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

[Leo]

Hi all you lovely Diabetics! I would love to hear your experiences regarding your ongoing care. Have you routinely been referred to an Endo after diagnosis (whatever type you have?) Have you routinely been referred to an SDN or are you cared for solely by your GP or practice nurse specialising in Diabetes? Please let me know in the comments as I’d like to compare my experience as I’m not sure my experience is shall we say normal for a T1.

 

[rebrascora]

I am nearly 3 years from diagnosis. I don't have a named DSN but I can ring the diabetes clinic helpline and leave a message if I have a problem I need help with and a DSN will ring me back within a day or two. I see the consultant at the Diabetes clinic every 6 months ish although it is nearer 9 months since Covid when I have had telephone appointments. I once saw a trainee registrar under the consultant and that was a waste of time but thankfully I got in to see the consultant because she could not answer my questions. I get bloods taken at the GP surgery a week prior to my appointment with the consultant so that he has the results when he rings me and he has access to my Libre results.

I see the diabetes trained nurse at the GP surgery once a year for weight, BP, toe tickle and a general chat. She is lovely but knows enough to know that she doesn't know enough about Type 1 to offer any real comment. She just offers support if there is anything I think she can help me with.

I assume that I will eventually go on to yearly appointments with the consultant or perhaps the appointments will stop once they are happy I know what I am doing, which I feel pretty confident about now. I am happy to be left to my own devices to a large extent but would want the option to self refer back to the clinic if I need some extra support at some point in the future or would like to try for a pump etc. but at the moment, whilst I have a few questions for the consultant, there is nothing pressing, so if I don't get my next appointment until June, which will be a year, I am not overly concerned and I know that the diabetes department has been well stretched by Covid due to it's effect of significantly increasing BG levels in acute patients and perhaps even triggering Diabetes in some people, so a big increase in workload for them.

 

[Stuvart]

Diagnosed last march and not seen a doc at all I've been seen by 3 different practice nurses (1 a locum who seemed totally unintrested) for bloods / weight and bp, thats it nearly all my info comes from this site or the Internet, had an eye check but not a 'tickle test' so I've no idea if that's normal but I feel not.

 

[eggyg]

In over 11 years I’ve never seen an endocrinologist or GP for my care, which considering I don’t have a pancreas seems a tiny bit crazy! But hey, I’m still here. Just the DSN at my practice ( TBF over the phone during the pandemic) firstly every 6 months then latterly every 12 months. They definitely don’t know anything about my type! I’ve been to the Diabetes Clinic at the hospital twice in all those years, and once was for a DAFNE course and the first was to see if I was “allowed” to go on a DAFNE a course! I was supposed to go to the hospital yesterday to review my newly prescribed Libre but they changed it to a telephone call at the last minute, where it seemed I did all the talking and she said very little. At the moment none of this concerns me too much as I’m happy with the care I give myself!

 

[grovesy]

I am Type 2 have been for nearly 20 years never been referred to Endocrinologist. I am seen a my Surgery and only by the Diabetic Nurse/s, sometimes we have had only had and sometimes as many as 3.

 

[nonethewiser]

Both Endo DSN at hospital, bloodletting is done at Drs & results sent over.

Drs surgery dont have foggist idea about type 1, experienced this over many years but cant fault care otherwise, so happy with way things are, a good balance.

 

[Robin]

I was referred to the hospital to start with, 15 years ago, but discharged back to my GP for all care after a couple of years, so saw the surgery nurse for everything. But what she could provide was quite limited, eg, choice of insulin. I asked to be referred back to hospital clinic a couple of years ago to get the Libre prescribed, and have had six monthly telephone calls from the clinic ever since to monitor that, while my bloods, feet, BP etc are still done at the GP surgery.

 

[PattiEvans]

I was initially diagnosed as T2 (despite needing insulin immediately and having ketones, but I was just 57, so clearly too old to be a T1!!!) and the only person I saw was the nurse at the GPs who saw the diabetics. Fortunately she was clued up and eventually referred me to an endo who did tests which proved I was T1. Had this re-diagnosis not taken place I would still be seen solely by her (she has been at the surgery throughout my diabetic journey). However, I now have a pump so I come under the endo at the county hospital diabetic clinic... though I have only had one phone call with him since the first lock-down, which is fine by me as I'm pretty self-reliant diabetes wise.

From my experience of this forum, and running DSF for over 15 years, it seems to be the norm that T1s are referred to hospital clinics and see an Endo or one of his registrars and/or a properly qualified DSN. Whilst the GP surgery does the bloods for Hba1c and other diabetic checks and the GPs nurse does the toe tickling. Whereas T2s are generally cared for by the nurse who sees the diabetics at the GPs surgery. Some of whom do not have a lot of knowledge and care can be patchy.

 

[helli]

I have been with my DSN at the hospital clinic since diagnosis nearly 20 years ago. Annually, I see her and a random endo - different endo each time and they all know less than the DSN but are needed to prescribe Libre and pump. Typically, a couple of weeks later, my GP surgery invites me for an interim diabetes review with their DSN. Given I have just received all my numbers at the hospital, I politely decline. This year, the hospital clinic date has moved so I decided to take up the GP surgery invite. The blood test has been done and next week I have a phone appointment. My expectations are low as the only test that was done was Hba1c, there will be no toe tickling or blood pressure taking and there will be no results for cholesterol, kidney or liver function to discuss.

 

[Sally71]

My daughter was only 6 years old at diagnosis and so was referred straight to hospital and has been with them ever since. We see them every 3 months, this might be just because she’s a child. Although during the first lockdown it went to phone calls only and we didn’t get hba1c done for a year, this is normally quite stable for her though so nobody was particularly concerned. She’s 15 now so they will probably start getting ready to transition her to adult services in the next year or so, I think because she’s on a pump she will stay under hospital care which is fine by me as they seem to know much more about it than GPs do (they have more specialist training). The GP has nothing at all to do with it apart from issuing prescriptions!

My mum is also T1 and as far as I know has always been under GP care and is happy with that. She has had a much different experience from us, she was diagnosed in 1967 and the next day the district nurse went round to show her how to do the first injection and then she just had to get on with it, no blood testing equipment or anything like that, so she doesn’t see the need to do all the tests and checks and adjustments that we do and just has her occasional check ups and then carries on. I don’t know how often she gets a check up but I don’t think it’s as often as my daughter does! They have tried to make suggestions to my mum along the lines of splitting her basal dose into two or doing more testing but she won’t hear a word of it and is happy as she is!

 

[Pumper_Sue]

Not seen an endo since 2017 had a phone call last year from one for my yearly pump clinic. Last time I saw the nurse in clinic was before the pandemic have had 1 phone call.
I do have the choice of ringing if I need anything though.

Like many others I am self sufficient so more than happy with things as they stand.

 

[mikeyB]

I have regular (currently 6 monthly) consultant appointments in a clinic at the local hospital in Clitheroe. Got one in a couple of weeks, where I will be pushing hard for a pump. They monitor my care using LibreLink, which I have given their access to do so. I can get in touch with them anytime by simply sticking a note on LibreLink and waiting for the call.

Of course if I do get a pump, things will obviously change, but that’s not a worry. If I do get a pump, I will switch from the Libre to a Dexcom G6 (or G7 if that appears in the UK soon). Then I’ll have to include them in my friends to be able to monitor things. I’ll have to pay for the Dexcom but that’s not a problem.

The result of all of this is I’m perfectly happy with my current care.

 

[Kaylz]

Just over 5 years in and always been under the diabetes clinic at the hospital, had a video call with consultant last year but that was the first time I'd heard from him since January 2020, had a call with DSN last January where she said she'd call back the following week but still waiting on that call 🙄 didn't bother getting in touch as didn't see the point if they weren't bothered xx

 

[trophywench]

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 .......

 

[JJay]

Saw a consultant around 6-monthly for about 3 years after diagnosis - they tried to give me my next appointment for a date that fell in the middle of my honeymoon (wedding not diabetes!) and when I asked to change it I was offered a date 6 months later! The diabees nurse at my GP said "That's ridiculous - we can look after you". And they did, extremely well, for 17 years. Then we moved house and I now see a GP (or one of the practice nurses) for the annual review and they refer me to the Community Diabetes Team (DSNs & dieticians) for any problems. Presumably they can call on an endo if necessary but touch wood it hasn't been. Very satisfied with my care.

 

[Leo]

OMG!!! Thank you all so much for replying so quickly! Let me read through all your posts before I answer you all… I was only notified about 1 reply so give me a minute or 3 to digest all of your experiences and thank you so much for your posts! Happy weekend everyone xx

 

[Bruce Stephens]

I've most been treated by my GP, but I went through a bad patch a few years ago and was referred to the local hospital team (who were and are wonderful) though I never met the consultant.

After about a year I was back with my GP again (though with contact details for the hospital team, and I can of course ask to see them again).

One of the DSNs spends a day a month at the GP surgery, and the last review I had was with a GP and the DSN, which seems like a good setup to me (was no problem switching me over to Libre 2 since the GP could do it right away). (I'm guessing for some surgeries that would be really convenient for patients, though in this case the surgery is about a 10 minute walk away from the hospital where I was seeing the DSN anyway.)

 

[Mrs Mimoo]

Diagnosed last march and not seen a doc at all I've been seen by 3 different practice nurses (1 a locum who seemed totally unintrested) for bloods / weight and bp, thats it nearly all my info comes from this site or the Internet, had an eye check but not a 'tickle test' so I've no idea if that's normal but I feel not.

dismissive GP so have focussed on the diabetes nurses who have been really good

 

[Hepato-pancreato]

From Diagnosis, which wasnt difficult as i,d just undergone a major pancreatectomy. Seen by my surgeon, then the diabetic clinic at the royal liverpool hospital. They transfered me to my local diabetic clinic in st. Helens as it was closer to home. Did all the relevant courses. seen endocrinologist when things wern't going well.went to the clinic for a few follow ups then fell under the care of the practice nurse at my gps. Which coincidentaly just had my yearly review. Where she changed my insulin so i could inject 1/2 units for more precision. Excellent care i have and do recieve.

 

[Hepato-pancreato]

Forgot to mention the podiatry care and eyescreening every year. Seems like i am lucky compared to some of my fellow diabetics.