The latest in my neverending story

[AlisonM]

I had another HbA result of 83(9.7), the last just over a month ago was 74(8.9). Neither the surgery, nor I, despite repeated calls and emails have had any response from the clinic since last October (not counting the retinopathy thing two weeks ago (different staff, same space)) which is deeply worrying. So today I wrote a letter directly to the consultant I've been seeing explaining my concerns and the issue with the Gliclazide along with the need for guidance on what alternatives remain. I made it clear that even though I've escaped any serious consequences so far, that isn't going to continue if I can't get my numbers down. I also made it clear, politely, that I'm doing my bit and my doctor is doing hers (quite an achievement that is in itself), we need input from them. I asked for someone from the clinic to contact me, or my doctor asap to advise. I cc'd the doctor too.

Let's hope that gets some action.

A number of folk who attend that clinic* have reported problems lately getting responses from the clinic so it's not just me and I've heard rumours they had to bring in a consultant from Edinburgh to help with the backlog. It seems to be getting worse though, the DSNs aren't returning calls, even from other NHS professionals. No-one knows what's happening, even the bush telegraph which is faster than light up here has nothing, the jungle drums are silent on the subject**.

*Four of my colleagues are T2s and two of those attend the clinic regularly. One of them is T1 and another is 1.5 like me and we're all wondering what's going on.

**One of the advantages(?) of being so long entrenched in this area (my family has been here since 1746) is that I have cousins just about everywhere and they're all inveterate gossips. They know nowt, nor do my colleagues. It's all very mysterious.

 

[Northerner]

Have you considered contacting PALS Alison? This really isn't good enough! I hope you get a response soon. I often think that I was lucky in ending up in hospital with DKA as I got put straight onto insulin and treated as a Type 1 - I suspect if I had gone in a week before I may well have ended up on all manner of treatments before getting the right one for me.

I was a wee bit worried last time I saw my consultant as he was querying the fact that my lantus was so low - it was 4 units then, now it's 2 and I'm still waking in the 4s. He did say, however that I would definitely be staying on insulin.

As you say, numbers like you have been having should really be making them sit up and try and work at it until they get it right. I hope it happens, and soon! 🙂

 

[lizabetic]

Ooo interesting you actually have another T1.5 there! Do you not currently take insulin? Is there no way for your GP to prescribe you it or somehow contact the consultant (telephone) to get him to prescribe it?

I have read that sulfonyureas damage beta cell function, though it makes sense that it would wear it out consdiering it stimulates the pancreas to release/create more insulin.

Wishing you luck anyhow.

 

[AlisonM]

Ooo interesting you actually have another T1.5 there! Do you not currently take insulin? Is there no way for your GP to prescribe you it or somehow contact the consultant (telephone) to get him to prescribe it?

I have read that sulfonyureas damage beta cell function, though it makes sense that it would wear it out consdiering it stimulates the pancreas to release/create more insulin.

Wishing you luck anyhow.

Professionals up here appear to regard T1.5s more as fast-track T2s rather than slow onset T1s and we're not routinely put straight onto insulin. My colleague is a bit further down the road than me and has struggled with her numbers from the start. Like me there was no family history of T2, but it took her three years even to get the correct diagnosis, whereas it only took me 6 months (she's a nice lady though and, umm, I'm not). I know 6 other T1.5s, including my colleague, who attend the clinic and they've all been more or less where I am now (I'm the newest inductee to the 1.5 club).

 

[SimplesL]

Hope you get some positive reaction and soon. I had a similar experience when I was being treated for an early (thankfully) breast cancer last year. All sorts of miscommunication or none at all when I was supposidly going to have radiotherapy.

Like you I wrote to the Consultant & copied GP in. Result GP called me & chased them I also got a call from the consultant apologising. Radiotherpay set up and treatment completed.

By writing they can't ignor you & have to respond. Telephone is fine as long as the messages get through & they call you back. How about having a chat with your GP to see if there is another hospital that is feasible for you to go to and change consultants.

I would also go onto the hospital website as they should have details of their complaints proceedure; if no joy you could also write to your PCT & complain.

 

[AlisonM]

By writing they can't ignor you & have to respond. Telephone is fine as long as the messages get through & they call you back. How about having a chat with your GP to see if there is another hospital that is feasible for you to go to and change consultants

Unfortunately, the next nearest clinic is in Aberdeen, over 100 miles from here, after that's it's Perth also over 100 miles away. Two GPs from my surgery including my own have been trying to get through as well, with no better luck than I've had.

This letter is just the first step in escalating the process. Next stop will be the PCT and PALs.