What should happen after diagnosis?

[Flip74]

Hi,

I was officially diagnosed with diabetes, last Tuesday, 12th September, and I'm pretty confused about what should be happening regarding referrals and other things in general.

The doctor I saw isn't sure whether I'm type 1 or type 2 (I think I may be 1.5), so she arranged for another batch of blood testing, and a urine sample. She said that she was also going to refer me to endocrinology. The doctor also said I needed an eye screen, showed me a website for Public Health Wales, and told to arrange an appointment.

She is also referring me to a dietician, even though I could really do with allergen/intolerance testing carried out, to see if I can eat what they're likely going to recommend I eat, but no. There are food allergy sufferers in the family. I was initially told I was lactose intolerant, and my niece is anaphylactic (peanuts and egg). My last gastroscopy showed infiltration of eosinophils in my oesophagus, and that eosinophilic oesophagitis couldn't be ruled out. They've not followed this up, and I only found out when I requ my records!

Since the appointment, I've heard absolutely nothing; I really thought I'd have heard from a diabetes nurse/clinic (I'm not sure whether that's separate to a diabetes nurse, or how long that's going to take). I found the website for the eye screening with Public Health Wales, and it needs a referral from a doctor. I cannot "book an appointment" A phone call to Public Health Wales confirmed this!

I did receive a copy of a letter the doctor sent to the GP, this week, which had some inaccuracies; saying I "denied" having a hypo when I wasn't asked, and I "denied" eating prior to the glucose test I had during the appointment with a result of 15mmol/L - I only had a drink of water! She never really asked if I had any symptoms, only if I had been sick, which I had been a couple of times.

What I can't understand is that they knew I was diabetic in October last year, but did nothing. I did post about that in February. I have something on the bottom of my foot, as well as some delicate issues, which I believe is a result of diabetes, made worse by them withholding treatment.

So basically, I thought I'd have heard something from someone by now?

Thanks for any advice.

Phillip.

 

[KennyA]

Hi Flip74 and welcome

It's bad enough being diagnosed without getting stuck in health service bureaucracy. Just to be clear - the doctor you saw (the one who isn't sure if you'e T1 or T2) wasn't your own GP? If so, then you were referred to her by your GP? This means you're already in what they call a "pathway" - question is whether it's the right one.

The delay since you saw the doctor (ten days) is not that long nor that unusual unfortunately. Messages can get sent immediately but aren'tnecessarily acted on immediately.

As you're in Wales it's possible/likely that there are local protocols that are different from how things work in the rest of the country.

In your shoes I would be looking to your GP to sort out the referrals being made and the "who does what" questions.

 

[filly]

Hi Flip74 and welcome

It's bad enough being diagnosed without getting stuck in health service bureaucracy. Just to be clear - the doctor you saw (the one who isn't sure if you'e T1 or T2) wasn't your own GP? If so, then you were referred to her by your GP? This means you're already in what they call a "pathway" - question is whether it's the right one.

The delay since you saw the doctor (ten days) is not that long nor that unusual unfortunately. Messages can get sent immediately but aren'tnecessarily acted on immediately.

As you're in Wales it's possible/likely that there are local protocols that are different from how things work in the rest of the country.

In your shoes I would be looking to your GP to sort out the referrals being made and the "who does what" questions.

Wonderfully said Kenny....Couldn't have said it better myself.

 

[CatsFive]

It's worth checking your local podiatry services. Where I live (not Wales) I can self-refer. If you have any type of diabetes, foot problems need taking seriously.

If the 'delicate issues' are thrush you can get OTC treatment for it.

 

[Mr Clean]

I have been recently diagnosed like yourself. My initial diagnosis was on the 29th Aug after a blood test and I was asked to bring a urine sample to that appointment. I was then given another blood test form for C-Peptide which I booked myself. I had my first appointment with the Diabetic Nurse on the 13th Sept. That appointment was made for me and I was notified by text message. While I was with her she arranged for me to have an eye screening test, flu/covid jabs and a follow up appointment with her on the 11th Oct.

I've had the letter for the eye screening through and booked myself an appointment on the 10th Oct. Still waiting for the flu/covid but I believe there is a waiting list for that while they prioritise the elderly and those more needy.

She also gave me a form to send off to get my free prescription pass.

I don't know how the NHS differs in Wales from England but I would imagine you will here something soon and then everything will start happening.

Hope you get sorted soon.

 

[Flip74]

Hi Flip74 and welcome

It's bad enough being diagnosed without getting stuck in health service bureaucracy. Just to be clear - the doctor you saw (the one who isn't sure if you'e T1 or T2) wasn't your own GP? If so, then you were referred to her by your GP? This means you're already in what they call a "pathway" - question is whether it's the right one.

The delay since you saw the doctor (ten days) is not that long nor that unusual unfortunately. Messages can get sent immediately but aren'tnecessarily acted on immediately.

As you're in Wales it's possible/likely that there are local protocols that are different from how things work in the rest of the country.

In your shoes I would be looking to your GP to sort out the referrals being made and the "who does what" questions.

Hi Kenny,

Thank you for replying. The doctor I saw last week was a gastroenterologist; I've been under them since being hospitalised 3 years ago due to "life threateningly low haemoglobin" which required a blood transfusion. I was diagnosed with pernicious anaemia (they knew I was b12 deficient since 2007, at least!). I've also been diagnosed with NASH (I'd been told I had NAFLD, but found out otherwise in my records which I requested, as nobody told me the results of a liver biopsy I had taken), Barrett's oesophagus, and a hiatus hernia. I have to go for checkups at the hospital every 3 months or so.

The doctor (consultant?) I saw last Tuesday, was the one I saw last October (they cancelled 2 appointments this year due to "unforeseen circumstances"). Apparently, this is when I should have been diagnosed with diabetes, as my HbA1c had gone from 44 mmol/mol (prediabetes) in 2020 and 2021, to 82 mmol/mol in October 2022, and 97 mmol/mol in January 2023. Fasting glucose was 16.7 mmol/L. I wasn't contacted by either the hospital or the GP, either by phone or letter, and can't understand why any referrals weren't made then. I've been in touch with the Welsh Endocrine and Diabetic Society, who set the guidelines, and was told that the high result from last October was enough to have been diagnosed.

I'll try the GP, but for numerous reasons (the B12 deficiency being left untreated for 13 years, being one), I'm not hopeful.

Anyway, thanks again!

Phillip.

 

[KennyA]

Hi Kenny,

Thank you for replying. The doctor I saw last week was a gastroenterologist; I've been under them since being hospitalised 3 years ago due to "life threateningly low haemoglobin" which required a blood transfusion. I was diagnosed with pernicious anaemia (they knew I was b12 deficient since 2007, at least!). I've also been diagnosed with NASH (I'd been told I had NAFLD, but found out otherwise in my records which I requested, as nobody told me the results of a liver biopsy I had taken), Barrett's oesophagus, and a hiatus hernia. I have to go for checkups at the hospital every 3 months or so.

The doctor (consultant?) I saw last Tuesday, was the one I saw last October (they cancelled 2 appointments this year due to "unforeseen circumstances"). Apparently, this is when I should have been diagnosed with diabetes, as my HbA1c had gone from 44 mmol/mol (prediabetes) in 2020 and 2021, to 82 mmol/mol in October 2022, and 97 mmol/mol in January 2023. Fasting glucose was 16.7 mmol/L. I wasn't contacted by either the hospital or the GP, either by phone or letter, and can't understand why any referrals weren't made then. I've been in touch with the Welsh Endocrine and Diabetic Society, who set the guidelines, and was told that the high result from last October was enough to have been diagnosed.

I'll try the GP, but for numerous reasons (the B12 deficiency being left untreated for 13 years, being one), I'm not hopeful.

Anyway, thanks again!

Phillip.

If you saw a consultant you were very lucky. Most hospital consultations are with junior doctors.

I guess part of the problem might have been that you were on a gastroenterology pathway when your high blood glucose was detected. Someone should certainly have told you, but you were being seen by a gastroenterologist, not an endocrinologist, and they don't trespass, usually. In addition, they might have assumed you knew already or it might have been thought to be somebody else's job to do the telling. This is and has always been one of the issues with the "pathway" approach.

I don't think there's any different diagnostic criteria in Wales - they will use the standards that apply in the rest of the UK and world-wide. That includes automatic diagnosis of type 2 diabetes at levels at or above 48mmol/mol in an HbA1c test.

 

[Flip74]

If you saw a consultant you were very lucky. Most hospital consultations are with junior doctors.

I guess part of the problem might have been that you were on a gastroenterology pathway when your high blood glucose was detected. Someone should certainly have told you, but you were being seen by a gastroenterologist, not an endocrinologist, and they don't trespass, usually. In addition, they might have assumed you knew already or it might have been thought to be somebody else's job to do the telling. This is and has always been one of the issues with the "pathway" approach.

I don't think there's any different diagnostic criteria in Wales - they will use the standards that apply in the rest of the UK and world-wide. That includes automatic diagnosis of type 2 diabetes at levels at or above 48mmol/mol in an HbA1c test.

Hi Kenny,
Thanks for replying, and I'm sorry for not replying sooner. I felt really burnt out and crashed over the weekend.

You're right, I very much doubt I've seen the consultant; over the 3 years, I've seen about 5 juniors, and haven't seen the same one twice until this one now. I think I saw the consultant's SHO, in 2021.

I ended up with Gastroenterology as I've had issues since birth; I also am under the local CMHT for depression and agoraphobia. They have done more harm than good; have been labelled a hypochondriac, when it was the pernicious anaemia all along. The gastrointestinal problems weren't taken seriously until I was hospitalised in 2020, and I had to push for 3 months to get the blood test which led to being hospitalised for a transfusion.

My HbA1c for 2020 and 2021 was 44mmol/mol which meant I was prediabetic as it was less than 47mmol/mol, and to retest annually.

But in October 2022, my HbA1c was 82mmol/L, the in January of 2023, HbA1c was 97mmol/L!

Under the results of the October and January results, which I had to ask for as I'd heard nothing, it says the following:

"For monitoring known diabetic patients, please follow NICE guidelines.

If not a known diabetic and the patient is asymptomatic, a second confirmatory sample is required within 2 weeks (WEDS Guidance)."

I contacted WEDS (the Welsh Endocrine and Diabetic Society) and was told that as the October 2022 test was so high (82mmol/mol) that I should have been diagnosed, then. The test I did in January, which I should have done within 2 weeks from October but couldn't as I was ill, WEDS told me there was no need to have it retested, as, again, the October result was so high. I wasn't asked about any symptoms, which I do have, regarding diabetes
I've never been asked about symptoms related to the pernicious anaemia, either.

It's the GP, really, that I can't understand why they never contacted me, especially when the results spoke for themselves. But there again, it they who also labelled me as a hypochondriac. One of them also misdiagnosed my father's cancer! I would change practices, but my records will follow, and some doctor's surgeries, here, are cutting back on the B12 injections I need to live.

Over the weekend, I received a letter from the Dietician. Still nothing from endocrinology. I thought they'd have been the most important, then the dietician?

Thanks again,

Phillip.

 

[KennyA]

Hi Kenny,
Thanks for replying, and I'm sorry for not replying sooner. I felt really burnt out and crashed over the weekend.

You're right, I very much doubt I've seen the consultant; over the 3 years, I've seen about 5 juniors, and haven't seen the same one twice until this one now. I think I saw the consultant's SHO, in 2021.

I ended up with Gastroenterology as I've had issues since birth; I also am under the local CMHT for depression and agoraphobia. They have done more harm than good; have been labelled a hypochondriac, when it was the pernicious anaemia all along. The gastrointestinal problems weren't taken seriously until I was hospitalised in 2020, and I had to push for 3 months to get the blood test which led to being hospitalised for a transfusion.

My HbA1c for 2020 and 2021 was 44mmol/mol which meant I was prediabetic as it was less than 47mmol/mol, and to retest annually.

But in October 2022, my HbA1c was 82mmol/L, the in January of 2023, HbA1c was 97mmol/L!

Under the results of the October and January results, which I had to ask for as I'd heard nothing, it says the following:

"For monitoring known diabetic patients, please follow NICE guidelines.

If not a known diabetic and the patient is asymptomatic, a second confirmatory sample is required within 2 weeks (WEDS Guidance)."

I contacted WEDS (the Welsh Endocrine and Diabetic Society) and was told that as the October 2022 test was so high (82mmol/mol) that I should have been diagnosed, then. The test I did in January, which I should have done within 2 weeks from October but couldn't as I was ill, WEDS told me there was no need to have it retested, as, again, the October result was so high. I wasn't asked about any symptoms, which I do have, regarding diabetes
I've never been asked about symptoms related to the pernicious anaemia, either.

It's the GP, really, that I can't understand why they never contacted me, especially when the results spoke for themselves. But there again, it they who also labelled me as a hypochondriac. One of them also misdiagnosed my father's cancer! I would change practices, but my records will follow, and some doctor's surgeries, here, are cutting back on the B12 injections I need to live.

Over the weekend, I received a letter from the Dietician. Still nothing from endocrinology. I thought they'd have been the most important, then the dietician?

Thanks again,

Phillip.

The practice in England (and I understand in most places) is to retest if the initial HbA1c is around 50mmol/molish. Usually a higher A1c isn't retested, as there is next to no chance of that size of rogue result.

The issue with symptoms is that as the focus has shifted on to testing, and only testing, that diabetes-related symptoms are generally ignored until after diagnosis. Then they're monitored.

I'd guess you've had a problem with the health service bureaucracy. If you're on pathway A, you're fine for the system as long as you have disease A, and only disease A. If you don't have disease A but in fact have disease B instead, or if disease C pops up alongside disease A, the health service struggles to switch patients between pathways or run simultaneous pathways. There used to be a role in most hospitals called "general physician" who was a doc who knew a bit about everything (a bit like a GP but more specialised) and whose job it was to pull hospital care and treatment arrangements together for patients who didn't fit neatly into one specialty or the other. With increasing medical specialisation, that role has gone.

It might be worth asking your GP if the hospital notified them about your HbA1c result, and drew the practice's attention to it.

I don't think the timing of your letters is deliberate. it just depends how quickly each of the recipients gets round to considering what to do and then offering you an appointment. There have been doctor strikes in the last few weeks that might well have affected the timings in some way, too.

Stick at it. You'll need the co-operation (at least) of your health care practitioners and you may as well start the way you mean to go on. Getting the GP onside and in your corner would be a bonus.

 

[Berniecdj]

Hi,

I was officially diagnosed with diabetes, last Tuesday, 12th September, and I'm pretty confused about what should be happening regarding referrals and other things in general.

The doctor I saw isn't sure whether I'm type 1 or type 2 (I think I may be 1.5), so she arranged for another batch of blood testing, and a urine sample. She said that she was also going to refer me to endocrinology. The doctor also said I needed an eye screen, showed me a website for Public Health Wales, and told to arrange an appointment.

She is also referring me to a dietician, even though I could really do with allergen/intolerance testing carried out, to see if I can eat what they're likely going to recommend I eat, but no. There are food allergy sufferers in the family. I was initially told I was lactose intolerant, and my niece is anaphylactic (peanuts and egg). My last gastroscopy showed infiltration of eosinophils in my oesophagus, and that eosinophilic oesophagitis couldn't be ruled out. They've not followed this up, and I only found out when I requ my records!

Since the appointment, I've heard absolutely nothing; I really thought I'd have heard from a diabetes nurse/clinic (I'm not sure whether that's separate to a diabetes nurse, or how long that's going to take). I found the website for the eye screening with Public Health Wales, and it needs a referral from a doctor. I cannot "book an appointment" A phone call to Public Health Wales confirmed this!

I did receive a copy of a letter the doctor sent to the GP, this week, which had some inaccuracies; saying I "denied" having a hypo when I wasn't asked, and I "denied" eating prior to the glucose test I had during the appointment with a result of 15mmol/L - I only had a drink of water! She never really asked if I had any symptoms, only if I had been sick, which I had been a couple of times.

What I can't understand is that they knew I was diabetic in October last year, but did nothing. I did post about that in February. I have something on the bottom of my foot, as well as some delicate issues, which I believe is a result of diabetes, made worse by them withholding treatment.

So basically, I thought I'd have heard something from someone by now?

Thanks for any advice.

Phillip.

Where in Wales do you live? I live in RCT and was diagnosed in July. The support from my hospital is pretty good but I found you must push hard in the early days to get the treatment and support you really need. Make a nuisance of yourself!

 

[Bevvy1990]

I was diagnosed with diabetes in hospital for the first 3/4 days they just knew I was diabetic (went in with a DKA) it was day 4 they came to me and said type 1 I was referred to their diabetic team got seen within a week of being discharged l, then for the next 3 months was constantly going low constantly phoning them cause they were failing me (best be sitting down cause even my local hospital admitted they’ve failed me). You should see a dietitian within 2 weeks of getting diagnosis (I waited 3 months and then kicked off got put down for urgent) you should also have 6 hours of care within the first 6 months of diagnosis from local diabetic team (I’ve had 1 hour in 3 months). I was home from hospital before getting the official diagnosis of T1D for about 2-3 weeks but was being treated as type 1. If you don’t hear soon from someone make sure to chase them up and don’t let them don you off cause even though they’re busy we all accept that they could do a lot of stuff over the phone, since I had them admit I’ve been failed they’ve phoned me at least once a week to see how I’m getting on.

 

[Flip74]

Where in Wales do you live? I live in RCT and was diagnosed in July. The support from my hospital is pretty good but I found you must push hard in the early days to get the treatment and support you really need. Make a nuisance of yourself!

Hi,

I'm from Wrexham. The support here hasn't been the best, and the health board is back in special measures. I had 2 appointments cancelled (one in April, the other July). It wouldn't have been too bad if the GP was there.

I know what you mean by pushing. The diabetes has sideswiped me a bit; I was kind of expecting it.

Thanks for your reply.

 

[Flip74]

I was diagnosed with diabetes in hospital for the first 3/4 days they just knew I was diabetic (went in with a DKA) it was day 4 they came to me and said type 1 I was referred to their diabetic team got seen within a week of being discharged l, then for the next 3 months was constantly going low constantly phoning them cause they were failing me (best be sitting down cause even my local hospital admitted they’ve failed me). You should see a dietitian within 2 weeks of getting diagnosis (I waited 3 months and then kicked off got put down for urgent) you should also have 6 hours of care within the first 6 months of diagnosis from local diabetic team (I’ve had 1 hour in 3 months). I was home from hospital before getting the official diagnosis of T1D for about 2-3 weeks but was being treated as type 1. If you don’t hear soon from someone make sure to chase them up and don’t let them don you off cause even though they’re busy we all accept that they could do a lot of stuff over the phone, since I had them admit I’ve been failed they’ve phoned me at least once a week to see how I’m getting on.

Thanks Bevvy,

Sorry to hear about the DKA. Hope you're feeling a bit better now.

I've got to phone up the dietician, but conveniently the letter which was delivered on Saturday is dated 12th of October, saying they'll give me 14 days from the date of the letter, which will be Tuesday! What sort of things do they do?

I'm sorry to hear about the trouble you've had., too.

 

[Flip74]

The practice in England (and I understand in most places) is to retest if the initial HbA1c is around 50mmol/molish. Usually a higher A1c isn't retested, as there is next to no chance of that size of rogue result.

The issue with symptoms is that as the focus has shifted on to testing, and only testing, that diabetes-related symptoms are generally ignored until after diagnosis. Then they're monitored.

I'd guess you've had a problem with the health service bureaucracy. If you're on pathway A, you're fine for the system as long as you have disease A, and only disease A. If you don't have disease A but in fact have disease B instead, or if disease C pops up alongside disease A, the health service struggles to switch patients between pathways or run simultaneous pathways. There used to be a role in most hospitals called "general physician" who was a doc who knew a bit about everything (a bit like a GP but more specialised) and whose job it was to pull hospital care and treatment arrangements together for patients who didn't fit neatly into one specialty or the other. With increasing medical specialisation, that role has gone.

It might be worth asking your GP if the hospital notified them about your HbA1c result, and drew the practice's attention to it.

I don't think the timing of your letters is deliberate. it just depends how quickly each of the recipients gets round to considering what to do and then offering you an appointment. There have been doctor strikes in the last few weeks that might well have affected the timings in some way, too.

Stick at it. You'll need the co-operation (at least) of your health care practitioners and you may as well start the way you mean to go on. Getting the GP onside and in your corner would be a bonus.

Hi Kenny,

Thanks again for replying. I really appreciate it.

Basically, that's what the Welsh Endocrine and Diabetic Society said regarding the HbA1c, and that the result in October 2022 was so high it didn't require retesting.

I just don't get why I wasn't notified after the October or January test results. I can understand that the doctor in the hospital is really busy, but I'd have thought the GP, or one of the nurses there, would have contacted me. They text about changing my inhaler, but can't text about results from the hospital. I'm not surprised really, as they kept the B12 deficiency quiet for 13 years at least.

I really could do with speaking to someone, and in an ideal world, that should be the GP. I've not been told anything about the medication I've been prescribed (Gliclazide) so haven't started it yet; there was a problem with the pharmacy obtaining them until Saturday. I know I should have started them, but... I guess I'm just a bit bothered about a new medication.

I'll get in touch with the surgery, and try and speak to the practice manager. Hopefully, I'll get somewhere!

Thanks again!

 

[CatsFive]

<snip>

I know what you mean by pushing. The diabetes has sideswiped me a bit; I was kind of expecting it.

I think most of us have that reaction to the diagnosis, be we T2, T2, LADA, MODY, Gestational, T3a or any other type I've missed. I certainly did.

 

[Berniecdj]

Hi,

I'm from Wrexham. The support here hasn't been the best, and the health board is back in special measures. I had 2 appointments cancelled (one in April, the other July). It wouldn't have been too bad if the GP was there.

I know what you mean by pushing. The diabetes has sideswiped me a bit; I was kind of expecting it.

Thanks for your reply.

If all else fails speak with your Senedd member. That will usually work! But you’re right, Betsi is in a right mess

 

[Flip74]

If all else fails speak with your Senedd member. That will usually work! But you’re right, Betsi is in a right mess

I think it's coming to that. My Plaid Cymru councillor is taking Betsi and the surgery, on, so I may contact her.

I'd change surgeries, but they're all supposed to be bad, and some aren't following guidelines for pernicious anaemia. They're stopping B12 injections, and putting patients on tablets, which are no good. It'll still be under Betsi, wherever I go!

 

[Flip74]

Well, I wrote a letter to the practice manager at the surgery, and received a reply a few hours later. Basically, it was a waste of time!

She's telling me that I've got to contact the hospital to get them to do a referral for eye screening. She's not even offering to get one of the GPs to either make a referral, or contact the doctor I saw on the 12th. Why she didn't make the referral then, I don't know. She had the website up, so she could have checked. Why the system doesn't automatically make the necessary referrals, I don't know.

I never mentioned in the letter that the doctor I saw in hospital said that diabetes was diagnosed last October, but I think I need to now. Why weren't the referrals made then? Why wasn't I notified?!

It's mad!

 

[Outlier]

So frustrating for you! At least you now have the control and perhaps the hospital will be more helpful. I do hope so.

 

[Flip74]

So frustrating for you! At least you now have the control and perhaps the hospital will be more helpful. I do hope so.

The practice manager said that she would arrange a telephone consultation with the GP (the one who eventually notified me that I needed a blood transfusion in 2020. I've never met him, by the way!) for today. As it was only going to be regarding a sleep study for sleep apnoea (which he said he'd do last may, and lo and behold, no record!) I replied that my main concern now is the diabetes, getting the right referrals, and that the diabetes was discovered last October. I had a a reply this morning saying there was no mention of diabetes last October! So either the the hospital is fibbing when they said they'd written to the surgery, or the GP is. All I know is that I got a print out of the results earlier this year, from the surgery. I think the hospital did screw up, as surely they should have made the necessary referrals with the HbA1c being as high as it was?

I've been in touch with the gastroenterologist's secretary and told them that I cannot arrange the eye screening as it needs to come from them. She's going to have a word with the gastroenterologist, and is going to email me.

Here's hoping!