Author Topic: Why should we subjected to a postcode lottery to receive the right pump?!?!  (Read 172 times)

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Offline Gabbi

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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 all 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 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.
 :banghead:

Offline sedge

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Hiya

Sorry to hear your tale of woe.

However - there are two things I initially want to say - the first is, why on earth did you not have alternate means of treating your diabetes with you?  That one is essential whatever pump we use cos sheet happens occasionally - I'd know I was far too high, ages before I was that high I went into DKA - and there's always an A&E somewhere even if it isn't exactly easy to find out where if not possible to sort yourself - but you landed up there anyway and alive to tell the tale.  Secondly - whilst some prefer 'patch' pumps - they are never absolutely essential, surely?  Like diabetes itself, it's a matter of adjusting to however the D is being treated.

All CCGs have to balance the books, hence they strike deals with whoever.  We know this from them issuing decrees about their local diabetics only being able to use this or that meter from which one presumes they have struck a good deal on strips.

Pumps and their consumables cost an absolute fortune in comparison to MDI and we wouldn't consider the NHS was spending what little dosh it has, correctly, if they didn't do it.

Have you 'Yellow Carded' your pump??
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Pattidevans

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  • It's ONLY Diabetes. It could be something worse!
Hi Gabbi and welcome to the forum.

I'm also sorry to hear of your pump failure on holiday, my worst nightmare, which is why I always cart insulin pens, needles and cartridges with me on holiday, though in 4 years I've thankfully never had to use them, but it would be sod's law that if I didn't take them I'd need them.

My clinic don't support/fund any patch pumps at all, so I can't have one, but I am very grateful that they have forked out for a pump for me.  The way the system works here (and presumably elsewhere too) is that the hospital invites tenders for the pumps to be supplied and chooses the most cost effective ones.  I do get a choice, in November I will be offered an Animas Vibe or a Medtronic, I'm not that keen on either really, would prefer another AccuChek Combo... but on the whole I'm just grateful to have a pump.

Agree with you though that they should not be supplying dangerous pumps... as Sedge says, yellow card the pump.  If enough people do it then it will most likely be withdrawn.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Pattidevans

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  • Posts: 23,532
  • It's ONLY Diabetes. It could be something worse!
Oh... you might want to talk to INPUT and see what they say.  http://www.inputdiabetes.org.uk/
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline himtoo

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  • Prince of Protein
hi Gabbi
welcome to the forum !!

agree with all you say regarding the funding issues and the postcode lottery ...........but also do think you should always carry back up with you on holiday

I just got back from Italy -- took 5 pods for an 8 day holiday along with a lantus pen ( and a spare cartridge and a novorapid pen along with 2 spare cartridges ) and a back up PDM and a back up BG meter -- along with wearing a freestyle libre

( the old saying -- you can never be too prepared )
T1 Dia Aug 1972 -pumping omnipod since 29/09/15  Losartan 100mg , simvastatin 40mg,Furosemide 40mg, Omeprazole 80mg , Doxazosin 8mg
Hba1c - 06/2013 6.1 02/2014 43(6.1) 07/14 42(6.0) 08/14 40( 5.8 ) 12/14 39 (5.7) 08/15 41 ( 5.9) 10/15 44 ( 6.2 ) 03/16 49 (6.6)
cholesterol --nov 2011 4.3 june 2012 4.4 June 2013 4.1 Feb 2014 4.1 dec 14 4.5 oct 15 4.4
Dafne grad. necrobiosis lipoidica on legs
laser treatment on both eyes 2002 and 2012, injections left eye 3 , wearing Noctura mask since oct 2014

Offline sedge

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Yup - golden rule for holidays for anyone anywhere taking medication - take twice as much medication. peripherals etc as you think you'll need.

That way I've found I'm 99.9% guaranteed not to need any of it.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4