Which consultant for help to get an insulin pump?

[alohanicky2009]

Have asked to have diabetic care at Royal Devon &Exeter Hospital but have been given a choice of two consultants, I have been trying to get an insulin pump for 5 years and the consultant at the hospital in Cornwall I see has given me different reasons why I can not have one although I fulfil NICE criteria and DSNURSE agrees I should have one I have requested to change to Exeter Hospital. The consultants are Dr j n Walker or Dr k kos can anyone give me some feed back on either of the consultants , are they positive about pumps even if you have high HbA1c, (reason given this time given for not having a pump). How long is the waiting for pumps or carb counting courses . Any info good or bad will be helpful, thanks nicky


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[ConradJ]

Hi alohanicky,

I can't answer your question about the consultants at the RD&E, but I do think you need to write a letter to the consultant asking for his/her specific reasons for denying you the treatment you believe you are fit for.

If you don't get a (satisfactory) response, then complain to the Hospital board / patient liaison service and your MP - the doctor has to have a good reason for refusing you the pump (and finance is not one of the good reasons)... If my memory serves me correctly, there was a report into health provision in Cornwall a couple of years back that reported that Cornwall was not receiving the same level of investment and support.

Diabetes UK may also be able to provide you with some advice and support for getting a pump - changing hospitals may work, but then again it may not.

Good luck,

Conrad

 

[Lucypieee]

Hi Nicky,

Input (www.inputdiabetes.org.uk) are a great organisation that can also offer you advice and assistance in order to gain funding for an insulin pump.


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[ivinghoe]

Hi Nicky
If you check out the input website you should see that they`re holding a weekend exhibition in Truro on the weekend 5/6 October so if its not too far for you it could be worth your while going along. Input are really helpful and you`ll also be able to talk to the various pump manufacturers who will also be there.
I spoke to Input at a JDRF discovery day a while ago and as expected they where very helpful.
As you may have already found out, you will almost definitely need to carb count before being considered for a pump so if you havent done a course like DAFNE make sure you get booked on one as soon as you can as its the first step. Dont wait for info or to move hospital get it sorted as a matter of urgency.
I had to wait about 6 months from applying for a carb course to actually doing one. It was well worth the effort even if you aren`t put on a pump. I had been T1 diabetic for 33 yrs odd before I did my course and I learned loads as well as the carb counting.

 

[alohanicky2009]

Consultant gave the reason this time for not having a pump is that my HbA1c have gone up ( no surprise to me or DSNURSE as I have gastroparesis and suffer very highs and lows due to unreliable digestion so treat hypos with glucose) other reasons are I will have to do another carb course as the previous one was few years back, and things have changed for me, had the one about no funding also no staff to give support, but will try to be proactive and get on a carb course. Thanks for replies also have book to go to Input at Truro in Oct.


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[[email protected]]

Hi Nicky,

Can I ask why you have gone from (presumably Trelisk) hospital straight to RD&E? You totally missed out Derriford in between!

I am a patient at Derriford, the consultant that recommended me for a pump has since left, but it seems that the diabetes department is keen to get people onto pumps. Perhaps you should give them a try. Alternatively, really emphasise why you need one. I play a lot of sports, so I went to town talking about how much exercise I do, and that seemed to do the trick!

 

[pumppimp]

Hi Nicky,
As everyone else pointed out Input are really good and will be able to give you an idea of how pump friendly either of those consultants are. They may also be able to put you in touch with someone on a pump in your area or who is a paitient of the consultants listed above. Your HbA1c increasing is not good enough reason to refuse a pump unless your doctor thinks the reasoning behind that is because of your poor motivation. Check the NICE guidelines out and check you match everything then strongly worded letters can help as does copying in your MP etc.
To me you sound like a pump would be ideal for you, but then I'm not a doctor. The one thing I would do is learn how to carb count if you already know a bit brush up yourself I would reccomend going on one of the hospital courses but you don't need to wait, there is lots of info on here and elsewhere it's quite easy to be self taught then that should help you in the short term, and it shows that you're really motivated to get a pump.
Good Luck, Laura

 

[alohanicky2009]

Hi yes gone from Treliske opted for Exeter , but both plymouth and exeter have good positive feed back on insulin pumps but exeter was easier journey, have completed carb course 5 1/2 years ago in prep for a pump, but then their was no funding ,or nurses to give support for new people who would be going onto pumps so have been waiting since then but with more problems with control and complications dsn felt a pump would be better ,so for nearly 2 years have been trying to change to pump, now there is a long waiting list for carb course and consultant expects me to do carb course again which I don't mind but the wait is 18 months or more and felt that if he does not want to put me onto a pump as HbA1c have risen, my app is Tues so fingers crossed, yes I am committed for the hard work but my diabetes has always been a roller coaster.


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[alohanicky2009]

Forgot to say Input gave me the confidence to be more pro active and gave valuable advice on NICE guidelines for pumps which my DSNURSE confirmed that I fulfil on many levels ,


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[ConradJ]

Good luck - I hope you get there. :thumbup:

 

[alohanicky2009]

I will keep going if their reason for not having a pump is the risks of DKA I have had them already and still at risk but now I know never to wait sort it before I slip into coma, so what is the difference ? In fact I have better readings when I don t have long acting , as when I have been in hospital it is not given . Always asked why is BS better when on wards , was told it is because I am resting and not stressed? You have got to love the reasons you are given to explain things when the answer is not known or a GOW( god only knows)! Keep you all posted with progress,


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[donnellysdogs]

In hospital during DKA's were you hooked up to a drip?

More reason how drip fed quick acting (like a pump) is better for you.

 

[iHs]

Although DKA is a risk factor in using a pump (all new pumpers are or should be given a keytone meter with keytone teststrips when they get the pump at hospital), with frequent bg testing, high bg levels can be dealt with by using the pump to deliver insulin or by using an insulin pen or syringe.

If the risk of DKA was so high, then no diabetic would ever get the chance of pumping FULLSTOP. It is thought that bg testing 4 times per day would guard against DKA although of course to get the best from pumping, more frequent bg testing is usually necessary. I test at least 7-10 times per day so no chance of me ever getting DKA as I use the bg results to take the correct action.

 

[Lucypieee]

iHs is completely right. I met all the criteria, however, I have had DKA a lot in the past from infection. I am quite susceptible to infection and ketones / DKA generally follows. My team are fully aware of this, I have still been given a pump.

They have made it clear that I need to test frequently (BG and Ketones) and change my sites & sets frequently to avoid infection. By testing frequently you can interpret when you need to change your bolus or basal rates, when you might need to correct etc.


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[alohanicky2009]

Good news had a letter in the post for a appointment to see a consultant who is part of the pump clinic and its is next month the 15 th, another long trip but just need to see if I can get onto a carb course , anyone know where they is not a long waiting time or where they have problems getting enough people to start a course, any ideas gladly received


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[iHs]

Good news had a letter in the post for a appointment to see a consultant who is part of the pump clinic and its is next month the 15 th, another long trip but just need to see if I can get onto a carb course , anyone know where they is not a long waiting time or where they have problems getting enough people to start a course, any ideas gladly received


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Well done

Glad that things are moving along for you now. My tip is to get a copy of Carbs & Cals, do the BDEC online course http://www.bdec-e-learning.com/welcome.asp and also download the carb counting guide done by DUK (its a pdf doc) http://www.diabetes.org.uk/Guide-to-dia ... e-Counter/

If you do all of those, you most likely wont have to go on a carb course as there wont be any reason

 

[Cupcaake32]

I go to the rd and e too i had m donohue now i have mr fox finding out hopefully in october

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[alohanicky2009]

Hi cupcake I am back to R.Devon and Exeter in middle of Oct to see Dr Daly in the pump clinic, feel so much more positive only attended this hospital once it is very different to where I have been receiving diabetic care these last 18 years, counting days down and filling in notebook with BS results , food eaten ,


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[Cupcaake32]

Mr daly is lovely i had him a while back when i was admitted with dka fingers crossed we both get what we want

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