Referral Waiting Times

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ImogenF

ImogenF

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Relationship to Diabetes
Type 1
Hi everyone, I am hoping to try and establish how long is acceptable to wait for a Type 1 diabetes referral to go through. I was under the Sheffield team until September last year and have been referred through my GP to Manchester hospitals - and am still yet to hear anything. I've chased it with my GP and they provided a letter dated from January that I should have heard something by early March. I've been given a number to call to chase it but it just rings for 5 mins then cuts out every time I try it. I've also tried ringing the hospital switchboard but when I get through to diabetes it just goes to a voicemail. I am getting increasingly concerned that I have had no specialist care or treatment for 9 months now :(. I know Covid has made everything much longer, but this feels quite ridiculous now, being left with no support on controlling my diabetes at all. Has anyone else experienced something similar or have any recommendations on what to do? Thank you 🙂
 
Hi and welcome to the forum.

Sorry to hear you have been left in limbo whilst changing hospital clinics. Can you give us a bit more info as to how long you have been diagnosed and how you manage your diabetes? ie MDI or a pump? Do you have Freestyle Libre or other CGM?
I think most people who have been diagnosed a few years would be on annual hospital appointments so this may mean you would not be a priority for the new clinic but obviously if you are relatively newly diagnosed then that makes your need for support more pressing.
Unfortunately diabetes clinics have been badly hit by the Covid pandemic. Specialist staff have been required on the wards more but also it seems that Covid has triggered more incidences of diabetes, so the clinic workload has increased dramatically but with no extra staff. I know my consultant, when I spoke to him in Feb. was very aware that they were unable to provide the care and support some people need although thankfully I personally have been able to get the knowledge, support and advice for myself here on the forum so it has not been a problem for me, but I can totally understand you being very apprehensive, about not having a safety net.

I assume the letter to the GP from the clinic in January was accepting you as a patient so you are hopefully on their books but just not yet got an appointment. Is it possible to email them if they aren't answering the phones? There may well be an email address on that GPs letter if you don't have one. I imagine the staff have had to deal with some very irate patients and may well not be answering the phones as a result. I certainly find that emailing my GP through the Ask My GP system is a much more efficient service than trying to ring for an appointment, so emailing the clinic is worth a try if you can get an address.

Are there particular issues that you are having difficulties with that you need help with at the moment or is it just simply the concern about being in limbo and not having support if you need it? Not belittling that in any way as it is a very valid concern.
Was the number you rang at the clinic, the helpline? My clinic has an answering machine helpline where you leave a message with your name, date of birth and telephone number and a description of the problem and someone rings you back in a day or two. I don't know if every clinic has a similar service but might be worth trying if you haven't been out through to something like that.

Another option might be to ring the Diabetes UK helpline number at the top right of this screen and see what they suggest.
 
ImogenF said:
I have had no specialist care or treatment for 9 months now :(. I know Covid has made everything much longer, but this feels quite ridiculous now, being left with no support on controlling my diabetes at all. Has anyone else experienced something similar or have any recommendations on what to do? Thank you 🙂
Click to expand...
Only 9 mths wow lucky you 🙂 I have had no diabetes care for over 4 years.
1st encounter will be next week with a consultant f2t.
My advice to you is learn what you can from the forums and do your own research. It's your condition so bottom line is learn to manage it yourself as no one else will.
If you want to find out the waiting times ring PALS at the hospital you want to go to. 🙂
 
rebrascora said:
Hi and welcome to the forum.

Sorry to hear you have been left in limbo whilst changing hospital clinics. Can you give us a bit more info as to how long you have been diagnosed and how you manage your diabetes? ie MDI or a pump? Do you have Freestyle Libre or other CGM?
I think most people who have been diagnosed a few years would be on annual hospital appointments so this may mean you would not be a priority for the new clinic but obviously if you are relatively newly diagnosed then that makes your need for support more pressing.
Unfortunately diabetes clinics have been badly hit by the Covid pandemic. Specialist staff have been required on the wards more but also it seems that Covid has triggered more incidences of diabetes, so the clinic workload has increased dramatically but with no extra staff. I know my consultant, when I spoke to him in Feb. was very aware that they were unable to provide the care and support some people need although thankfully I personally have been able to get the knowledge, support and advice for myself here on the forum so it has not been a problem for me, but I can totally understand you being very apprehensive, about not having a safety net.

I assume the letter to the GP from the clinic in January was accepting you as a patient so you are hopefully on their books but just not yet got an appointment. Is it possible to email them if they aren't answering the phones? There may well be an email address on that GPs letter if you don't have one. I imagine the staff have had to deal with some very irate patients and may well not be answering the phones as a result. I certainly find that emailing my GP through the Ask My GP system is a much more efficient service than trying to ring for an appointment, so emailing the clinic is worth a try if you can get an address.

Are there particular issues that you are having difficulties with that you need help with at the moment or is it just simply the concern about being in limbo and not having support if you need it? Not belittling that in any way as it is a very valid concern.
Was the number you rang at the clinic, the helpline? My clinic has an answering machine helpline where you leave a message with your name, date of birth and telephone number and a description of the problem and someone rings you back in a day or two. I don't know if every clinic has a similar service but might be worth trying if you haven't been out through to something like that.

Another option might be to ring the Diabetes UK helpline number at the top right of this screen and see what they suggest.
Click to expand...
Hello, thank you so much for your detailed reply and kind words!

I have been diabetic since I was 6, so 18 years, and am currently on MDI (novorapid and tresiba). I’ve had a freestyle libre since February 2021.

That makes a lot of sense re the less regular appointments, I’d been used to 4-monthly appointments (although none in person since January 2020!) so have just been getting concerned now it feels so long. Hopefully I’ll be on the waiting list, albeit further down. The letter I’ve received is just outlining where I should be referred to and that it’s “being reviewed”. At this point it also said I should contact them if I haven’t heard by the 10th March, but this number as I said doesn’t ever get you through to someone and just cuts out. I was hoping to find an email but haven’t had any luck with that, thank you for the suggestion though.

No major problems, I’ve just been struggling with some spikes and it would have been great to discuss diet/exercise/lifestyle with the right people, but I can see that this forum will be a good support base for these things. I’ve just felt like I’ve been left with not even a nurse to call or anything, I have always been quite proactive with my diabetes management but I’ve always had specialist care and support to fall back on should I need it - even if just to replace supplies etc.!

I may wait a little longer and keep trying the number / hospital switch board to see if I can get anywhere.

Thanks so much! 🙂
 
Pumper_Sue said:
Only 9 mths wow lucky you 🙂 I have had no diabetes care for over 4 years.
1st encounter will be next week with a consultant f2t.
My advice to you is learn what you can from the forums and do your own research. It's your condition so bottom line is learn to manage it yourself as no one else will.
If you want to find out the waiting times ring PALS at the hospital you want to go to. 🙂
Click to expand...
Thanks, I agree we are the best ones to manage it as we know our diabetes best! I just want to make sure I’m having the right tests / care at some point (or even to have it confirmed I’m on a waiting list!). I’ll have a look at PALS thank you.
 
Sorry to hear that you haven't got confirmation of being on the new hospital's list and that you can't get an email address. That seems crazy in this day and age!
I think it is unlikely that you will continue to get 4 monthly appointments as that is definitely unusual, so it maybe necessary to adjust your expectation a little. I am on 6-8 monthly with 3 years since diagnosis but to be honest I would be fine with annually or even every 2-3 years provided I could ring and ask if I needed help with something. Libre and this forum have been amazing though in helping me manage my levels well and improving my knowledge and confidence.

Great that you have Libre. How are you finding it?
Are the spikes something that the Libre has identified or something that have just started happening recently. You do sometimes wonder if ignorance was bliss when we were finger pricking and just seeing the result before the next meal rather than the spikes which Libre now shows us happened between those finger pricks. Timing of your bolus insulin is usually key to reducing spikes from food. ie pre bolus timing. The standard advice of 20-30 mins just doesn't really go far enough for many people at breakfast time particularly. I used to need 75 mins prebolus time at breakfast with Novo(not so)Rapid 🙄 otherwise I would spike up to mid teens and then come crashing down later. I now use Fiasp which is a bit quicker but I still need about 45mins prebolus at breakfast and about 20 mins at other times of day but it also depends on my starting reading... if I am a bit high it will need longer, if I am in the 4s it will need less.
I am not suggesting you try prebolusing 45mins in advance of breakfast yourself, but cautiously try increasing your current prebolus time by a few mins every day until you find the right timing for your body. I also find that injecting my bolus insulin before I get out of bed makes a big difference because my liver releases glucose as soon as I get out of bed and causes my levels to rise. Once this happens my breakfast bolus is fighting a rising tide and it has to work harder and is less effective. Obviously, if you go for a run in the morning or something then this would not be a good strategy. 😱

Anyway, that is just some of the possible strategies for tackling spikes but if you can give us more detail about those you are experiencing, we can suggest things to try. Not everything will work for everyone. You have to experiment and see what works best for your body and the insulins you have.
 
I am a recently diagnosed [about 5 weeks ago] type 2 myself. But my referral waiting times are:
  • Eye Clinic: just over 3 weeks from referral
  • Podiatrist: just over 3 weeks from referral
  • Diabetic Clinic: Seriously backed up from COVID and triaging for the most urgent cases. This is the one occasion I hope I am at the back of queue
  • Dentist: over 3 months, but managed to convince them it was urgent and got an appointment in 2 months
 
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