why i'm not allowed a pump

[soniajay]

i am 41 have had t1 for 15 years ive always had trouble controlling my diabetes and over the last year or so i dont feel any hypos till at least 2.2 or lower. ive asked for a pump and been told im to old and proberly wont get one so dont bother trying , why?

 

[Ali H]

Re: why im not allowed a pump

Hi Sonia, who did you ask?

I would personally put together a letter outlining all of the reasons why I think I should be allowed a chance to trial a pump in order to gain better control. Using the internet I would find whatever evidence I could that backs up your request including any NICE guidance that might be out there perhaps?

I cannot see how they can just give a blanket no on account of age. You aren't old! In fact we are the same age. If you have the money can you afford to see an endocrinologist privately? If they recommend a pump you can then switch back to NHS care. Might be a way to get a decent second opinion?

Ali

 

[phoenix]

Re: why im not allowed a pump

Who told you this?

There is nothing about age in the NICE guidelines (apart from different rules for children under 12)

Continuous subcutaneous insulin infusion (CSII or ‘insulin pump’)
therapy is recommended as a treatment option for adults and
children 12 years and older with type 1 diabetes mellitus provided
that:
• attempts to achieve target haemoglobin A1c (HbA1c) levels with
multiple daily injections (MDIs) result in the person experiencing
disabling hypoglycaemia. For the purpose of this guidance,
disabling hypoglycaemia is defined as the repeated and
unpredictable occurrence of hypoglycaemia that results in
persistent anxiety about recurrence and is associated with a
significant adverse effect on quality of life
or
• HbA1c levels have remained high (that is, at 8.5% or above) on
MDI therapy (including, if appropriate, the use of long-acting
insulin analogues) despite a high level of care

I have a pump and will be 60 this year but I'm not in the UK. However I know of several people in the UK who have pumps at an older age.
This organisation has experience in helping people acess pump therapy in England.
http://www.input.me.uk/
and Scotland (it does seem harder there)
http://www.ipagscotland.org/

 

[Ali H]

Re: why im not allowed a pump

http://www.nice.org.uk/nicemedia/pdf/TA151Guidance.pdf

NICE document above too.

Ali

 

[Georgie's Mum]

Re: why im not allowed a pump

Don't take 'no' for an answer!

You need a pump to preserve your long term health. Having a pump now could save the beloved NHS thousands of pounds in the future when you could suffer from complications.

Write to your doctor, your health team and any one else you have had contact with when trying to sort out your diabetes.

I struggled long and hard to get my daughter a pump but through sheer determination and demanding to see who it was that was refusing to supply, after three months and an appointment with the big chief, we got one and haven't looked back since.

Having a pump isn't easy but it certainly will make your life easier.

 

[CarbsRok]

Re: why im not allowed a pump

i am 41 have had t1 for 15 years ive always had trouble controlling my diabetes and over the last year or so i dont feel any hypos till at least 2.2 or lower. ive asked for a pump and been told im to old and proberly wont get one so dont bother trying , why?

Who said that you?
If it's true is called ageism sp*
I would be interested to know the rest of the story as to why you can not control your diabetes.
Is it because you dont carb count or adjust your insulin depending on blood sugar reading? How many blood tests do you do a day.
I was 47 when I had my first pump.
So we need to know the whole story behind what you were told or even if you misheard or misunderstood what you were told.
INPUT has plenty of information for you to read as well. http://www.input.me.uk/

 

[iHs]

Re: why im not allowed a pump

Reading this message has made me feel very angry and upset that you have been told that because of your age you wont get on with a pump. This is absolute rubbish. I was 55 when I got my pump and like CarbRok I have been type 1 for a very long time. I didn't have to go down on bended knee to get one either. My consultant was really lovely and appreciated that I was trying my best to achieve lower bg levels so that my GP could reach her target and failing a bit, but agreed that a pump would give me a better quality of life with less anxiety.

 

[soniajay]

thank you all for your answers, it was the dibetic specialist that said no, the diabetic nurse also said i would not get one either , i carb count and test my blood loads the specialist also said i have a abnormal morning phinomina where blood sugar is alway high with no reason, i have persious aneamia b12 difficancy at curtain times of the months when my b12 is running low my blooods go all haywire but none of the doc seem to think theres any connection im no doc but i live with it they dont and if i notice my blood all haywire around the time that my b12 is running low and ok ish at other times its obviouse , anyway when im next a the hostpital fr my routean check up i shall ask again , and no i dont have the cash otherwise i would have one by now ,

 

[Ali H]

You don't need thousands, a consultant's appointment is typically £150.

Ali

 

[Tracey167]

Hi

What a cheek, your not to old for a pump i was given one and i was 41 at the time but unfortunaley it did'nt work for me i ended up giving it back after 3 weeks (but thats a different story though posted somewhere on the forum)

tracey167

 

[CarbsRok]

thank you all for your answers, it was the dibetic specialist that said no, the diabetic nurse also said i would not get one either , i carb count and test my blood loads the specialist also said i have a abnormal morning phinomina where blood sugar is alway high with no reason, i have persious aneamia b12 difficancy at curtain times of the months when my b12 is running low my blooods go all haywire but none of the doc seem to think theres any connection im no doc but i live with it they dont and if i notice my blood all haywire around the time that my b12 is running low and ok ish at other times its obviouse , anyway when im next a the hostpital fr my routean check up i shall ask again , and no i dont have the cash otherwise i would have one by now ,

Then you need to ask them to put in writting why you can not have one then address the issues, If this does not resolve the problem, then go to your GP and ask for a referal to a pump friendly clinic.

 

[Julie1471]

I've had the same, at my last appointment my hb1ac was 7.3% down from 9.3%. The only way I could get it down to that level was to have constant hypo's on the Tuesday before my appointment I had 3 in 1 day. On the day of the appointment when they tested my bs it was 1.3 with no hypo signs, well not untill I got back to the waiting room where hubby was waiting for me with snickers bars and lucozade. So once again I asked for the pump, only for the registrar to come back from asking the consultant to be told we will try one, more thing. I have had this for the past 15 years. Raise my my insulin I start going hypo, lower my insulin and my blood sugars go up, on my last vist I talked to the diet person, because consultant said my highs were food related. So I reeled of what I ate and she came back with I can't tell you to change your diet as your eating what we suggest. I can't do a daphnie course because hubby has set holidays. And this is now having a big effect on my family life, kids see a snickers bar or lucozade and they come out with you've had another hypo and hubby is scared of going to work, wondering what he might come home to and early morning hypo's are affecting him, because some morning's he's going to work on 3 and half hours to 4 hours sleep. Which is not good for his job. I said all this and was in tears as I don't know what else to do, I do as they ask and we go round in circles yet again I've contacted Nice for advice but they say that they can't comment on individual cases. Sorry for the long post, but I don't know what to do for the sake of myself and my family.

 

[noblehead]

41 to old to have a pump.............why is a good question! :think:

I would get that in writing from them and take this up with the help of Diabetes UK.

 

[phoenix]

You mention that you can't do a DAFNE course.
There is an online course that might help. It is from the Bournemouth diabetes and endocrine centre and covers carb counting dose adjustment in a similar way to DAFNE
http://www.bdec-e-learning.com/welcome.asp

 

[Pneu]

Some people seem to get a pump without a problem and others have real problems... I have been fighting for a pump for around 24 months now.. it would save me the 10+ injections I take a day at the moment to maintain my control and give me much more control over my exercise and DP... i.e. I make a lot of sacrifices to get my good control and it would be nice to keep this level of control and add some more flexibility and achieve a better quality of life... The consultant even 'inferred' to me last time that if I came back in six months with a couple of trips to A&E under my belt and a more 'normal diabetic' HbA1c I would have a shot at one!..

 

[gollymax]

Please don,t no for an answer, I have had type 1 diabetes for 51 years and my diabetic consultant said I could not have a pump, I argued until I was blue in the face, my HBA1C has been around 6.5 for many years, I was doing up to 10+ injections a day, I could go to bed at 10pm and my BG would be say 5.6 at 2am in the morning it would rise to 12-15, I had lots of highs and lows.
After i see a physiatric nurse and explained my problems to her she passed on my info to my consultant and the next time I visited him he allowed me a pump, my BG a majority of the time are between 4.5-8.0 the pump is excellent and I would never go back to injection again
All the best to you and you get the pump in the end.

Kev

 

[Julie1471]

Thanks for that, I'm not the only one at my hospital having trouble with getting a pump a friend of mine is as well. I got told to cut the amount of injections I was doing I was doing 5 having the baseline between morning and night and got told to stop doing the evening one but I still do short acting if it's high.And just do the morning one, why do they make it so hard for those of us, who want good control, but can't get it,do they get extra payments for treating us????

 

[SteveI]

Different PCTs seem to have different policies about this. I was given a Medtronic pump when I was 68, but our PCT wouldn't fund the Medtronic continuous glucose monitor that works with it and prevents me having hypos. If I had lived in Bournemouth, apparently the NHS would have funded it. As it is, I have to fund it myself.

Luck of the draw, it seems.