Newly diagnosed - what should I expect (NHS)?

[RLCC]

I've been reading this forum since I was diagnosed with Type II at the end of June, and have found the contributions and discussions here very helpful. I am in the UK using my NHS GP. My HBA1c came back as 51 at the end of June after a routine blood test done as part of a general health check. My Type 2 diagnosis was confirmed by phone after a 2nd HBA1c test 2 weeks later which came back at 49. I have only spoken briefly to a GP in a phone call when my blood results came back. They told me that I should start by trying to manage it with dietary changes, and should arrange an initial consultation with a specialist diabetes nurse at the practice who would then refer me into an NHS education program and that this would also lead to arranging for me to see a dietician as I am overweight and need to bring that down. So far so good.

The first appointment I could get with the diabetes nurse was today. The receptionist checked my notes when booking it as I said this was for an initial appointment after diagnosis. It's taken just over a month for that to happen. My session with the nurse was not quite what I had expected. I have bought a glucose monitor and have been testing myself for the last 2 weeks to start to get a handle on what foods are OK and where the real problem areas are as I adjust my diet - my GP declined to let me have an NHS one a I am not Type I. The nurse said she wouldn't understand those readings and was the wrong person to show them to. I expressed surprise as I thought she was the "specialist diabetic nurse" and she told me that she wasn't, but was there to cover for that nurse who was away on maternity leave until next year. It turned out that she thought I was there for a routine diabetic monitoring check, and not an initial consultation. So we ran through the routine checks - blood pressure, weight, examined my feet (I have some minor issues there, which look to be diabetes related) and asked some mental health questions. I asked her about being referred to the NHS education programme, but she told me she couldn't do that as she knew nothing about it. She gave me some samples of creams for my feet, but when I asked whether these were available on prescription she said I would need to buy them (I already have a pre-paid prescription certificate, so want to use it when possible).

I had wanted to discuss diet and some of the readings as I know now I have had two hypos and one hyper in the 2 weeks since getting the meter - I recognised both as things that had been happening when I was having "off" days at work, but now I know what they represent and want to get a better handle on managing things to avoid them. Again the nurse said this wasn't something she could help me with. I also asked about low carb diet, and what proportion of fat and protein I should be aiming for. She gave me a leaflet on heart disease and told me to cut out eating cakes and cream (I don't eat either). When I asked about whether I could see a dietician or get any help with my foot problems she told me she didn't know anything about dieticians and I should read the heart disease leaflet, and that she didn't think my foot problem was bad enough to see an NHS podiatrist, so I should see one privately instead.

I've come out of this feeling deflated as this is not following the roadmap my GP laid out in the call after first diagnosis. I'm not sure whether to ask the surgery for another appointment with someone else to try and trigger getting more help/referral, or what I should do next. I am not wealthy, and do not have the funds to pay for much, if anything, privately. How far does this diverge from what should happen at an initial appointment after diagnosis? What, if anything, should I be asking my GP surgery to do next? The receptionist called me last week to book me in for a phone call with their pharmacist in 2 weeks time to discuss my diabetes, but said they didn't know why they had been asked to make that appointment. I'm not sure what role they will be playing in my care. At the moment I am feeling rather confused and would appreciate some wisdom from those further down this path.

 

[Rachox]

Hi @RLCC and welcome to the forum. Although I received good help from the NHS when I was diagnosed, it does seem help on diagnosis ranges from excellent to non existent. Your HbA1cs are at the low end of the diabetic range and I see no reason why you can’t gain control with diet alone. The dietary advice you receive will most likely be questionable, so I suggest you have a read of this blog written but one of our members. Many of us have gained control and return non diabetic results using a low carb way of eating.
https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html

 

[Outlier]

Unfortunately your experiences are not atypical. Some of us have had good support, some none, the rest on a sliding scale. The good news is that there is a wealth of information here for you to access, and we who post here have lived the experience. We are all different, and diabetes presents itself in a number of ways. Do have a good read round and come back to us with your questions and comments. Welcome!

 

[MrsA2]

@RLCC I'm so sorry your experience was not what you'd hoped for. Sadly it's all too common these days. I'm another who has poor care from my GP surgery. Mine initially went wrong as I was diagnosed on Lockdown day in 2020 and never got my second test so am not officially diabetic although my blood tests and learning since tell me I am.
I'm just a case of "computer says No".
However, the good side of all this was finding my way here, and to lots of other resources, that I have used to control my own Bg and my own health and weight .
Who needs the NHS? Not for my type 2 I don't (or for the last 4 years, maybe in the future?)
Biggest change for me by far was to move to a low carbohydrate diet. I went almost keto initially but have now relaxed a bit, although that has lead to me regain 1 of the 3 stone I lost initially. I'm still an OK bmi though and everyone tells me how healthy I look.

For you, I'd suggest more reading and research and post any questions on here. We are all in the same boat, some managing better than others, but are helpful and non judgemental. It's a brilliant forum and resource.

There's no immediate rush to conquer diabetes. T2 takes years to develop and maybe as long to remission. It's your journey, go at your speed and soon you won't need a third parties (nhs) validation, you'll see your results for yourself.

 

[Chris24Main]

Hi @RLCC - It's only been a year for me, and I totally remember how vulnerable I felt on my first sets of meetings, and how confusing it all seems.

I'm pretty shocked at the level of care you've received, but it's something of a double edged sword in any case; it would seem that there are levels of "looking after you in a caring way" - but the underlying treatment can often simply be down to you... settling in to a cosy sense of the team looking after you did absolutely nothing at all for me.

The good news is, I totally agree with the others above; your HbA1c levels are not at the high end of the spectrum. You can turn this around. If you read some of the (particularly the official) guidelines, it's easy to feel that diabetes is a one-way street toward nothing good. I'm more and more feeling that because of this diagnosis, I've been alerted to, and learned about ways of eating that leave me feeling much healthier now than with what I'd been taught my entire life - and I'm thankful to have been forced a little way down the rabbit hole, because I can see now lots of people I love who never had that moment.. get very ill for lots of reasons that I now understand but they never did.

Don't be put off by the lack of understanding from a fill-in nurse. The NHS is an amazing organisation, staffed with incredibly dedicated people, but the sheer lack of understanding of what diabetes really is, and what to do about it, it's tough to wrap your head around.

But - there are many many things that you can do. I'm not going to bombard you with options, but getting a CGM is a hell of a positive start.

I hope that future experiences with your care team are better than this, but the more you can do for yourself, the better. Please keep us in the loop... and try not to stress about it

 

[KennyA]

Welcome to the club no-one wnated to join. You've had a bad experience with the NHS, it happens. I don't get any advice or support from my practice, I just go in for them to do the monitoring (which is more in their interests than mine). 90% of what I know I learnt on this forum.

Your readings are exactly what mine were nearly five years ago.

The good news is that there is something you can do - you've had the link to the "nutritional thingie" - and I found that low carb (very low in my case, 20g/day) worked a treat. Having been diagnosed in January, my a1c was 36 (non-diabetic) in April. I'd probably been diabetic for about ten years before diagnosis and had a large number of symptoms. These have gone for the most part (I have some permanent damage) but the minot stuff left is nothing like what I had with higher BG levels.

best of luck. This forum is a great resource. Ask as many questions as you need to.

 

[RLCC]

Thanks all who have replied so far. My GP's surgery sent me a satisfaction survey this morning, so I have given them 1/10 and explained that arranging a specialist nurse appointment with a month long wait, and then not delivering on that or any of the promised referrals was very poor. I have no idea if it will make any difference to how they approach things in the future, but we'll see. My main concern ATM is whether I can be referred to any of the diabetes related services the GP mentioned when I was diagnosed. I will be chasing them up about that.

 

[Chris24Main]

Something that seems increasingly clear to me is that all health services, and indeed all medical training, are set up to respond to invasive or pathological insult - meaning some illness that has invaded or made something go wrong - you need to identify the pathology and prescribe the corrective medicine.

That is in no way a criticism of any given system of medicine, or endorsement of anything - it just is what it is, but everything is then seen through that lens..

but - it makes it incredibly difficult to even engage with the possibility that many chronic non-invasive conditions (including but by no means limited to) T2DM are driven not by something invading our bodies, but as a result of people following a generation of advice about what to put in our bodies on the end of a fork.

Bizarrely, I feel more and more supportive of my own GP for being even in the least bit open to this.

 

[SRDO]

After a routine blood test undertaken as part of the 5 year NHS health check my numeric reading came as 42. Received notification from the surgery today about enrolling on the NHS Diabetes Prevention Programme and have a repeat blood test in 4 months. After spending a lot of time researching today I am so glad I came across this site/forum. If I have to make dietary/lifestyle changes I am not sure how much I can change. For years I have eaten a 'healthy' diet - brown rice, vegetables, pulses, fruits etc avoiding cakes, biscuits, ready meals. I exercise at the gym 2-3 times per week, walk daily and do pilates. Never smoked or drink alcohol. I have ordered a blood glucose monitor. I am feeling rather over whelmed with all the information available and what is the best route for me to improve my numeric reading.

 

[Resurgam]

After a routine blood test undertaken as part of the 5 year NHS health check my numeric reading came as 42. Received notification from the surgery today about enrolling on the NHS Diabetes Prevention Programme and have a repeat blood test in 4 months. After spending a lot of time researching today I am so glad I came across this site/forum. If I have to make dietary/lifestyle changes I am not sure how much I can change. For years I have eaten a 'healthy' diet - brown rice, vegetables, pulses, fruits etc avoiding cakes, biscuits, ready meals. I exercise at the gym 2-3 times per week, walk daily and do pilates. Never smoked or drink alcohol. I have ordered a blood glucose monitor. I am feeling rather over whelmed with all the information available and what is the best route for me to improve my numeric reading.

Unfortunately the problem is not cakes biscuits etc, if you can't deal with carbs the healthy foods are just as much carbs and will push up your blood glucose.
No matter how much you exercise there is always going to be a tendency to have high blood glucose levels if you continue to have more carbohydrate in your diet than you can deal with. The blood glucose tester will be helpful in picking up what meals you can cope with and which are too much.
I found that I can extract almost twice the carbs listed from legumes - I have come across others who find the same thing, so peas and beans need to be limited in quantity.
Fortunately many ordinary type 2s can return to normal levels eating protein and fat and using carbs for colour, texture, flavour and variety rather than them being main part of meals.

 

[SRDO]

Thank you Resurgam for your very useful reply to my post. For the last 48 hours I have felt my head is spinning with all the information there is to take on board and how I am going to make the necessary changes whilst needing to have the confidence these changes could make a difference. The timing of this happening is not great because I have so much going on in my life at the moment (my husband has advanced Parkinson's and I underwent kidney surgery earlier in the year) I don't feel I have the head space or energy to deal with anything else.

 

[ajbod]

With an Hba1c of 42, you have just gone one step beyond the average, most people fall into the bracket of 37 - 41.
This number is a wake up call that things could go wrong later on. It's a bit like those lit speed signs, that flash red when you find you're 2 mph over the speed limit. You should find that only minor alterations are needed to address this, it could be as simple as cutting out sugar in drinks, or sweet treats. Yes it's an inconvenience, but not a serious problem, and may never be, with the odd tweak here and there. Try not to worry about it.
A Glucose monitor in my view is essential, if only for a short time, this will rapidly tell you what foods don't suit YOU. Then it's simply a case of limiting, or avoiding them. Worry and stress also impacts our sugar levels, so this reading may even be a blip, caused by your current circumstances
You now maybe realise, that what we've been told for years is healthy, isn't. And take it from many of us here, that what has been demonised for about 50 years or so, ie meat and natural fats, is the food stuff the human body thrives on.

 

[Daibell]

As a general rule have enough proteins and fats to keep you feeling full and keep the carbs down. A daily total of 150gm carbs is a good target to start with and this can be reduced if you still have excess weight or poor BS control.