Why would you recommend your diabetes clinic?

[cath67plum]

I'm looking to change my diabetes clinic as I'm not satisfied with the support I'm getting - only be on the pump since mid-November 2016.

I'm interested to find out what makes others confident in their diabetes clinic.

Thanks
Catherine

 

[tigger]

It depends what you need. I want a consultant I can talk to, (now) continuation of my pump supplies and if any cash frees up funding of a cgm instead of me self funding my libre, not to bother me unnecessarily e.g. see me more than I want to be seen, join up my care with other parts of the hospital if needed. What I don't need is a dsn, a dietician and doctors who use me as a learning experience. But I've been type 1 for nearly 34 years and have had too many years of this. I look for my support from boards like this and blogs as the users are the ones with the knowledge and I go by the mantra that no one has more knowledge about my diabetes than me.

 

[noblehead]

I'm looking to change my diabetes clinic as I'm not satisfied with the support I'm getting - only be on the pump since mid-November 2016.

May I ask why your not satisfied Catherine?

 

[richyb]

when I first went to see my DSN sent by my gp, I was not happy with the DSN approach. Yet now I am totally happy and am confident she knows her stuff. I think you have to stay with it for quite a long time and eventually you will have success. Have confidence in your DSN. Lets face it it is their job and are all professionals I now have a lot of respect for mine and yet a year ago I was not happy. Do not be in such a hurry I had been typ 1 for 50yrs and it took me about 10 months to get a pump despite haveing a good Hba1c.
DAFNE courses are good.
51 yrs type one

 

[cath67plum]

May I ask why your not satisfied Catherine?

I feel that my DSN who I have been with for 8 years is over-stretched. I started on the pump end of November last year - I have received very little help with it. It is difficult to get hold of my DSN. She has a heart of gold and wants to help but has a huge load! I feel I need a dedicated pump DSN who will give me more support in learning the skills I need so that I can use this brilliant new tool i.e. the pump to the best of my ability. I feel I'm just managing to tread water and keep my head poking out of the water to breathe. BUT I'm tiring and emotionally it's taking its toll.

 

[noblehead]

Understand your reasons for wanting to change clinics @cath67plum

The pump company's usually offer good back-up support and the reps occasionally do post-pump training days, not sure if this is the case with your pump but you could make some enquiries and ask. Also the book Pumping Insulin has some excellent information and advice on getting the most from a pump, even 2+ years down the road I occasionally turn to the book when fine-tuning things.

Best wishes and good luck in finding another pump clinic.

 

[Engineer88]

@cath67plum I changed for similar reasons to you, only I got annoyed with my DSN who didn't want to help me continue with CGM and kept insisting I would be better without it.

I use the Churchill Oxford now, and will continue to do so even if I move outside of my CCG to Milton Keynes.

I love them as the staff have time for me and I feel listened to. Also being a teaching hospital they are up to date and are the only place that have suggested I might not have bog standard D. I've been saying this for years.

I would recommend pumping insulin as a book if you can get hold of it, I learned to use my pump from that and people on here.

 

[tigger]

I would really recommend pumping insulin and this site too. My dsn was not so experienced with pumping and when I had questions she couldn't answer I'd put them up here and would get a nearly instance response. One of the dsns was very good in showing me different sets and how to insert when I didn't get on with the initial one. Apart from that it is just a lot of hard graft on your part whether you have the perfect dsn or not.

I find a pump mentally a lot more exhausting because you are increasing the variables that you can alter and adding a load of new ones (set and mechanical failure, site location, rising insulin temperature to name a few....). Has your consultant recommended taking a pump break? They're not so common here but apparently in the US they recommend that everyone spends 3-4 weeks on a pump holiday each year. It helps your sites take a break but more than that it helps you take a break and remember what life was like pre-pump. Last year I took a break for 4 weeks and was very grateful to go back. This year the break lasted 4 days before I had enough and went back to the pump.

Have a look at the threads on here in the pump forum and see if that helps you work out what it is you're finding so tiring at the moment? Is it setting a correct basal rate? Is it using the different bolus settings? Is it set insertion or variable readings after set insertions? Is it that your numbers are too high or too low?

As you will see the usual advice to any pump question is check your basal rate. It's boring, a pain but essential. The easiest way to do this, if you can afford it, is get a libre for 2 weeks as it makes it much easier. Some hospitals give an initial one away for free so it's worth looking into.

As you will also see everyone goes through ups and downs and seemingly random changes of basal rates and carb ratios. If you are organised (I'm not always) you keep a record of this and can tie it up to other factors e.g. change in season, major events. There is a lot of trial and error but if you value the freedom and flexibility a pump can give you it is worth doing. If you preferred what you had before then that's a choice too.

 

[genix]

I agree with everything @tigger said in both posts. I just wanted my CDE to leave me alone, I was over her ( and she is lovely and knowledgeable) 'help' in less than a week, she understood this and left me alone. I have had this condition since I was three and truly want to be master of my own destiny and I actually become very aggravated at health professionals trying to control my diabetes when I am the one who lives with it. However that doesn't answer your question. The CDE I saw (and I only saw her because it is a required hoop to jump through to obtain a pump ) is very helpful to those that want it. She gets the password and username for their carelink software to their BS and bolus values etc and will read it daily and alter their basal rates via sms txt messages. She will book weekly appointments to see them in person and although costly she dedicates her entire day to helping her many pump users. She will still be altering basal rates at 10pm at night via sms.So I would expect as a minimum that a CDE should at least have your basal rates set and your initial carb values working and explain to you why they are changing the values, and to do this over a period of a week to a fortnight and to leave you with a better understanding of how to help yourself manage your own diabetes without them.

 

[cath67plum]

thanks for the comments