told that a pump would be advantages to me

[sofaraway]

Asked to be referred to the severe insulin resistance team. They are the national experts

http://www.cuh.org.uk/addenbrookes-hospital/services/national-severe-insulin-resistance-service

The info is there for your consultant or GP to refer you.

 

[Flowerpot]

The pdf for insulin resistance is a very interesting read, it does mention that some insulin resistant patients have responded well to the use of a pump and also to using the higher concentrate insulin. Thank goodness there are centres of excellence like this for what is such a difficult problem,

 

[phil169]

hi
what a day ????? first call was to the c.c.g got to speak to the chairman and he says that funding is there in place for people like me that is type 2 and is insulin resistant and not responding to conventional treatments. he will speak with my g.p and the consultant. next was NICE they told me that I would come under the special case group and there for pump therapy would be recommended. next the health ministers office (did not get to him he was in a cobra meeting) but got to speak with one of his ministers he says that he was very interested in what I had to say and would speak to the Mr hunt and see if there was a case to invest in some research into insulin pumps and type 2 diabetics. and look at the long term savings to the NHS. and promised to get back to me before the weekend. in all, all of them sounded promising lets see if they all come up trumps???. ( but Iam not going to hold my breath lol). in the mean time hospital phoned me to see if I was taking my insulin and I told them NO after a long chat with the nurse I give in and started it bm was 39.7 at 2.15 pm (I was beginning to feel like sh*t. it is now at 23.7 and that's after 60 units of apidra asked about U500 insulin so they will make appointment for me to see the doc again to discuss this.

thanks for all your help and tips.

 

[Minnie45]

That's sounding positive Phil and I'm glad you're injecting in the meantime. Please let me know how you get on, my friend keeps getting 'NICE do not recommend insulin pump therapy for type 2s', if you get a pump it would potentially give her 'ammunition' for a positive outcome.

 

[donnellysdogs]

Phil

Well done you for contacting so many people!!! And getting the great responses.

I'm with help from @Spiker here just conjuring up a letter to the research and development team for our CCG for Libre scanners to be trialled in our area for type 1's. I've had invaluable help from @Spiker.

Sometimes, it feels like being shoved in to a corner and doing or dying.... "From NHS side and your side"

This sort of attitude is what gets people to stand up in the NHS to notice that for some Patients "fits all" doesn't work.

I am also very glad that you have taken insulin and discussed u500. As said previously u100 strength is not the only insulin out there. It truly beggards belief that Patients are aware of this and NHS staff aren't. However, that's the world we live in. We live with diabetes everyday and like now spend our evenings researching it. NHS staff (without diabetes) appear to live it for their work hours only when they haven't got time to look at finer details of diabetes.

I hope foremost that you get a good result from your CCG Chairperson.

So, what else to say... So glad Phil that you have taken time out, and not only thinking of yourself but others. More importantly that you have taken your insulin. Badger the hospital tomorrow to find what the results were of them discussing your usage of u500.

 

[iHs]

Hello Phil

when I read this thread it reminded me very much of a lovely prrson I made friends with back in 2008 who was much like yourself. If you enter in the search field .....U500, and read all the threads, you will hit on the msg s left by my mate Fugs or Fuggsy. Have a read ......

 

[phil169]

thanks Minnie45 Don't worry if I get it I will be shouting from the roof top for all to know. lol

thanks Donnellysdogs I must say that the nurse did sound taken back when I asked about the U500 and when I said I have done every thing you have asked of me attended every course you have asked me to, but when I deer ask to try something or ask you for some thing the door is closed. well I am not going to let you treat me or anyone else that way you want a fight well you have got one. appointment will be in the post. lol
thanks mate for your support in this will keep you all up dated.

 

[donnellysdogs]

Like your spirit Phil... You will be educating the NHS staff for sure ref u500. In time they will regard you for being a Patient that does want to get levels down and does care. At the moment they will be wary, but I'm sure if you add in (when you talk) "you really want to be a patient that falls within the targetted hba1c guidelines, but they are putting obstacles in your way of achieving this...this is information that you have found out, and as much as the Patient has to work with the NHS, the NHS staff should also be working with the Patient"

Please keep us updated and I'm really glad you've got guts to fight and not lay down...

 

[donnellysdogs]

There were other goid suggestions above of people/organisations to contact. Bear these in mind..

 

[phil169]

thanks donnellysdogs I'v not started yet don't worry have a list of others to ring tomorrow lol

 

[CarbsRok]

Hi Paul, pleased to hear you have taken all the suggestions on board and have your fighting spirit back again.

 

[phil169]

thanks CarbsRok lol

 

[phil169]

hi all
another day on the phone ( diabetes.co.uk, diabetes.org, input diabetes.) all are keen for my to fight for the right to pump therapy, and gave me some good advice to go forward with, all agree that pumps should now be given as an option to every diabetic and not just the chosen few, there could be a possible saving to the NHS of between £100 and £200 per patient per month. its just the initial out lay that is the problem at this time. unofficially was told that at this time all new diabetics under the age of 19 will be given the option of a pump or MDI that's both type 1 and type 2.
that's a step in the right direction. but I want them not to step but run in the right direction. not all diabetics will want a pump and a pump would not suit all diabetics but we should all be given the choice to at least try at least when all else is failing to work.

 

[donnellysdogs]

A lot of type 2's don't need injections, some even come off tablets.i can't get my head around how it could be cheaper on a monthly basis for a pump by the figures that you have quoted.

I do believe that all persons that meet a criteria should be able to have a pump without a fight, but all costs have to be added in to a balance for budgets and true costs. Only reckoning on monthly costs is not a true realisation.

The costs of sets and tubes, batteries are enormous on a monthly basis and the additional tests that pump users tend to do compared to mdi is more as well.

I think to stand any chance of pumps for everybody you would need to break down the costs in further detail.

My personal advice would be to push for yourself, contact the people that are experts in insulin resistance etc because diabetes co uk and others cannot manage to persuade governments to look at blood strips to type 2's let alone pumps! I think that possibly lip service has been made on your calls...

Concentrate on your own needs before actioning for everybody. Not meant harshly, but with recent events in your health, I think you got to contact the insulin resistance experts etc that you were advised to contact as a priority,.

 

[phil169]

hi donnellysdogs I did call the insulin resistance service today and left a message for the to ring back. but no joy to day will try again tomorrow.

thanks mate.

 

[jack412]

hi phil, I hope you get the pump, as well as insulin, have you cut your carbs right back?

these sites helped me
http://www.dietdoctor.com/lchf it’s a long page and a video
http://lowcarbdiets.about.com/od/lowcarbliving/a/Food-Cravings.htm For me, the more carbs we eat the more carbs we want. they don’t give up easy.

 

[phil169]

thanks jack yes I do carb count and keep it under 50 carbs a day mostly 15-30 a day. thanks for the info will look at them.

 

[Spiker]

Vanishingly few Type 2s are under 19 so that is a microscopic change in policy.

With only around 10% of Type 1s on pumps in this country, and 10 times as many Type 2s as Type 1s, pumps for the other 99% are a long long way off.

Your best bet I imagine is to say you are on heavy insulin and therefore are Type 1.

 

[phil169]

hi all
letter from hospital doctor to day asking my gp to stop the pioglitazone ( prone to giving bladder cancer) to a DPP4 inhibitor Sitagliptin (know to increase pancreatic cancer or information of the pancreas) I know that these are of small risk but the risk is there. he goes on to ask my GP to discuss the pros/cons of this with me. as I am already being investigated for bowl cancer the answer has to be NO NO NO.

 

[donnellysdogs]

So what about u500, thought they were meant to be discussing this?