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I feel left out!

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Ghost Hunter

Ghost Hunter

Well-Known Member
Relationship to Diabetes
Type 2
Hi

:( I just feel like nobody cares and I am so confused with everything as a type 2 confirmed about 18 months ago I have been on a DESMOND course and a general healthy eating Food For Thought course which wasn't related to my diabetes but more to my constant weight gain.

I feel like I am left out. I have no support and no back up. I get to see my GP's diabetic nurse once a year and it's up to me to remeber to book it other than that - thats it as far as help goes. If I see my GP for anything they speak to me as if I should know the basics or at least I should and so I feel ashamed to ask them to explain everything as I dont grasp it all!

I dont want to sound paranoid but is it like this for everyone or have I been lost in the system :confused:

Any help and advice appreciated as I dont know where to start!

Thanks as ever. 🙂
 
Sometimes the system looses us.

On the Diabetes UK website there is a very good document outlining that the national diabetes framework expects/mandates PCTs and in turn your doctors and hospital to deliver to each of us as a diabetic. http://www.diabetes.org.uk/Guide-to-diabetes/What_care_to_expect/

I'd suggest two things to ask your doctor to do, first an appointment with a dietician, who can explain carbohydrates, levels, etc to you. Second, from a technical basics perspetive of diabetes I'd ask to see a DSN (Diabetic Specialist Nurse) these nurses deal in nothing but diabetes, my experience (subject, to your local postcode lottery) is that they are far better and knowledgable about diabetes than a nurse within the GPs surgery who seemingly did a 2 day course on diabetes some time ago.

Perhaps the last part of that is a little harsh, however, I'd stand by the intent!

All services within the NHS are there, the PCTs are mandated to deliver them, unfortunately unless you know what you're entitled to, the NHS will often not offer your entitlement to you. If you keep quiet you will get nothing, ask and you will get all you need and perhaps more.

Good luck!
 
Last edited:
ghost up until tuesday i was left alone to deal with my diabetes i had no outside help or a health team i had a constant battle with my gp they lost my referrel and i had a long 3 mnth wait to see this dietician on tueday, this place has been a complete tonic for me and i cant thank everype on here enougt, the way i see it they diagnose you with something then leave you to deal with it alone, if i had not seen in here someone say i would not of known the hbA1c was every 3 month i would of just let the months go by .. i am the kind of person that picks things up quite quikcly and i consider myself quite intellectual so using websites etc etc has really helped as well , now i cant judge this dieticain yet as i have had one 30 minute meeting with her but im hoping she is 'upto scratch , dont worry to much ghost t.s easy to say but we are all here for each other just ask anything anytime if you having worries wanna sceam and shout someone is always here hun xxxxx
 
Thanks both for replies so far 🙂 Feeling a lot better now for them

Steph I couldnt have put it better myself when you said "they diagnose you with something then leave you to deal with it alone" 🙂

Einstein Thanks for that bit of helpful advice I will definately take a look at link and contact my GP for that referal as well. 🙂
 
yeah we are all in same boat here either as t1 or t2 , im sure we have all dealt with less then helpful health professionals anytime you need a chat or are down maybe send me a private mai im always happy to helo x
 
Ghost hunter, is there a hospital near you with a diabetes department?? If so you should ask to see them.

(sorry if someone said that, im feeling lazy and i havent read the replies!)
 
katie said:
Ghost hunter, is there a hospital near you with a diabetes department?? If so you should ask to see them.

(sorry if someone said that, im feeling lazy and i havent read the replies!)
Click to expand...

Thats ok Katie, I'll let you off, I'd suggested dietician and DSN. Glad we're on the same page - refreshing for me at the moment!

Hope you're keeping well and studying hard? 🙄
 
I think I am really lucky as my doctor has diabetes - the practice nurse is another case as I explained earlier.

Ceara
 
Hi Ghost hunter
Please don't feel alone & left out as Steff says we are all in the same boat.
I too have been left to get on with things & still waiting for the educational program, my diabetic nurse tells me one thing then confuses me by telling me something different each time i speak to her.
The only support i get is from my GP she is very understanding as she too had diabetes while being pregnant so knows what we diabetics go through🙂
The dietician was useless so still got nowhere with that side of things so am having to educate myself, this group here have been very helpful to me & wouldn't be without it now, thank you everyone.
You Can also contact me if you need someone to talk to or shout at as we have all been through what you are feeling now & still go through these stages occasionaly.
As someone has mentioned try to see if there is a diabetic clinic at your local hospital they are the ones to ask, also have you got a local support group in your area, they have specialist diabetic doctors attend meetings & give speaches & advice.
We are all here for you Ghost hunter.
 
One of the things I've learned from this forum is that the label "diabetic" hides many variations and not just whether we are Type 1 or Type 2. I came to the conclusion after about 6 months that the only person who could work out what was right for me was me as I live with this condition all the time but I have also been fortunate in that my GP and the nursing staff at the practice have generally given me good pointers in the right direction when I've asked.

Time and time again though I go back to Gretchen Becker's book as such a useful source for Type 2s.
 
Thanks for the support everybody. Its great to feel im not alone. We do have a diabetes unit at the main hospital in the next town, thats where I attended my DESMOND course some time ago. I think they also have a support group over there but I have trouble with transport but I will have to see what I can do as naturally it would be of great benefit to me.

I am interested in learning more so will be going to my library again soon so if any of you can suggest some good books I will see what I can borrow to start with.

Thanks again its nice to have such good support and friends I think this forum might become one of my second homes 😉

Thanks

:D
 
Hi Ghosthunter , sorry to hear you feel so bereft , If you ever want to know

anything even if it feels like a silly question then just go for it !!! We have all

probably asked the same question ourselves at some point . There is no need

to feel alone , there are an awful lot of us diabetics about if you look in the

right place lol. :D

I hope things get better for you soon ,

Best wishes A.M
 
Hi Ghosthunter

Hi there,

I know how you feel, although the medical staff in my area are pretty good, i still get a bit lost myself from time to time. I had by first HBA1c today since january, i'm not sure if that's good or bad? Sometimes it feels like people are just throwing information at you for the hell of it (and none of it is good news...).
I'm really glad i found this site though, it's just what i need, somebody who can listen to me without the time constaint of being a busy nurse. (My GP? don't even go there...). I hope this message board can help you too.

Rachel
 
hi rachel i was told every 3 month for hbA1c but dont qoute me on that ,like you say you do sometimes think these people find it easier to just throw loads of booklets your way a few well sentimented words then they send you away and thats it you got to deal with it alone
 
HbA1c should be done at least once a year. Usually it's done every 6 months though. The most frequently it will be done is 3 monthly and thats usually on new diagnosis or if someone is having problems.
 
I was advised yesterday every 2 - 3 months as cell renewal occurs every 3 months therefore a rolling accurate reading can be recorded 🙂
 
Next week I am going to be getting myself 'back into the system' can someone tell me who I should be checking I am 'registered' with and how I find out who / where my DSN is please?

Thanks & have a great weekend! 🙂
 
There are people out there who care, we just have trouble finding them. Because I felt so ill I went to A&E and they transferred me to the Diabetic Clinic at the hospital and they are brilliant. See if you can find one. My GP refused to transfer me to the clinic months ago so I have had to fight to get some specialist treatment. Cheer up you're not alone we all know what you're going through
Joan
 
Ghost Hunter said:
Hi

:( I just feel like nobody cares and I am so confused with everything as a type 2 confirmed about 18 months ago I have been on a DESMOND course and a general healthy eating Food For Thought course which wasn't related to my diabetes but more to my constant weight gain.

I feel like I am left out. I have no support and no back up. I get to see my GP's diabetic nurse once a year and it's up to me to remeber to book it other than that - thats it as far as help goes. If I see my GP for anything they speak to me as if I should know the basics or at least I should and so I feel ashamed to ask them to explain everything as I dont grasp it all!

I dont want to sound paranoid but is it like this for everyone or have I been lost in the system :confused:

Any help and advice appreciated as I dont know where to start!

Thanks as ever. 🙂
Click to expand...

until lat month I had been left to get on with it too. Then I saw the DSN at doctors surgery. I told her I felt lost in the system. The nurse was very sympathetic and said I was obviously very knowledgeble which helped, but professionals forget when people are so intlegent they also need support in other ways to stop the isolation.

At least now I have the DSN to look forward to every three months, and even suggested different ways of taking my tablets. Then she took the list of don't do that doctor gave me and turned it in to a list of to do, like do have a treat as we all need chocolate sometimes.

Don't feel ashamed at not grasping it all at once. Have you watched a child grow up? There are lots of things involved before running and jumping, and it doesn't happen all at once. I do tai chi, I have been doing it for longer than I have been diabetic (tai chi about 8 years, diabetic just over 3), and I still have lots to learn.

We are all here with our diabetes, the trick is to control the diabetes and not let it control us.
 
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