How others view Diabetes and Diabetics

[Plumeraider]

As some of you may know, my diagnosis to T2D was only given to me on Tuesday and a very unpleasant experience that was, not just about the illness itself but the disgusting, uncaring and arrogant way the news was delivered to me by some non-medical staff at my surgery.
Since then I have spoken to a good friend of mine who has worked for many years in very senior roles supporting vulnerable people, dealing with their health issues, their families, the authorities, and their medical professionals. To my surprise, she wasn’t shocked by callous way my diagnosis was delivered, she has seen it before.
She believes there is a common misconception that all diabetes is caused by obesity and obesity is a lifestyle choice, hence the unsympathetic approach shown by many, including HCPs, to those who are diagnosed diabetic. I am curious to know if this has been similar to the experiences others have had when diagnosed or treated, and if my friend’s belief makes sense? I have a horrible feeling it does.

 

[Leadinglights]

As some of you may know, my diagnosis to T2D was only given to me on Tuesday and a very unpleasant experience that was, not just about the illness itself but the disgusting, uncaring and arrogant way the news was delivered to me by some non-medical staff at my surgery.
Since then I have spoken to a good friend of mine who has worked for many years in very senior roles supporting vulnerable people, dealing with their health issues, their families, the authorities, and their medical professionals. To my surprise, she wasn’t shocked by callous way my diagnosis was delivered, she has seen it before.
She believes there is a common misconception that all diabetes is caused by obesity and obesity is a lifestyle choice, hence the unsympathetic approach shown by many, including HCPs, to those who are diagnosed diabetic. I am curious to know if this has been similar to the experiences others have had when diagnosed or treated, and if my friend’s belief makes sense? I have a horrible feeling it does.

There is a point of view from some maybe more enlightened doctors that it is actually an impaired ability to cope with carbohydrates that causes obesity not the other way round.
Clearly Type 1, Type 3c and the other variants are a different situation all together.

 

[Plumeraider]

There is a point of view from some maybe more enlightened doctors that it is actually an impaired ability to cope with carbohydrates that causes obesity not the other way round.
Clearly Type 1, Type 3c and the other variants are a different situation all together.

That's interesting and I think has some merit. I must admit annoyance at my diagnosis being treated so badly as I am not obese (and never have been) and exercise (thanks to my dog) every day. I do wonder where my 'deliverer of bad news' got her lousy attitude from because it was disgusting.

 

[Vonny]

I'm very lucky that we have a dedicated DN nurse at our surgery who is really lovely. Although obesity was a lifestyle choice for me at the time, she never said as much and gave me a lot of kind encouragement to lose weight. Which I did, 5 stones of it. I never thought I could become diabetic because I hardly ever have sweet stuff, and I didn't realise that carbs were a big culprit 🙄 A lot of healthcare professionals are still hot on the low-fat high carb mantra, but my DN and this lovely forum have been really positive in me making big changes to the way I eat, with the result that I'm fitter than I've been for decades.

 

[everydayupsanddowns]

Sorry to hear about your negative experience @Plumeraider

No-one deserves to be treated unkindly, and no-one deliberately sets out to get T2 diabetes.

Plus there’s a significant genetic component. 2 people could have just the same ‘lifestyle’, and even have the same amount of insulin resistance, but one would develop T2D, while the other never would.

Diabetes UK are currently undertaking a significant piece of work to try to identify, understand, and tackle the stigma which so often swirls around diabetes.

How we're working to tackle diabetes stigma

What is diabetes stigma? Diabetes stigma can take lots of different forms. It may involve being subjected to a throwaway comment, encountering myths and misconceptions about what diabetes is and what causes it, or it could be negative behaviour towards those living with the condition. Whatever...

www.diabetes.org.uk

 

[kathy s]

My diagnosis was given to me by a Dr I didn't know. Told me I was diabetic ( hereditary) but don't worry as I wasn't overweight given a prescription for metformin. ( which I later reacted too) and sent on my way. Without the help of health professionals I've lost 2.5 stone , have to be careful now, and hba1c is 38! Low carb all the way for me!

 

[Gwynn]

Not sure if my experience was worse or just as bad but from a slightly different point of view.

Rushed to hospital, couldn't balance, speak, dizzy. HbA1c 150 (ish). No one seemed to care but I was given a bed there for a week. Given the diagnosis of diabetes type 1, given insulin, but blood glucose checks just 3 times a day. I had no idea what was going on and no idea what my blood glucose readings were (nor would I have understood then anyway). No one had time to explain anything. Just before I was sent home I was given a blood glucose monitor and insulin but they didn't have time to show me what to do. Sent home with little information but lots of confusion.

Felt unwell and BGs all over the place (I worked out how to use the blood glucose meter and inject the insulin). After about a week of this, seeing some worrying low BG readings, I rang 111 who told me it was ok to stop taking the insulin. So I did and everything else they had shoved me on. I had no idea or warning that that might have been a bad idea. But my blood glucose then settled ok.

Then, a liitle while later, I was rediagnosed as type 2. I only found out because I rang the surgery for something else. They just happened to mention it in passing! They also said that I had been pre diabetic for a while (but no one had bothered to mention it to me!) I decided to go the low carb/ weight loss route, no meds, and all just got better and better.

I am now in remission, no meds, can eat pretty much anything (but I don't) and exercise every day.

The surgery nurse was good, kind, listened, advised when I saw her. The hospital were poor to say the least (over worked). I have to say it, the food given was totally inappropriate for diabetics and there was no choice!!!

Rudeness and an offhand manner are not acceptable and no one wants/expects a diagnosis (for life) of diabetes let alone any stigma thown at them, so I certainly sympathise with you.

I just wish there was more understanding/empathy/knowledge/access to positive help.

Oh, and, I am amazed at just how many people I know who are diabetic. It seems quite common and yet the general attitude among non diabetics can be a bit negative/judgemental.

 

[Plumeraider]

I am amazed at how common the problem of misconception or ignorance is, amazed and saddened. I know Diabetes UK do a great deal of TV advertising, for which I am very grateful as it helping me get advice, but should the adverts also do more to educate people that Diabetes isn’t a life style choice, it is deadly serious, can happen to anyone at whatever age and should be treated with a lot more resect (especially by Health Care Professionals)?

 

[Docb]

@Plumeraider @Gwynn, one of the things that frustrates me much about the NHS is that you can go to different parts of it and get a wildly different response. It is the sort of thing that successful large business stamped out long ago, largely because it is a better way to run the business when considered from almost any angle.

When it comes to diabetes we have stories like yours which are at one extreme to stories from others where the care has been exemplary. If anything needs to be sorted out in the NHS it is to get consistency across the piece. If the professionals came out with a consistent line then the media might not continually come out with the sensationalist, stereotyping nonsense that the rest of the world sops up and uses to react to such things as diabetes when they come across it. Do the simple things well and it is amazing how that can make a business work better.

(rant over..put moderators hat back on)

 

[Plumeraider]

@Plumeraider @Gwynn, one of the things that frustrates me much about the NHS is that you can go to different parts of it and get a wildly different response. It is the sort of thing that successful large business stamped out long ago, largely because it is a better way to run the business when considered from almost any angle.

When it comes to diabetes we have stories like yours which are at one extreme to stories from others where the care has been exemplary. If anything needs to be sorted out in the NHS it is to get consistency across the piece. If the professionals came out with a consistent line then the media might not continually come out with the sensationalist, stereotyping nonsense that the rest of the world sops up and uses to react to such things as diabetes when they come across it. Do the simple things well and it is amazing how that can make a business work better.

(rant over..put moderators hat back on)

I totally agree. I worked for the NHS way back in the 70s when the main aim of the NHS was patient care. These days, it seems overwhelmed by being obsessed with statistics, wokism, diversity, inclusivity, all of which is fine but, it seems to have forgotten it's main task in life is the care for the sick and vulnerable which is now a secondary consideration hence the quality of care is so haphazard. I know from recent experience of working in the NHS again a few years ago, hospitals, clinics and surgeries are driven by statistics and budgets like some sort of factory production line. What has been forgotten is the production line is for people not products so we don't all fit into nice little categories, we have fears, we want answers, we ask for respect, we get scared especially if, like me, we live alone. A good cure for that is consistency in the treatment and advice offered.

Okay, time to get off my soapbox

 

[Proud to be erratic]

I totally agree. I worked for the NHS way back in the 70s when the main aim of the NHS was patient care. These days, it seems overwhelmed by being obsessed with statistics, wokism, diversity, inclusivity, all of which is fine but, it seems to have forgotten it's main task in life is the care for the sick and vulnerable which is now a secondary consideration hence the quality of care is so haphazard. I know from recent experience of working in the NHS again a few years ago, hospitals, clinics and surgeries are driven by statistics and budgets like some sort of factory production line. What has been forgotten is the production line is for people not products so we don't all fit into nice little categories, we have fears, we want answers, we ask for respect, we get scared especially if, like me, we live alone. A good cure for that is consistency in the treatment and advice offered.

Okay, time to get off my soapbox

I can't fault anything in this @Plumeraider. Nor can I find anything to disagree with @Docb's point. However I think it is the magnitude of the NHS that is at the heart of the problem.

When in the late '50s Alfred Schumacher wrote "Small is Beautiful" he did so as an economist with origins in the educational world but proven practice and experience from the real world. He had just retired as the Head of the then Central Electricity Generating Board, CEGB, successfully steering what was the largest public sector industry in UK through a period of growth, expansion and commercial difficulty from an underfunded background. I am constantly reminded by big mishaps that Small really is Beautiful. Big is invariably unwieldy and inefficient in delivery. With a budget in billions no one individual can control the spend. For Trusts with budgets in many millions again the spend is uncontrollable in practice - even if the background comprised consistent rules and guidelines and were not subject to media commentary and pressure.

Our newly elected Gov't has jumped on the bandwagon that the NHS is broken. Personally I think that is a fair summary - but such honesty will be hugely demoralising for those direct NHS employees and become devastating if they don't get a sense of improvement in months not years. I think there are c.1.3m people as at 10 months ago - but even that figure isn't clear if those 1.3m employees are paid directly by the NHS or from Agencies and sub-contractors. Such is the confusing nature of this mammoth organisation.

Whatever anyone might think or say it is just not possible to physically show to 1.3m people that change is really happening, that things are really getting better and former wasteful practices are a thing of the past, that salaries and working conditions have magically improved - even if there was an overnight huge increase in the NHS budget allocations. These things take time to percolate through from the top to the extremities and perceptions are facts until such perceptions are changed by different facts.

Talking of taking time to educate and implement: I see from the NHS published monthly Workforce Statistics the preamble for these stats for March 2024 explain that:

Geographical Granularity: Ambulance Trusts, Care Trusts, Clinical Commissioning Groups, Hospital and Community Health Services, Hospital Trusts, Mental Health Trusts, NHS Trusts, Regions.  Note this includes Clinical Commissioning Groups (CCGs) which were disbanded on 1 July 2022, replaced by much larger geographic Integrated Care Systems. It seems that the NHS statistics compilers haven't been told about this, or their IT is so inflexible they can't amend the Headings. This all makes the detail highly arguable when the basis is in accurate.

So that is the big picture challenge. On a micro scale getting an improved awareness of how pernicious Diabetes can be for so many people, getting the staff of a disenfranchised GP Surgery retrained (reindoctrinated) to remember they are there for the benefit of patients first and foremost - needs leadership from above and within each Surgery; yet Diabetes is in practice only a tiny part of a GP Surgery's business. All that without an uncontrolled media, happy to exploit any titbit into whatever they want it to be, seemingly regardless of the truth (again: "perception is fact, never mind the reality").

That perception cascades into "How others view Diabetes and Diabetics"; an intriguing question.

 

[Docb]

@Proud to be erratic - big can be made to work, look at the big tech companies and big logistics companies like Amazon. OK you might not like some of their business practices but when you deal with them, you can more or less predict what you are going to get. That has not come about by accident, it has come about because managing a business is much easier when the whole business operates to common standards and procedures. When you deal with the NHS you do not know what to expect.

T

 

[Proud to be erratic]

@Proud to be erratic - big can be made to work, look at the big tech companies and big logistics companies like Amazon. OK you might not like some of their business practices but when you deal with them, you can more or less predict what you are going to get. That has not come about by accident, it has come about because managing a business is much easier when the whole business operates to common standards and procedures. When you deal with the NHS you do not know what to expect.

T

Amazon certainly is big financial business (and yes I don't like some of their business practices). But nothing like as diverse as the NHS with its 1.3m workforce and an even bigger patient count - never mind the breadth of "Geographic Granularity" that the NHS is trying to integrate. Amazon can and pretty well does ignore media criticism, provided it remains profitable; Amazon isn't subject to the vagaries of Government promises to the electorate, nor the uncertainties of changing Secretaries of State! If world politics messes up Amazon's logistics, it's customers have to "suck it up" and Amazon can shelter behind the excuse that world events have disrupted the deliveries from China (or wherever). I wholly accept Amazon is helped by having a business operating to common standards; which not only doesn't exist in the NHS but can not be hastily introduced retrospectively into the NHS regardless of whether this new Gov't could fund such a theme. The NHS is seriously constrained by employment legislation; much of Amazon's workforce have zero hours contracts.

So I'm inclined to think you are comparing chalk and cheese, not even apples and oranges.

 

[Docb]

@Proud to be erratic, you are quite right in all you say but it does not mean that there are not things that one can learn from the other.

 

[Proud to be erratic]

Again, I agree there is a lot to be learnt from others. My point remains that the scale of the NHS makes getting the new message through is massive. However much goodwill there might be nestling within the workforce to accept change and do things differently (including a lot of restructuring with inevitable job changes and losses) if not implemented speedily everyone (staff and patients alike) will be disappointed and that possible goodwill lost.

Remember, we've all been told by the incoming Health Minister the NHS is broken. Expectations are now massive, yet morale is extremely low on all fronts. I can trade on my age and manage my expectations of how this might be achieved. But I doubt the general public will be so tolerant. Nor will the media be gentle for very long.

The repair of the NHS will take a lot of doing, a lot of extra money and a long time. The time can be shortened by sub-contracting large chunks to industry (eg pumps and HCL??) and let those specialists deliver everything including all training for staff as well as for patients. Where they will get their extra staff from could be interesting. Poached from the NHS? Or remotely from non-english speaking specialists around the world? Rushed contracts bring inflated costs (PPE?). Just speculating.

 

[JITR]

Managing a business is much easier when the whole business operates to common standards

Correct!

Some things are better done centrally, such as setting common standards, as few as possible. Done well, these things make life simpler at the point of delivery.

An NHS leaflet I picked up at the surgery the other day said:

This is a national problem:
- Insufficient detection and diagnosis
- Low patient awareness and understanding
- Incomplete knowledge amongst healthcare professionals

That describes my experience precisely.

A concerted action by all involved to publlsh a common standard approach, based on current knowledge and best practice, would easy enough to achieve. This would include publications available to patients and HCPs alike. Determination and deadlines are all that is necessary, plus timely updates. This is not one for NICE.

Meanwhile it is no wonder the Plumeraider has been upset by NHS staff who do not know what to do.

 

[helli]

big can be made to work, look at the big tech companies and big logistics companies like Amazon.

NHS is not just big like Amazon. It is enormous.
The only employer in the world employing more people than the NHS is the Chinese Army.
I don't disagree that it should be more consistent and there should be shared values but when it is soooooooo big, it becomes much harder than Amazon apologising for losing your parcel.

 

[Proud to be erratic]

Relating the NHS declared Geographical Granularity:

Ambulance Trusts,​

Care Trusts,​

Clinical Commissioning Groups,​

Hospital and Community Health Services,​

Hospital Trusts,​

Mental Health Trusts,​

NHS Trusts,​

Region​

​

to this NHS National problem:

Insufficient detection and diagnosis​

Low patient awareness and understanding​

Incomplete knowledge amongst healthcare professionals​

​

will be fascinating to see how that is achieved.

At all​

Never mind visibly and promptly enough for demoralised Staff and / or Patients.​

At what cost?​

​

Glad this is not MY problem to solve. Interesting listening to Giles Brandreth this morning on BBC1, who talked in his normal light and yet insightful manner about accepting and embracing change and maintaining a positive outlook for increased personal longevity [about the change of Gov't not to do with the NHS].

 

[Docb]

I knew my reference to Amazon would get some pushback! OK, the NHS is really, really, big but at the ground level it looks unbelievably disorganised to anybody who has worked in an industry that is well organised.

Starting by getting rid of the stupid things might be a start. A classic example was when I went for a lumbar puncture.....The obviously new doctor doing it spent the first half an hour on his mobile or wandering round the corridors trying to find somebody to tell him what coloured phials the various samples he took went into. When I left he was still trying to work out how to divide up the large sample he took into individual sample tubes. The results came back negative but I have little confidence in the test being done correctly. Why could he not click a button on one of the screens in the room and be presented with the local procedures for taking samples from lumbar punctures? Oh, and why was there a nurse stood in the corner of the room for the hour or so I was there who did not say or do anything even though she probably knew exactly what was wanted. Surely she would have been better employed and much happier if she was doing some "nursing".

Don't get me going on the carers bed or my brothers experience of what he called Stalag Luft 6 in the John Radcliffe hospital in Oxford. Full of stuff that any successful industrial manager would not tolerate.

 

[Wendal]

Relating the NHS declared Geographical Granularity:

Ambulance Trusts,​

Care Trusts,​

Clinical Commissioning Groups,​

Hospital and Community Health Services,​

Hospital Trusts,​

Mental Health Trusts,​

NHS Trusts,​

Region​

​

to this NHS National problem:

Insufficient detection and diagnosis​

Low patient awareness and understanding​

Incomplete knowledge amongst healthcare professionals​

​

will be fascinating to see how that is achieved.

At all​

Never mind visibly and promptly enough for demoralised Staff and / or Patients.​

At what cost?​

​

Glad this is not MY problem to solve. Interesting listening to Giles Brandreth this morning on BBC1, who talked in his normal light and yet insightful manner about accepting and embracing change and maintaining a positive outlook for increased personal longevity [about the change of Gov't not to do with the NHS.