Hi TerriH,
I agree with Mel dCP, it really doesn't seem like you have the focussed care you really need at the moment.
I also grew up in South Wales & was diagnosed there at the age of 11yrs - although it had been missed by several GPs, resulting in severe DKA, several stone underweight, inability to walk, hair fallen out & 3 months in hospital to recover (lovely!). When I hit 14yrs, my blood sugars became an absolute nightmare with constant hypos and like you for some reason I was only being provided with the help of a DSN, who kept telling my parents & I that the insulin regime she had recently put me on was perfectly fine & just needed tweaking & for me to eat more carbs pre-exercise/exertion etc. At the time it got so severe that my Mum worked with me so closely every step of the way, making sure that I was doing everything according to the advice we were being given. Despite that, the week it resulted in 4 hypo comas overnight, so 4 hospitalisations, was when my parents drew a line under it & booked me a private appointment with the hospital consultant I should really have been seeing anyway in the nhs. He immediately changed my insulin regime onto a slightly more expensive one than the DSN had placed me on & the issue was fairly instantly resolved & he referred me for follow up appointments with him on the NHS. In retrospect it seems like a pretty drastic position to get into before the right combination of correct meds with appropriate level of diabetic care was provided.
Nowadays I do get really supportive care from my local GP Surgery in South East England, but unfortunately whilst I do get an annual appointment with my local hospital, it is a pretty poor service, which like the hospital I was diagnosed in as a child, is cash strapped & on special measures. So rather than focus on the correct approach/treatment for the patient, the focus is often on what is the cheapest option that sits on their predefined list of what is 'approved' for patients. At the moment I am pregnant however & my GP practice have supported me in getting my Ante Natal diabetic care at a different hospital which is really close but under a different health care board, which invests differently in the services they provide - it is so much better - & you can see as a team that they are so much more motivated to genuinely help their patients. It must be tough working in these hospitals that are under special measures.
So I am wondering if rather than phoning your GP, where you are stuck waiting on the line, would it be possible to walk through the door, briefly explain what you have going on & that you need a call back from a GP, who you could ask to refer you to a consultant?. Or could you manage to buy an hour appointment with that consultant privately & get him/her to refer you back to see them on the NHS?. The reason I say this is that it sounds to me like in order to get this sorted you are going to have to fight your own corner on this one to get the focus you need. It is a lot of pressure & concern on you & your husband to have to keep slightly vigilant in the middle of the night when and dangerous. So I am hoping you can get some local support as soon as possible.
