...as i'm really not getting any help from my diabetes team. Let me explain. It's been 16 months since i've seen my diabetic team or any doctor and i'm starting to get a annoyed and concerned about it. I have had diabetes for 32 years (i'm 33 now) and i believe i have reasonably good control, my last A1C was 6.4 but i keep having problems with ketones that i really can't explain and i have recently been diagnosed with Diabetic Mastopathy which is making me really paranoid. I've emailed and phoned my specialist nurse and explained how worried i am and she keeps telling me she's trying to get hold of my doctor and she will be in touch soon, this was well over two weeks ago. I use to have such a great hospital team but lately they are making me feel that i have done something wrong and that i can't keep approaching them asking what the hell is going on. Has anyone else here ever had similar trouble or has been diagnosed with Diabetic Mastopathy. I really could do with some help and advice. Just to pinpoint where i live, i come from the South-West.
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In need of some advice...
- Thread starter Samantha
- Start date
- Status
Hi!
We are very new to all this - but - if your not happy to wait for the DN to sort something out - why dont you just contact the doctor yourself? It does seem a long time to have to wait! Espcially if you have had great control over the years and not needed to bother doctors so much - sorry for my ignorance - but what is myopothy? Bev
We are very new to all this - but - if your not happy to wait for the DN to sort something out - why dont you just contact the doctor yourself? It does seem a long time to have to wait! Espcially if you have had great control over the years and not needed to bother doctors so much - sorry for my ignorance - but what is myopothy? Bev
Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
Hi Samantha, I think it's pretty poor to say the least if your healthcare team hasn't seen you for so long! Don't you get called in for regular check-ups? I would have thought that they are failing bigtime in following the NICE guidelines for diabetic care, and maybe a complaint is in order. But your concerns are probably uppermost in your mind at the moment. Perhaps you could book an appointment with a GP and get them to make an official referral?
Regarding the mastopathy, I found this (rather technical!) explanation at http://www.medscape.com/viewarticle/462248_3 My reading of this is that it is benign, and probably related to the same kind of autoimmune response that causes Type 1 - a reaction to the insulin, or the fluid that contains it, over a long period of time.
I hope that you get the reassurance you are looking for soon - do keep us informed, and take care.
Regarding the mastopathy, I found this (rather technical!) explanation at http://www.medscape.com/viewarticle/462248_3 My reading of this is that it is benign, and probably related to the same kind of autoimmune response that causes Type 1 - a reaction to the insulin, or the fluid that contains it, over a long period of time.
I hope that you get the reassurance you are looking for soon - do keep us informed, and take care.
Hi Bev
Apparently Diabetic Mastopathy is a rare condition so i really wasn't sure how many here would have actually heard about it, i didn't know anything about it till a month ago.
Here's a full explanation as to what it is here on the Diabetes UK website 🙂
http://www.diabetes.org.uk/en/Guide...s/Long_term_complications/Breasts_Mastopathy/
Apparently Diabetic Mastopathy is a rare condition so i really wasn't sure how many here would have actually heard about it, i didn't know anything about it till a month ago.
Here's a full explanation as to what it is here on the Diabetes UK website 🙂
http://www.diabetes.org.uk/en/Guide...s/Long_term_complications/Breasts_Mastopathy/
Thanks for the link Northerner i will go and check it out later 🙂
No i don't get called in for regular check-ups, to be honest i can't remember when they sent me out an appointment last. I feel i have every right to complain, i just wasn't sure how to go about it. Maybe a phonecall to my GP is in order first thing tomorrow morning.
I'll let you know how things turn out.
No i don't get called in for regular check-ups, to be honest i can't remember when they sent me out an appointment last. I feel i have every right to complain, i just wasn't sure how to go about it. Maybe a phonecall to my GP is in order first thing tomorrow morning.
I'll let you know how things turn out.
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Einstein
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi Samantha,
It's terrible that you've fallen through the system, I agree a good place to start is your GPs, at least they can put this through to your consultant as a matter of urgency.
Personally, I'd do one of two things, book an appointment with your GP to explain everything and get them to chase this up for you, or put it in writing to your GP. That way you have a record, as does your GP rather than just a phone call.
My GPs seem to want to monitor my diabetes locally as well as through the hospital, a pain, but at least I know I am covered.
Good luck.
It's terrible that you've fallen through the system, I agree a good place to start is your GPs, at least they can put this through to your consultant as a matter of urgency.
Personally, I'd do one of two things, book an appointment with your GP to explain everything and get them to chase this up for you, or put it in writing to your GP. That way you have a record, as does your GP rather than just a phone call.
My GPs seem to want to monitor my diabetes locally as well as through the hospital, a pain, but at least I know I am covered.
Good luck.
Hi samantha,
i would certainly look at getting an appointment with my doctor and see if you can get in to see your consultant to. if neither are forthcoming then i would look to change clinics and also make a complaint as this is very wrong. you should be seen on a yearly basis as a minimum requirement. im very lucky with my team and i get seen every 3 months by my consultant and also once a month by my dsn (plays havoc with my work lol but i dont mind).
again if not happy then you have rights under the patients charter to change your team.
hope this helps 🙂
mike
i would certainly look at getting an appointment with my doctor and see if you can get in to see your consultant to. if neither are forthcoming then i would look to change clinics and also make a complaint as this is very wrong. you should be seen on a yearly basis as a minimum requirement. im very lucky with my team and i get seen every 3 months by my consultant and also once a month by my dsn (plays havoc with my work lol but i dont mind).
again if not happy then you have rights under the patients charter to change your team.
hope this helps 🙂
mike
Hi Samantha,
Thanks for the link - it sounds as though it can be treated so at least that takes the worry out of it.
Its my son who is type 1 (10) but its good to know as it says in the link that sometimes males can be affected too. Hope all goes well when you eventually get to see a doctor! Bev x
Thanks for the link - it sounds as though it can be treated so at least that takes the worry out of it.
Its my son who is type 1 (10) but its good to know as it says in the link that sometimes males can be affected too. Hope all goes well when you eventually get to see a doctor! Bev x
sofaraway
Senior Member
You could try to get through to your consultant by phoning his/her secretary and leaving a message. Sometimes we have to chase things like appointments up, which shouldn't really be the case.
I hope that you can get seen soon to try and sort out the problems you are having
I hope that you can get seen soon to try and sort out the problems you are having
I would complain to your primary care trust if I were you. According to Diabetes UK you should be seen annually (http://www.diabetes.org.uk/Guide-to..._when_your_diabetes_is_reasonably_controlled/). I would start with complaining to the hospital/clinic, then go to the PCT if you have no luck. You can find the primary care trust details by searching for '(borough/council name) PCT' with a search engine.
Also as others have suggested I would ring the clinic and ask to be put through directly to the doctor. Even if they are busy you should get their answer machine and can leave a message. In this message it helps them if you leave your hospital number.
Northerner, the link you gave seems to ask for a login. Is it doing this for other people or just me?
Also as others have suggested I would ring the clinic and ask to be put through directly to the doctor. Even if they are busy you should get their answer machine and can leave a message. In this message it helps them if you leave your hospital number.
Northerner, the link you gave seems to ask for a login. Is it doing this for other people or just me?
Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
It's not just you, Lizzie - it's me as well when I try it! How silly! I went to the page from a google search and there was no request for a login. In fact, if you copy medscape.com/viewarticle/462248_3 into google, it takes you into the page.
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I have just noticed it is a free service, you just need to register - no need to provide your true details either if you are worried about spammers.
Never heard of that either...
Blimey !I have never heard of that either - T1 for 34 years! I know you must be terribly frustrated - the only thing I can say is that if it was an emergency they would be rushing you straight in - so in a way it is a blessing that they are not.
You just have to keep at 'em.
Let us know how you get on...
Blimey !I have never heard of that either - T1 for 34 years! I know you must be terribly frustrated - the only thing I can say is that if it was an emergency they would be rushing you straight in - so in a way it is a blessing that they are not.
You just have to keep at 'em.
Let us know how you get on...
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