Discharged

[pistolpete]

Received a letter a few days ago telling me I have been discharged from the diabetes clinic and my next appointment with the DSN has been cancelled. I thought it was a little strange and put it to one side to see if any more information arrived and yes I have been discharged and put on the PIFU (Patient Initiated Follow Up) its a scheme where if you need help its up to you to contact the clinic, if you dont use it within a year you will automatically be discharged back to your GP and you need to get re-refered back to be seen again.

I already have a letter saying I have been discharged, but I was just curious if this has happened to anyone else as I was expecting a appointment with my endocrinologist about going on statins and I'm not sure if this will go ahead now. Guess I will just have to chase it with the GP if the appointment dosent come through.

 

[freesia]

I was discharged back to GP care by the DSN during covid. I wasn't offered PIFU (not heard of that). I tried to argue to stay on their books with no regular appointments but a number to ring if there was a problem. I was told that they didn't do this and that i would need to see the GP and ask to be re referred. I did ring DUK and was told that type 1s should have a DSN but they were hearing now that a few trusts were referring back to GP. I do feel that i'm just left to deal with it all as the surgery nurses are nice but i'm not sure how much they know about type 1.

My GP was able to give me statins if that helps.

 

[rebrascora]

I am still getting appointments with the consultant although they gradually get further apart. They have supposedly been 6 monthly until now, although nearer 8-10 months in reality. I am coming up to 5 years diagnosed. My appointments have been telephone since Covid, but I could request an in person appointment if I felt that it would be helpful. During my last appointment, the consultant suggested he would speak to me again in "6 months" but I suggested a year would be fine as I am very confident with my management mostly, so he was happy to agree to that. In some respects I feel a bit guilty that I am taking up an appointment at all that someone else could potentially benefit from, but it is reassuring to still have my foot in the door so to speak, even if I don't need the support at the moment. I do however like to bounce thoughts and ideas off him to rationalize my own approach and make sure I am not getting anything too out of proportion and I would like to think that perhaps the consultant gets feedback from me about different approaches that work (or don't) and how I find certain insulins useful and why they work well for me. I do think that there is an element of learning from patients for them as well as us learning from them, which is important particularly perhaps from those of us who have gained more knowledge via this forum and can give useful feedback.

My clinic do have a helpline where you can ring and leave your details for a call back, but to be honest the advice I have got from using it was not overly helpful and I worked out my own strategies for fixing or living with the problems I was experiencing.

I don't think I have a named DSN and I wouldn't know who to ask for, if I needed them. I seem to be very lucky that I always get to see/speak to the consultant himself apart from my second appointment after diagnosis, when I was shown in to see someone who I can only assume was a junior registrar and seemed to know very little. She was unable to answer my questions so she headed off to see the consultant who then agreed to see me and responded to my queries in person. Of the two consultants at the clinic I learned (at my DAFNE course) that the other one whom I have never seen, is much more highly respected by the staff (they literally worship him for his dedication to getting the best for his patients), but I have developed a really good working relationship with my consultant and I certainly feel very privileged to be on his patient list, so goodness knows how good the other consultant is!!

 

[Bruce Stephens]

I tried to argue to stay on their books with no regular appointments but a number to ring if there was a problem.

That's more or less what I have (with most other people with diabetes in this area, I guess). I have contact information, though if I wanted an appointment I'd need a referral.

 

[Robin]

I was discharged back to my GP about 3 years after diagnosis. I had to ask for a re-referral several years later when I wanted to get the Libre prescribed (before GPs could prescribe it) and it took time, but I did get an appointment and got the Libre. Since then, I’ve had two annual phone call appointments from the hospital clinic, but then was sent an appointment for a face to face, in July this year. This was then cancelled by the hospital and rearranged for Feb 2024! I’m not bothered, at the moment I don’t really need any input from them, but it would be nice to keep a foot in the door, bearing in mind how long it took to get the re-referral when I needed it.

 

[nonethewiser]

Suppose it's one of many good reasons to be on a pump as you won't get discharged from hospital clinic, gp surgery or likewise wouldn't have a scooby about pumps or what they entail.

 

[Bruce Stephens]

Since then, I’ve had two annual phone call appointments from the hospital clinic,

Once when I had a diabetes review at the GP one of the DSNs was present (they visit the GP surgeries once a month). Otherwise, like you I was referred back for Libre (so just for that one group thing because they'd decided to offer it to me, though it's possible other people there had been referred back for more appointments).