First appointment with nurse about pumps

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@PhoebeC I am sorry to read about your experience and angry on your behalf because that is not the experience you should be having.
My DSN sent out emails a few weeks ago to say that they will be striking with other nurses which is something I totally support. However, that is not an excuse for messing you about so much (if it is the reason). In your position, I would be reporting this to someone more senior.
@AndBreathe or @Docb I think you maybe able to advise the best person for this escalation. Would it be someone like PALS? I apologise if I have the wrong people.
 
PhoebeC said:
Another fun update, so my last appointment was cancelled. I didn't get a new one. Emailed my DSN, she booked it for today. Get all the way to the nhs center at 10.30am for my 11am appointment, and it has been cancelled, apparently I was on a list of Friday of people to contact and nobody did. New appointment is now 2nd Feb. I asked if this could be remote, and no it must be in person.

So we wait again. To actually have the appointment would be good news and progress. I am very fed up now.
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Sorry to hear about yet more delays for you @PhoebeC. Its stressful. Interestingly (well sort of) I got a phone call today telling me my phone consult with my Oncologist was rescheduled for the 3rd time (after a scan in early Dec) and with a different person. So I phoned the Secretary of the original Consultant, to establish if I could have a further reschedule - but with the original Consultant.

After being given 5 voicemail options, I selected the option for the Sec'y herself and got through to an intermediary anyway. After further lengthy interrogation I was finally transferred; so it seems that not only GPs have receptionists as their guard dogs, but so do Secretaries to Consultants! Anyway, one useful outcome was I got the corrected email address for that Sec'y and, I think, her direct work phone number (still to check that!). Fortunately I'm fully retired and got time to follow up on these bits of important admin.

How was Mexico, apart from warmer than here?
 
helli said:
@PhoebeC I am sorry to read about your experience and angry on your behalf because that is not the experience you should be having.
My DSN sent out emails a few weeks ago to say that they will be striking with other nurses which is something I totally support. However, that is not an excuse for messing you about so much (if it is the reason). In your position, I would be reporting this to someone more senior.
@AndBreathe or @Docb I think you maybe able to advise the best person for this escalation. Would it be someone like PALS? I apologise if I have the wrong people.
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PALS would certainly be a start, and I'd like to think if little else they would suggest the way forward. I'm no expert of the PALS' remit.
 
AndBreathe said:
PALS would certainly be a start, and I'd like to think if little else they would suggest the way forward. I'm no expert of the PALS' remit.
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I suspect very few folks are experts with the PALS remit, anymore. There certainly has been a shift over the last 18 years from being the patients 'friend' to full-time representatives of the hospital, Trust or ICS (former CCG) - and now defending the organisation that pays them, rather than resolving the difficulty.

I guess it was inevitable, but still a great shame. I'm coming to a view that PALS needs massive reorganising and reminding of their original purpose. Well certainly in the new Bucks, Oxford and Berks (BOB) ICS.
 
Yeah my DSN suggested PALS when I emailed her.

The story to that I didn't start with the email to her. The appointment number I have been contacted on, doesn't allow inbound calls. And the phone number for the centers appointment line is all clinics but diabetes apparently and he couldn't give me the correct number, and he couldn't find my record. He said the number would be on the letter, and I rang that number and he answered again, so I spent way too much time going round in that circle before emailing my DSN. She copied in the consultants secretary and said about complaining to PALS, I got a text with a new appointment the same day. I don't want to complain but my bus didn't show (its snowing) so my husband drove me, about 10 miles, we paid for parking and then to find out I was on a cancelation list last Friday to be contacted, but wasn't is annoying.

And I don't understand why it needs to be in person, it's unlikey I will leave with the pump as my DSN said she would help with that bit, the set up etc. I might email the secretary and ask if this can be remote. Not sure why he needs to see my in person, if there's a reason share it.
 
Proud to be erratic said:
Sorry to hear about yet more delays for you @PhoebeC. Its stressful. Interestingly (well sort of) I got a phone call today telling me my phone consult with my Oncologist was rescheduled for the 3rd time (after a scan in early Dec) and with a different person. So I phoned the Secretary of the original Consultant, to establish if I could have a further reschedule - but with the original Consultant.

After being given 5 voicemail options, I selected the option for the Sec'y herself and got through to an intermediary anyway. After further lengthy interrogation I was finally transferred; so it seems that not only GPs have receptionists as their guard dogs, but so do Secretaries to Consultants! Anyway, one useful outcome was I got the corrected email address for that Sec'y and, I think, her direct work phone number (still to check that!). Fortunately I'm fully retired and got time to follow up on these bits of important admin.

How was Mexico, apart from warmer than here?
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Mexico was amazing, would recommend. Also the new frio cooling pouch was put to the test and I was very impressed. It was 26 -30 in the day and only dropped slightly overnight. Will go back.

I gained a very well earned 8lbs in the 2 weeks, but the only thought I had about what to eat was how much insulin needed, not should I or about my cholesterol etc.

Journey home was a nightmare, fine once back in the UK. We came down with Covid Boxing day so honestly it feels years since and I am already in need of another break ha
 
Hi @PhoebeC. My suggestion for escalation is to e-mail your MP. Write down the whole sorry tale. Quite how you style it will depend on the colour of your MPs rosette, but whatever they are you could ask them to intervene on your behalf to get a commitment that your next appointment will not be summarily cancelled.
 
Proud to be erratic said:
I suspect very few folks are experts with the PALS remit, anymore. There certainly has been a shift over the last 18 years from being the patients 'friend' to full-time representatives of the hospital, Trust or ICS (former CCG) - and now defending the organisation that pays them, rather than resolving the difficulty.

I guess it was inevitable, but still a great shame. I'm coming to a view that PALS needs massive reorganising and reminding of their original purpose. Well certainly in the new Bucks, Oxford and Berks (BOB) ICS.
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If all else fails, you could always email your MP. Our current MP was a GP (married to a GP), who left the NHS to enter parliament.

Whilst he volunteered at the same vaccine hub I did shifts in, our paths never crossed. I must remedy that.

The whole NHS needs a shake down, but….
 
Phoebe, so so sorry to hear what's been going on! And angry.

And also, selfishly, a bit worried! I've just been referred to the pump consultant in my area, but appointment not until May. I had been thinking 'oh well, no doubt they're very busy, 4 months is not too bad given overall circumstances'; now thinking 'eek-- what if they cancel??' Of course it is very stressful waiting to find out whether you can get something you really need, that will make a huge improvement to your quality of life.

Also, Proud, very sorry to hear of your experience with your oncologist! But I expect you charmed the consultant's secretary; I hear from NHS people that the secretary is the key gatekeeper, and if you got her personal e-m and phone number that's an achievement!

Fingers crossed for both of you.
 
Just got out of my appointment with the consultant, pump approved the Omnipod and new background insulin until I have it. And he worked some magic about sterilisation for me too. He’s writing to that consultant and my GP about how important it is to my physical and mental health.
I felt listened to and understood. I am so happy I could cry.
Thanks all! Love this forum as always keeping me sane. Now for a new adventure
 
So pleased you had a productive appointment and have approval for the Omnipod. Yay!!
Which background insulin are you being swapped to in the mean time?
 
rebrascora said:
So pleased you had a productive appointment and have approval for the Omnipod. Yay!!
Which background insulin are you being swapped to in the mean time?
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Tresiba, I have already picked it up. Last time I attempted to change my background insulin I was very unwell, not with my levels, I just reactive well at all.

Starting tonight so fingers crossed.
 
That is really interesting/surprising. Was there a particular reason for the basal change? I would have thought that they might have changed you to split dose Levemir to get a better idea of your basal profile in preparation for the change to a pump. Tresiba seems like a step in the opposite direction, so just curious as to the reason..... Trying to learn more here rather than being critical...
 
PhoebeC said:
Tresiba, I have already picked it up. Last time I attempted to change my background insulin I was very unwell, not with my levels, I just reactive well at all.

Starting tonight so fingers crossed.
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Great news about Omnipod.

I switched to Tresiba from Levermir some 18 months+ ago and find it great for my circumstances. It took over 3 weeks to find my dosage needed, which turned out to be under half of what my then DSN initially suggested. I should have followed my instinct and made bigger step changes, guided by the evidence from Libre; but I was still pretty new to this and went with what I was told.

Did you specifically ask for Tresiba? It takes a certain mindset change - basically I got mine optimised for nights and then I'm prepared to manage all adjustments by day on either carbs to chase the BG or only bolus adjustments to chase the sugar! For all that, I far prefer only tinkering with just one insulin day by day. I do tweak my Tresiba periodically, but not frequently. Good luck.
 
rebrascora said:
That is really interesting/surprising. Was there a particular reason for the basal change? I would have thought that they might have changed you to split dose Levemir to get a better idea of your basal profile in preparation for the change to a pump. Tresiba seems like a step in the opposite direction, so just curious as to the reason..... Trying to learn more here rather than being critical...
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We will still keep it split. I am on Lantus solostar now, split. It was Levemir that made me very unwell.
Yeah, I don't know how I feel about changing basal, but I also can't keep going as I am on Lantus.
 
PhoebeC said:
Just got out of my appointment with the consultant, pump approved the Omnipod and new background insulin until I have it. And he worked some magic about sterilisation for me too. He’s writing to that consultant and my GP about how important it is to my physical and mental health.
I felt listened to and understood. I am so happy I could cry.
Thanks all! Love this forum as always keeping me sane. Now for a new adventure
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Made up for you, Omnipod user myself so in good company.

Better still, possibly later in year Omnipod 5 will be available, this integrates with Dexcom G6 so will help keep bg in range.
 
Ah! So there is a problem managing your levels with Lantus and Levemir has been tried and ruled out already, so you are trying Tresiba to see if that helps any until you get the pump. Do you have a time scale for pump start?
Good luck with the Tresiba. I can understand it must be daunting, especially when you have previously changed basal and had a rough time.
 
PhoebeC said:
We will still keep it split.
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If you mean that you intend to split the Tresiba, there really is no point. The profile for a single Tresiba dose is c. 40 hrs, ie today's dose is topping up yesterday's. It takes up to 3 days for any Tresiba change to take effect. Hence taken once daily.

Tresiba is often described as an inflexible basal, because of this 40hr profile. I find that inflexibility is actually its strength. Once you've got the basal load sorted, then the advantage is you can take the daily dose at whatever daily time that suits - with no need to be exactly at a repeat time and if, on the odd occasion, a basal dose is overlooked, it can be taken later that day. Knowing my basal is about right for safe nights, I can sleep without too much concern.

I think the tricky part for you, 17 years on MDI and accustomed to deciding on any one day whether ro adjust your basal or change your bolus ratios for whatever correction/adjustment might be needed .... it needs a different mindset. Only bolus or carb intake will help for later that day or tomorrow. Particularly relevant if you might need to compensate for the next game of rugby, or after today's game/training session.

That said, someone posted on the forum 12+ months ago who was on Tresiba and in full training for a forthcoming Olympic level athletics. So it seems that Tresiba can be acceptable for people in highest level sports. The important thing is that Tresiba suits your metabolism and doesn't affect you in the way Levermir did; only you can find that out.
 
PhoebeC said:
Tresiba, I have already picked it up. Last time I attempted to change my background insulin I was very unwell, not with my levels, I just reactive well at all.

Starting tonight so fingers crossed.
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I really liked Tresiba (compared to Lantus). I hope it suits you too @PhoebeC.

Great news about the Omnipod! I switched from MDI to the Omnipod Dash in June and haven’t looked back. Now, I feel I can really tweak my doses to suit my lifestyle. It’s such a relief after 14 years on MDI. 🙂
 
Maybe I should have asked him more about Tresiba. He said to keep it split doses, I might speak to my nurse and see what she recommends.

We cannot get my background levels set for longer than 1 week - 10 days, and we have worked out it is based on my periods, both menstruation and ovulation change my requirements, and because my cycles are random we cannot even plan. He is writing to the gynecologist and my GP about urgent sterlisation, if we can stop the random periods due to contraceptives that would help hugely also.

@nonethewiser yes I mentioned this and he did say we aren't there yet but it is exciting.

So far so good with Tresiba, but if the 3 days is the time for it to kick in we will see.
I am excited about this new adventure. And have read every post about the omnipod :rofl:
 
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