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What do i do now?

T

Tracey167

Well-Known Member
Messages
309
Location
Essex
Type of diabetes
Type 1
Treatment type
Insulin
Hi I have been asking my G.P and diabetic nurse about getting a insulin pump because I have exhausted all avenues trying to stop my hypo's. I have been type 1 diabetic for 27 years and over the past 3-4 years my sugar levels are always low (hypo) even after dropping insulins and that. By reading all the info i should qualify for a pump. When i spoke to my diabetic nurse she said i have to do the DAFNE course so she has put me on a waiting list for that (which apparently is very long), but then i get told they haven't recieved no funding for the DAFNE courses yet, i then get told that i have to be with a diabetic consultant to go for the pump. Could someone advise me what to do.
 
Hi.
Not a pumper so not much use to you, however this organisation Input certainly can. Read all about them and what they can do to help here: http://www.input.me.uk/

I am sure some of our resident pumpers will be along later and help too.
 
Tracey,

I think it must all be part of the selection process to see how serious you are, by constantly presenting barriers and challenges to overcome. Which is very off-putting. Stick with it though and you'll never look back.

As others have said, Input are very good in providing assistance with "difficult" PCTs. You must be able to carb count for pump therapy to be an option, but DAFNE isn't the only course as there are others, in Bristol we have something called Skills For Life and no sign of DAFNE at all, although apparently she is arriving towards the end of the year. I haven't been on any course and didn't even see a dietician before starting on the pump, but I've always counted carbs so that's probably why. Talk to your pump clinic (once you've established where they are!), they'll have more information on what's available in your area.

Keep on at your PCT and good luck.
 
Hi Thanks to all who responded, I will definatley keep at it, I have recently had to change my G.P because my last G.P was no help at all and he was supposed to be a diabetic doctor, but thankfully my new G.P is very helpful she has told me that if i continue to have problems with my hypos she will refer me to a consultant. I will definatley check out INPUT.

Thanks
Tracey x
 
I'm a bit confused tracy...

Who are you actually asking for a pump?

The DSN at a hosptial clinic or the DSN at your GP Surgery??

INPUT will be able to tell you were and who is your nearest pump clinic/consultant is, so that you can ask your doctor to refer you to that particular consultant/clinic...

DAFNE isn't a requirement to be able to pump, all you need is an understanding of carb counting, you are partly there already, as you would have started of with the oridgnal carb exchange regime that us long service diabetics started with..

I would contact INPUT, find out your nearest pump clinic/consultant and book to see your GP and tell her where and who you want to be referred to...

When you get to clinic, take a print out or your monitoring book + food diary and as much info as you can, do your research to find out how you feel the pump might have helped in certain situation or two.. So you started to build your case to why the clinci should give you one, and why the PCT should fund one..

Sadly even going to the right clinic, and seeing the right consultant getting a pump, can take time to achieve as they put you through hoops before they say yes! It took me 2 1/2 years to fight for my pump, clinic visits every 3 months with a wait of 4 months from when I was told yes before I actually got it!
 
Hi i got refered to a diabetic team from my G.P which to tell you the truth its a hard job trying to get an appointment to see them, they seem to want to deal with you over the phone which to me is not good because i end up speaking to a different diabetic nurse each time and having to explain myself over and over. I am going to see my G.P and ask her to refer me to a consultant where they deal with the pumps she actually did say to me if i continue having problems with my hypos she would refer me to a consultant. I looked on the INPUT websit and acccording to that that is what my next step is. When i asked the diabetic nurse they are telling me that i would probably have to travel to london for a pump but when i looked on INPUT it showed a list of hospitals and clinics that are doing the pumps and one hospital not to far away from me does it. I know it is gonna take abit of a fight to get a pump but im willings to with it how ever long it takes.
 
Tracey,

I believe the NICE guidance on pumping is not mandatory for PCTs. It is a recommendation and they can choose to ignore it if they wish. However, pumping is recommended where MDI has failed and those moved on to it have the competence and commitment to use it effectively.

I have just started to look at this forum as I am due to start pumping on 10th March, after 26 years of poor control. Your experience sounds a lot like mine. My PCT has only just started providing them, due to procratination about cost/benefit. I have never had good control but started to crack down when I started to get eye probs. This means up to 15 bg tests a day including during the night and correction does when high. This results in many hypos and highs. BG can be anything from 1.8 to 18. My HBA1c averaged out at 7.4 last time but it takes a lot of effort to achieve that. I originally asked for a pump about two years ago after a particularly bad hypo but the PCT did not do them at that time. The DSNs were a waste of time. Never got the same one twice. Returned my calls sometimes, sometimes not. I started to send my results to them be email but they did not reply. As regards your PCT, if they dont provide pump therapy you can ask them to refer you to one that does. Its a normal patients right.

To get back to the point. You have to show them that you have to comitment to be able to benefit from a pump. My pump nurse was impressed by my knowledge of carb counting although I have never been on a course. She thought I did not need to do DAFNE. I would suggest you look at the online course run by the Bournemouth Diabetes and Edocrinology Centre (BDEC). Just Google BDEC and you should find it. It is not heavy at all but will impress your team with your knowledge. I cant say it has improved my control on MDI but hey ho, if thats what is needed. Im hoping the pump will be better. You might even find your control improves! I would also suggest you order from Amazon a book entitled Smart Pumping by Harold Walpert. Again it is not a difficult read and goes through all the basics. Then I printed off from the NICE website their Buyers Guide To Insulin Pumps which give information on the pumps available in UK. Lastly, they are very impressed by accurate record keeping. I had to design my own record sheet as the tiny record book you get from the test strip manufacturers dont have enough space.

I hope this helps. Good luck!
 
Hi thank you all for your advice, i will let you know how things go, i have made a appointment with my G.P and am gonna ask her to refer me to a pump clinic and see if there is anything she can do to help me with this, she is a very good doctor so i am sure she will support me through this.

Thanks

Tracey167
 
Tracey,

I don't know where about's you live. If you have the good fortune to live anywhere near Rugby, thats the clinic to go to, not the one at the expensive new hospital in Coventry.

I found that the District DSN's in Coventry knew next to nothing about pumps, carb counting, insulin ratios, effect of insulin on blood sugar levels even. The answer they always gave was to increase insulin despite me telling them I was going hypo every night!

I went to Rugby, did their version of the DAPHNE course (one day a week for 4 weeks instead of several intensive consecutive days). This was a revelation after 27 years. After working with the team they recommended a pump and I got one!

The benefits of a good support team cannot be over estimated. They are invaluable.

Hope some of my story is useful

Anthony
 
Tracy,
I dont know how it is in the UK the rules may be different so this may not help... but..
It took me 3 years of fighting to get a pump. I have now had one for 16 years. I had to get my attorney to write letters threatning my insuance company and my doctor sent letters to them too. I wonder if you had an attorney send a letter to the NHS if this would help.
Just a thought.
And Good luck.
 
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