Postponed, again!

[KathyJay]

Hi everyone
I’m on here for some advice in regards to my options. I’m a T1 (~18yrs) and a pumper (~10yrs) and have been under hospital care for clinic appointments etc. which I usually attend every 3-4mo (a stipulation of having the pump). Regardless of my control I have only ever once missed an appointment (the clinic was running 3hrs behind and I couldn’t stay). Recently
My appointments have been changed on me, literally days beforehand. The last one wasn’t pushed back a month which I was okay with, but my most recent one had been postponed by 3 months! Which would mean I hadn’t been seen by the clinic in 8 months.
I’m fed up with this, as whenever I go the clinic is ALWAYS at least an hour behind! There is another pump clinic in a hospital nearby which I have been offered to transfer to in the past - should I try and get in there? I’m concerned because I don’t want them to take my pump away or change my exit criteria. I can’t be seen by the GP as they are clueless when it comes to the pump - they alway question me about t when I mention it. Is there anything else I can do? I tried to ask for a closer appointment but was told there was no availability until August.
I’m frustrated as I’ve recently had a period of stress which has caused some issues with my control and I wanted to get a lot out of this clinic appointment.
Sorry for the essay but any advice would be greatly appreciated.

 

[Pine Marten]

I'm so sorry to hear this, @KathyJay, and have no advice as I'm type 2 - but a similar thing happened to me this morning when I went for my diabetic review, so I am feeling p*ssed off and have every sympathy with you! 😡

 

[KathyJay]

I'm so sorry to hear this, @KathyJay, and have no advice as I'm type 2 - but a similar thing happened to me this morning when I went for my diabetic review, so I am feeling pissed off and have every sympathy with you! 😡

Hi there! I want to like the message but I feel it’s not appropriate as you’re as miffed as I am! So I’m replying to say I definitely feel your pain

 

[Pine Marten]

that cheered me up, KathyJay, thanks!

 

[stephknits]

Happened to me to when I went on the pump. Longest I have had between appointments is 18 months. Mind you, at our clinic appointments are every 9 months on MDI and every 6 on the pump. I guess if it were me I would ring the DSN team, which are great at my hospital. I generally find them more useful than my appointment with consultant as they deal with the every day management stuff.

 

[everydayupsanddowns]

I get seen by my GP for annual review (toe tickle, BP, weight etc) and see my pump clinic at the hospital every 12 months. I try to make it so that the appointments are 6 months apart, but like you I find the pump clinic is often late to book and prone to pushing back appointments.

I'm a bit surprised that they are insisting on seeing you every 3 months. That must drive you crackers! I think the national guidance is to make appointment frequency suit the individual - I'm pretty sure there isn a blanket rule about being seen every so often (though your local service may have implamented that). Even if they have said you need to be seen so frequently, I can't see that they could deny you access to your pump if it is them that keep pushing the appointments back!

You could move hospitals as you suggest, but in your shoes I'd want to know what the possible new one was like - perhaps INPUT could help, they seem to know the most pump-friendly centres in the UK.

 

[trophywench]

Our hospital appointment service is utterly useless - University hospital with dedicated diabetes centre open 5 days a week 9-5 - after 2 years having every single appointment cancelled - when I said I could go any day at any time they at last explained that if the cancelled one was at X o'clock on eg a Tuesday morning - then they were only allowed to rearrange it again for a Tuesday morning even though they might well have capacity on some other days/times.

I too was suffering from horrific stress and thereby horrifically swinging BGs -eventually managed to get an appointment with a DSN. She suggested something that worked, and has for others I've suggested it to on two diabetes forums so far too. To HALVE my correction rates! Sounds bonkers yes. But what happens is this - if you do it and give it a fair crack - say a fortnight - in the finish the BG actually becomes more stable overall. It will NOT however be stable at the lower level you want it to be, but once it is stable again, you can start 'tweaking' it again, but only by teeny amounts - I never adjust rates by more than 5% at any time on the basis you can always add more insulin, but can't ever remove it, once it's been delivered.

 

[AJLang]

Have you spoken to your DSN? At my clinic the pump nurse gives advice if you're between appointments. I can understand your frustration because I had to wait 18 months for my last pump appointment due to a shortage of consultants. Fortunately they didn't have to change anything with my basal/bolus because I do that very regularly myself, but I did know that the pump nurse was available if I needed her.

 

[Pine Marten]

I'm so sorry to hear this, @KathyJay, and have no advice as I'm type 2 - but a similar thing happened to me this morning when I went for my diabetic review, so I am feeling p*ssed off and have every sympathy with you! 😡

Oops, sorry 😳

 

[everydayupsanddowns]

Oops, sorry 😳

No problems at all. Just erring on the side of linguistic caution for different people’s sensitivities.

 

[Flower]

Hello KathyJay and welcome 🙂

I use my DSN for advice about control and pump/insulin issues between clinics, they get back to me in a day or so either by phone or email. It is frustrating when things keep being altered when you have had all the blood tests done and are ready to go. My longest wait between pump clinics has been 17 months for a 6 month appointment but things have improved lately with shorter waits and fewer cancelled appointments. I attend the clinic expecting a wait, I think that's just the norm in busy clinics dealing with diabetes.

Before you consider changing hospitals can you find out how long the waits are there for a first appointment as you may well find yourself in the same situation.