Carb counting waiting times

[alohanicky2009]

I just had a appointment at a new hospital EXETER as unhappy with care at nearest hospital re diabetes care, DSN feels that a pump will help me with better diabetes control and fulfil NICE guidelines, but the doctor / consultant wants me to redo a carb course as the one I attended 5years ago (which I did hoping for pump then) needs updating , my question is how long is the waiting times , I asked but was told it's a long wait but could not any answer to weeks months etc, but they won't be sending another appointment date for at least 6months with hopefully they then can tell me then with how long, how long has anybody been waiting an idea of how long would be good as I feel so despondent just need a light to focus on ,


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[mrburden]

I just had a appointment at a new hospital EXETER as unhappy with care at nearest hospital re diabetes care, DSN feels that a pump will help me with better diabetes control and fulfil NICE guidelines, but the doctor / consultant wants me to redo a carb course as the one I attended 5years ago (which I did hoping for pump then) needs updating , my question is how long is the waiting times , I asked but was told it's a long wait but could not any answer to weeks months etc, but they won't be sending another appointment date for at least 6months with hopefully they then can tell me then with how long, how long has anybody been waiting an idea of how long would be good as I feel so despondent just need a light to focus on ,


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4-6 months is an average wait for a carb-counting course here in Dorset. Interesting that you say the one you've done needs updating. I didn't realise that they went out of date, as such.

 

[alohanicky2009]

They don t get out date but I have diabetic complication of Gastroparesis which for me means when I eat food it can take a very long time to digest (days ) so we never know when my insulin .will be used , so get very high reading as food is left and then very low , so very hard to figure how much and when to inject as foods can take a long time to transient through so need advice on what foods need less and how other types of food can change absorb times,


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[noblehead]

The waiting times do vary, I think when I did mine it was around 6 months which seems to be the average. Ask your DSN if you can put your name down for any cancellations that may come up, of course you would need to make yourself available at short notice and this may not fit in with your work schedule.

Good luck and hope your successful at getting the pump :thumbup:

 

[donnellysdogs]

This infuriates me.. I got a pump (fantastic DSN / Consultant in South Wales), but I have never done a carb counting course officially. I looked at BDEC course off my own back.. But to be honest, if you've been on one course why do HCP's insist you go on another? Isnt tjis just another waste of NHS money? People are fighting to get a chance to go on one course, and yet you are having to go again?
Sorry, this makes my blood boil. I would have thought that a referral to double check with a dsn/ dietitian should have been enough....
This really is a postcode lottery for hospitals putting barriers in the way to getting pumps....
Nor sure now, does it state a time limit or carb counting anility in NICE guidelines? Probably mentions carb counting, but may be worth checking whether any guidelines for time limiations ... Ie within 12 or 24 months etc.
Maybe worthwhile going to INPUT and asking them to support you through getting a pump?
This really makes me mad, card counting is hardly rocket science...

 

[noblehead]

Good point DD, two in five years does seem like a waste of time, cost and resources :?

 

[alohanicky2009]

I agree why do I need another carb course , the first one only had five people and one never came back after the first day and another felt that it was not suitable for her as she was a resident in a care home and had very limited input to meals , but the hospital felt that any more than five persons meant we may not get enough time to cover any questions , I have asked for a cancellation as I am unable to work because the diabetes is so brittle,, but yes I will keep asking every month , but I got the feeling at my consultant ion that I will be seen in about6 months , to bring along my readings in a insulin diary (not a detailed page a day were I logged everything BS , exercise food and insulin) then it will be discussed about pumps and what is needed ie carb course so looks as if it could be another year,


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[hale710]

I've been waiting for a place on DAFNE since march.

I was given a place on a 3 hour carb counting course though when I was first diagnosed. Was on it after just 2 weeks. Have me the basics to get me going while I waited for DAFNE

 

[iHs]

Hi

If you haven't done so, please contact INPUT regarding your situation as it is. Going on a DAFNE type course wont really help deal with the delayed digestion problems you face because of gastroparesis. I doubt whether the staff taking the course will have in depth knowledge and will most likely leave things to a dietician and a dsn.

Is there a chance that you could travel to another area in the UK where pumps are more available. You would need to ask your GP to do the referral. My friend got a referral from her GP to go a hospital in London to get a pump (she lived in Suffolk) and yes she was started on one..

 

[alohanicky2009]

Yes I changed to hospital that does pumps its is just short of 216 miles round trip , I live not far from Lands End in Cornwall, went to Exerter in Devon and they had no notes as apparently Cornwall does not share medical notes that includes blood test results with the next county. Don t notes get shared on computers, I sometimes wonder if I have GULLIABLEprinted on my forehead? Please know I am not this snarky at my hospital appointments I try to be polite ,patience and understanding, try not to take up to much time I have questions written down so they can see the list and deal with what is most important , am I doing it wrong?


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[donnellysdogs]

Know what you mean by different contys not sharing medical records.. I have a Northampton GP and Bucks Hospital .... 80 mile round journey... And they dont share medical records either.. Not even copying Consultant in with blood tests.

Aside from bloods and pump, you will have to check who will do your annual eye checks! Bucks Hospital Wont do them for me even though my clinic is there... I have to have them arranged by Northampton and my GP.. So check this out too..

Another idea maybe to see if there are any Insulin Pump User meetings anywhere near you... As then you could find out which consultant they see, and how the people managed to jump all the hurdles to get one....

I don't think you are approaching this wrong, its just finding out the way to get somebody to listen to you.

Perhaps composing a letter to your consultant, listing how you DO fall into the categories from the NICE guidelines? I would definitely speak to INPUT before doing this, as this would need to be composed perfectly, and copies kept of course....

I got mine within a month and no carb counting course due to an incident whilst driving. I was also so very lucky that on my very first appt at hospital ever was the day after this driving incident, and I was so upset at the feared prospect of losing my driving licence. Not a recommended way to get a pump... But the hospital had also bought combo pumps in bulk at the time as they were so forward thinking.....

 

[CollieBoy]

Same here, My consultants work out of Fairfield Gen. Hospital, Bury, and my GP (EastLancsCCG) gets its bloods done by Burnley General Hospital, a massive 18 miles apart but can they communicate? Only by me getting my results and taking th paper copy to my appointment (and then trainee endo fails to read them! :crazy: )

 

[iHs]

Where getting a pump is concerned, there isn't any real need for hospital record data from one hospital to be transferred to another one. When I moved to a different area in the UK, my old hospital data was never transferred to the new hospital that I registered with. Instead I had to start again by telling my new D consultant all about myself (took 20mins) and new records were set up. My old hospital records were either destroyed or transferred to a storage facilty never to be looked at again.

 

[cornishallblackmum]

l have just finished the plymouth pastie course which is the same as dafne, and the waiting time is quite short. the staff were saying that they were having trouble getting enough people to do the course! like you l live in cornwall and they had no problems accessing my medical notes.

 

[alohanicky2009]

How long was the waiting time for the pastie course , how was it done, over a number of days in a week or over a number of weeks attending for a day or half days, how many on the course and what did you think about it.


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[alohanicky2009]

The problem with different hospitals and doctors not sharing results is when asked about results and procedures that have been done is it came be hard to remember dates , results or even what was done as sometimes the "professional" does not give you very much information as you want as I am sure they don t want you to ask questions. If I have bloods at the doctors the hospital can get access but my doctor can not access any tests done at hospital, what a waste of resources and time to have them repeat them , I don't mind who sees them


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[donnellysdogs]

Totally agree, Having moved from Wales- all of my last 50 years of records have never followed.
Try explaining that you've been diagnosed but undiagnosed with both pernicious anaemia and palindromic rheumatism and I've had ANA tests that were annoemal but cant remember what the results were...
Currently have 3 different hospitals..and the two different counties. Diabetic consultant cant deal with diabetic amyotrophy, pain clinic in another different hospital and County cant do the EMG studys so referring me to a 3rd hospital... All for the same illness... And results arent shared between them!!!
Its just a waste of NHS money, and caring less.. When patients have to tell yhe different consultants what their results are... Laughable if it wasnt so desperately pathetic for a NHS business!!

 

[cornishallblackmum]

Sorry it's late getting back to you l have only just finished work. I was referred in feburary as l had lost hypo awareness and good control through having graves disease. I done the course at devonport via my consultant at derriford, l had a pre-course assessment at the end of april and started the course in june it would have been quicker but there wasn't enough people to do the course in may. I would recommend it , since doing it l have lost weight and my control is so much better and l am now out of the rut l had got into after 25 yrs of being type1. I hope this is helpful for you.

 

[cornishallblackmum]

I forgot to say that its run over a month, meeting every wednesday.

 

[alohanicky2009]

Thais cornishallblackmum your post is helpful will ask my DSNURSE if she or I can find out more information , thanks you


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