Type 1 Changing diabetic clinic

[Apbnab]

Good morning

I've been a type 1 for 42 years and with the same hospital for my diabetes care for about 30 of these years. I say care lightly as I haven't had an appointment for at least 3 years. How feasible is it to change hospitals? It would mean a 100 mile round trip ( we live rurally) but I'm happy to do this if I get better care.

 

[dancer]

@Apbnab have you contacted the hospital to ask for an appointment or to find out why you haven't had one for 3 years?

Has your GP practice been giving you annual blood checks etc?

No excuse for your situation would be acceptable but have they given any excuses?

Do you at least have a DSN based at the hospital you can contact?

Perhaps a complaint to the health board should be made.

I'm sorry I don't have any experience of changing hospitals.

 

[EllieM]

If it's any consolation I'm in New Zealand and I went about 2 or 3 years between appointments over covid (still had GP checks). When they finally gave me a new appointment they gave me a pump. (Not sure whether this was because they felt guilty about the delay, probably wasn't, but it was a pleasant surprise.)

 

[Apbnab]

@Apbnab have you contacted the hospital to ask for an appointment or to find out why you haven't had one for 3 years?

Has your GP practice been giving you annual blood checks etc?

No excuse for your situation would be acceptable but have they given any excuses?

Do you at least have a DSN based at the hospital you can contact?

Perhaps a complaint to the health board should be made.

I'm sorry I don't have any experience of changing hospitals.

Thanks for your reply

I have asked why I haven't had an appointment, they just say I am on the waiting list to see my consultant

I don't have a DSN I can chat too, there is a dietician who I have emailed in the past but not for specific medication advice

My GP surgery do check my feet but don't take bloods for hba1c check.

I feel that as I have had diabetes for such a long time I am now being forgotten about.

 

[Apbnab]

If it's any consolation I'm in New Zealand and I went about 2 or 3 years between appointments over covid (still had GP checks). When they finally gave me a new appointment they gave me a pump. (Not sure whether this was because they felt guilty about the delay, probably wasn't, but it was a pleasant surprise.)

Gosh I dream about having a pump, still on MDI here.

 

[EllieM]

I feel that as I have had diabetes for such a long time I am now being forgotten about.

Are you still getting eye checks?

I would tell your GP and ask for an hba1c because you presumably haven't had one for 3 years? Diabetes does change over the years (54 years here) so you definitely need to be seen. Unfortunately I don't know who you need to complain to in the UK to get an appointment.

As for the pump, eligibility rules are different in NZ. I got one because lantus didn't agree with me and I was getting too many hypos. (Lantus is the only basal insulin here.)

In your position I'd look up the pump eligibility rules and make a case whenever you finally get your appointment.

3 years without an hba1c is outrageous, I was still getting basic checks such as that from my GP while my clinic was ignoring me so I wasn't too bothered.

Good luck

 

[becca59]

I have yearly appointments, the last 5 have been by phone. Started during covid but continued. All blood tests done at the Gp and shared. The reason being that they look at my Libre results and am assessed as having good results and low down in the need for a face to face. During these calls-always with my actual consultant-I am reminded to email the DN team if I have any issues or problems. Which I have done in the past. All problems and indeed insulin changes dealt with within 24 hours. Next appointment in March I shall have a face to face as I have a new consultant and he wants to actually meet me. I live in Leeds and we have a unit attached to one of the hospitals. In the 11 years I have been a patient I have nothing to complain about. When I read about peoples experiences here on the forum, it shows the inequality and postcode lottery across the country. Which in many areas is woefully inadequate.

@Apbnab I would apply to change to a different area. Like me, you may be able to attend to a lot of your care by phone/email but with an option for face to face when absolutely necessary. 100 miles is nothing for good care. You wouldn’t be doing it every week.

 

[Nicola M]

If you’ve previously been well controlled and have no issues that you’ve rang them for recently they probably don’t think you need an appointment urgently so you’re at the back of a very long list not that it makes it any better as 3 years is a long time to go without having any sort of checks done. As my control is much better my consultant doesn’t request to see me for 9-12 months although when I last went he said 9 months and my next appointment wasn’t until 13 months later (this February).

I’d see if at the very least your GP can get you a HbA1c done, don’t see why they shouldn’t be able to do that for you and look into changing hospitals if that’s what you believe is best in your circumstances.

 

[Grant_Vicat]

Thanks for your reply

I have asked why I haven't had an appointment, they just say I am on the waiting list to see my consultant

I don't have a DSN I can chat too, there is a dietician who I have emailed in the past but not for specific medication advice

My GP surgery do check my feet but don't take bloods for hba1c check.

I feel that as I have had diabetes for such a long time I am now being forgotten about.

It might pay you to contact PALS on your hospital website, telling them about your concerns and apparent abandonment. I have found this really effective and has allowed me to stay with "the devil I know" for years in each hospital. I hope somebody listens to you soon!

 

[M80]

If you are not linked to anyone at all by either doing hbac1 there or electronicly ( the libre that shares via a hospital code to the clinic ) this is so so disappointing. How can we feel safe in a system like that? It’s when you are not ok you need that routine appointment so it can be picked up early enough to get support. During Covid my GP did my hbac1 as I asked if they were ok to do so. It is not safe to let type 1 diabetics be forgotten in a system. Best of luck!