Type 1 and pump

JRW

Well-Known Member
Messages
275
Type of diabetes
Type 1
Treatment type
Insulin
Hiya Tylers,

I know alot of type 1's think of a pump as having 'nirvana' with their condition, however there are pro's and cons to both methods, I like injections as it gives me control, with a pump being wired up to a machine means wearing this day and night and keeping the cannula in securely, it means training to learn how to administer and manage the pump, and a period of 'bedding in' to get the levels right. I like swimming so would have to remove then. Also where to place it, so tucked into a waist band on under bra strap etc. However I like the idea of a constant supply of QA to manage my BG and would hope it would give me greater flexibility with doing sport as I find my levels erratic during and after sport, potentially less hypos too.

I think it takes some thought to make the right decision as to what's right for you and also what you can financially afford if it's not paid for by the NHS, but there is a set of criteria to look at when being assessed by the NHS.

I would be interested to see responses from users here too as it's something I have considered doing privately also ;)

I think you're right with pros and cons, and for myself I don't want one as I hate the thought of something attached to me and the maintenance side, also i do mountain biking, snowboarding and other sports that may not be compatible. Also I like just going out with a stick of NR and some gluc tabs, and going with the flow. I'm not into detail and analytics, so would have no use for the data really.
 
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ann34+

Well-Known Member
Messages
393
Type of diabetes
Type 1
Treatment type
Pump
If your don't fit the criteria push for the quality of life aspect.

Looking at some of members here who have switched to insulin pumps over the last couple of years you will see that you don't have to have a HbA1c above 8.5 to get a pump or have impaired hypo awareness, there was a guy two years ago changed over to a pump with a HbA1c of 4.7 which seemed very unusual at the time, but he was having to inject 10-12 times a day to control his bg levels so I think he's consultant pushed for the pump stating it would improve his quality of life..... which undoubtedly it did.

i find that surprising, and wonder if there were special circumstances, other illnesses etc in his case. In 2013 only 6% of Type one adults had a pump - https://www.diabetes.org.uk/Documents/News/The_United_Kingdom_Insulin_Pump_Audit_May_2013.pdf and as far as i know the guidelines are still kept to - maybe it is a bit easier in some areas? I tried for years and found that even hypo unawareness may not be enough, as a person will be asked to first try to raise their HbA1c. Also looked at will be if the unawareness could be related to suboptimal treatment of another disease - the pump may not be given for ages or not at all - Impaired quality of life was not, at that time, considered , i wish it had been, maybe it is now.
 
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misswhiplash

Well-Known Member
Messages
210
Type of diabetes
Type 1
Treatment type
Insulin
If your don't fit the criteria push for the quality of life aspect.

Looking at some of members here who have switched to insulin pumps over the last couple of years you will see that you don't have to have a HbA1c above 8.5 to get a pump or have impaired hypo awareness, there was a guy two years ago changed over to a pump with a HbA1c of 4.7 which seemed very unusual at the time, but he was having to inject 10-12 times a day to control his bg levels so I think he's consultant pushed for the pump stating it would improve his quality of life..... which undoubtedly it did.


It might be secondary, but the quality of life thing is part of the criteria and that's the part that I think almost all T1s qualify under.
(Obviously if they didn't, they wouldn't want one anyway).
Of course, one could always manipulate hba1c up to 8.5 to qualify too, but I suspect most hcps would agree that that was a pretty stupid idea!
 

Anaelena

Well-Known Member
Messages
196
Type of diabetes
Type 1
Treatment type
Pump
It changed my life for the better . It isn't perfect but has given me so much more freedom. I lived 18 years without it and 18 years with it and the years with have been much better for me .
 

donnellysdogs

Master
Messages
13,233
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People that can't listen to other people's opinions.
People that can't say sorry.
My hba1c was under 6.0 but due to driving incident got one within weeks. Didn't even know they existed when offered one 5 years ago. Only help here persuaded me it was for me. Very few people on forum had them just 5 years ago.
 
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Gaz-M

Well-Known Member
Messages
1,108
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
baked beans
Maybe, but the NICE criteria are pretty clear and, if you fit them, you should be able to fight (if necessary) to get funding.
And, certainly as far as I could see, most T1s probably fit the criteria one way or another...

I'm prepared to believe I might have had an easier time getting my pump than some do, but it also seems that they are becoming more common all the time in the UK.

there are but it has taken over 7 years to get me one a pump, I still wont start until November. I bvelieve IF I was put on one earlier I would not have the complications I have now
 
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donnellysdogs

Master
Messages
13,233
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People that can't listen to other people's opinions.
People that can't say sorry.
Problem is, that's a battle. The last thing we need is battles, with the people who are meant to be on our side. As the saying goes, a lot of us "don't have the spoons for that". Life is hard enough. Life with diabetes is harder. Life with diabetes and an NHS which resents the cost of modern diabetes technology just sucks.

Unfortunately there are a lot of probs going on in NHS... Especially GPs at the moment.

Some GPs that are on PMS contracts and offer extra services are under considerable negotiations with NHS England and their CCGS. My GP Practice could lose £67k in funding.... Some hospitals are up to their eye balls in debt.

If this was private businesses they would all be bankrupt....

Some CCG's restrict a lot of other drugs for a wide variety of illnesses but give pumps, cgm's and tresiba and a lot of help to diabetics.. Some have less restrictions on a large variety of drugs but have less help to diabetics.

Under the FOI Act any patient can write to all their Hospitals locally and request the information on which hospitals have issued pumps, treaiba and have best results for hba1c etc....

You have the choice of hospitals to attend but the ultimate bill payers are the postcodes of where we all live....

Consultants may appear to not want to give pumps out but if the bill payers (CCGS) are restrictive on funding then their hands are tied.

Behind the scenes there are a lot of changes going on in the NHS. A lot is depending on your postcodes though...

It is so easy to get FOI on hospitals... And to find out the best ones to go to.. Anybody can ask to go to see a specific consultant at a specific hospital etc.

For example as well. I will be moving soon to a postcode with better CCG funding and hospitals...but I am very happy with my GP service and although I will be out of their boundary area-I can still stay with them.

You have to look research for yourself.. Yes, its a pain to do... But worth it....
 

Anaelena

Well-Known Member
Messages
196
Type of diabetes
Type 1
Treatment type
Pump
My hba1c was under 6.0 but due to driving incident got one within weeks. Didn't even know they existed when offered one 5 years ago. Only help here persuaded me it was for me. Very few people on forum had them just 5 years ago.

Yes , it seems like there has a been a boom in users which was great . When I started on mine they were bigger and fatter pumps :) they have gotten smaller and sleek I never saw a person who had one until about 6 years ago while in the airport and I was so excited I said ... "Hey you have a pump too " he just stared at me like I was crazy . Oh well .
 
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noblehead

Guru
Retired Moderator
Messages
23,618
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Disrespectful people
i find that surprising, and wonder if there were special circumstances, other illnesses etc in his case. In 2013 only 6% of Type one adults had a pump - https://www.diabetes.org.uk/Documents/News/The_United_Kingdom_Insulin_Pump_Audit_May_2013.pdf and as far as i know the guidelines are still kept to - maybe it is a bit easier in some areas? I tried for years and found that even hypo unawareness may not be enough, as a person will be asked to first try to raise their HbA1c. Also looked at will be if the unawareness could be related to suboptimal treatment of another disease - the pump may not be given for ages or not at all - Impaired quality of life was not, at that time, considered , i wish it had been, maybe it is now.

The criteria may well have changed but quality of life is taken into consideration now, but admittedly some clinics are more pro-pump over others.

It might be secondary, but the quality of life thing is part of the criteria and that's the part that I think almost all T1s qualify under.
(Obviously if they didn't, they wouldn't want one anyway).
Of course, one could always manipulate hba1c up to 8.5 to qualify too, but I suspect most hcps would agree that that was a pretty stupid idea!

Yes it is part of the criteria, pre-pump I had to fill out a quality of life questionnaire for my consultant where it asked how diabetes effects your daily life, I believe this is used in part when the consultant puts your case forward for pump funding, I was told I may have to fill this questionnaire out again at some point to see if there's been any noticeable improvements.
 

frenchlady

Member
Messages
22
Type of diabetes
Type 1
Has any one got a pump??? And if so what make and model thinking of buying one private, any answers most appreciated xx
I have had diabetes type 1 for 40 years. I applied when pumps first came out and was refused because of the cost. However, over the years, I have applied and been refused for various reasons. My HbA1c is usually about 9 and my levels are erratic. I kept a log of exactly how much carbs I had - How much insulin - both Humalog and Levemir, where I injected on my body (I was having a lot of pooling) and my readings both before and two hours after meals. This proved that, despite me doing everything right, I was still not getting good readings. I also have heart failure and so my weight is the same every single day, down to the ounce. So, I was not over or under eating. I got a new consultant and he suggested a pump right away. I have to go on a DAFNE course (which I have been doing since I was first diagnosed) to prove that I am committed to getting my readings under control (as if 40 years wasn't enough!!). Unfortunately, since I have had mostly high readings over the years, I do have all the complications associated with it. Which I would have thought was reason enough to put me on the pump!! I have retinopathy, neuropahy, nephropathy, gastroparesis, heart disease and failure. It may be too late for me on that score but at least I will be better controlled - I hope!! Everyone should have the opportunity to have a pump, if only to help stem the flow of complications due to diabetes, which must cost the NHS much more in the long run!
 
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RuthW

Well-Known Member
Messages
1,158
Type of diabetes
Type 1
Treatment type
Pump
I bought mine. I live in Turkey. I paid 5000 Turkish lira (approx. £1500) for it. I pay about 450 lira ( or a bit less) every three months for consumables. I actually could claim most of that back on the Turkish health system, but so far haven't tried. Insulin costs about 80 lira a month.

All of which kind of raises the questions for me: why do pharmaceutical companies get away with charging the NHS so much? Do Turkish health system managers have superior bargaining skills?

(Approx. 3.5 lira to the pound right now).
 
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Anaelena

Well-Known Member
Messages
196
Type of diabetes
Type 1
Treatment type
Pump
I bought mine. I live in Turkey. I paid 5000 Turkish lira (approx. £1500) for it. I pay about 450 lira ( or a bit less) every three months for consumables. I actually could claim most of that back on the Turkish health system, but so far haven't tried. Insulin costs about 80 lira a month.

All of which kind of raises the questions for me: why do pharmaceutical companies get away with charging the NHS so much? Do Turkish health system managers have superior bargaining skills?

(Approx. 3.5 lira to the pound right now).

I love the healthcare in turkey . They have a great Medtronic office there and compared to the prices in USA it is so so much cheaper . I also had 3 hand surgeries there and the cost for me was a quarter of what I would pay here . They are also so efficient. My eye dr there was able to examine me , do an angio and laser in one day . Amazing !