truth. What he's trying to say (if I understood him correctly) is that there is (likely) a better path to getting CGMs approved. No one is trying to destroy your hopes.

All of us share a common goal. Make no mistake about that. How we achieve that common goal is where our opinions differ. Having seen literally hundreds of these petitions within the past year, I think they do a great job of raising awareness of the issue, but a poor job of furthering and resolving the issue. Either way, if this is your best contribution to helping, I'm sure we all can respect that. All I ask is that you offer us the same level of courtesy and realize that we have everyone's best interests in mind over this matter.
 
tim2000s said:
@Stuart K because that's not going to make any difference. I prefer to lobby my MP and the Health Minister directly and I encourage everyone else to do the same. There is more power in that!
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I wrote to my MP and the Health Minister and all they said that there were NICE recommendations and I should speak to my clinic, which I have done on several occasions but keep getting told the health board are not giving them any more funding.
 
I have also addressed my Chief Officer for my CCG and the APPG and my MP.
I asked why my CCG only provides for a period of 3 months on a short term basis and this was discriminatory against persons with long term disabilities.
I have had a response and am reading it all theough now. I had questions A to L. I can tell you my CCG from 2013 wasted horrendous time from consultants and nurses / patientss asking a Panel of at least 4 persons to fund 42 applications... Not necessarily 42 people. It seems that if a person wants on a long term basis then that person / staff have to re submit requests every 3 months! 5 applications have had to go to appeal. My nurse spent horrendous time on my submission. As did I! I had to give evidence of why I am exceptional! My nurse had to involve other consultants, therapists etc that I see too. I am the first guinea pig that she has requested funding for.

The CCG have spent their time also answering my questions...more time will have been wasted by these professionals on the Panel and with a Secretary responding.. And then up to 4 appeal processes where on the 1st one I would be asked to go in front of the Chair of the Panel.

I think in past 10 months I've had 5 ambulances to me. 3 diabetes wise. I'm also not a person to waste NHS time/money etc with ambulances. I've had good low control up til my cancer and increasing bowel probs. I pretty much know clearly when I need help and when I don't. I've never needed 3 in 10 weeks for my diabetes ever in 30+ years.

Tim had previously mentioned about personal budgets for Cgm's etc but personal budgets will not work until the CCGs change and get hounded by T1 diabetics.

My old CCG did not restrict CGM's at all, it was all down to the Consultants to spend wisely. This CCG is just 50 miles from where we currently live and the difference in care and knowledge in postcodes is enormous!!
 
Maybe I'm being naive but the way I think, any action is better than none. I read the comments, I accept the criticism, I appreciate the advice and I take it on board. What disappoints me is the fact that points are raised, others are dismissed and basically I'm given the strong impression that I'm wasting my time. Would it not be more positive to accept when people are trying to improve things, whether you value their method of approach or not? The question of where the funding will come from if this were to happen arose. Maybe dip into the same pot that offers free smoking cessation clinics through the NHS. Is that more important? If other people want to attempt another course of action then great. You won't hear me criticise. Even if it has a 1 in 1000 chance of success it's surely worth trying.
 
Please believe me...some funding is available if you persevere.....and question and apply to get it etc.

I got turned down for libre funding on Tuesday.... HOWEVER, I have got CGM funding for 3 months and then have to reapply again....
 
That's why we need to hound them. The issue you have is that you have a clinical need and are being rejected - even with NICE guidelines that suggest you need it.

It's also why I want as many people to fill in the Survey. There are no RCTs that have thousands of voices. If we had thousands of responses with some real (all be it self reported) data, it's hard to ignore it, and everyone can use it with their CCGs.
 
I got CGM funding for 3 months. Old hospital nurse now got to send everything to new pump specialist that I see next week.
The exceptional funding request actually went in for a libre which got refused on grounds its not recognised by NICE. So they have allowed me funding for a CGM instead but still only short term and constant requests for continuation in the future..

The costs involved in nurses/consultants/panels times really has to be accounted for as well... In the CCG deciding their policies. To me this is not a £90,000 drug request for a short extension of a life with cancer. As a cancer sufferer I do have every sympathy of course, but this funding is giving someone back a life to be able to re contribute to society....

This is why Its so important that people wishing to get CGM funded find out what their CCG policies are and approach the Chief Officers etc.

I still have to look through their policies on equality and diversity yet.. And I will and I will carry on my fight for people in my CCG.- not just me.

Just got my stomach and new endo appt to sort out notes for next week as well as reviewing the cancer stuff I was given yesterday...
 
The most important thing though really is finding out CCGs which do fundand gettinfg details of how many they have funded under the FOI Act.

That will be my next approach, but it really needs a health journalist (daily mail?) to get involved. They get data a lot easier than the public...
 
Actually, it's not the CCG's..
Its all NICE working on their own agenda and without real life experiences.
Its the APPG for diabetes that can put some pressure on but NICE do not get DATA from real persons that have used .. Even if its self funded use.
Look at my CCG.. Decided to take the more expensive CGM for a few months.. When a Libre was adequate really for me and a cheaper option. They had to go with NICE recommendations.

It is NICE that a campaign ahould be headed for. In fact I did something a few years a go for my patient group and campaigned at NICE and wrote to every single committee member, chair etc. I know we got good results with NICE but will have to try and remember what this campaign was for...

Thinking about it, NICE (for England) are the key, core people here...they are the ones that need the evidence from real people sent to Chair/Secretary/committe members..
 
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