• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

"Sitagliptin isn't gonna work but stay on it for 4 months"

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

Rosiecarmel

Well-Known Member
Relationship to Diabetes
Type 1.5 LADA
Is what my DSN just said. She said she's not allowed to put me on Truclicity or Victoza until I've been on Sitagliptin for 6 months and seen the dietician which has been rescheduled for July 22nd I think. It's all to do with money which is ridiculous. She said I need to get my Hba1c done in August then book in to see her in September to be put on an injection. She said she thinks the injection will work brilliantly for me and deep down she knows sitagliptin isn't gonna work yet as she's convinced I'm probably LADA but there's absolutely nothing she can do...

Will be ringing the Careline this afternoon to talk about this as even my DSN agrees it's ridiculous and in the mean time I'm sitting with avg. readings of 14.4. She said my Hba1c being 67 is probably down to the canagliflozin and it's such a shame that I had to come off it but it made my HS flare up :(

I'm just lost now and upset that im being left to deal with high readings on my own.
 
You've every right to be extremely upset and angry, Rosie. I sincerely hope the Careline can help you formulate a plan. Basically, if the DSN is 'not allowed' to prescribe you what you need, she needs to refer you ASAP to someone who can!
 
I would not be upset Rosie. I would be absolutely bloody furious. I think this is disgraceful I really do. I echo Robin's feeling and also hope that the Careline can offer you the solution that you obviously need.
 
I agree with everything that has been said before but .......

I want to congratulate you on getting your HBa1c down to 67! With all the problems you have had with BG control that is a monumental achievement.

Well done sweetie xx
 
Rosie, you have done brilliantly in dropping your HbA1c. Be proud of your self and then....

.... ask for a referral to someone else.
This sounds like a CCG protocol that the DSN is following, but not everyone is the same.
Keep asking and pestering and they may well decide that it is easier to let you have the injections.
If this DSN is at your Practice, it may be (and I can't believe I am saying this) worth seeing the GP instead as they are sometimes more willing to bend the rules.

Whatever happens it may help if you keep records of what happens with your BG.

I am sure someon on Careline will have come across this before and have some ideas.

Let us know how you get on,
 
I'm bloody furious for you too. 'Careline' was my immediate thought - in that you need to actually speak to someone - even if they can't physically help - they can try to calm you down a bit for starters (important!) - and then point you in the right direction to get the help you need.

Which probably is - see an actual GP - preferably a full partner at the surgery if not the 'Main Man' since many more avenues are open to such individuals than are available to nurses, however qualified they are.

Daft things like pumps! - not only insulin ones - as we have discovered recently. Can't do it becomes Can do it - when a person knows his way round the system !
 
This is patently nonsense 😡 :( Would they deny someone insulin if the book said there was a cheaper drug that 'wouldn't work, but you have to be on it for 6 months'? I have never heard a bigger load of bulls**t! I hope you can get some good advice from Careline, this does not sound right at all - they need to consider the individual patient's needs, not some set-in-stone accountant's idea of the way things should happen!

I'm livid on your behalf Rosie! 😡 :(
 
I hope that Diabetes UK Careline can suggest something. Sadly, I doubt that referring you to another presriber would make much difference, as they will have to act within the same prescribing guidelines. However, I hope there's a way round the problem. In the meantime, you could check up on NICE guidelines and see how you fit the various criteria.
 
This is madness Rosie and I'm fuming for you. I'd definitely get in touch with the Careline and then insist on seeing a GP as soon as possible, this is your health they're messing with. Oh and when they do put you on insulin, insist on MDI as a minimum, moving to basal/bolus as soon as you can.
 
I hope you get some help soon Rosie. This is a mad state of affairs and so frustrating. You should be given the correct medication for you regardless of guidelines. Maybe you could contact PALS (patient advice and liaison service) if you don't make progress with careline. Good luck.
 
Fuming on your behalf. You need to speak to the organ grinder.
 
I've said it before and I'll say it again WTF!!! You can't play with peoples health because of some poxy guidelines
 
It's absolutely disgusting! What planet are these people on? Would they do the same with other illnesses? No, they wouldn't. It's like discovering you have a brain tumor & they give you paracetamol.😡
 
Having again considered your situation it might be an idea to lodge a formal complaint. Draft a letter and send it your GP, your GP practice manager, the most senior person you can identify in your CCG, forward a copy to your local newspaper and bugger it send one to your local MP if you have to. It might sound like a bit of an extreme gesture but I think that if you show the strength of how you feel and let's face it it is how anybody would feel faced with the absolutely ludicrous situation that they have thrust upon you then they have to reconsider this stupid, stupid thing that they are forcing you to endure. Realising that you are not prepared to back down then hopefully they will see some sense. Maybe also have a snoop round and try to find out if other GP practices in your area are indulging in such irresponsible acts to their patients. If others are not then a change of GP might be a possible solution.
 
Last edited by a moderator:
That's bloody crazy Rosie, it's like you are being denied the right treatment that you obviously need! I'd definitely ask to see someone else.
 
That is mad! What is the point on continuing something that isn't working for you when there is a possible option which will? I really hope the careline can help you get it sorted!
 
There must be a way of making a robust case for a timely intervention. Those high readings can't be helping your overall wellbeing, and surely there's a chance it could impact on your studies and results?

It's as if "let's see how sick we can get you for a spectacular turnaround,........ Maybe."
 
Please check NICE guidelines before contacting anyone. Everyone, health professionals & patients, is constrained by them, however much they don't like the situation. If you show understanding of the constraints affecting the situation, you look more professional and thus easier to help.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top