Pump dilemma

submarinerLV

Active Member
Messages
27
Hi Guys.

Well to cut a long story short, I first went on the Accu-Chek combo in 2011. I love the pump and was told that in 4 years time I would get an upgrade to whatever new pump is on the market. That happens to be the new Accu-Chek Insight. They have been writing and emailing for a little while now saying that I am due an upgrade. So yesterday I made the phone call and the gentleman I spoke to at Roche said that my upgrade for a new pump was due "no later than june 2015". He went onto explain that's when my warranty runs out on the Spirit Combo pump and therefore if a serious problem developed after then that caused the pump to no longer work then they could not replace it with a brand new one as it would be out of warranty, hence ordering a new pump, and that being the new Insight pump. That all made sense to me so I contacted the Diabetes department where I am seen and the diabetic nurse that I spoke to told me that the policy on pump replacements had since changed and for a pump like the Spirit Combo it was now a case of letting it basically continue working until it no longer worked. My reaction was one of utter disbelief because it's essentially playing russian roulette with somebody's life and is a dangerous precedent to set. It appears that the CCG who make all of the purchasing decisions is behind this change in approach and both the gentleman at Roche and the diabetic nurse at Northampton I spoke to yesterday agreed that it was crazy to have this strategy in place. It appears that Northamptonshire is one of the few that have chosen to do it this way, whereas the rest of the country is on board for replacing pumps for the latest ones after that 4 year period. I am going to write to the CCG in Northamptonshire, because it greatly disturbs me that such a thing can be in place. I've had the scary scenario played out where my pump stopped working over 2 years ago, and it's very unsettling. To think that I could have a repeat process that is inflicted by a monetary decision is scandalous.

Can anyone offer me some further insight or advice please as to whether they have faced similar challenges.

Many Thanks
 

novorapidboi26

Well-Known Member
Messages
2,828
Type of diabetes
Type 1
Treatment type
Pump
I would do as you say, get writing in to these folk and get them to just get you a new pump.........

As a pumper you should always be prepared for malfunctions and have insulin injections at the ready........so if you are unsuccessful you always have that as something to fall back on.....

I have been on my pump only 2 years so I don't know what the protocol is where I am in Scotland, hopefully and upgrades will happen smoothly......

I hope you get good news, keep fighting........
 

submarinerLV

Active Member
Messages
27
Unfortunately when my pump decided to break down completely it was the day I moved house so at the time locating insulin pen injections proved to be impossible. That then took me to Northampton hospital where they had no measures in place whatsoever to provide me with a new pen injection as the cupboard was locked lol.

I will be writing the CCG because the reality is I will be getting a new pump. It's just sheer lunacy that they would only deem this action to take place once my current pump packs in and like the guy at Roche said to me yesterday the whole process going back and forth until and order eventually comes over for new pumps from the hospital is long & drawn out. So really it is in their interests to avoid any situations where this could well happen.

For me, I just cannot get on with injection therapy. Background insulin through injections leads to my levels being absolutely all over the place because the insulin acts unpredictability whereas as we all know from being on the pump, once mastered, the control can be so tightly maintained through the exact does of insulin regardless.
 
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Alzibiff

Well-Known Member
Messages
76
Type of diabetes
Type 1
Treatment type
Pump
Exactly the same thing happened to me a couple of years ago when I found out eight months or so before the warranty on my first pump ran out that "policy has changed". In my case, I was looking for both a replacement pump at the end of the warranty period AND a decent choice of replacement and although I managed to make progress on the first issue, it took a further 9 months to resolve the second. (I am now a happy bunny!).

After a lot of letter writing and conversations with folk in my NHS trust, I got the impression that the policy change was down to the medical directorate - doctors in the diabetes consultancy hierarchy - rather than what became the CCG, no doubt because of budgetary challenges laid down by the latter.

I would be careful not to get too emotionally charged in any letters and simply present the facts. Specifically, I would avoid phrases like "...it's essentially playing russian roulette with somebody's life" as the comeback is simple: "No it isn't, you are provided with backup supplies of long acting and short acting insulin which can be used during the time it takes to obtain a replacement pump".

If you were told that you would get a replacement after the warranty ran out, say so and make the point that this was one of the reasons you accepted the switch to an insulin pump.

Let me know via a PM if you wish to discuss this with me - always happy to talk on the telephone, when convenient, if it helps.

Alan
 

submarinerLV

Active Member
Messages
27
Good points raised there Alan & yes a lot of my frustration is emotionally charged as a direct reaction but I will reign it in for my letter as one of my key decisions for moving over to the pump in the first place was based on the understanding that once a pumps 4 year warranty had expired it was then time for the newest that was available to them in the market at the time.

The very thought of entertaining injection therapy again leaves me cold because the evidence is there over many years that I do not get on with it. The pump changed everything for me.

I guess my first point of call is to write the letter & see what they come back with.

Thank you for your help & advice.

Much appreciated.
 

MushyPeaBrain

Well-Known Member
Messages
647
Type of diabetes
Type 1
Treatment type
Pump
My diabetic team told me I had to get my new pump choice ready before old one ended after 4 years even though I wanted more time to decide. The reason they gave was that once out of warranty the pump manufacturer was no longer obliged to provide any support including during pump breakdown. Worth pointing this out in your argument.
 

donnellysdogs

Master
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13,233
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I warned of this a while back..late November. As my pump was due for an upgrade. Fortunately I got my Insight but this was down to my consultant and dsn at my hospital.

I too live in Northampton but come under Nene CCG.

It appears that there are a lot of CCG's that are adopting this policy. Unfortunately the CCG's aren't informing the patients.. Only the hospitals and unless you are due for a renewal then you are unlikely to find out the CCG policies.

That is why it is so hugely important to have a back up supply of your back up injections and insulin.
 

Spiker

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Messages
4,685
Type of diabetes
Type 1
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It's not an uncommon policy and the financial reasons are understandable. A pump is expensive and they are simply adopting the "don't fix it if it's not broke" policy. Your pump failing is not going to kill you. It's an inconvenience and a disruption admittedly.

Put it this way. Every year that you continue with your not brand new, but working, pump is another year that someone else gets a pump who otherwise wouldn't have one at all.

We don't have any entitlement to the newest kit just because we like the look of it. Your CCG may well be supporting more pumpers, by being careful and avoiding unnecessary expense.
 

donnellysdogs

Master
Messages
13,233
Type of diabetes
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People that can't listen to other people's opinions.
People that can't say sorry.
Your CCG may well be supporting more pumpers, by being careful and avoiding unnecessary expense.

Wish that was true, but it isn't! A CCG down the road give all their children options for pumps. Just 25 miles down the road thats all....and our CCG only have a commitment of all newly diagnosed children under 12 can have the option of a pump....

Unfortunately some CCG's and hospitals in our area are not widely funding more people on pumps because they aren't funding upgrades. They just have a total misunderstanding of the benefits of pumps, fullstop.

25 miles down the road and its a different story.
 

Spiker

Well-Known Member
Messages
4,685
Type of diabetes
Type 1
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Postcode lottery. That definitely sucks. :-(

I was being slightly facetious in suggesting that the CCG's stingey attitude to pump replacement might support having more pumps available. It might, yeah, but more likely it's just a cost saving measure. :-(