strips

[Bubbsie]

I still believe it's NICE who formulate the script for the CCG's to follow. They use it as clear clinical guidance based on the 'research of economics' NICE allegedly carry out.

The guidance is not clear Amigo...subject to interpretation...in respect o many conditions...wondering what safeguards we have in respect of commissioning groups getting it wrong...never heard of them being asked to justify their decisions...explain...no checks & balances with them...they seem to be some sort of omnipotent body...untouchable in every respect.

 

[Amigo]

The guidance is not clear Amigo...subject to interpretation...in respect o many conditions...wondering what safeguards we have in respect of commissioning groups getting it wrong...never heard of them being asked to justify their decisions...explain...no checks & balances with them...they seem to be some sort of omnipotent body...untouchable in every respect.

I accept that the CCG can depart from NICE recommendations in some cases but it would have to have compelling evidential reasons to do so. Most simply won't because NICE offer evidence based decisions and the case law I posted above suggest they'll get a battering as a result! The CCG cannot however contravene guidelines on prescribing items not on the NHS formulary it seems which is why GP's must abide by the new rules not to prescribe sun creams, nasal sprays, paracetamol etc. Testing strips are still a grey area open to challenge.
GP's are under the cosh because the CCG sanction them heavily and if a practice deviates too far they can even be reported to the GMC.
I don't envy the 'political' stranglehold some GP's must feel under which is why I suspect your GP was pleased you took up the cause yourself.

 

[Bubbsie]

I accept that the CCG can depart from NICE recommendations in some cases but it would have to have compelling evidential reasons to do so. Most simply won't because NICE offer evidence based decisions and the case law I posted above suggest they'll get a battering as a result! The CCG cannot however contravene guidelines on prescribing items not on the NHS formulary it seems which is why GP's must abide by the new rules not to prescribe sun creams, nasal sprays, paracetamol etc. Testing strips are still a grey area open to challenge.
GP's are under the cosh because the CCG sanction them heavily and if a practice deviates too far they can even be reported to the GMC.
I don't envy the 'political' stranglehold some GP's must feel under which is why I suspect your GP was pleased you took up the cause yourself.

Both NICE & CCG's have discretionary power Amigo...discretion conferred on them by the the Secretary of State for Health...who owes a statutory duty to provide health services,...much of which is delegated to the regional Clinical Commissioning Groups ... inconclusive 'scientific' studies (I use the term scientific loosely) used to promote the practice of saying no to particular groups that are 'easy targets'...does not amount to case law...or judicial authority...as bodies that are empowered only as a product of sub-delegated legislation...they are open to legal challenge...I would like to see more of that happening...not in respect of sun creams...nasal sprays or paracetamol...that's a distraction tactic often used by CCG/administrative authorities to justify arbitrary cost cutting ...but....in respect of the refusal to refer patients to hospital teams...specialist consultants...deny them essential treatment considered too expensive...they need to be reminded of what the NHS is for.

 

[Amigo]

Both NICE & CCG's have discretionary power Amigo...discretion conferred on them by the the Secretary of State for Health...who owes a statutory duty to provide health services,...much of which is delegated to the regional Clinical Commissioning Groups ... inconclusive 'scientific' studies (I use the term scientific loosely) used to promote the practice of saying no to particular groups that are 'easy targets'...does not amount to case law...or judicial authority...as bodies that are empowered only as a product of sub-delegated legislation...they are open to legal challenge...I would like to see more of that happening...not in respect of sun creams...nasal sprays or paracetamol...that's a distraction tactic often used by CCG/administrative authorities to justify arbitrary cost cutting ...but....in respect of the refusal to refer patients to hospital teams...specialist consultants...deny them essential treatment considered too expensive...they need to be reminded of what the NHS is for.

I was involved in the pretty weighty campaign against NICE guidelines in relation to a specific leukaemia drug and there was absolutely no discretion or political wavering or support on this (we all contacted our respective MP's) and the Secretary of State for Health was involved.
They all referred us back to the NICE guidance. Budgets rule!

 

[Bubbsie]

I was involved in the pretty weighty campaign against NICE guidelines in relation to a specific leukaemia drug and there was absolutely no discretion or political wavering or support on this (we all contacted our respective MP's) and the Secretary of State for Health was involved.
They all referred us back to the NICE guidance. Budgets rule!

Doesn't mean we should stop...times change...opinions change...law changes...it won't change if we don't challenge & keep challenging.

 

[Amigo]

Doesn't mean we should stop...times change...opinions change...law changes...it won't change if we don't challenge & keep challenging.

Absolutely agree and this was recent. The battle continues but cost will always be factored in and NICE seem to act as Governmental gatekeepers that they always defer back to. The NHS can use cost as a reason not to provide certain services and arguably, they have to.

Won't stop me from fighting for testing strips however should the need arise. 🙂

 

[Diabetes UK]

Yes, some good points. It does seem that the majority of points in this thread are essentially agreeing on the same point. We all agree that those who wish to test and assess their BG levels should be offered the opportunity to do so.

In answer to queries about Diabetes UK's position on this, our position it is that anyone who manages T2 with hypo-inducing medication should not be restricted. Anyone not on hypo inducing medication should be assessed on individual need and not issued a blanket ban. I believe our full position was posted earlier but you can find it here.
You can view all our position statements on testing, monitoring etc on our website.

Restrictions vary across different CCG's and are often influenced by financial restrictions. Unfortunatley, the prescription of test strips can be affected by this. In regards to the NICE Guidelines, they are clinical guidelines rather than a set of policies, however, many CCG's will follow this guidance to formulate their own, local guidelines. These are however, 'guidelines' and therefore can be challenged.

This is why we so actively encourage anyone who wants to challenge the decision to do so and we offer support for them as best we can.
@dave b - apologies that the thread has deviated from your original request for support. As you can see this is a hot topic!
If you'd like to challenge your GP, please do, there are resources online to support you with this: https://www.diabetes.org.uk/Get_involved/Campaigning/Test-strip-campaigning/
I hope that you have found some good support to your original query?

But individual challenges are not enough and there is a bigger picture. Our regional teams, in particular our Regional Managers and Regional Influencing Managers work on a local level, meeting healthcare professionals, CCG's and working to raise this issue at a local level, in their own regions of the nation. We advocate for individual assessment rather than a general, blanket ban across the board.

Our Policy Team are also addressing this at a national level. You can see some of the work our policy team do here.

in conclusion, we all agree on this point. It is important that we raise awareness of the issue and I would encourage you all to highlight this on a local level. We have an online form to help this so please feel free to shout about it.

https://www.e-activist.com/ea-actio...=1967&ea.campaign.id=67094&ea.tracking.id=web

 

[dave b]

so yesterday I had to go to the doctors for the results of my blood test...... seems I am doing all the right things with diet and weight loss.... (1 and a half stone in 36 days) .....
As getting my knew knee rested on the results the Doc was very pleased and my HbA1c came back great so the new operation date is 14th August.....
SO I SAID TO HIM ABOUT THE TEST STRIPS AND ASKED WHY I WAS REFUSED A PERSCRIPTION FOR THEM....
The answer came back "no problem with that, who told you that you can't have them".... both your ladies on the front desk.....
STRIPS NOW ON REPEAT PERSCRIPTON..... ladies on the front desk got a right ear full on the way out.....
Just shows the ladies on the front desk gave false information when they told me the doctor says no.....

 

[Bubbsie]

so yesterday I had to go to the doctors for the results of my blood test...... seems I am doing all the right things with diet and weight loss.... (1 and a half stone in 36 days) .....
As getting my knew knee rested on the results the Doc was very pleased and my HbA1c came back great so the new operation date is 14th August.....
SO I SAID TO HIM ABOUT THE TEST STRIPS AND ASKED WHY I WAS REFUSED A PERSCRIPTION FOR THEM....
The answer came back "no problem with that, who told you that you can't have them".... both your ladies on the front desk.....
STRIPS NOW ON REPEAT PERSCRIPTON..... ladies on the front desk got a right ear full on the way out.....
Just shows the ladies on the front desk gave false information when they told me the doctor says no.....

Good news dave on both fronts...the strips & your operation...always worth discussing with your GP...wondering if the staff on the front desk even bothered to ask the doctor...possibly assumed (wrongly) it would be a NO...bet they'll ask next time😉...good luck for the 14th.

 

[Copepod]

so yesterday I had to go to the doctors for the results of my blood test...... seems I am doing all the right things with diet and weight loss.... (1 and a half stone in 36 days) .....
As getting my knew knee rested on the results the Doc was very pleased and my HbA1c came back great so the new operation date is 14th August.....
SO I SAID TO HIM ABOUT THE TEST STRIPS AND ASKED WHY I WAS REFUSED A PERSCRIPTION FOR THEM....
The answer came back "no problem with that, who told you that you can't have them".... both your ladies on the front desk.....
STRIPS NOW ON REPEAT PERSCRIPTON..... ladies on the front desk got a right ear full on the way out.....
Just shows the ladies on the front desk gave false information when they told me the doctor says no.....

Congratulations on your weight loss, HbA1c result and go ahead for next operation (other knee replacement?) Shows that it's worth asking GP about prescription decesions and not taking receptionists' words as final truth.

 

[Bill Stewardson]

so yesterday I had to go to the doctors for the results of my blood test...... seems I am doing all the right things with diet and weight loss.... (1 and a half stone in 36 days) .....
As getting my knew knee rested on the results the Doc was very pleased and my HbA1c came back great so the new operation date is 14th August.....
SO I SAID TO HIM ABOUT THE TEST STRIPS AND ASKED WHY I WAS REFUSED A PERSCRIPTION FOR THEM....
The answer came back "no problem with that, who told you that you can't have them".... both your ladies on the front desk.....
STRIPS NOW ON REPEAT PERSCRIPTON..... ladies on the front desk got a right ear full on the way out.....
Just shows the ladies on the front desk gave false information when they told me the doctor says no.....

Nice one.

 

[Northerner]

Just shows the ladies on the front desk gave false information when they told me the doctor says no.....

Great to hear that you got the strips, but it does raise the question - why on earth are receptionists taking it upon themselves to make decisions like this? What are they basing that on in the first place? Terrible!

 

[Bill Stewardson]

Great to hear that you got the strips, but it does raise the question - why on earth are receptionists taking it upon themselves to make decisions like this? What are they basing that on in the first place? Terrible!

Surgery receptionists really do think they are above god at times.

I have started the process to speak to my MP this morning.

Hopefully that will lead to something. I do have in mind one or two suggestions which could help to ease this current bad situation.

 

[Northerner]

Surgery receptionists really do think they are above god at times.

I have started the process to speak to my MP this morning.

Hopefully that will lead to something. I do have in mind one or two suggestions which could help to ease this current bad situation.

Hope it goes well Bill 🙂

 

[Diabetes UK]

Great news @dave b but very frustrating that you were given the wrong information in the first place and as @Northerner says, raises some questions...

 

[Bill Stewardson]

Great news @dave b but very frustrating that you were given the wrong information in the first place and as @Northerner says, raises some questions...

Hello to you Hannah, glad to see your personal interest in this issue and thanks for your input.

I see that DUK had a rep at the formulation of the NICE guidelines, Natasha Marsland a dietician who acted as a patient care rep.

May I ask what her input was please ?

 

[everydayupsanddowns]

Hello to you Hannah, glad to see your personal interest in this issue and thanks for your input.

I see that DUK had a rep at the formulation of the NICE guidelines, Natasha Marsland a dietician who acted as a patient care rep.

May I ask what her input was please ?

My experience was that lay members of Guideline Development Groups are given equal status to medically-qualified or research members of the panel. Often their input is highly valued because it reflects the experiences of real lives lived with the condition (or whatever the GDG is reviewing). They will have been required to review all the clinical trial, research and economic evidence that applies and was tabled at the GDG and then take part in the discussions to attempt to reflect what that evidence says in the guideline, particularly where that evidence is complex, mixed or unclear.

Even where people have a passionate belief in something (either lay members or clinicians) the recommendations can only be made on the balance of the evidence.

As an example, when we began the process I really hoped that it might be possible to improve access to Continuous Glucose Monitoring for people with type 1 diabetes. However, even though I was very keen on it, and many of the clinicians used those technologies to great effect in their practice, a wide spread recommendation was not possible for general use because the balance of the evidence did not support it. Even though a new cost model was undertaken over the lifetime of a person with diabetes that took likelihood of complications (and their cost) into account. The cost (and effectiveness/outcomes) of CGM simply did not meet the threshold for general use.

Either new research trials were needed (showing greater effect) or the CGM tech needed to be cheaper.

I suspect this is exactly the same with T2 and SMBG. The RCT evidence that currently exists (for occasional or more intensive testing, with or without additional HCP support/education) simply do not reflect the results we usually see from people on the forum. There may be 101 reasons for this, and each of us may have uncertainties over various trial designs. It is incredibly frustrating for members here, but there were enough RCTs (randomised controlled trials) that they didn't need to consider other trials - and those RCTs simply did not show sufficient improvement on the SMBG arm to recommed strips for everyone.

That is why my opinion (which I sense is rather unpopular with some people) is that people with T2 need to go to their GP and explain why they as an individual will benefit from strips. Almost to suggest that they are in a slightly unusual group of patients for whom this approach has profound positive effects to physical and mental wellbeing, and improves both clinical outcomes and quality of life (even though we suspect that 'group' is far, far larger than the trial evidence suggests!).

 

[pav]

Good news all round, hate it when receptionists think they are doctors. It was virtually impossible at one practice to get an appointment without telling the receptionists full details of what was wrong. While sometimes it was something simple why one needed to see a doc other times it was an embarrassing thing and only for doctors eyes and ears, and the receptionists got the right hump when told it's none of their business why one wanted to see a doc.

 

[Bill Stewardson]

My experience was that lay members of Guideline Development Groups are given equal status to medically-qualified or research members of the panel. Often their input is highly valued because it reflects the experiences of real lives lived with the condition (or whatever the GDG is reviewing). They will have been required to review all the clinical trial, research and economic evidence that applies and was tabled at the GDG and then take part in the discussions to attempt to reflect what that evidence says in the guideline, particularly where that evidence is complex, mixed or unclear.

Even where people have a passionate belief in something (either lay members or clinicians) the recommendations can only be made on the balance of the evidence.

As an example, when we began the process I really hoped that it might be possible to improve access to Continuous Glucose Monitoring for people with type 1 diabetes. However, even though I was very keen on it, and many of the clinicians used those technologies to great effect in their practice, a wide spread recommendation was not possible for general use because the balance of the evidence did not support it. Even though a new cost model was undertaken over the lifetime of a person with diabetes that took likelihood of complications (and their cost) into account. The cost (and effectiveness/outcomes) of CGM simply did not meet the threshold for general use.

Either new research trials were needed (showing greater effect) or the CGM tech needed to be cheaper.

I suspect this is exactly the same with T2 and SMBG. The RCT evidence that currently exists (for occasional or more intensive testing, with or without additional HCP support/education) simply do not reflect the results we usually see from people on the forum. There may be 101 reasons for this, and each of us may have uncertainties over various trial designs. It is incredibly frustrating for members here, but there were enough RCTs (randomised controlled trials) that they didn't need to consider other trials - and those RCTs simply did not show sufficient improvement on the SMBG arm to recommed strips for everyone.

That is why my opinion (which I sense is rather unpopular with some people) is that people with T2 need to go to their GP and explain why they as an individual will benefit from strips. Almost to suggest that they are in a slightly unusual group of patients for whom this approach has profound positive effects to physical and mental wellbeing, and improves both clinical outcomes and quality of life (even though we suspect that 'group' is far, far larger than the trial evidence suggests!).

Yes, I have managed to figure out the need for individuals to represent themselves re strips etc.

About Natasha's input ?? Would I be correct in assuming there was none ?

 

[everydayupsanddowns]

About Natasha's input ?? Would I be correct in assuming there was none ?

I'm not sure how you can dismiss someone's contribution so easily. Since neither you nor I were in the meetings I suggest both of us would be guessing.

What I was trying to clarify is that whatever Natasha's personal opinion, passion, commitment or otherwise about the use of test strips in T2 for those on D&E/Metformin... however voiciferously she argued (or didn't)... what mattered is what the combination of the evidence (both for and against) said. The results of the research trials. All those in favour... and all those that found little benefit. Combined and meta-analysed. Weighted for large trials and smaller trials. What the evidence said on balance - even if we wish it said something else.