Who are treated solely by GP and who have Endo/SDNs?

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Initially I was under the care of the local extensive care team and also the GPs diabetic nurse who has seen me twice in one year. Never seen the GP regarding my diabetes.I think they decided that there were more urgent cases in need of their help and my own diabetes was under good control, so I haven't had any contact from the extensive care team, diabetic nurse for months now. It is of no concern to me because, thankfully things do seem to have settled down in my new low carb high exercise lifestyle.
 
Diagnosed t2 in 2016 and treated by GP. Weight dropped significantly and they couldn't understand why after increasing/changing meds so referred me to a DSN who diagnosed t1 in February 2018. I've never been seen by a Consultant.

After being under the care of DSN for a short while i was referred back to GP care. A few months later, i needed to be re referred back to DSN as the type of insulin wasn't suiting me. After having telephone appointments with the DSN, they referred me back to GP care again last year, Easter i think. I asked if i could ring them if there was a problem but was told that if it was a general question they could answer it was ok but if it was something specific to me then i would have to be re referred as i would no longer be their patient. The nurses at the GP surgery are good but i don't know if any of them specialise/have more knowledge in diabetes, let alone t1.

It would be nice to know that there is someone at the end of the phone if there is a problem, rather than trying to get an appointment with the surgery to ask to be re referred then waiting for it to happen/hear from a DSN.
Luckily, i haven't needed it since and have had the support i've needed from this forum.
 
I’m so happy to read the majority of you seem satisfied with the care you are receiving. I was diagnosed T1 (LADA) age 47 in 2019 and had regular 3 mo bloods for A1c and cholesterol + BP which all went to sht when covid hit. Heard from surgery nurse once in the last 2 yrs, no bloods or BP monitoring. She also wanted me taken off the monitoring list completely but after consulting the lead GP specialist that didn’t happen. That’s when I finally lost confidence in her and her knowledge of T1s. I use Dexcom G6 self funded so much like most of you I can handle BGs by myself very well but still worry what my BP and cholesterol are up to. Looking back at your replies it seems a few of you may actually have LADA too (diagnosis after 40, lonnng honeymoon period, ketones) so where 90% of diabetics are T2, 10% are T1 young onset and 1% are LADA. Trust me to have a condition named after a shtty old Russian car!! Please keep on replying as I’m really interested to hear your personal experiences with all things diabetes #PardonmyPancreas xx
 
Leo said:
I’m so happy to read the majority of you seem satisfied with the care you are receiving. I was diagnosed T1 (LADA) age 47 in 2019 and had regular 3 mo bloods for A1c and cholesterol + BP which all went to sht when covid hit. Heard from surgery nurse once in the last 2 yrs, no bloods or BP monitoring. She also wanted me taken off the monitoring list completely but after consulting the lead GP specialist that didn’t happen. That’s when I finally lost confidence in her and her knowledge of T1s. I use Dexcom G6 self funded so much like most of you I can handle BGs by myself very well but still worry what my BP and cholesterol are up to. Looking back at your replies it seems a few of you may actually have LADA too (diagnosis after 40, lonnng honeymoon period, ketones) so where 90% of diabetics are T2, 10% are T1 young onset and 1% are LADA. Trust me to have a condition named after a shtty old Russian car!! Please keep on replying as I’m really interested to hear your personal experiences with all things diabetes #PardonmyPancreas xx
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Hi Leo just reading your posts. I was diagnosed t2 back in October. Then changed to t1 on the basis of a positive GAD result and referred to hospital. The care at the hospital is amazing I have a direct number for the team and dietician any questions I have I just ring and get an answer that day. On diagnosis Hba1c was 115 down to 55 in December. Repeated again yesterday and results awaited. Bp back to normal and cholesterol done again yesterday. All this will now be checke£ every 3 months. Not on any medication just being monitored but consultants thinks it’s probably lada. My dad was t1. Have you started on medication yet?
 
So - have you rung your GP surgery and A) told them you need a blood test PDQ and B) told them you need to be referred to the diabetes clinic at (wherever your nearest decent hospital happens to be) ?
 
Hi @Leo you don`t know me happy to meet you, in answer to your question
I am looked after by the hospital and surgery, I have a direct link to the hospital
by DSN at first then Endocrinologist if needed. Surgery takes bloods every
three months even through the pandemic so no problem my end as far as help
is concerned, I think its because when admitted to hospital my HbA1c was 156
death was very close.

Hope your D journey with the help of the forum is fruitful, take care stay safe.🙂
 
Hi @Leo
When I was first diagnosed in 1991 I was under the care of the hospital - I'd see the DSN, a consultant, a dietitian, optician..... Then we moved house and my diabetes was looked after by the practice nurse at the gp practice, optician and podiatrist were done at other places. We moved house again and again my care is done by the practice nurse etc. I got DKA in 2017 and my care was done by a DSN who has recently discharged me from the service and I'm now back having my care done with the practice nurse at the gp practice etc.
 
Like @Robin I’ve had an endo-GP-endo shuffle.

I was initially under the care of hospital / endo / DSN. Then after a good few years my GP surgery started wanting me to come in for check ups, which were doubled up at the hospital, so I asked the hospital (who were way less naggy) if I could be signed off. They said yes, and that I could come back any time if i needed extra help. GP worked well for a while, but when I wanted to change insulin, they said they felt a bit out of their depth, so I was referred back to hospital.

Since being on a pump I have an annual pump clinic at the hospital, and an annual review at the GP for weight, BP, toe tickle etc. I try to get them to be 6 months apart, but they do drift together if I’m not careful!
 
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Last week, I had my first ever diabetes check up at my GP surgery. For the last 18 years, I have only ever had check ups at the hospital. Each year, about 2 weeks later, the surgery would invite me for a check up which seemed like a waste of time.
This year, the appointment invitations were out of step. Hence, I had a Gzp review. It was on the phone following a blood test.
The blood test was only HbA1C and I had seen the results online prior to the appointment. There was no check of liver, kidney or cholesterol. I had no blood pressure test. I had no toe tickling.
The DSN asked me if I had ever had a hypo. I explained any T1 who says they have never experienced a hypo is either lying or run in their levels too high.
She then asked me how much Lantus I take. I explained I had a pump so I did not take any Lantus.
That was it.

I was glad to get my HbA1C but i didn’t need the appointment for that.
Thankfully, the hospital check ups are far more thorough.
 
This makes me grateful that at my last appointment when my parents asked about moving up to the adult clinic , that the adult clinic is run closely with the Paediatric department so I won’t end up with the GP for appointments. Still a good 2 years in Paediatrics though
 
trophywench said:
So - have you rung your GP surgery and A) told them you need a blood test PDQ and B) told them you need to be referred to the diabetes clinic at (wherever your nearest decent hospital happens to be) ?
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Today I finally had a letter calling me in for a blood test (maybe they’ve changed me to yearly monitoring but haven’t told me?). I asked a while ago to be referred to an endo and my GP said no.
 
Lily123 said:
This makes me grateful that at my last appointment when my parents asked about moving up to the adult clinic , that the adult clinic is run closely with the Paediatric department so I won’t end up with the GP for appointments. Still a good 2 years in Paediatrics though
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Paeds always treat their T1 kids well (I work in hospital paediatrics)!
 
Leo said:
Paeds always treat their T1 kids well (I work in hospital paediatrics)!
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What’s the adult clinic like compared to Paeds?
 
trophywench said:
50 years in; spotted when I went to see GP cos I felt so awful where the surgery nurse was asked to test my wee (Do you think you could supply a urine sample? Yeah, it's been 10 minutes since I went so I fully expect so! ) and admitted to hospital the next morning; blood taken pdq once I was there and D confirmed that afternoon and first insulin jab administered; inpatient approx 10 days; eyesight all over the place by then so couldn't go back to work for about a month (bored as hell, aarrgghh) soon had OP appt at hospital D clinic, seen there every 6 months; moved to Coventry nearly 30 years later, registered with new GP who said exactly the same as old GP ie we don't deal day to day with T1 so just sorted out my repeat prescriptions and ref'd me to hospital D clinic where I'm still seen every 6 months -ish. Surgery nurse does annual toe tickling, weight and BP and GP surgery still does annual 'review'. GP no longer does any routine blood tests for anyone for anything, if hospital want one they have to send me the form and I have to book it via Swiftqueue at any pharmacy in Coventry that does blood tests and is on the Swiftqueue system. Instead of being able to get an appt quickly, it's now usually 2 or 3 weeks hence. Husband having had prostate cancer in the past, has to ring them up every 12 months to request his annual PSA test form, nobody does anything automatic any more .......
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Your message is very inspiring to me. I have just been diagnosed with pre-diabetes at age 30 and and have been feeling so down, wondering if someone diagnosed as young as me can still live a normal life expectancy, figuring T2D is inevitable at this point.
 
Both my surgery GPs have been pretty useless and just diagnosed as T2 despite being very slim and an HBA1C of 13%. Finally managed to get my second GP to refer me to to the excellent surgery DN who prescribed my Basal/Bolus but still a 'T2'. Got my second lovely DN to refer me to the clinic for a C-Peptide. Despite the inconclusive test result I had a long and good chat with the endo after insisting I speak with him. He can see I have big control problems despite a Libre so he now claims he is my Consultant and calls me every 6 months. He treats me as a T1 despite inconclusive test results. My surgery DN still does the bloods etc and remains very good.
 
I’m treated by endo/dsn at the hospital. It’s a frustrating system for T2 in my area…

If you have good control you’re treated by practice nurse

If you hit a rough patch and need some help adjusting doses you get referred to hospital. Referral takes ages to go through by which time you’ve probably figured it out

You stay at the hospital until a1c is acceptable again. Whilst under hospital care you get more knowledge as you can ask the DSNs for help when you need it

When good control, you get discharged back to GP practice nurse. If you have any questions you can’t ask them as they don’t really know much about basal bolus. If you hit hard times you need to ask for a referral…

So I’m under the hospital at the moment but next time they suggest discharge I need to try not to be thrown out again!
 
I do have an appointment with the practice nurse and “someone from the secondary care team” coming up. I’ve no idea what that means.

After I saw the GP about headaches I got a text from the practice diabetes nurse that said “I hear you’re struggling with your diabetes. Sorry to hear this. I’ve booked you an appointment”. I had mentioned that my bgs go high during the bad headaches when asked, but I do correct for them.

I don’t know if my GP or the practice nurse know I go to the hospital and that I can call them for same day advice whenever I have a problem, as I had already done. So I’ve no idea what will happen at the appointment or who the “secondary care team” are that will be there as well as the practice DSN.
 
Practice nurse for everything related to T2

Only comment from the GP was at diagnosis and being told not to bother monitoring at home, don’t try diet or exercise but “just shut up and take the tablets”.

Oddly he’s a decent GP for mental health stuff. Won’t see him for anything physical though as he’s incredibly dismissive.
 
Well everyone registered with a GP in Britain has a Primary Care Team Lucy - it's everyone who operates at their GP Surgery. I imagine therefore that the local hospital is where everyone's Secondary Care Team live!
 
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