NHS Pump Problems

I am very sorry to read about the problems you are having.
Have you contacted INPUT (https://www.inputdiabetes.org.uk/)?
They aim "to help people access diabetes technology and support from the NHS – including insulin pump therapy, smart glucose meters and continuous glucose monitoring."

kusaku said:

I have heard of them but my doctor is unsure of there effectiveness fearing that it could make things worse if they tried to intervene.
I am keeping this back as a last resort at the moment.
Thankyou

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They advise and give you facts and ways to challenge decisions made... they don’t go launching in on your behalf....

It really would be worthwhile contacting them..

@kusaku - don't be afraid of being "non-compliant" and difficult with a team at a hospital that is not helping you.

I've mentioned on here a few times that in order to get a pump I refused to leave my regular clinic appointment until I'd been told they would put me forward for a pump and then at my first pump clinic appointment, I again refused to leave until I'd seen the consultant, psychologist, DSN, dietitian, etc, to ensure that I could get it all out of the way on the day.

kusaku said:

However, my happiness was short lived, turns out the appointment wasn’t with a consultant but with a pump team, where I was told I would not be getting a pump anytime soon and they didn’t even think I was a good candidate stating and I quote “An insulin pump is just another way of delivering insulin and is unlikely to help you”.

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When you are presented with a statement like this, the most important thing to do is challenge it. Remember that you have all the data relating to your condition and that the team see you irregularly. IF this is their opinion, you need them to explain a statement like that so that you have an opportunity to counter it. You should also ask them, given something like this, how they think they can help you improve your management. Only when you have their point of view can you give them full bore of all barrels in keel-hauling them (mixing my metaphors somewhat).

Good luck with your fight.

Hi @kusaku , I'd definitely agree with what @tim2000s has said above. I have learnt the hard way over the last 5 or so years that I really didn't understand how the NHS works. The battles I had with my previous diabetes team paled into insignificance once I entered Renal care - but it's the same rules for everything. There are a lot of specialists in the system (if not most) that really want to help you, but sadly there are some that just don't, for what ever reason - and this is compounded by the huge amount of red tape that exists. The decision process for a pump is pretty simple - A short list of yes/no tick boxes, created by a panel of generic doctors who are by no means diabetic specialists - and as I think you've learnt - that's your first battle - getting a DSN to tick the right boxes for you.
As a start, I would consider doing a few things.
1) Look into the NICE guidelines, to work out how you can demonstrate that you qualify - If, for example, you are excluded due to a so-called "perfect" A1c, that may be due to the sheer number of micro doses you are taking, or the excessive number of hypos you experience - both at a cost to your quality of life.
2) Speak to your GPs and research which clinics are available in the area - I was surprised at the very different outlook on pumps between mine! Also, don't be afraid to change clinics - I stayed with my previous one for many years, thinking I owed them something but once I changed it was like night and day. You owe nothing to a diabetes team that is not giving you the best tools to prolong your life.
3) Read Pumping Insulin and Think Like a Pancreas. For me, the knowledge I gained from both of these game me the confidence and knowledge to justify my pump requirement.
For me, the process I followed was
Get CGM -> Read the 2 books -> Understand my diabetes -> change to Pro-pump clinic -> Engage with the new DSN and Specialist
I accepted about 3 years of bi-annual appointments with my previous specialist of 2 sentences "Q. Can I have a pump" .... "A. No" ... and I'd wait another 6 months. Like @tim2000s says, challenge - but have the knowledge and justification, to back it up!
Best of luck, P