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How to get the support and advice I need from the NHS

I was seen by the specialist, community, diabetes team when I was first diagnosed, and saw a dietician as well. It was distressing for me, but very informative, and I did get a pretty good understanding. There was even a weekly group session where we all met up and learnt stuff from specialist doctors, nurses and dieticians. (ETA that was about 15 years ago, I think)

That has all stopped now.

I am in the London Borough of Croydon.

I know that team no longer functions as it did, but I asked, recently, to be referred to a specialist because of the diabetic maculopathy diagnosis, and their suggestion that I should be. That is the request that was rejected.
 
I have just been looking back at my HBA1C results that I can easily access (there may be more)

I have also found something from 2023 saying that my individual target is 48-58. So this is why they are telling me that the diabetes is well controlled.

But, if it is, how come I have got diabetic maculopathy, and I still need to make changes, so I was told, to stop that from getting worse.

20/6/24 56
15/7/25 55
5/11/25 51
 
hba1c within target range reduces risks, it does not completely prevent. There maybe some other dietry changes that you can do to help control levels a little better eg stopping spike as high as otherwise would. hba1c is like an average speed camera, where as fingerprick measures blood glucose for exactly that point of time.

I'm still researching your healthboard. a fair few links on their website are non functioning (same across some other healthboards too) would be nice if they updated their webpages when links change.

someting have found which maybe relevant and could assist with at least some worry/anxiety/stress of things could be worth looking at the following link (for your healthboard) https://croydontalkingtherapies.nhs.uk/refer-yourself/

If i find other details in regards to the direct question prior will post later on, sorry can't be of much further assistance at this time.
 
I phoned the Diabetes UK helpline yesterday and they advised me to contact the integrated care board, which I did, via their website, but I am not sure that will help.

I don't think I can self refer to the diabetes clinic.

I have been looking at whether I can do this privately - I really have been feeling very, very scared about the diabetic maculopathy - and there is a private hospital near me. I might end up doing that in the new year, even though I am getting a bit calmer about things, and depending on what happens with the glucose reader thing, which I am still learning.
 
It seems somewhat odd that my blood glucose was at 18.5 on Thursday. It was about 2 and a half hours after breakfast. I always have the same breakfast, which was recommended to me by the dietician years ago (I didn't really eat breakfast at all before that - just ate randomly when I was hungry). Two weetabix with milk, plus a banana.

I wonder if that has been spiking me every day and I haven't realised? I am going to check now, actually, which is about 2 and a quarter hours since I had breakfast (but no banana, as I have run out)

ETA Hmm - 13.8

ETA - I take metformin and sitagliptin with my breakfast
 
that sounds like useful advice from the dUK helpline :) hopefully that will assist. I found the same but due to missing links in their leaflets (alongside websites) for education etc. was not sure if still in use. did you telephone them? i find putting in writing query can be more useful the two contact details i found for integrated diabetes services. Telephone: 020 8401 3414 Email: [email protected] i did not post those due to
https://www.croydonhealthservices.nhs.uk/a-to-z-of-services/service/diabetes-76/
Click to expand...
diabetes toolkit section coming up as page not found.

regards the fear side the link i posted in my previous message may help a little with that.

Guineveretoo said:
It seems somewhat odd that my blood glucose was at 18.5 on Thursday. It was about 2 and a half hours after breakfast. I always have the same breakfast, which was recommended to me by the dietician years ago (I didn't really eat breakfast at all before that - just ate randomly when I was hungry). Two weetabix with milk, plus a banana.

I wonder if that has been spiking me every day and I haven't realised? I am going to check now, actually, which is about 2 and a quarter hours since I had breakfast (but no banana, as I have run out)

ETA Hmm - 13.8

ETA - I take metformin and sitagliptin with my breakfast
Click to expand...
https://www.centralcoop.co.uk/food/products/5000128861069 this is nutrician info for ripe (not overly) medium banana (80g). 16g net carbs mostly sugars 14g. 2 wheatabix is 26g nets carbs very low sugars. your daily breakfast would be around 42g carbs + sugars (lactose approx slightly under 5g) per 100ml milk. switching to just the wheatabix would help to prevent as high of an initial spike. If banana's are something you particularly enjoy could also just use less of one sliced thiny that should help a bit could also look into some lower carb breakfast options such scambled egg on an occassion. What works for one person may not work well for another. Testing 2 hours after meal, the difference of blood glucose should be no more than around 2mmol higher than testing before the meal. Doing that will tell you how your body handles that particular meal everybody is different.

lower GI index foods should help with spiking less high helping to assist with diabetes control. here is a decent resource.

www.kentcht.nhs.uk

Glycaemic Index (GI)

Published: 27/06/2025 Last edited: 27/06/2025 Code:01283 This content may not be reproduced, without the permission of Kent Community Health NHS Foundation Trust – contact us. What is Glycaemic Index? Glycaemic ‘the presence of glucose in the blood’ Index ‘a sign or measure’ All carbohydrate...
www.kentcht.nhs.uk
 
grantg said:
that sounds like useful advice from the dUK helpline :) hopefully that will assist. I found the same but due to missing links in their leaflets (alongside websites) for education etc. was not sure if still in use. did you telephone them? i find putting in writing query can be more useful the two contact details i found for integrated diabetes services. Telephone: 020 8401 3414 Email: [email protected] i did not post those due to
diabetes toolkit section coming up as page not found.
Click to expand...
I assume that is who my GP tried to refer me to, but it was rejected. I don't think I can self refer to it. But I will email them anyway, as I don't know what the GP said....

It is a bit out of date, though, since it is referring to the pandemic. Might all have changed since then! :(
 
I try to eat a banana every day because of the potassium which is good for me and was recommended by one of my specialist docs (I can't currently remember which one!)

In the early days of the diabetes, when I was carb counting, the weetabix with milk and a banana was on my mind as 45 carbs.

Of course, things can change, and maybe it is now spiking but didn't used to.
 
Guineveretoo said:
Mine was picked up at the hospital in my annual DRSS test. The letter with the results said "diabetic maculopathy" which I had never heard of. The specialist explained to me when I saw her, several weeks later, that it is retinopathy. The macula is part of the retina.

No treatment has been offered at this stage - just to get my diabetes controlled/managed better and to return for monitoring after a few months. I felt it was the confirmation I needed that the diabetes was not as controlled as the GP kept telling me it was from the HBA1C (even though I see from people on here that my HBA1C is routinely higher than most people!) and was pleased to get the referral to the specialist team that I thought was going to happen.

But here I am, still on my own.
Click to expand...
I’d never heard of it either..

Always had regular retinopathy checks & never mentioned.
Then found myself resting my chin on a different kind of scan machine..
From what I know it’s a build up of fluid distorting the central field of vision.?
Sort of like a reflection on the back of a spoon.
 
Some dietry needs can change over time. i recall with my late mums conditions some dietry advice for one condition conflicted with another was hard to cater for it and latterly had to focus on what was needed most at that time. Another close family member watched them go through all stages of ckd both peritoneal&hemo dialysis, their diet was altered umpteen times over course of 40odd years for various reasons they doing ok now post translplant (on their second one) :) It can be difficult to strike balance. Worth revisiting dietry needs if at all possible with the various specalists when do see them.
 
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