- Messages
- 28
- Type of diabetes
- LADA
I have been on a pump now for ten years. I initially started pump therapy when I lived in Holland, where they are very keen to get people onto pumps. I resisted it for years, in fact I only decided to go on a pump when I was about to move back to the UK because I knew that would mean I could continue with pump therapy if I wished, whereas I might have trouble opting for a pump in the UK due to the postcode lottery of funding attitudes here. I was very pleased I had made the change; not only did it initially improve my HbA1C and all that, it made life one hell of a lot easier and helped to reduce the number of and management of hypos. I initially moved to Northumberland in 2010. I had to change pumps - from a Cosmo to an Accu Chek Combo - which is better because of the Bluetooth meter, but which is not the easiest of menus to find your way around - oh well. Things did not go especially well in Northumberland as far as my stats were concerned. A visit to the pump clinic in Newcastle took all day and I would often get there to find that the person I was booked to see had no idea how to operate the pump to retrieve my data so it was frequently a waste of time, and might be months before I saw anyone able to offer useful insight and advice. My diabetes has never been well controlled, and I was not able to get the help I needed to achieve any stability. In 2014 I moved to Norfolk. I'm still a fair way from the only pump clinic in the entire county, but was initially impressed with the level of commitment to help me get on top of things, however, I have not got on top of things. My HbA1C is still not great and getting the pump set up in a way that works for me has never proved to be possible - I just do not fit in the box, and getting a handle on what is going on has just been impossible from the very first diagnosis in 2000 (initially told I was Type 2, after the meds for that made me very ill they put me on insulin and I was later diagnosed as LADA). My overall health is not too bad considering. I used to follow a low-carb diet, and felt quite well despite my poor stats, but I was persuaded to eat more 'normally' when I went on the pump, and although I have so far not developed any major complications, since being on the pump I have slowly and steadily gained weight at the rate of about 1 kilo per year. (Doesn't sound much, but I only weighed 53 kilos at the start and now weigh 63 so that's 20% of my body weight). I am now being told that my poor BG statistics mean that the consultant cannot justify the funding for my pump, and that when the guarantee on the current model runs out in April 2018 I will probably refused funding. At first I was very angry, because to my mind this is not a decision based on the clinical evidence that returning me to injecting will in any way improve my outcomes or stabilise my BG levels - it will just make them even harder to manage again - but is purely an issue of funding, and I think that is disgusting, but I am so fed up with feeling hounded to do countless fasts (designed to provide information with which to establish correct basal rates - except that they don't, and nobody has been able to) and being made to feel like somebody who is simply not trying hard enough, when I have honestly been trying, and trying, and trying for 17 years and am no further forward and I'm absolutely fed up with it. The other day my brother said 'Well if it's not really working maybe you might as well just give it up', and I thought that maybe he was right. Perhaps I should just go back to low-carb and jabs and do the best I can and stop fretting about it, but I wanted to ask for some other people's views. Where do I stand? Do they even have the right to do this against my will? If I decide to fight this funding decision is there anywhere I can get help and advice? and finally ... what do you think and what would you do?
