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Annual review being delayed

L

Lizzie50

New Member
Relationship to Diabetes
Type 1
Pronouns
She/Her
Long time lurker first time poster.
T1 of 50 years with family member T1 of nearly 60 years, both of us having issues with delays in our annual reviews, ie next hospital ’annual review’ has become an 18 month review.
Are any other T1s experiencing issues?
Have spoken to GP nurse who only sees T2s but he agreed to at least carry out a twice yearly HBA1C so we know where we are, unable to get NHS podiatrist appointment so paying privately to make sure feet are ok. Thankfully (touch wood) eye reviews tend to be ok.
Been advised annual reviews pushed back due to amount of new patients, is this due to patients going onto pumps?
Getting a hospital DSN appointment equally difficult/virtually impossible.
Feel totally alone, not sure where to turn.
 
Lizzie50 said:
Been advised annual reviews pushed back due to amount of new patients, is this due to patients going onto pumps?
Click to expand...
I think I heard that Covid has triggered increased cases of T1 diabetes which is causing increased demand.
 
I’m seen annually by my GP surgery nurse, who can do the basic blood tests and foot checks, and I think if I had a query she couldn’t answer she can ring a DSN for advice, but her main speciality is Type 2s.
For several years, I was discharged back to this surgery nurse for all my care, with the option to be re-referred to the hospital if I needed to. I asked to be re-referred in 2019 when I wanted to get the Libre on prescription, and by the time I got an appointment they’d all gone to telephone consultations because of Covid. I did get the Libre eventually, but it took a year from first asking, to actually getting my hands on a prescription.
Since then I’ve had two annual phone call reviews with the hospital. Then I was offered a face to face in March 2024, which they cancelled by phone with 2 days notice, I assume illness, but they said they’d fit me in again 'as soon as possible' and eventually I got a new appointment through…For March 2025!
If i felt I really needed to be seen at the hospital, ie if I wanted more or newer tech or insulins, I’d be kicking and screaming, but I’m managing to the best of my ability, and don’t think any input is particularly needed, so for me, it’s more about keeping a foot in the door, as when I asked for a re-referral after being discharged, it took months to arrange and a lot of pushing to get an appointment.
 
Hello Lizzie and congrats to you and your relative on 50 and 60 years with Type 1. So pleased you have decided to delurk and say "hello" but sorry to hear that desperation over hospital appointments has pushed you into it.
I am jusy 5.5 years down the line with Type 1 and my 6 monthly appointments became nearer 12months and those were telephone appointments since Covid and then 12 months is slowly extending too. Thess last few months my appointment with the consultant has been cancelled and reschedules at least 3 times and I don't seem to get DSN appointments, but to be honest I have learned more from people here so don' feel I am missing anything. I get my 6moonthly HbA1c check and annual full spectrum of tests including lipids at my GP practice as well as BP and foot inspection pulses and tickles, so the hospital clinic appointment is just a discussion of my Libre results and if I wanted to change insulins etc, which I don't. My current appointment date is an in person meeting with the new consultant (or one of his team) on the 24th December and I half expect that will be rescheduled too, but not overly bothered if it is. I don't really have anything I need to discuss.

As @Lucyr says, Covid has triggered increased workload for the diabetes clinics both in terms of new patients but also those existing diabetics who are admitted to hospitals as a result of severe Covid infections and need intensive support from DSNs. On top of that, they are trying to train more DSNs in Closed Loop Systems so that they can support people who already have pumps in making the changeover to HCL (Hybrid Closed Loop) I think some clinics are even delaying new pump starts in order to push this training through and get most people who are on pumps onto HCL if they want it. So yes, I think most people are seeing appointments stretched further apart.
If you have an urgent need of help, some clinics have a helpline that you can ring and leave your details and an idea of the problem you are struggling with and someone will ring you back in a day or two, but they will usually prioritize more urgent issues like recurring hypos, so I would probably only use it if you have a pressing problem.

If there is anything particular that either of you are struggling with, please feel free to ask here on the forum. If you have been lurking for a while you will likely be aware of the depth of knowledge of some of the more experienced members here.
 
Welcome @Lizzie50 🙂 Yes, my last review was a good 18 months after my previous one. I found they started to slip from annually a few years ago and prior to Covid. The ‘annual’ became 14 months, then 16, then 18.

Do you have a phone number for the hospital DSN team? Mine has an answerphone and will ring you back if you have a query.
 
Thank you so much for replying everyone, it’s nice to hear others experiences.
Since my post I’ve sent an email off with my concerns and asking for help, hopefully someone will come back to me.
 
Hello and welcome @Lizzie50

Congratulations on 50 years with T1.

My annual review has been pushed back year on year to about every 19/20 months, I have to ring to try and get an appointment it doesn't happen otherwise. I'm fortunate to have a great DSN I can contact by email or leave a message if I need advice.

Podiatry has really suffered since Covid, I pay privately due to having high risk feet as I can only access an appointment if I have a wound which isn't ideal.

I hope you get a response from the email to your clinic and can get some help and advice. It is hard when we feel alone with diabetes however long we've had to deal with it, just a few minutes of clinic support every so often goes a long way when we need to be so self reliant. This forum has helped me so much with support, advice and reading what has helped others. I hope it helps you too.
 
I’m sorry for not updating sooner, have had a lot to deal with unfortunately. Managed to get a DSN appointment for family member to at least get her onto CGM (GP unable to prescribe as we requested Dexcom as she does not have a compatible phone so needed reader), next DSN or review will still be 12 months. Thank goodness for our GP surgery who at least will continue to carry out her HBA1C bloods as well as kidney function etc (she has kidney disease). I’m attempting to manage her diabetes for her, tricky as I’m on a pump & no experience with her new insulin regime but baby steps and we will hopefully get there. Unfortunately situation is what it is, there are no appointments. I have my annual review in a couple of months and will mention then.
It’s very stressful as she is sight impaired, heart failure and kidney disease so we really want to try and get her bloods sorted to prevent further deterioration of her conditions.
 
Lizzie50 said:
It’s very stressful as she is sight impaired
Click to expand...
If she was able to source a phone compatible with libre then the libre app has a text to speech option to help visually impaired people and the size of the number on libre on a phone is way larger than you’d get on a dexcom receiver
 
Lucyr said:
If she was able to source a phone compatible with libre then the libre app has a text to speech option to help visually impaired people and the size of the number on libre on a phone is way larger than you’d get on a dexcom receiver
Click to expand...
Thank you that’s really good to know, I’ll look into that after Christmas
 
What's the lady's 'new regime' - is it anything someone here can assist you with? (takes me back some years this - Training the Trainers' !! :rofl: )
 
trophywench said:
What's the lady's 'new regime' - is it anything someone here can assist you with? (takes me back some years this - Training the Trainers' !! :rofl: )
Click to expand...
That’s so kind thank you, I’ve pinged another email off this afternoon asking for advice, I’ll give it a couple of weeks to hear but will post here if I don’t.
 
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