NHS Pump Queries

[Kev68]

Hi all, first post here.

Diagnosed Type 1 in Jan '86, I am on mdi - novorapid and levemir.

My Hba1c is usually quite good but I have lots of highs and lows. I have food intolerances (dairy, gluten, yeast, egg are the main culprits) caused by candida overgrowth in my stomach - and struggle to keep to a steady diet. When I binge on sugar I always take the appropriate amount of insulin as I religiously count carbs (1:1 ratio) but find I end up on a bit of a rollercoaster as chocolate etc seems to absorb very slowly (I go low then high hours later).

I am considering asking for a pump via the NHS - I feel I would be a good candidate. I have a few questions:

• What brands of pump are available on the NHS?
• Anyone know what the waiting time for a pump is in Whipps Cross Hospital London?
• Any experiences from people who have been on mdi for a long time and then switched to pump?

Many thanks,

Kev

 

[masonbason63]

Hi Kev68,
Yes good old Whipps Cross I was under them for 46 years not all diabetes related they got me onto a pump in 1999, it was Dr Levi and his team,

Since then I've never looked back best thing that's happened to my diabetes, I've not been hospitalised since pumping with anything diabetes related.

I'm now on the Accu-Chek insight pump it's good but the handsets flipping very slow, there's a good selection of pumps available but I think you'll find that out with other users on this site. I'm a die hard accuchek person.

 

[CarbsRok]

Hi all, first post here.

Diagnosed Type 1 in Jan '86, I am on mdi - novorapid and levemir.

My Hba1c is usually quite good but I have lots of highs and lows. I have food intolerances (dairy, gluten, yeast, egg are the main culprits) caused by candida overgrowth in my stomach - and struggle to keep to a steady diet. When I binge on sugar I always take the appropriate amount of insulin as I religiously count carbs (1:1 ratio) but find I end up on a bit of a rollercoaster as chocolate etc seems to absorb very slowly (I go low then high hours later).

I am considering asking for a pump via the NHS - I feel I would be a good candidate. I have a few questions:

• What brands of pump are available on the NHS?
• Anyone know what the waiting time for a pump is in Whipps Cross Hospital London?
• Any experiences from people who have been on mdi for a long time and then switched to pump?

Many thanks,

Kev

Here you go all questions answered http://www.inputdiabetes.org.uk/

Daft question I know but if you are dairy intolerant why are you eating chocolate.

I injected for 43 years before I went on a pump and took to it like a duck to water

 

[Kev68]

Here you go all questions answered http://www.inputdiabetes.org.uk/

Daft question I know but if you are dairy intolerant why are you eating chocolate.

I injected for 43 years before I went on a pump and took to it like a duck to water

Because I'm a very naughty boy! lol

Seriously tho, I have severe sugar cravings because of the candida and also low serotonin levels. I can go months without eating anything with refined sugar and then something happens and I fall off the wagon and go crazy for a week or two.

I know that a pump won't necessarily help me with this but anything to improve my overall control and get off the rollercoaster.

Thanks for the link

 

[Kev68]

Hi Kev68,
Yes good old Whipps Cross I was under them for 46 years not all diabetes related they got me onto a pump in 1999, it was Dr Levi and his team,

Since then I've never looked back best thing that's happened to my diabetes, I've not been hospitalised since pumping with anything diabetes related.

I'm now on the Accu-Chek insight pump it's good but the handsets flipping very slow, there's a good selection of pumps available but I think you'll find that out with other users on this site. I'm a die hard accuchek person.

I use accuchek mobile for blood testing and love it - compared to test strips, it makes such a difference. I'll check out that pump now, thanks for the info!

 

[Heathero]

I use the Omnipod supposedly easier than some, have just started following trial, sticks to body hand set Bluetooth so control input via handset . Can swim shower with it on too.

 

[Kev68]

I use the Omnipod supposedly easier than some, have just started following trial, sticks to body hand set Bluetooth so control input via handset . Can swim shower with it on too.

Thanks Heather - did you have to wait long after you first discussed it with your specialist?

 

[Heathero]

About 3 months in total had trial with water first helped me to familiarise myself with it.

 

[Kev68]

I have finally started the process to get a pump. It doesn't seem straightforward at all. So far the process has been:

1) Oct 6th - See Endo and advise him I want a pump. He tells me I need to see a different Endo as he "doesn't do that"! Diabetes nurse tells me I also need to see a dietician before process can start.

2) Oct 12th - See dietician and she agrees I am a good candidate for the pump and will advise Endo that she thinks I should get one.

3) Oct 16th - See new Endo and he says I need to get a CGMS fitted for a week.

4) Nov 4th - CGMS is fitted.

5) Nov 11th - CGMS will be removed and analysed.

I'm wondering if anyone can advise what the next steps are in this process? Getting clear info from the diabetes team is like getting blood out of a stone. I know it can take quite some time but all I've got regarding a timeline is a very vague response stating 6 to 12 months. Can my request for a pump be rejected and if so on what grounds?

I almost get the feeling that they're not keen on this at all - whether that is a) solely because of cost b) because they don't think I'm a good candidate or c) they don't want the hassle or perhaps a combination of these, I really don't know.

I'm the sort of person who likes to know the next steps and how we intend to get from A to Z. If I know this then I can make sure that each step is being followed up and its progressing. It's very frustrating - a simple leaflet with each of the steps on it, would really help and wouldn't take long to do. At this moment I'm biting my tongue a bit with them because I'm thinking I need to keep them onside.

I should point out that I'm T1 for 30 years and my Hba1c is very good (44) but I get a LOT of highs and lows. I test regularly and did the DAFNE course a few years ago and I count carbs.

 

[masonbason63]

Hi kev68

When I was put on a pump at Whipps, there wasn't many of us. The process was fairly quick. This was in 1999, the numbers did drop and every time I ordered supplies I was reminded that the funding might not be available

It was early days of pump usage at the hospital and I would like to think it's progressed into more, as its a training university hospital. The hospital done wonders over the 40+ years I was under it.

You can be rejected for a pump but if so there are things you can do and people you can contact, but you seem to be ticking all the boxes and it does take time.

Be patient my friend

 

[Mrsass]

Hi Kev, hope they speed up the process for you a bit!

it amazes me how different hospitals do the whole pump process differently, for me it was just mentioning it at my clinic appt, week later getting a 2 week trial one, by the time my trial finished my own one had been delivered & I was good to go. So less than a month in total for me.

I've never looked back, was on MDI for 24 years and my pump is just the best thing ever in my opinion.

Hope you are sorted soon!

 

[himtoo]

Hi @Kev68
your list of dates looks a lot like my process to get a pump but mine took 13 months in total -- yours appears to be speeding past like a japanese bullet train on steroids ( non BG raising type ) in comparison to me -- LOL

 

[iHs]

@Kev68

The purpose of the cgm is to find out what your bg levels are doing in the day but most importantly, the night time cgm data will tell the pump team what happens to your bg while you are asleep so that when you get a pump, the dsn will have a guide as to what your overnight basal rates will need to be. The cgm is only a rough guide though so cant be relied upon to be completely accurate.

Good luck with a pump, they are life changing thats for sure and you will need to give diabetes a lot of your attention

 

[Gaz-M]

I had the cgm fitted in june I think, meeting with the consutant in July I have one on the 23rd of this month to see if I get funded and if so start on the 7th of December, so around 6 month here

 

[Nicola M]

I had to have a CGMS for a week, mine was done this February, I went though the results with my DSN in March. I was then put onto the DAFNE course in April about a week after that I had a letter to say funding had been approved. I started on the pump officially on the 1st of July. The first ever mention of a pump for me was in December of 2014 so from first mention to actually getting the pump was around 6 months.

 

[Kev68]

Thanks everyone for you very helpful replies

So 6 months for Nicola and Gaz, 13 months for himtoo and less than a month for Mrsass - that is quite a difference, admittedly for a tiny sample group but still I just don't get how the same process can take much longer in certain areas.

I'm hoping that I come in around the average which is 6 months.

 

[himtoo]

Thanks everyone for you very helpful replies

So 6 months for Nicola and Gaz, 13 months for himtoo and less than a month for Mrsass - that is quite a difference, admittedly for a tiny sample group but still I just don't get how the same process can take much longer in certain areas.

I'm hoping that I come in around the average which is 6 months.

if it is any help my DSN actually told me they limit new pumpers to 1 per month so that in itself creates a queue

 

[IceLover]

if it is any help my DSN actually told me they limit new pumpers to 1 per month so that in itself creates a queue

what do you mean by new pumpers? do you mean hospitals who just started giving pumps?

 

[himtoo]

what do you mean by new pumpers? do you mean hospitals who just started giving pumps?

Sorry @IceLover i didn't explain that very well

I meant that my hospital only puts 1 D person per month onto a pump so only 12 per year , so that actually makes the queue longer if you see what i mean ( I waited 13 months from the date I was referred by my D consultant to going on a pump )

 

[fairylights]

My NHS area does it in groups so they do 6 at at time. I had to wait from April to August but they did 6 when I started and then 6 the next week. They do this a few times a year. I think they do it like this as there are 3 hospitals and they start 2 from each each week, you are there for 1 full day and 2 half days, and they are on call for you for the first week 24/7.