Pump Warranty & Renewal

[ad92]

Hello everyone!

Just wondering if anyone else has had a similar situation...

Three years ago my pump (AccuChek Combo) ran out of warranty and I was told by my team that they wouldn't bother applying for renewal funding because I wouldn't get it.

After discussions with my team that I was unhappy taking a pump holiday because of my lifestyle, job and previous experience, returning to injections would be disastrous, I continued using the pump out of warranty for a further three years (until July 2020) . I then had to switch to the back up pump that used to be issued many years ago with the original. I was unaware that these only had a shelf life of 3 working months and one day it just packed up. My team knew that I was using this but there was no plan in place. I have been on a pump since I was 13 and I'm now 28.

Ever since, my levels have been erratic, I am spiking hugely during the night and despite informing the team of my concerns, both via email, in person and over the phone, we aren't moving forward at all.

I was wondering if anyone had been in a similar situation and how you may have overcome/remedied both the management of your diabetes and the lack of action by your team? Even my concerns in my most recent email have been ignored and the response was just to book an appointment... in 2 months.

Any insights into similar situations greatly appreciated!
Thanks!

 

[Juicyj]

Hello @ad92

Why did they refuse you the renewal funding and what reason did they give ?

Do you have a dedicated DSN/Consultant you can speak to ?

What current regime are you using ? So insulins used etc.

I have never come across anyone who has been denied renewal funding after using a pump, it really does boil down to who your team/trust/CCG is and what policy they have for funding, but once a patient is introduced to pump funding they shouldn't withdraw this.

 

[Deleted member 527103]

Sorry to respond with more questions but if you were using an old pump, how were the single use supplies (cartridges, cannula, etc.) being funded?
If the NHS was funding these, I am confused why they would not fund a pump as, over three years, the cost of these supplies would mount up.

 

[ad92]

Hello @ad92

Why did they refuse you the renewal funding and what reason did they give ?

Do you have a dedicated DSN/Consultant you can speak to ?

What current regime are you using ? So insulins used etc.

I have never come across anyone who has been denied renewal funding after using a pump, it really does boil down to who your team/trust/CCG is and what policy they have for funding, but once a patient is introduced to pump funding they shouldn't withdraw this.

Hi Juicyj,

I haven't found anyone similar that this has happened to either.

I do indeed have a specialist DSN and consultant, however due to the pump renewal issues, although still present for appointments, it is very obvious that (with the DSN especially) the relationship is very poor now. My concerns about the relationship and attitude from the DSN to myself are dismissed each time by the consultant, to the point the consultant has denied certain things he has ever being said.

I genuinely thought that we might have had a breakthrough in our last appointment (for which there was the DSN, her junior (who I now liaise with), the consultant and a trainee. It was basically a board meeting. They agreed in that meeting that they would start the renewal process (which is now 4-5 years after it should have been), but we have been stagnant since. I agreed to a carb counting course (I've been diabetic since I was 6yrs) which they said would have to be done before they put it through, but I was never sent the details. Yesterday I sent a long email with my concerns, only for them to be dismissed again.

I am currently on Novo Rapid and Tresiba and use the Freestyle Libre 2.
I was previously using the AccuChek Combo.

I orignally went on the pump to try and regain control over levels, especially during the night, which it achieved. Since coming off, I am regularly going to bed within target range and then waking anywhere between 2 and 5am with massive spikes (up to mid 20s) sometimes, and corrections are sporadic. Sometimes they touch it, sometimes they don't. For instance, a few mornings ago, I corrected, an hour later I hadn't changed and then a further half an hour, I'd gone up another 3mmol.
They are aware of all of this but the best they could offer was an appointment for mid November.

I think their original concern with not renewing the pump was that they didn't feel it effective, however I was adamant that injections would see a deterioration.
Thinking about it now, issues started arising when I left the paediatric clinic at 18, which is now 10 years ago.

Adam

 

[ad92]

Sorry to respond with more questions but if you were using an old pump, how were the single use supplies (cartridges, cannula, etc.) being funded?
If the NHS was funding these, I am confused why they would not fund a pump as, over three years, the cost of these supplies would mount up.

Not a problem.
Yes, they continued being funded as usual, nobody had any discussions about them not being.

I think the overall aim was to enforce the 'pump holiday' that I had previously raised concerns about and said I wasn't happy with.

Adam

 

[Juicyj]

I orignally went on the pump to try and regain control over levels, especially during the night, which it achieved. Since coming off, I am regularly going to bed within target range and then waking anywhere between 2 and 5am with massive spikes (up to mid 20s) sometimes, and corrections are sporadic. Sometimes they touch it, sometimes they don't. For instance, a few mornings ago, I corrected, an hour later I hadn't changed and then a further half an hour, I'd gone up another 3mmol.
They are aware of all of this but the best they could offer was an appointment for mid November.

I think their original concern with not renewing the pump was that they didn't feel it effective, however I was adamant that injections would see a deterioration.
Thinking about it now, issues started arising when I left the paediatric clinic at 18, which is now 10 years ago.

Thanks for explaining this - from what you've said your control had deteriorated since being on a pump despite getting better control during the night - is that correct ? If this is the case then they should of got you onto a pump training course to help with the general pump management, I get training for pump management despite having used one for around 4-5 years, things can always help with some tweaking. I am pretty certain that my pump would be pulled if I didn't do my bit and keep on top of it, I have to admit that I am not complacent about having one as I worked incredibly hard to get one in the first place.

Building good strong relationships with your team is vital particularly as we are dependent on them to press the buttons, but it's probably an idea to put your past differences to one side and see if there's any chance you can get an earlier apt, I know we can ask alot of our team, but they are also guided by internal policies so having a great relationship can help pull strings when you need support.

In the meantime the key criteria for getting access to a pump again is your dawn phenomenon and the fact that your insulin regime isn't working to manage this..

 

[ad92]

Thanks for explaining this - from what you've said your control had deteriorated since being on a pump despite getting better control during the night - is that correct ? If this is the case then they should of got you onto a pump training course to help with the general pump management, I get training for pump management despite having used one for around 4-5 years, things can always help with some tweaking. I am pretty certain that my pump would be pulled if I didn't do my bit and keep on top of it, I have to admit that I am not complacent about having one as I worked incredibly hard to get one in the first place.

Building good strong relationships with your team is vital particularly as we are dependent on them to press the buttons, but it's probably an idea to put your past differences to one side and see if there's any chance you can get an earlier apt, I know we can ask alot of our team, but they are also guided by internal policies so having a great relationship can help pull strings when you need support.

In the meantime the key criteria for getting access to a pump again is your dawn phenomenon and the fact that your insulin regime isn't working to manage this..

On the contrary, quite the opposite. There was improvement across the board for the 14 years I have been on the pump. I would imagine that if there had not of been, there would have been discussions about coming off of it. I worked incredibly hard, as noted in my records to be put on to a pump and things never changed. I have consistently kept a frank and open dialogue with the team.

I have no problem with the team except for it is my DSN that appears to have the issues in terms of putting things behind them. The last appointment proved this. I am sure your pump would be pulled if you weren't doing your bit, likewise with anyone. I genuinely think, that despite my very best efforts (and I'm not exaggerating), things with the DSN

I'm not shy of a training course, I have done many over the years, and this specific NHS trust has used me as a guinea pig, obviously on my terms, for many years (GlucoWatch being one example), so I am more than willing to participate in suggested activities/courses.

Movement on to the libre was offered at a late stage and from the week that I overlapped on the libre and pump to the libre and injections, it's very apparent which was keeping better control, day and night.

 

[Juicyj]

Thinking about it now, issues started arising when I left the paediatric clinic at 18, which is now 10 years ago.

Sorry I read into this that issues here were relating to control - what sort of issues are your referring to, is it the relationship with your team ?

I am still confused why they withdrew your renewal funding as so far unless it was down to an issue with one individual they had no grounds to do this.

 

[ad92]

Sorry I read into this that issues here were relating to control - what sort of issues are your referring to, is it the relationship with your team ?

I am still confused why they withdrew your renewal funding as so far unless it was down to an issue with one individual they had no grounds to do this.

There was a lot of errors on the trust's part when I switched. I was moved to a different hospital, and there were issues back and forth with notes being/not being sent and I would often arrive at appointments only for the 'new' nurse to have no information. Anyway, I transferred back and it was OK for a while, and then I received a letter out of the blue saying there had been a multi-disciplinary meeting and that they were not renewing funding. When I brought this up face to face the DNS's actual words were 'there's no point'. The consultant agreed at this point I should have been privy to discussions before being sent a letter.

Writing this, I am starting to realise how long this particular issue has been dragging on for.