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Why should we subjected to a postcode lottery to receive the right pump?!?!

J

JCW2011

Member
Messages
6
I was on the Omnipod for four years and it was faultless. Unfortunately my borough doesn't support it so I was forced to choose another patch pump being the Cellnovo (the only other patch pump currently available in the UK). I had issues with it from the start and on a daily basis!.....and lets not talk about all the additional paraphernalia required for this ineffective pump! The final straw was day two of my holiday in Sept....the pump stopped and I went into DKA!!!!! It's unforgiveable that the NHS is supplying dangerous pumps. The feedback for the Cellnovo on diabetic the social media sites, is appalling! So why is the NHS funding it and failing us? The cost to fund an Omnipod is marginally more but the long term prevention of Diabetic complications will save the NHS significant amounts of money. The NHS is not fulfilling its responsibilities but more importantly, following the guidelines of the NHS Constitution:

The NHS belongs to the people.
It is there to improve our health and wellbeing, supporting us to keep
mentally and physically well, to get better when we are ill and, when
we cannot fully recover, to stay as well as we can to the end of our
lives....Part of the NHS's commitment to us as patients:
You have the right to receive care
and treatment that is appropriate to
you, meets your needs and reflects
your preferences.
You have the right to make choices
about the services commissioned by
NHS bodies and to information to
support these choices. The options
available to you will develop over
time and depend on your individual
needs.

I find it unacceptable that my/our longevity of health is being dictated to by local CCG's that cannot/will not look at an individual's circumstances and provide suitable pumps that are not dangerous!

I am looking to establish if there are other diabetics out there who are frustrated with how the funding is disproportionately managed for these (Omnipod) life-saving pumps. It appears that only select boroughs provide a pump that should be available to all Type 1 Diabetics!

The point is, everyone is different but we should have a right to choose!!!

If anyone is willing to join the campaign please let me know
 
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Sorry to read you have had some trouble with your Cellnovo.

I was given the right to choose: my choice was Animas Vibe or MDI. My local hospital/CCG decided to only offer one pump so their diabetes staff have to train in only one pump. There may be purchasing discounts available too.
If Omnipod was available for me, I may have considered it. But as it was not, I got the Animas and am grateful the NHS is funding my pump.
Sure, the postcode lottery is rubbish - as my Hb1AC is good, other CCGs may not have given me a pump at all.

Having a right to choose is different to having a right to an unlimited choice and while ever CCG manages their own budget they will choose different ways to do so.
 
If you don't like the NHS what about moving to the USA when you then get a free choice of health care providers.....
 
I think you've misunderstood my post...the NHS is funding dangerous pumps whilst overlooking pumps that work. Plus as a diabetic that doesn't sit around being dormant I am a very active diabetic and wired pumps aren't suitable for the activities I participate in. So what you're implying is, diabetics like myself should be overlooked....
 
I am afraid it isn't just diabetics who are subjected to the postcode lottery. There's all sorts of anomalies with funding over the whole health sector. Of course no-one should be overlooked, but having said that the NHS is struggling to cope with all the demands on it. Some T1s don't even have pumps at all. If yours is dangerous then obviously you shouldn't be using it, I hope you have stressed this point to your consultant.
 
But that's the whole point the NHS needs a complete overhall. Most people probably aren't aware that once a patient goes onto a pump, even if they don't stay on the pump, the manufacturer still gets paid for that patient's pump for four years! So the funding is a complete waste of the NHS's money.
 
Surely if the pump provider has a 4 year contract with the NHS they have to supply what they said they would (a safe working pump)? Of course the NHS would have a clause in their contract for the situation you provide.................... I'm not helping am I!
 
Is it really a problem with the CCG paying for omnipod? Or is it an issue with the hospital supporting omnipod? My understanding is that if you can't get the pump you want at one hospital, you find a hospital that does support it and get referred there and you can get it that way, although it wil still be the CCG being invoiced.

Maybe query this with input diabetes to be sure of exactly how it works - www.inputdiabetes.org.uk

Pump manufacturers don't get paid for four years. If it is a tubed pump then there is one one off outlay ant the pump is purchased and comes with a warranty that lasts four years. So there is no ongoing cost, that's just how much a pump costs and the pump manufacturer guarantees the pump for four years. If it is a patch less pump there is a similar warranty with the PDM/remote, but this is of lower cost because there is an ongoing cost in purchasing the patches. Obviously if you stop using the pump the NHS doesn't keep buying patches that aren't going to get used.
 
I read that supplies for the pumps cost between £1000-£2000 per year. Maybe the NHS wastes less by giving you a pump that's cheaper to run?

I once needed an extra blood (thickness) test before an op. If I didn't have one then the op would be cancelled. My surgery refused to give me one saying that a weekly one was enough. The test strips cost £2 each. I ended up buying my own tester (£300) and a tub of strips (£50) from Amazon so that I could have my op. I still prefer this system to the one in the USA though.
 
Absolutely not. I think it is terrible that you are using a pump which you have found to be dangerous.
I am saying the solution is not simple and there are reasons why decisions have been made.

By the way, I too am a very active diabetic: I am a climber, a mountain biker, a swimmer, a regular diy-er, I often have to eat in meetings so have to take my pump out in public, I travel regularly, ... yet, I have found ways to keep my wired pump under control.
 
I've never had a choice due to the quantity of insulin needed, hence the bigger reservoir......

A blessing in disguise really....
 
First off...

Pumps are not life savers (speaking as someone that used one brilliantly from 2010 for 5 years until my skin rejected cannulas).
They are a new gadget that can help people. They are not life savers.

You concentrate on necessity of choice of pumps... well, other decisions for other illnesses vary by CCG. I pay £110 a month for lidocaine patches for my chest after radiotherapy damage) that other ladies get free. I have a funded CGM though that others can't get. I had to fight 18 months and 3 hospitals to get my 2nd "healthy" breast removed. Other ladies don't AND it turned out it wasnt healthy.

Have you and all the persons moaning about cellnovo actually reported EVERY failure detail to MHRA/Gov.UK website?? 99% of patients do not report failures... are you any different? If people reported failures corectly the NHS and Companys would have to review their products. They dont go on the word of one person.

I had cannula failures on my first pump and immediately reported to MHRA. Most people on thiis website didnt. Some didnt believe the cannulas were faulty.
They were withdrawn by Accuchek worldwide though.

If everry person reported failures correctly then the Manufacturer would have to provide answrs and withdrawals if necessary...
 
You are lucky that you get a choice of a sort nowadays.
My first pump was Accuchek combo, take it or leave it as the hospital had bought 30 of them.
Even my last pump had to be medtronic because I had moved and nurses were only trained in medtronic..

I think you have to accept that patients need to report problems via correct MHRA routes, that a pump isnt defined as being a life saver (wheras a kidney dalysis machine is). The NHS does its best.
 
I have had my omnipod for three months now, and love it, gym, out on the Harley Davidson with our chapter, no more stripping of my leathers just to inject, standing in my underwear when taking leathers off, or jacket and cut, such a pain, but now I am concerned if I am reading this right I will only have my pod for four years only then all change, that's **** if it's true just saying
 
not true at all -- if you are still being treated by the same hospital at the 4 year timeframe -- they will most likely still support omnipod -- if you are concerned -- discuss it with your DSN sooner rather than later
 
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