Am I going to have a fight to get a pump?

[Pee Wee]

Potted History.

I've been type 1 diabetic since age 17, now 34.
I've not had very good BG's ever I don't think to be honest, I could always have a big push to bring them down, only to find I was having lots of hypo's and it scary and inconvenient, particularly when working at height!

I have been worried about my high levels but in the abscense of any practical advice I've buried the head in the sand and not been to clinic in 4 years (I know I know)

Finally, pulled head out of (sand) or insert another word here.
Went to GP's got bloods done, HBA1c was 8.9, and worryingly protien in urine.
I don't know how bad yet, as have to wait for second test, but I've asked to be referred to my local diabetes specialist at he Liverpool Royal hospital, unfortunately the referral system was down at the time of my appt. so have to get another appt.

In the meantime, I did some research and left a message for the head diabetes Nurse there (Gill Morrison) to see if I could get registered with them any quicker, and she has just called me back.

I had a brief chat and explained that I've fallen off their radar, and am very anxious to do the best I can to improve my levels and would be interested in looking into a pump.

My cousin has one, and it has been great for her- I beleive it would help me also.

She stated straight off that according to the NICE guidelines you have to be 'well controlled on injections' before being considered for a pump.

I have read the NICE guidelines and that wasn't my interpretation of them! -

I would say I fall into the 'extremely anxious about hypos (and my driving license) category'

Any thoughts? anyone else managed to get a pump from Liverpool area? and do I go on with my honest approach or will that not work??

And just in case Gill or Jill Morrison reads this -

" Hi, I'm very determined now to get the best level of care available that I'm entitled to, I apologise if this makes me a thorn in your side but that may be how it pans out."

 

[hanadr]

Don't know about pumps, but know you have to fight for anything/everything.
How has reducing your carbs affected your numbers? It's a way of getting numbers down on reduced insulin and reduced risk of hypos.

 

[jopar]

Pee Wee

No, you don't have to be well controlled to have the NHS fund a insulin pump... You will though have to proof that the attempts that you are making to keep control isn't working.....

Depending on how pump friendly your consultant is will largely depict what sort of battle you will have getting one...

But you can start now with case building of why a pump is a good idea! You need to monitor you control, write everything down, carns types and amounts you've eaten how much insulin you injected for this.... What sort of excerise you done whether you've been ill etc... To show the consultant when you get a appointment..

Research the insulin pump, to see how it might help with control so that you can say this my problem and If I had a pump then I could over come this by?

The more information that you have to prove why it is a good idea, the better equiped you will be to fight for it if you have to....

 

[Pee Wee]

Thanks for the replies.

Yeah, I thought as much and I'm in the process of doing just that, unfortunately I'm having lots of hypos in the process, now at the moment I'm working from home but when I go back on the road again it's not quite that simple.

Anyway, reducing carbs does work for me, whenever I've tried to lose weight and have naturally reduced carbs my sugars have come into check, however I don't wish to cut them out too much as I get such cravings that I'm just not able to resist!

I'm trying to go for low GI carbs rather than none at all.

Anyway, if a fight is required a fight it will be!

 

[albannach2]

Hi Pee Wee
Gosh what an honest posting. Its hard to keep on track all the time, I think we're all with you on that one
It would be worth you trying to do the DAFNE course first of all before getting a pump, in my opinion. If you've been struggling for a while with things, this really helps you to focus on what you need to do plus gives you the foundation for understanding how the pump works. I know DAFNE isn't available in all areas, but certainly would be worth finding out about and often hospitals are more keen to pay for a pump if you've gone through this programme first. Take a look at this website, it may help.http://www.dafne.uk.com/index.html

Best of luck

Sally

 

[Steveee]

Hi Pee Wee,

Perhaps I am lucky but my DSN suggested I go on a pump approximately 2 years ago. I did not have to ask for one!!! I have never looked back! The criteria should generally be the same in all areas, i.e. you havereally tried multiple insulin therapy and it is not working. This probably means HBA1c is going up. Another criteria is regular hypos probably caused because you are trying to maintain a low blood sugar level.

What you will probably find is that they will not allow you to start pump therapy until you have completed some form of carbohydrate counting course, e.g. DAFNE or BERTIE. There may be a waiting list for that rather than the pump.

Good luck in your quest...

Stevee

 

[Pee Wee]

Hi All, and a belated Thank-You for all your advice.

Right, where to start?

I have been religiously trying to control my BG levels since last post, and monitoring the effect of different levels of carbs vs insulin etc.

I had come to realise that for me personally better control is at the expense of daily hypos, and I was finding that keeping those figures low meant a lot of testing and probably was unsustainable for myself.

Yesterday, I finally had my meeting at the Diabetes clinic, and afterthe usual checks and tests I raised the issue of being considered for a pump.

I was then seen by a very nice Consultant specialising in pump therapy (Dr Weston I believe if memory isn't playing tricks) who is the colleague of the lady I had spoken to previously.

I'm happy to report that both Doctors Weston and Morrison are very pro-pump for the appropriate patients, and I was able to show that includes myself.

Had a really interesting discussion regarding my diabetes control, as I have brought my HBA1c down to 7.4 since last post (not 12 weeks since it was 8.9) and I was shocked to find out that there can be problems with bringing it down too quickly! - apparently this is one of the things I will be taught prior to getting a pump.

Anyway, I have to issue an apology about Dr Gill Morrison, - I think possibly the fact that she had this neurotic guy phone her up and ask about pump therapy when she had no access to any of my notes or any idea who I was probably meant that she wanted to keep my expectations in check, and I interpreted this as being negativity towards the idea.

And so it begins, I feel yesterday was the most significant day in my life (Apart from the day I got married) since I was diagnosed. I am very determined to make lots of changes to my health not just diabetes control and hope that the pump will be a useful tool.

I'm currently waiting for contact from the specialist pump team in Liverpool to make appointments for various things I need to do prior to getting started.

I feel a bit embarrased that I haven't sought out help sooner, whether it may have been a pump, local support group, this forum or whatever and hope I can slow or stop the kidney deterioration so that I can have a healthy future.

I'll keep you updated on my progress.

 

[lambros6]

HI.
I was fitted with a pump about four weeks ago at the Royal and it was with Gill Morrison.
I was diagnosed type 1 nearly seven years ago and after a while, they told me I had "brittle diabetes".
Which meant my blood sugars were uncontrolable.
I was having up to 10 hypos a week and high blood sugars averaging 16+
I was referred to the Royal 18 months ago and after trying different ways of controlling my diabetes they thought it best I go on the pump.
So Gill Morrison and Dr Weston arranged it all for me.
Gill is excellent.
Through her guidance over the past few weeks and at present, she is helping me and another 5 or 6 people who came on the pump at the same time.
I can,t see a problem for you going on a pump.
It,s the best thing that,s happened to me in seven years.
It takes a bit of getting used to and your body has to adjust but I cant believe when i test my sugars and I,m getting 5,s and 6,s.
One of the pluses is that you have a bigger variety of food.
Regards.
Terry Walsh.

 

[embubble81]

Hi there
I am doing some research into the pump also for my Dad. I read the guidelines also as you have tried to control your sugars with insuline and it is not working out? I want to know who makes that call? My Dad has been struggling for 12 years. Even when I lived at home and his diabetes was definatley more controlled never has the pump b een given as an option.
I know this does not have to be life threatening but for Dad at the moment it is and I am worried. I do not know any other way to get theGP's, nurses etc to see that Dad is not coping.

 

[jopar]

You need to approach the main person either GP or Consultant who oversee's you dad diabetic care. If this is his GP, then most will actually then make a referral to a consultant. If this is so if you contact INPUT they will be able to tell you the pump friendly consultants in your area..

 

[lambros6]

Hi Embubble81.
I understand the worries you have for your dad.
My kids have seen me change from a very healthy fit dad, into someone who,s had seven years of sickness, frustration,weight loss. severe hypos and all the other complaints that come with uncontrolable diabetes.
Do you have a diabetes clinic or does a hospital have a diabetes department?
If your dad is or can attend either of these, he must ask for referal for a pump.
Having been on the pump for less than two months, I just wish I,d have been on it from the beginning.
I hope with the help of yourself and your family, that you can push for your dad to get a pump.
Diabetes is dangerous, especially when it,s uncontrolable and I feel for what your dads living with.
So keep pushing and asking questions.
Good luck.
Terry.