Trouble getting a pump

[Natleenard]

I have been diabetic for 12 years and it appears that I make insulin from time to time. Making management difficult at times. I am desperate for a pump to be fitted but my diabetes team are not forthcoming with it. Has anyone else found this and do you have any advice?

 

[Lucie75]

I fought for 5 years to get my pump. The long and short of it is that you need to meet the specific NICE critieria before the NHS can get funding for it so please google it. Despite meeting the criteria I then had to present my case to a panel before being approved, but as long as you are eligible it is possible. Good luck!

 

[Keith300-01]

I've done it all + been on dafne course got the letter been to see the pump doc back in November and was told they will contact me at the start of the year for getting a pump fitted so far I'm still waiting should I give them a email to remind them or just cross my fingers its been a long long road to get this far 4+ years but been diabetic 30 years this year and still remember having to pay for syringes glad the nhs is better now just keep asking and pushing as the better control you have now will give you a better life in years to come ! If I could wind back to my rebel years and be good I would !


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[Dane]

Have you researched the pumps available? I compared the available pumps, then once I decided on the most beneficial pump for me, I contacted the manufacturer, and the company nurse/rep helped speed things along for me. I suppose it does help on the support offered by your diabetes team; the team in my hospital are great and are doing a big push to get their patients on to pumps.

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[Jkm2010]

I have been diabetic for 3 years and have been on a pump for 2. I had to do the dafne course before being able to qualify in derbyshire, but I was very OCD and made sure I made regular appointments with my nurse and consultant. As far as I'm aware everyone is who is type 1 is allowed a pump as long as you make a good case for it. I'd suggest pushing your consultant rather than nurse.




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[emily.harrison.13579]

I'm currently on the pump now. I have the Medtronic pump. I prefer it to having to inject all of the time but like everything it does come with its downsides. I have to change what's called a 'cannula' every 3 days and when I go swimming, depending on where it is, you had see where the lo was inserted. And for me, being really self conscious, I don't like it! I'm not putting you off of the pump, I'm just saying think of all the advantages and disadvantages before you go ahead.


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[phoenix]

Have a look at the Input site, lots of info about pumps and how to access a pump in the UK.
If your clinic is not pro pump it may be possible to change care to another hospital. I have read of others doing this (and input may be able to help there as well)
http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/

 

[Omnipod]

I agree with Phoenix. You clinic needs to be pro pump and it means that staff need to be trained up by the different companies such as Ypsomed for omnipod, Medtronic, Accucheck.....
This is why some clinics will or will not offer various types of pump. You need to decide which type of pump works best for you. Then call the supplier and ask them which clinics they work with in your area.Read up the NICE guidelines.... Perhaps change clinics and put your case forward to your CCG. It is a struggle and a post code lottery too. It took me about a year to get my Omnipod patch pump. Chelsea and Westminster or St Mary's in London are very pro pump. Kings College are pro pump but with tubed pumps. Unfortunately, you have to do your home work and then perhaps be willing to change clinic. I had to do this. I changed from Kings to Chelsea Westminster.

 

[leahkian]

Hi I have been on the medtronic pump for three years and found it to be a good move. Like most people who have a pump it did take me about three years to be accepted for it. The main problem was the cost of the pump to the local NHS and that there was not enough trained staff to show how the pump works .I would ask the DSN what are the options but there are pro's and con's so look into it first

 

[ciaramoh]

I've been on a Medtronic pump for 8 out of the 15 years I've had diabetes. I've found it brilliant but it comes with a lot of hard work and for the first year it is exhausting so from what I've read it comes down to two things if you get a pump:
1. If the pump is right for you. If your diabetic team think you're not right for a pump then you won't get one as they're expensive and honestly not for everyone. My friend is also diabetic and a pump just wouldn't fit into her lifestyle.
2. Money. Unfortunately they're expensive and it depends on where you live and the money your team has to if you get one.




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[Engineer88]

I had my clinic trained to use animas as I was the first person in Northampton to request one.

Not bothered about wires but I wanted the built in food diary and CGM


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[Rubyloo]

Hi All,

I was put on the waiting list for a Pump yesterday after a terrible struggle with my Type1 for the last 9 years! I amextremley Food & Insulin sensitive! I take very small amounts of insulin & suffer Hypos every day! I feel like I live in an Open prison with No parole as my Dabetes dispupts my every waking hour & those while I sleep! I more than fill the Criteria but then came the huge blow!!! Only 12 Pumps this year for a masive area! I live in Kent & the area covers Ashford/Thanet/Folkstone/Canterbury.....the list goes on! When asked how long a wait I should expect I am told that there is NO such timescale.... They have NO idea Howlong it will be or if there will be funds! So angry & Frustrated! It seems its a postcode lottery! I feel I have won theLottery & Lost the ticket! :-( :-(

Debs x

 

[leahkian]

Hi All,

I was put on the waiting list for a Pump yesterday after a terrible struggle with my Type1 for the last 9 years! I amextremley Food & Insulin sensitive! I take very small amounts of insulin & suffer Hypos every day! I feel like I live in an Open prison with No parole as my Dabetes dispupts my every waking hour & those while I sleep! I more than fill the Criteria but then came the huge blow!!! Only 12 Pumps this year for a masive area! I live in Kent & the area covers Ashford/Thanet/Folkstone/Canterbury.....the list goes on! When asked how long a wait I should expect I am told that there is NO such timescale.... They have NO idea Howlong it will be or if there will be funds! So angry & Frustrated! It seems its a postcode lottery! I feel I have won theLottery & Lost the ticket! :-( :-(

Debs x

If I was you I would contact PALS and ask them to help or may be contact the local health authority and complain about it. Ask your local GP to write a letter of support to you. You could also try another hospital and see if they have a better pump program

 

[Engineer88]

Also contact input. They advocate on behalf of diabetics for pump access


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[alohanicky2009]

I have been trying for a pump, fulfill NICE guidelines the last 6 years, but last consultant felt my diabetes is to bad to have a. Pump, I have moved to a new hospital with a good feedback on pump therapy, but have had to go on DAFNE course then will see me in 6 months to see how I am , the road to a pump for better control seems a very almost impossible road , but this not so for many diabetics , seems a lot of luck,


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[Julie1471]

Rubyloo, you come under my area 0.01% on pumps. Oh what fun our area is(not) I was sent to Ashford as it is our local pumping area, had all sorts from Dr Williams, like every other consult/Dr except Dr Joesph at the QEQM hospital Margate. Got all sorts from Williams on my last app with him, got lack of funding, said that's a lie already spoke to those that fund pumps, then he said no trained nurses, I said that's a lie 2 more on line when I finished my Kat1e course at Ashford. He then went do you want to be transferred to Kings me & hubby looked at each other and we both went yes please, the look on his face was a picture. 1st appt Kings got told I needed a pump, the next month I get to choose one and the same month I'm using saliane a week later I'm using insulin. And I've not looked back. Pm me if you want to chat.

 

[Dane]

I'm from South West Wales, and can't answer for other areas, but when I met with my DSN roughly 2 months ago, she advised that as insulin pumpers are in the minority, that they are pushing to get patients onto pumps. I was given a follow up appointment (1 month later), and during this time I did alot of research on the type of pumps available, and contacted these companies directly for advice and to see if they could support my application for a pump. I found a company (CELLNOVO) who's pump seemed perfect, and mentioned this to my nurse in my follow up appointment. She found that the company were running a trial in the area ending the following week, and managed to secure me a pump. Today I had the pump fitted; on saline over the weekend, moving onto insulin from Monday. I was amazed by the turnaround time (less than 2 months). I guess it's a matter of right place, right time, as I've heard the horror stories patients have had in securing a pump. I would highly recommend contacting Cellnovo for information, great customer service, amazing pump, and who knows, maybe they will be trialing the pump in other areas very soon.

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[Keith300-01]

Just looked at my emails and today I have been given dates to start on a pump its a few month away but something to look forward to need to put in a bit of work before I get it then the hard work begins but I have a twin on the pump for the last 5 years so might go and live with him for a few weeks when I get it and get advice from him ! happy days


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[Julie1471]

Good luck Keith.

 

[ElyDave]

I'm from South West Wales, and can't answer for other areas, but when I met with my DSN roughly 2 months ago, she advised that as insulin pumpers are in the minority, that they are pushing to get patients onto pumps. I was given a follow up appointment (1 month later), and during this time I did alot of research on the type of pumps available, and contacted these companies directly for advice and to see if they could support my application for a pump. I found a company (CELLNOVO) who's pump seemed perfect, and mentioned this to my nurse in my follow up appointment. She found that the company were running a trial in the area ending the following week, and managed to secure me a pump. Today I had the pump fitted; on saline over the weekend, moving onto insulin from Monday. I was amazed by the turnaround time (less than 2 months). I guess it's a matter of right place, right time, as I've heard the horror stories patients have had in securing a pump. I would highly recommend contacting Cellnovo for information, great customer service, amazing pump, and who knows, maybe they will be trialing the pump in other areas very soon.

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The CellNovo people do seem to be very responsive, perhaps becasue they're new to the market. I called them in the week to talk about their pumps and had a call back the next day, unfortunately I had a conference call to attend, so couldn't talk to them as long as I wanted, but they seemed very keen to talk to me.

I do have a few more follow up questions though to follow up over the next few weeks or so.