NHS Pump Problems

[kusaku]

Hi


I was diagnosed with type 2 diabetes about 5 years ago and diagnosed with type 1/LADA about 3 years ago after my pancreas failed.
I have since been trying to get an insulin pump on the NHS after an ex pump nurse said that it’s the right way to go.
I have been using the freestyle libre for about a year now and I have managed reasonable blood sugar control but I still think it could be better.

After 6 months of trying to get a referral to a consultant I finally got an appointment where she said yes, a pump would be ideal. It took 8 months for me to get a further response where I was finally told I would get a pump by 3rd October 2018 and I would be seeing 2 companies of my choice and the consultant about its late September 2018. I was pretty thrilled about this.

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”.

I have had trouble keeping my blood sugar flat as I have a heart condition that can cause erratic blood sugar drops, this causes problems with the Levemir and I end up with a hypo that I struggle to get out of. I was hoping that a pump would help as I could disable the flow of insulin, this would also help my constant fear of hypos. But they didn’t seem to think this was enough to warrant a pump.

I am somewhat devastated and I am unsure what to do next.

 

[Deleted Account]

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]

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

 

[donnellysdogs]

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

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]

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..

Oh, I see I have misunderstood what they do, I felt from my doctor’s description that they intervene and try to appeal the decisions made by the pump team.

I shall contact them as soon as possible
Thankyou

 

[tim2000s]

@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.

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”.

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.

 

[paulliljeros]

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

 

[kusaku]

Hi, I have gotten a reply from insight and will follow their advice to the letter.

I have also received a letter with my next pump team meeting which will be on the 9th Jan.

I am in the process of getting an appointment with my cardiologist in the hopes that he will write a letter explaining the issues my heart problems cause and the advantages of a pump.

I already went through the nice guidelines and in fact took a copy with me to the last meeting with the pump team showing that I qualified, they didn’t however show much interest in it.


I do have a sort of cgm system running using the freestyle libre as a base. I am fortunate that my dad is a skilled engineer and with some research we found that using an app called xdrip, and a device called the blucon reader I could get a cgm like system at a low cost. We expanded on this system by running the xdrip application on a smartwatch which allows me to freely check my blood suger at any time.

We have also adjusted the predictions software based on my history to warn me up to 90 minutes before it thinks I will have a hypo. This warning however can sometimes only be 15 minutes ahead of time if my blood sugar drops fast enough. ( I can give more information on this setup if anyone is interested)


As always thankyou for the help