Untruthful & Hurtful Hospital Letters

[Inka]

I’ve always been told that 53 or under is excellent control. I know it’s individual, but maybe the target is 48 knowing that most Type 1s will be a bit above that?

 

[Bruce Stephens]

I’ve always been told that 53 or under is excellent control. I know it’s individual, but maybe the target is 48 knowing that most Type 1s will be a bit above that?

If I remember correctly @everydayupsanddowns has commented on the target in the past. I think it's acknowledged that most people (with Type 1) won't be able to achieve it, but they feel it's worth having 48 as the main target because it's the diagnostic cutoff and because if you do manage to get to 48 that's about as good as you can get (probably, as far as anyone can tell, going lower isn't going to buy you much).

And 53 is a similar goal because while 48 is better, 53 or under is apparently really close. (The risk of complications against HbA1c is a long way from a linear scale.)

 

[everydayupsanddowns]

The change in the ‘aim for’ HbA1c happened during the development process of the NICE Guidelines for T1 in Adults that I was part of, so I was there during (and contributing to) the discussions.

Previously the target was 7.5% or 58mmol/mol and it had been the recommendation for some time, so I’d suggest that 58mmol/L or below would certainly count as well managed diabetes. And I can completely understand your annoyance at the use of the phrase “poorly controlled” @MikeyBikey

The UK was the first country in the world to set a lower ‘aim for’ target. Crucially, the guidance suggests you can ‘aim for’ 48, but also that your HCP should agree a personalised target that takes each person’s situation into account.

The most recent National Diabetes Audit shows that around 40% of people with T1 in England hit the previous target of 58mmol/mol

For the revised target of 48mmol/mol the figure drops to just over 14% of people with T1 in England.

I think the average HbA1c for people with T1 in England is more like 75mmol/mol (9%).

The change was mostly driven by the nature of the review question. Which was about avoidance of long-term complications. So the Guideline Development Group had to look for the HbA1c which was most effective in terms of preventing long term complications (including hypoglycaemia unawareness / severe hypoglycaemia), not the target which was most achievable.

If I remember right, for eye-related complications in particular there were clinically significant benefits in aiming for 48mmol/mol for those lucky enough to be able to get there.

It was also designed to stop people with lower HbA1cs being told that their result was too low, and that they needed to increase it.

I write this at the time, amid the understandable murmurings within the Diabetes Online Community at the reduction

6.5% - Are they mad?

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.

www.everydayupsanddowns.co.uk

 

[AndBreathe]

The change in the ‘aim for’ HbA1c happened during the development process of the NICE Guidelines for T1 in Adults that I was part of, so I was there during (and contributing to) the discussions.

Previously the target was 7.5% or 58mmol/mol and it had been the recommendation for some time, so I’d suggest that 58mmol/L or below would certainly count as well managed diabetes. The UK was the first country in the world to set a lower ‘aim for’ target. Crucially, the guidance suggests you can ‘aim for’ 48, but also that your HCP should agree a personalised target that takes each person’s situation into account.

The most recent National Diabetes Audit shows that around 40% of people with T1 in England hit the previous target of 58mmol/mol

For the revised target of 48mmol/mol the figure drops to just over 14% of people with T1 in England.

I think the average HbA1c for people with T1 in England is more like 75mmol/mol (9%).

The change was mostly driven by the nature of the review question. Which was about avoidance of long-term complications. So the Guideline Development Group had to look for the HbA1c which was most effective in terms of preventing long term complications (including hypoglycaemia unawareness / severe hypoglycaemia), not the target which was most achievable.

If I remember right, for eye-related complications in particular there were clinically significant benefits in aiming for 48mmol/mol for those lucky enough to be able to get there.

It was also designed to stop people with lower HbA1cs being told that their result was too low, and that they needed to increase it.

I write this at the time, amid the understandable murmurings within the Diabetes Online Community at the reduction

6.5% - Are they mad?

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.

www.everydayupsanddowns.co.uk

I was looking through the NDA site and couldn't find any reports newer than 2022? I didn't find it the easiest site to work around, so I may have missed newer iterations.

I'm not challenging anything you say, but just fancied a peep at the latest info. (I thought I have previously bookmarked it.)

Thanks, in anticipation.

 

[everydayupsanddowns]

I was looking through the NDA site and couldn't find any reports newer than 2022? I didn't find it the easiest site to work around, so I may have missed newer iterations.

I'm not challenging anything you say, but just fancied a peep at the latest info. (I thought I have previously bookmarked it.)

Thanks, in anticipation.

I downloaded the 2023-2024 data release from NHS Digital Somethingorother!

 

[everydayupsanddowns]

This was where I found it

National Diabetes Audit Core Report 1: Care Processes and Treatment Targets 2023-24, Underlying data - NHS England Digital

This data release includes the diabetes care process and treatment target measurements for the full 2023-24 audit period (1 January 2023 – 31 March 2024); presented for England primary care and specialist services (hospital-based care), each with its own separate data file.

digital.nhs.uk

 

[Lisa65]

The change in the ‘aim for’ HbA1c happened during the development process of the NICE Guidelines for T1 in Adults that I was part of, so I was there during (and contributing to) the discussions.

Previously the target was 7.5% or 58mmol/mol and it had been the recommendation for some time, so I’d suggest that 58mmol/L or below would certainly count as well managed diabetes. And I can completely understand your annoyance at the use of the phrase “poorly controlled” @MikeyBikey

The UK was the first country in the world to set a lower ‘aim for’ target. Crucially, the guidance suggests you can ‘aim for’ 48, but also that your HCP should agree a personalised target that takes each person’s situation into account.

The most recent National Diabetes Audit shows that around 40% of people with T1 in England hit the previous target of 58mmol/mol

For the revised target of 48mmol/mol the figure drops to just over 14% of people with T1 in England.

I think the average HbA1c for people with T1 in England is more like 75mmol/mol (9%).

The change was mostly driven by the nature of the review question. Which was about avoidance of long-term complications. So the Guideline Development Group had to look for the HbA1c which was most effective in terms of preventing long term complications (including hypoglycaemia unawareness / severe hypoglycaemia), not the target which was most achievable.

If I remember right, for eye-related complications in particular there were clinically significant benefits in aiming for 48mmol/mol for those lucky enough to be able to get there.

It was also designed to stop people with lower HbA1cs being told that their result was too low, and that they needed to increase it.

I write this at the time, amid the understandable murmurings within the Diabetes Online Community at the reduction

6.5% - Are they mad?

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.

www.everydayupsanddowns.co.uk

I guess now with CGM, type 1s are less likely to be told they must be having loads of hypos if their Hba1c is low!

 

[everydayupsanddowns]

I guess now with CGM, type 1s are less likely to be told they must be having loads of hypos if their Hba1c is low!

Yes I think that was an easy assumption to make before CGM became offered more widely. It’s good to see the proportion of people hitting the 48mmol/mol target improving in recent years too. It seems to have more than doubled!

 

[AndBreathe]

This was where I found it

National Diabetes Audit Core Report 1: Care Processes and Treatment Targets 2023-24, Underlying data - NHS England Digital

This data release includes the diabetes care process and treatment target measurements for the full 2023-24 audit period (1 January 2023 – 31 March 2024); presented for England primary care and specialist services (hospital-based care), each with its own separate data file.

digital.nhs.uk

Excellent, thanks.

 

[trophywench]

For years and years I generally attempted to get my A1c down from the low 50's to under 50. When I packed in that horrible work thing in and for a change I could concentrate on me me me 24/7 - I decided to try harder. FP testing at least hourly. (no commonly available CGMs then) Micro-managing insulin dosing. Literally a fulltime job!

Yes I did get my A1c down to 49. Never again. Far too much work interspersed by far too many hypos. Settled back nicely into the low 50s, whilst being able to have a normal life alongside that.

 

[Bruce Stephens]

Yes I did get my A1c down to 49. Never again. Far too much work interspersed by far too many hypos. Settled back nicely into the low 50s, whilst being able to have a normal life alongside that.

In the past few years all of mine have been between 49 and 53. I suspect the 49 was just chance (I don't remember anything particularly special leading up to that).

I presume as more people are offered pumps and HCL (and all of us get CGMs) it'll be easier to get to lower values. My guess is that the main benefit will be getting most people down to low 50s (from sometimes much higher than that) rather than further. And I'd hope everyone will come to see the main goal (for HCL and other things) as making life easier for us while we get reasonably close to 48 but probably rarely achieving that target.

 

[PhoebeC]

I am sorry @MikeyBikey . I hope the GP is more understanding. Please keep us updated.

So my Hb1Ac was 49 a few weeks ago, amazing and the best I have ever bee. Me and my DSN is happy, TIR is only 62%ish for that same time, less than 1% under 4.5, so great. But I would like less above 13. My DSN agrees, and we are working on, this may improve or even lower the Hb1Ac. My GP is very happy with they Hb1Ac and did not seem to understand at all the TIR or why I would want to improve this. She said that if I lower it anymore that will be due to hypos, which I must avoid, but with such a low level of hypos now with the HCL, CGM alerts and my experience I do not see that as a risk and take what she says as a less knowledge source. Urgh.

 

[Tom1982]

A couple of weeks back Jo had one of her three monthly consultant meetings. We regularly see different people, I assume that’s normal? Anyway it’s only the second time I’ve missed one and coincidentally it was with the same fella who I missed before. Despite her A1c being down to 42 and her time in range with the new pump in the 90s the missus has come out of there crying. He’s had a pop at her about levels going out of range at night for a while! To say I was not happy at the news was an understatement. The worst bit is, the same thing happened at the first one I missed too. This bloke either needs a slap or a change of career.