Need some information.

[SophiaW]

I thought about going private for my daughter through frustration at our local clinic. I also felt we were trying one thing after the next with no success and were beginning to go around in circles, repeating what had already been tried without success. I didn't feel my concerns were being taken seriously or with much support and understanding. It was during my searches on the internet to find a private consultant (thinking about a second opinion) that I found our clinic that we go to now, it is in the neighbouring county and although a further drive to get there it's been a move for the good. I feel that we now see a consultant who has a similar way of thinking to me and feel very supported in our decisions. The extra drive is well worth it and as we only go to clinic every 4 months I don't mind. We still keep in touch with our previous DSN who is local and she offers us support locally (she is fantastic), plus we have the two DSN's at the new clinic so there's plenty of help for us if we need it.

 

[Julie1471]

Sophia, you've hit the nail right on the head as far as I am concerned and I'm now thinking I should have stood my ground earlier on and I possibly wouldn't have gone through some of the high and lows that I have. I'm now just waiting on the referal to the diabetic nurse, and every day waiting for the letter and the date looks like a lifetime away and waiting for her to throw a spanner in the works!!!

 

[Julie1471]

Well my date to see the diabetes nurse has turned up, it's the 15 June, seams like a lifetime away, until then I'll keep on doing as I am and tweeking here and their to see if i can get the highs any lower.

 

[iHs]

Hi Julie

When you test your bg levels during the day, what target bg levels are you aiming to try to achieve? Also, are you altering your insulin doses (insulin to carb ratios) in order to achieve the targets? If you are just using basic guesswork, then do find out about using ratios as it can make a fair amount of difference to how we all use bolus/basal insulin.

 

[Julie1471]

IHs, I use the one to three to drop bs, but it does not always work, one example I have bs before bed 20.3 did bolus to counter, next morning 3.3 , but did 2 units less to counter high. What bs and insulin counts are not working together, highs don't go down by amount injected,nit looks like my body is playing it's own game. Saw my gp the other day and told him what consult team had said, and his words wete,nget consult to write to me, and I will agree and put forward for funding. But I don't hold out much hope as my pct is southeastern and costal which fails nice guidelines by 97%, how can I overturn that!!!! All others are cab ounted. What else can I do!!!

 

[Julie1471]

I'm looking for between 5-8, but d partment cut inulins to get hypo signs back and it's not worked, no signs of low or high, so now what do I do!!!

 

[Julie1471]

I rang my DSN, to say that my app with them, was on the same day and at the same time as my diabtic app, with the consultant, but I was meant to be in 2 different places :? and how was I meant to do that or would they be joining us at my appointment??. On Friday of this week, I had another letter giving me another date and they have brought my app forward to 28 May. So I get to see her before my app with cons.

 

[spottymadliz]

Hi Julie,
Sorry to hear that you're having a rough time of it!
I've been on my pump (medtronic paradigm 712) for 7 years now, but before that I too struggled with Lantus/Levemir. Whatever I did I could not seem to get my diabetes under control!
Do you notice any pattern with your highs/lows? I found that I would hypo in the night, be high in the morning, hypo at lunch time and afternoon, then high again in the evening! No matter how I juggled my carbs/insulin I could not get it right!
Now however, using Novorapid in my pump, through some trial and error and many finger prick tests, I have a programe of basal rates and bolus ratios to keep my blood sugars in check!
If you are already carb counting, then you are already part of the way to becoming a good pump user!
Liz
Type 1
On Insulin Pump since 2005

 

[Julie1471]

Hi, Spotty, my appointment with DSN, was a complete waste of time, told her and so did hubby of what we did, and how some weeks we are having the same meal, 2 nights in a row(borring I know, but doing it to make a point), next morning could be xx blood glucose level the morning after this blood glucose level, and all I got the reply yes right. Got told my NHS trust hadn't prescribed a pump in 18 months. Got told that Levemir, is the new wonder insulin. And to try that, I felt so down trodden at that appoinment, that in the end hubby took over and came out with the classic line(which we all know) and if that doesn't work?? To which her response was well you can ask to go on the pump waiting list and then got told had to get consultant to do that. But that if I was willing to travel outside the area(little does she know, hubby works for the railways and I get free travel anywhere in the uk). But I did tell her that South Easterns diabetic was moulded to a one size fits all and that their are those of us, which do not fit into that box . Wish I did, I mainly have lows early morning, mine is the same but at the moment it's not low as I have a kidney infection, yet again. Well consultant app on fri, I'll see how I do their.

 

[Julie1471]

I can not beleive the hospital appointment I have just had, I still think I'm dreaming. I have been put on the pump waiting list, after so many years, I keep thinking at the moment that I am dreaming and I'm going to wake up soon. But I finally got on the list, my consultant offered me an Islet cell transplant, but I said I would like to try the pump first, but he said I am a prime candidate for both, I can not get it over. I said why bs high as to get hypo signs back, which has not worked and he said that over a long period of time, that some diabetics lose their signs and never get them back. So he thinks I fall into that group. I am just so happy

 

[SophiaW]

I can not beleive the hospital appointment I have just had, I still think I'm dreaming. I have been put on the pump waiting list, after so many years, I keep thinking at the moment that I am dreaming and I'm going to wake up soon. But I finally got on the list, my consultant offered me an Islet cell transplant, but I said I would like to try the pump first, but he said I am a prime candidate for both, I can not get it over. I said why bs high as to get hypo signs back, which has not worked and he said that over a long period of time, that some diabetics lose their signs and never get them back. So he thinks I fall into that group. I am just so happy

Fantastic news Julie

 

[Julie1471]

I know, I keep thinking that I'm going to wake up soon, even asked hubby to pinch me earlier, just to check.

 

[SophiaW]

lol, I can understand I really hope it works out well for you like it has done for my daughter, did they give you any indication when you will get it - how long the waiting list is? It's a lot of work particularly in the beginning but if it can help to solve problems then it's worth putting in that effort.

 

[Julie1471]

Sophia, both my husband and me were so shocked, we forgot to ask. I'll ring his sec on Monday to see if she can grab him and ask. We thought after the appointment with the Dsn, we would have a fight and yet again, go over evrything again. But he said it's not an exact science and that diabetics can't be fitted into boxes re their care. So I just bluntly( me being me turned round and said well what do I do now?? And he started of with a cell transplant and was like right (sorry admins, tell me of if you need, but thought Bloody hell), and just turned round and said why not try a pump first, and he said I'll put you on the waiting list, but as I said and Const agreed if the pump is not for me then go on cell transplant list, and I know it will be hard and I will miss my family as I will be so far away from them, but if it stops all of this, then either solution will be good.

 

[Julie1471]

Called the Consultant's sec, yesterday of the hospital, that I will have to goto for the pump, to be told, that they are having problems with funding and that their maybe a wait. Just wondering if their is anything else I can do, thinking about going to see my MP, to see if she can ask a question of the health sec, to ask why he is allowing my trust to fail Nice guidelines by so much..

 

[SophiaW]

I'm not sure if you've already seen these two sites, INPUT and Insulin Pumpers UK. I have linked them below, the first one INPUT I have linked to the Your Rights page and there may be something useful in there for you - haven't read it all myself.

http://www.input.me.uk/nhs-constitution/

and

http://www.insulin-pumpers.org.uk/

 

[Julie1471]

Thanks for that Sophia, going to start reading up, but also arranging an appointment with my local MP and I'm also going to contact the Input people as well. Thanks once again, for that.

 

[iHs]

Called the Consultant's sec, yesterday of the hospital, that I will have to goto for the pump, to be told, that they are having problems with funding and that their maybe a wait. Just wondering if their is anything else I can do, thinking about going to see my MP, to see if she can ask a question of the health sec, to ask why he is allowing my trust to fail Nice guidelines by so much..

Julie

I would ring your PCT first and find out what the situation is regarding funding and then INPUT if you need further help. I got my pump in 2010 but had to wait about 3 months before I was told by my DSN that funding had been approved. Some PCTs fund insulin pumps in batches of people who need them so it might be that only a certain number of people per month get them.

 

[Julie1471]

Hi IHs, thanks for that and I spoke to a very helpful woman called Margret, she could understand the frustration at being told yes you can have a pump, and then no you can't due to funding. So she asked if I minded her speaking to the head bod in my local Pct. She said it may take a day or 2 for her to get back, to me, I said that was fine and I would wait to hear from her. Now bearing in mind I only called this morning. When I got back in, their was a message asking me to call her. So I did, the issue is not with funding as I was told by consultans sec in Ashford, it's down to the fact that they have no Dsn's in which they can pump train . But as I said well ok, you have 2 Dsn's at Margate, so why not pump train one of them, that can spend days setting people up and then when more Dsn's are employed, it should make things easier?? So the long and short of it 20 people so far on waiting list at Ashford, that is the number the head bod has at the moment, that they are aware of. So I sat and thought waiting for the but you have no chance of getting one. When Margret turned round and said, but head guy has no problems in you traveling out of area, to be put on a pump and if you have no problems with traveling which I don't( hubby works on railways, so London's, no problem), and that I should get either a Gp referal or consultant referal, for one of the London hospitals. So I have booked a Diabetic Gp referal( me and him get on well, asked for Iphone blood strips for the machine, got called thinking he wanted to check my reults, no he just wanted to see the machine and app ). But I might also make a consultant app as well, just to be on the safe side. . I can not get over why we aren't told the truth, that inacutal fact my PCT does have the funding, just not the staff. Just looking at Guys and St Thomas's I've been under the care of Guys diabetic team, before, when it was headed by Prof Harry Keen, anybody under there care for pump therapy now, just wonderring, what the care is like or is there a better London hospital???

 

[iHs]

Makes you flipping fuming doesn't it when you cant get the real truth.

Although part of a pump package should include backup help from a pump trained DSN..... that's not always essential. Many people are frightened to make changes on their own back so need help from someone but if you get the book Pumping Insulin and look online at loads of forums..... you should be able to get the help you need.

You can get yourself referred to another hospital that has got pump trained DSN, so yes do that.

My friend travelled from East Suffolk to Guys London and saw the famous Prof P and got her pump. Suffolk consultant didnt think a pump would help but the Prof did.