At a complete loss

[tori2212]

Hi all, I'm reaching out for advice, because I feel I need to make a change and I know that i can't be the only one who's felt like this.
I've been a diagnosed type 1 for the past 3 years, the first year I was determined to not let it change my life, and control it, initially my diabetes care team were amazing. Having said that the next 2 years have been very different, I grew fed up my and my management lapsed, within the last 6 months I have received treatment for depression, however, this treatment was questionable, I don't feel that it was truly resolved, however I figured that the way I was feeling was directly linked to my diabetes management (through my own research) and am working actively to resolve.
I just feel at a complete loss as to where I turn for help with T1, my GP surgery won't touch me because I'm a T1 and they only deal with T2.
And I haven't seen my diabetes care team in a year because they keep cancelling my appointments - reading up, I seem to be missing out on a lot of things, I've never been on a "carb counting session" I learnt off the internet, how often should I have a Hba1c? It's been a year since my last one - please any advice to help me help myself. I know the NHS is under massive stress and I certainly don't want to be a burden, but I kind of feel forgotten and out of the loop, I'm responsible for my own motivation and care. I live on my own, am single. And my family are clueless about T1 so I don't even bother talking about it to them. Many thanks x

 

[Lenah_]

HbA1C ought be done quarterly, according to my GP. Have you tried just getting a new doctor? Maybe ask for a referral to an endo?

And I'd ring and harass the diabetes clinic until they see you. That's shocking they haven't yet and a poor job they're doing with you. Sometimes you just have to stand up for yourself and demand what you need. They're meant to be providing it and are derelict in their duties. Call them on it!

 

[zand]

As a T2 my HbA1c s are done annually.

 

[Freema]

most type 2´s have a HbA1c every 3 month at the beginning... but a type 1 need much more help and support right from the start... it is really iresponsible that a GP and diabetic nurses or hospital leaves a rather new type 1 so much alone on his own.... so iresponsible , I think someone ought be fired for that " not taking responsibillity for educating and supporting a patient with such a servere disease/condition"... what kind of a society is that...

 

[therower]

Hi @tori2212 . Welcome to the forum. There are a whole host of fellow T1 diabetics here who will be able to offer advice and support. Your current situation isn't right and I suspect you might be someone who is quite passive by nature ( apologies if I'm wrong ). HbA1C tests, in your current position every 3 months, as time goes by you may need a test 6/12 months depending on your control and previous results.
Carb counting course, personally I feel everyone should be offered a course within 3 yrs of diagnosis ( courses are not practical during the honeymoon period ). Online courses are ok but to really benefit from carb counting a live course is essential.
NHS!!!!!!!! It's there for US. T1 isn't are fault. The NHS works in a very simple way. The louder you shout, the more they listen. People are in less need of the NHS than you but because they shout and complain a lot louder the NHS panics and gives them what they want. I know this from experience. Next time they cancel appointment say " NO I will be there at the time given and will wait to be seen" at this point enquire how do you make an official complaint making sure to get the name of the person you are talking to. Remember stay calm and pleasant, that really puts the pressure on people.
Keep posting here we're all family.

 

[catapillar]

You should be getting an annual review at minimum. If you haven't had this at the hospital call them to get an appointment set up. If you get no joy that way go to see your GP, they should be able to carry out the annual review. They might not be able to do anything useful with the results but they will be able to do a referral.

Here's some info on the check you should be getting - https://jdrf.org.uk/living-with-type-1/getting-help/check-ups/