Lack of Support?

[Icey]

Hey All,

I'm feeling rather frustrated and just really down.

I really don't feel like I'm getting the support I need from my 'medical' team.
I have only ever seen a doctor about my diabetes, and have only seen him once since diagnosed (last time I saw him was Nov!) and that was for him to tell me information I already knew (from reading) and to check my feet. I have never seen a DSN (and I'm not sure there is even on at my GP surgery).

I've had eye screening and have seen a dietician once (I'm off to see her again a week today). However the advice she gave (albeit helpful, doesn't seem to be fully about diabetes).

Should I be seeing someone more regularly? Oh, and I also don't even know my HB1AC, should I have been told this?

Sorry, I just needed to rant - I feel well and truly miserable about the whole situation over the last few weeks.



Thanks for reading.

 

[Caroline Wilson]

I was diagnosed in 2006. I had the education day everyone gets round here at the hospital and was given my puncture kit (my glucose meter). In that time I have seen the DSN once and the podiatrist once, and I had to set the podiatrist up myself. I have seen a DSN once and there is not one at my docotrs surgery. Last time I saw the nurse at my doctors surgery I spent an hour listening to her problems and still had to remind her what i was there for.

Everyone tells me I am strong and capable so they say I don't need the support. I come here and get all the support I need. I know people will listen and undestand and offer support advice and friendship here.

 

[Steff]

Hi Icey sorry to ask but how long have you been diabetic? you should certainly know your hbA from when you where diagnosed and from then you should have your hbA every 3-6 month depending on control, me and caroline have had simlier problems where we may as well just give ourselves the care , i had seen not once person in my first 6 month i diagnosed was given a meter from my nurse to begin with and 2 leaflets then i was summound in to the docs to be told oh you have to go on pills as the diet is not working, doh course it aint ive had no help i was just left to it, as far as my care is concerned i see a dsn every 3-4 month .i have no contact number for her or email , so your certainly not alone i think it is one of the biggest problems on this forum the wide spectrum of the level of care from place t place in the uk.

 

[AlisonM]

I've been in and out of the surgery like a yoyo since I was diagnosed, had the retinopathy screening but haven't seen a DSN or had a proper foot check. I'm being weighed once a month and I've had some problems with meds, plus I have other issues to deal with.

If you're not getting the support you need, make an appointment on your own, don't wait for them to contact you. Nag, until you get what you need. If your local hospital has a Diabetic Unit, you may be able to contact the DSN through them.

And, of course, we're always here to support you.

 

[Peter C]

Hey All,

I'm feeling rather frustrated and just really down.

I really don't feel like I'm getting the support I need from my 'medical' team.
I have only ever seen a doctor about my diabetes, and have only seen him once since diagnosed (last time I saw him was Nov!) and that was for him to tell me information I already knew (from reading) and to check my feet. I have never seen a DSN (and I'm not sure there is even on at my GP surgery).

I've had eye screening and have seen a dietician once (I'm off to see her again a week today). However the advice she gave (albeit helpful, doesn't seem to be fully about diabetes).

Should I be seeing someone more regularly? Oh, and I also don't even know my HB1AC, should I have been told this?

Sorry, I just needed to rant - I feel well and truly miserable about the whole situation over the last few weeks.



Thanks for reading.

Hi icey,
sounds like fairly standard care for new t2s ( "You've got Type 2 Diabetes - Now f#ck off and fend for yourself".)

You should have a trial period of either 3 or 6 months on D&E. After that sixmonthly A1cs, feet checks, bps, eye exams. But basically you are on your own.
And no as T2 it is unusual to see a proper DSN ( they are expensive to train and run and there are very few about). T2s mostly see the Practice Nurse at the Surgery. the Practice Nurse being the dogsbody/gopher who can look at your feet and take bps and chat about herself but whose qualifications for running a T2 are slight to non-existent.
They "start" you on Diet and Exercise but there is NO programme of Diet or Exercise for new T2s.You get waffle and perhaps a "heart healthy Diet" leaflet. They are not even going to tell you that starchy carbohydrates ( potatoes, bread, flour, rice, pasta) are the battleground foods for you.

Go for a couple of issues ...
1. If there is a GPwSI in Diabetes in your PCT ( there should be a couple of them - GPs with a Special Interest in Diabetes) ask for a transfer to him/her.
2. the national Framework for Diabetes says you have a right to an educational programme about Type 2 Diabetes, so request a place on an X-Pert or Desmond or equivalent course