Clinic Structure Change - I'm Overreacting!

[Cheryl]

I have just received a letter from my pump clinic saying that they are restructuring their pump service. They will now expect me to spend two hours each visit at the hospital (I usually get away after an hour currently) and participate in group discussion and education prior to a private consultation with 'a' doctor (no indication whether I'll get to see the same doctor as I do at the moment). :evil:

Now then, each to their own, but the minute anyone says 'group discussion' to me I run for the hills. I consider my condition private, do not discuss it with family or friends (except my partner) and don't feel that I need further education at this point. I have enough trouble already with the DSNs one size fits all attitude when it so clearly doesn't with me.

I like this forum as it's anonymous, I can ask questions & share stories which I would never do face to face with other people &, quite frankly, I have enough problems of my own without sitting there listening to other people's, o this forum I can pick & choose what I read & reply to.

The letter states that NICE has issued strict guidance on how pump services should be delivered and continued and goes on to say that they "..hope that this will be much more constructive use of your time. Importantly will demonstrate to NICE that I am meeting all of the requirements for continued pump use." Now that sounds like a threat to me; put up with it or have your funding withdrawn.

I found myself literally shaking with both anger & horror at the thought of being made to endure group therapy and immediately imagined myself acting like a sullen child sitting in the corner & refusing to take part. I know I'm overreacting, but I cannot think of a single benefit to my care by making these changes. Not least the fact that I have to make up the time taken off work for hospital appointments, my workplace is 80 miles from the hospital & it takes me at least 2 1/2 hours from leaving the hospital to getting into the office. Even with the current system I am 4 hours late for work, having to spend an extra hour at the hospital will only make things worse.

Has anyone else had any experience of this sort of thing? If so what is/was it like? Were you forced to sit through group therapy or be threatened with withdrawal of funding? Does anyone know how I can access these NICE guidelines. I've trawled the NICE site & can't find anything that looks like it may have led to this.

My next appointment is due in November. I can predict that my blood pressure will be 180/120 by the time I get to the hospital, I'll be so worked up. :cry:

 

[wiflib]

.....and what hacks me off is this blind adherence to guidelines. The clue is in the word, GUIDELINE! not law.

I would simply turn up 'late'.

wiflib

 

[Cheryl]

Thanks wiflib, the thought has occurred to me too. I'm also considering going to the group then, when I'm asked whether I want to share anything, venting my anger there & then. What I did find in NICE info referred to considering the individual's preferences. I think I'll print that off & take it with me regardless, that is if I haven't worked myself into such a state by then that I've burst a blood vessel.

 

[iHs]

Hi Cheryl

I haven't been confronted yet with being ask to sit in on a group discussion. Will wait to find out when I next see my consultant next year.

Can you not just say that your employer needs you to get back to work as quickly as possible so you can't join the discussion or you might face losing your job?

 

[Cheryl]

Maybe I'm getting all in a tizz about nothing, I guess until I go there I won't know. There's so much that the letter doesn't say: Whether there'll be a fixed doctor appointment time or whether it'll be a free for all queueing system once these group discussions have finished. It doesn't say whether there''ll be advertised themes to these group discussions so one can choose to sit in if one needs education in that area. It also doesn't say if there'll be any sanction for not attending group disussion, other than the implied threat that I mentioned above.

I don't normally see the DSNs or dietician anyway, why would they think that I want to start now. I find that I get mixed messages, their advice is very rigid & they don't listen to what I say or look at the evidence that I show them. For example, if my 2 hour post-prandial BGs are too high, I mustn't be having enough insulin with my meal, despite having just 1u more would send me hypo & I can prove it and my showing them that after 5 hours, it'll be back to normal. Grr! I'm going off one one again. Must calm down. Time for a G&T & to subject the cat to some forced stroking time!

I need to speak to the DSNs this week anyway as I've been waiting a month for them to call me about a pump upgrade & I've given up waiting. I might try & pick their brains about it when I speak (if I can ever get through, they're rubbish at call-backs). I'm not impressed with my clinic at all at the moment, as the doctor approved a pump change for me over a month ago & told me that the DSNs would ring me before I went on holiday (5th September) to arramnge a discussion about it & I'm still waiting.

 

[iHs]

Hi

I was wondering if I had to meet a certain hba1c level in order to keep my pump and was told no. As long as I try to acheive fairly ok bg levels then I have nothing to worry about really.

It sounds as though the Combo isn't able to deliver insulin in small enough increments. Is that why you would like an upgrade to a different pump?

Like yourself I sometimes find that I cannot get a happy medium with how the pump delivers insulin so have loads of different basal rates set up. Good job the Combo has 24 lol

 

[Cheryl]

The NICE Guideline that I read today says: 1.4 Following initiation in adults and children 12 years and older, CSII therapy should only be continued if it results in a sustained improvement in glycaemic control, evidenced by a fall in HbA1c levels, or a sustained decrease in the rate of hypoglycaemic episodes. Appropriate targets for such improvements should be set by the responsible physician, in discussion with the person receiving the treatment or their carer.

For me, my Hba1c dropped from about 8.2 with 30+ hypos a month to c7.2, however it spiked suddenyl to 9.8 in February this year though I now think this was due to me having just come back from my skiing holidays and havng spent the week eating a non-standard diet, no carb-weighed meals as I have at home, & far too many puddings & vin chaud (full of sugar), plus deliberately running a little high to avoid hypos on the slopes. Anyway, the next Hba1c was 6.5 but that was with an increase in hypos to 60+! I am chipping away at the hypos & have fasted & fasted trying to even out my fasting BG. However, if I increase an hour by 0.1 (the smallest on my pump, an old Accu Chek Spirit), I'll be hypo next time on that profile, if I decrease it again by 0.1, my fasting BG rises, so I often end up havinga basal profile that goes, for example: 0.4, 0.5, 0.4, 0.5 to try and keep my fasting BGs relatively even-ish.

My current goal is mrely to outdo the previous month, & I've gone from 60 hypos & only 3 hypo free days in April & May to 40 in AUgust & 9 hypo free days & 27 in Spetember & 14 hypo free days. I've no idea what my Hba1c would be if done today, but I don't think it would be much above 7. Fingers crossed for my next test next month.

Then the doctor said that I had too many changes in my basal profile, so I asked for a change in pump. I only have the Spirit as I opted for a quick start & they had a pre-used Spirit in the cupboard that they said that I could have. I have therefore persuaded them that, though I was approved for a pump they have never actually bought me one so I should be given an upgrade to a pump which should be more suitable for my needs.

 

[LittleSue]

Hi Cheryl

Can't advise on your rates/basal profile, being fairly new to pumping myself.

Regarding the new clinic structure, surely they can't insist you participate in group sessions, because your medical issues are confidential between yourself and health professionals directly involved in your care. If they want your feedback for the benefit of other pumpers, you can do this 1:1 with your doctor or DSN at your appointments - thereby not refusing to attend or 'engage' with your care team but expressing a preference and exercising your right to keep private matters private. You might need to sit silently through a group session or two to make the point.

 

[jopar]

Even though NICE does mention training and education, it does not specify what training or education or how it is to be achieved

And no they can't enforce you or make taking part in group sessions a condition of continued pump therapy... If they try to they will be breaching the Data Protection Act! As any information concerning your diabetes (even the fact your are one) is confidental infomation, you have to give permission for any aspect of it to be discussed or shared...

There is nothing wrong with group sessions but for individuals who do not want to attend a group session then the clinic must provide alternitive individual appointments..

You say that you have quite a distance to travel to clinic, is there another pump clinic that you might be able to be transferred to who might meet your needs better?

If they are insistant that this is the way it's going to be, I would contact Input for futher advice here www.input.me.uk

 

[Cheryl]

Thanks Jopar. I think that I'll just have to suck it & see.

The clinic is only 15 miles from home, but I work 65 miles in the opposite direction from home. I don't have a car, so borrow my partner's car to get to the clinic as it would be a long walk, train & bus ride otherwise. I then have to bring the car hone, walk to the station (35 mins) & spend an hour on the train. Hence it takes me 2 1/2 hours to get from the clinic to work.

The title of my post says it all. I expect when I get there, it won't be so bad, but I'll be creating horrendous scenarios in my head all the way. I am annoyed that they seem to think that everyone wants & needs continuing education. It's 2011, once one has the skills the internet can provide most all that one needs. I can see the value of offering informal upskilling sessions for those who want to discuss anything or obtain general advice etc. but to expect everyone to sit through a group discussion that they neither want nor need with the implied threat that non-compliance may result in the withdrawal of funding is bang out of order. As you say Jopar, there's a need for education at the beginning, but it's not necessarily ongoing & the clinic should consider each person as an individual. Perhaps it stems from the current fixation on Continuous Professional Development. I get that one at work, everyone must attend courses each year, just to prove that you still know what you're doing. Grrr!

 

[Cheryl]

I dropped in to the hospital this morning to get a proper look at a couple of pump options as mine is being replaced. While I was there, I asked the DSN about the new clinic & whether it would be obligatory to attend the group discussion.

She replied that continuing education is a NICE requirement (not that I've been able to find any trace of thus in my trawl of NICE guidelines). I said that I'm not a "group discussion" person & have no inclination to discuss my health in front of other people. She sort of put my mind at rest by saying that if someone has good reasons not to want to attend, they wouldn't force them to. She said that many people have asked for an opportunity to meet with fellow pump users & also that many people need an awful lot of support, which clearly I don't. She did say that I could expect continuity of care as far as my consultant is concerned which the original letter suggested might not happen.

Rather ironically, she then asked me if I wanted to talk to another patient in the clinic that morning who was already using the pump that I have decided to move onto. I managed to to snort with laughter after having just told her that I didn't find it helpful to talk to others about their experiences. If there's one thing that I know about my diabetes, it's that it's mine & I usually react opposite to everyone else & see benefits to others' negatives & vice versa.

So, I'll wait & see next month when my appointment is due.