all diabetics have the right to try an insulin pump?
- Thread starter kimberleyk45
- Start Date
AndyS
Well-Known Member
- Messages
- 784
- Type of diabetes
- Type 1
- Treatment type
- Insulin
Oddly enough I argued about the quality of life thing and also delivery method, though not quite like that.
My argument was along the lines of you are going to have to prescribe insulin and sharps regardless of the administration method so why should I have to pay the lot just because I choose and pay for a different delivery method. I think I got further shouting at a brick wall once.
Anyway sooner or later the system will catrch up I suppose. I have already had the argument that I am testing too much so I shot back "Well just give me CGM then" which silenced them and they changed subject.
Smile, nod and agree Andy, then ignore em all and do what you have been doing because it seems to be working.
My argument was along the lines of you are going to have to prescribe insulin and sharps regardless of the administration method so why should I have to pay the lot just because I choose and pay for a different delivery method. I think I got further shouting at a brick wall once.
Anyway sooner or later the system will catrch up I suppose. I have already had the argument that I am testing too much so I shot back "Well just give me CGM then" which silenced them and they changed subject.
Smile, nod and agree Andy, then ignore em all and do what you have been doing because it seems to be working.
jopar
Well-Known Member
- Messages
- 2,222
If you are in the position of having to fight for a pump, a piece of good advice is to research insulin pumping, so that you can then identify area's and times when the pump would have avoided a hypo, prevented an hyper or you would have improved your total control.. Every visit you nag, point out if I had a pump when I was faced with this that I would have had a much better chance of maintainin, avoiding etc etc...
The better you understand and build your case for your need for a pump, the harder it is for a consultant to say no because etc etc... Gem up on the cost of treating complications, how some of these will impact on your quaility of life... And the saving a pump can make in these areas.. Make sure that you say you want a 3 monthly appointment and a coyp of the latter that gets sent to your GP.. If your appointment gets cancelled, contact your consultants secretary/diabetic clinic ask for the appointment to put back or brought forward nearer the your oridgnal appointment...
And never give up hope or fighting, it took me just over 2 1/2 years of the above to get my pump, but I did achieve it...
And there is an advantage of researching pumping inside out, when you get your pump you will have a pretty good head start on how it works and what to do with it.. How certain problems which scare the hell out of the unawear user can be easily resolved because you've seen this question asked before etc..
AndyS
Most pump users that I've come across who self fund there pumps, only pay for the pump and the pump supplies, insulin etc are still provided by the NHS.. Until last year, concerning other medical treatments (such as self funded cancer thearpy) that it was the case if you brought drugs privately for treatment, then you would have to fund the whole treatment process... But last year this was changed and now you can part fund treatment if it's isn't available on the NHS/PCT etc...
If you intend to go self funding, and your consultant/PCT is saying you got to fund all aspects of your diabetic care, then I would enlist the help of your MP, to tackle this with the PCT..
The better you understand and build your case for your need for a pump, the harder it is for a consultant to say no because etc etc... Gem up on the cost of treating complications, how some of these will impact on your quaility of life... And the saving a pump can make in these areas.. Make sure that you say you want a 3 monthly appointment and a coyp of the latter that gets sent to your GP.. If your appointment gets cancelled, contact your consultants secretary/diabetic clinic ask for the appointment to put back or brought forward nearer the your oridgnal appointment...
And never give up hope or fighting, it took me just over 2 1/2 years of the above to get my pump, but I did achieve it...
And there is an advantage of researching pumping inside out, when you get your pump you will have a pretty good head start on how it works and what to do with it.. How certain problems which scare the hell out of the unawear user can be easily resolved because you've seen this question asked before etc..
AndyS
Most pump users that I've come across who self fund there pumps, only pay for the pump and the pump supplies, insulin etc are still provided by the NHS.. Until last year, concerning other medical treatments (such as self funded cancer thearpy) that it was the case if you brought drugs privately for treatment, then you would have to fund the whole treatment process... But last year this was changed and now you can part fund treatment if it's isn't available on the NHS/PCT etc...
If you intend to go self funding, and your consultant/PCT is saying you got to fund all aspects of your diabetic care, then I would enlist the help of your MP, to tackle this with the PCT..
- Messages
- 23,618
- Type of diabetes
- Type 1
- Treatment type
- Pump
- Dislikes
- Disrespectful people
Joper,
I am being nosey here, but I am also intrigued to know due to possibly looking at pump therapy in the near future. Regarding hypo's and hyper's, I know that they are successful in keeping bg's within a acceptable range, with a little hard work of course, but do you find that hypo's are less frequent when switching from injections to a pump?
Nigel
I am being nosey here, but I am also intrigued to know due to possibly looking at pump therapy in the near future. Regarding hypo's and hyper's, I know that they are successful in keeping bg's within a acceptable range, with a little hard work of course, but do you find that hypo's are less frequent when switching from injections to a pump?
Nigel
I have read through this thread quite quickly so I apologise if I repeat anyone who has posted previously.
The NICE ruling on 'box ticking' for eligibility for a pump was abandoned approx 18 months ago after the trial period ended and it was determined that in almost all cases the quality of life was enhanced/ improved by having a pump and pumps were deemed to be available for everyone.
This said, however, in every instance the provision of a pump is entirely down to the assessed suitability of the candidate by a medical professional. Assessed suitability is necessary because every healthcare provider is bound by a budget which negates provision of pumps for every diabetic. Pumps cost in the region of £3k and annual running costs vary according to personal usage, for me this is about $1800.
I too agree that it would be good if every single diabetic who wished for it was able to try it.
Also to reiterate a previous comment; you do have the right to choose your healthcare provider. Some years ago (pre pump) I travelled a 200 mile round trip to get to a hospital that could give me the treatment I wanted. A sympathetic GP comes in useful as he can make the referral for you.
Thankfully I now have the treatment I require/ want/ need from my local hospital. I also think its handy to know who the highest person to make complaints to in your hospital is. It's surprising how little letter writing and appealing needs to take place to get something sometimes....
The NICE ruling on 'box ticking' for eligibility for a pump was abandoned approx 18 months ago after the trial period ended and it was determined that in almost all cases the quality of life was enhanced/ improved by having a pump and pumps were deemed to be available for everyone.
This said, however, in every instance the provision of a pump is entirely down to the assessed suitability of the candidate by a medical professional. Assessed suitability is necessary because every healthcare provider is bound by a budget which negates provision of pumps for every diabetic. Pumps cost in the region of £3k and annual running costs vary according to personal usage, for me this is about $1800.
I too agree that it would be good if every single diabetic who wished for it was able to try it.
Also to reiterate a previous comment; you do have the right to choose your healthcare provider. Some years ago (pre pump) I travelled a 200 mile round trip to get to a hospital that could give me the treatment I wanted. A sympathetic GP comes in useful as he can make the referral for you.
Thankfully I now have the treatment I require/ want/ need from my local hospital. I also think its handy to know who the highest person to make complaints to in your hospital is. It's surprising how little letter writing and appealing needs to take place to get something sometimes....
Hi All im a pump user & have always kept fit, ate healthy & have been a diabetic for 15 years .... I attended the DAFNE course 6 months ago but was on the Pump waiting list for 12 months I had to fight to get the pump so i urge you all to not give up! keep pestering your specialist / nurse it worked for me. I lost all Hypo awareness and my HBA1C has always been 10 and above and nothing i did reduced this figure and at 1 point i spent 4 months in hospital and even under daily specialist care my levels were up and down, much to the specialist puzzlement. Not all pump users are given a pump because they are out of control due to their own fault! Pump usage is a bit of guess work in the begining and takes a few months to get the setting right after loosing a stone in weight im back to reducing my levels even further (hence daily Hypos) I suggest anyone wanting a pump to push your specialists, they do cost approx 3k and about £120 per month for the tubing etc...but i think every1 should be given the opportunity on the NHS to try 1 out (1 of my diabetic friends didnt like the pump and went back to 4 injections per day). But i disagree that pumps are only given to people that can not controll their diabetes due to their own faults.
Kimberley
>>apparently in my area of scotland the funds given for pumps has been halfed & as they cost over £1000 they choose the patients who are allocated 1 very closely, this will be even worse now funds have been cut. My diabetic nurse told me 'if you want one so badly, buy one yourself', i think saying that to someone is ridiculous<<
What a disgusting attitude they have. Right then, you tell them to hand us back the thousands of pounds in tax that we pay and we'll tootle off and buy them ourselves with the money, OUR money, that they are wasting on umpteen different things like gender reassignment surgery for example, not to mention supplying free healthcare to MILLIONS of immigrants flooding into the UK, having never paid a penny into the system, but getting everything handed to them otherwise their "Yuman Rights" are being breached! What about our rights, as taxpayers!!
If I were you, I'd get a local MP and the health Minister involved. You have EVERY right to at least be given a trial of one of these pumps and in fact, I would also lodge a formal complaint to the PCT about any clinician that told me "buy one ourself" - that, I'm afraid, is simply NOT ON.
Unless we, the people, start using the political process and channelling complaints in writing, to the PCTs and politicians, nothing is going to change. But certainly, a nurse should be told in no uncertain terms that these kind of comments are unprofessional and unacceptable.
Time for you to start making some waves, no way would I sit there and put up with this utterly sub standard treatment. Make them accountable!
>>apparently in my area of scotland the funds given for pumps has been halfed & as they cost over £1000 they choose the patients who are allocated 1 very closely, this will be even worse now funds have been cut. My diabetic nurse told me 'if you want one so badly, buy one yourself', i think saying that to someone is ridiculous<<
What a disgusting attitude they have. Right then, you tell them to hand us back the thousands of pounds in tax that we pay and we'll tootle off and buy them ourselves with the money, OUR money, that they are wasting on umpteen different things like gender reassignment surgery for example, not to mention supplying free healthcare to MILLIONS of immigrants flooding into the UK, having never paid a penny into the system, but getting everything handed to them otherwise their "Yuman Rights" are being breached! What about our rights, as taxpayers!!
If I were you, I'd get a local MP and the health Minister involved. You have EVERY right to at least be given a trial of one of these pumps and in fact, I would also lodge a formal complaint to the PCT about any clinician that told me "buy one ourself" - that, I'm afraid, is simply NOT ON.
Unless we, the people, start using the political process and channelling complaints in writing, to the PCTs and politicians, nothing is going to change. But certainly, a nurse should be told in no uncertain terms that these kind of comments are unprofessional and unacceptable.
Time for you to start making some waves, no way would I sit there and put up with this utterly sub standard treatment. Make them accountable!
thankyou very much for ur reply lucozade! i'm so glad that someone else shares my views! i thought that maybe i was over-reactingover but since posting on here everyone seems to think along the same lines as myself. i have an appointment at my diabetic clinic on april 15th & i'm definately going to take some action!! its a disgrace that just because we have good diabetic control, we're not entitled to try modern things which could be life changing! as per usual, its just because of money, its not that there isnt any better treatments out there its simply that they wont give us them! who are they to decide who should be allowed one & who shouldnt?
