# Pump Panel say No



## Pigeon (May 3, 2017)

My DSN was taking my case to the local pump panel which met at the start of April, hadn't heard anything so I chased her and she rang me back today. Apparently if the outcome is a "no" they don't feel the need to get in touch! 

I'd asked to be considered for a pump on the ground that I can't get my basal right overnight. I'm on half unit pens and only take 1.5 u levemir at night and 9.5u in the morning. There's a massive dawn phenomenon and I wake to levels of 14. However, if I take 2u at night I have a nightly hypo. Which is what I was doing for years until I got my Freestyle Libre and saw a low everynight at 2am. I've been to see the dietician and DSN, kept diaries and used their CGM and some things got a bit better but the overnight we couldn't see how to sort without a pump as a 0.5u increment is just too big.

However, my HBA1c is 52 so I'm doing ok overall, hence the panel saying no. Apparently my consultant has written to the CCG recommending  a pump, but as I read it if they don't classify me as meeting the NICE guidelines then it'll probably be another "No". I did point out to the DSN on the phone that there was more to NICE than HBA1c and I would feel that having  a nightly hypo was affecting my quality of life and she said she would mention it to the consultant, but I talked about this at our last meeting so I don't really feel I'm getting anywhere.

In the meantime I'm trying to split my levemir more evenly in the hope that might help as the 1.5u is obviously running out in the middle of the night. I started a few weeks ago with 6u in the morning at 4u at bed, but found my daytime levels are creeping up throughout the day so I'm having to increase my morning dose and decrease the bedtime dose, which is how I ended up at the split of 9.5&2 about 5 years ago.

Frustrating


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## grovesy (May 3, 2017)

Sorry to hear you have been turned down.


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## Northerner (May 3, 2017)

Grrr!!! You do get the impression that they really don't understand how it all works  Might INPUT be any help, or have you tried them?


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## Pigeon (May 3, 2017)

I mentioned INPUT once to my consultant and she said "well they're sponsored by pump companies so obviously they recommend them to everyone" so I'm not really sure what help it would be to talk to them...? Might print out the NICE guidelines to take to my next appointment (June) with me as they seem a bit fixated on the 8.5% criteria.


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## Pumper_Sue (May 3, 2017)

Pigeon said:


> I mentioned INPUT once to my consultant and she said "well they're sponsored by pump companies so obviously they recommend them to everyone" so I'm not really sure what help it would be to talk to them...? Might print out the NICE guidelines to take to my next appointment (June) with me as they seem a bit fixated on the 8.5% criteria.


INPUT are not sponsored by pump companies they are a charity.
If your consultant has recommended a pump then your CCG can not refuse you funding end of storey.


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## Pigeon (May 3, 2017)

"If your consultant has recommended a pump then your CCG can not refuse you funding end of storey." According to the IMPUT website that's only the case if you meet the NICE criteria- which my cloinic seems to think I don't. That's how i read it, anyway

*"If you meet the NICE criteria* and your consultant recommends pump therapy, you have a right under the NHS Constitution to access it on the NHS.

*If you don’t meet the NICE criteria* but you do fall under recommendations from the Association of British Clinical Diabetologists (ABCD), your clinic will need to make a strong case for you to be granted funding"


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## Pumper_Sue (May 3, 2017)

Ah but you do meet the criteria .......... your quality of life is being badly affected, guidelines are that just guidelines. If you give up you wont get a pump, in life you need to fight for things. Bottom line is there is a massive cash shortage(nothing new) so any chance to say no then it will be taken. Very few are handed a pump on a plate so fight for it.


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## Ljc (May 4, 2017)

Sorry to hear you've been refused a pump.  Fight for it, I know you shouldn't have to. an old but true saying is' The squeaky wheel gets the most oil' I doubt very much if the people who decide such matters have any clue what you're going through nor the worry.


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## Hazel (May 4, 2017)

Or as we say up here - he who shouts the loudest, gets.

Certainly your night time hypo are a worry.

Good luck to you


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## SB2015 (May 4, 2017)

It took me two attempts to get my pump, but it was before the set up of CCGs.
On the first refusal, I asked for the reasons in writing.
I then kept records and evidence to address each of the issues that they had raised and asked for another appointment, at which I presented this.  Don't give up.


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## Northerner (May 4, 2017)

Pigeon said:


> I mentioned INPUT once to my consultant and she said "well they're sponsored by pump companies so obviously they recommend them to everyone" so I'm not really sure what help it would be to talk to them...? Might print out the NICE guidelines to take to my next appointment (June) with me as they seem a bit fixated on the 8.5% criteria.


INPUT, as @Pumper_Sue says, are not sponsored by pump companies, and for as long as I've known about them they have been really good at helping people get pumps - they know all the little 'blocks' that some places put in the way so they can refuse one, and how to address them  It's nonsense to use the HbA1c as some sort of major block as it's probably one of the least relevant things when discussing possible needs for a pump. The whole point about pumps is how you get to that HbA1c and what difficulties you encounter - the whole 'quality of life' thing, and this is clearly what affects you. Someone can spend half of each day high and half hypo and get a good HbA1c, which renders it meaningless in terms of day-to-day control 

Go for it, and make them work for their money instead of giving you lazy responses!  Get in touch with INPUT and see what they say, you have nothing to lose, and they will help you address the sections of the guidelines that they are trying to use against you  My consultant always said that he would much prefer that pumps went to people who knew what they were doing and why they would help - and were prepared to do the work required to make them overcome the problems, which clearly applies to you!


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## Steff (May 4, 2017)

Sorry to hear you were refused Pigeon


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## everydayupsanddowns (May 4, 2017)

Pigeon said:


> I mentioned INPUT once to my consultant and she said "well they're sponsored by pump companies so obviously they recommend them to everyone" so I'm not really sure what help it would be to talk to them...? Might print out the NICE guidelines to take to my next appointment (June) with me as they seem a bit fixated on the 8.5% criteria.



Sorry to hear this was their response. INPUT very much do not recommend pumps for all, neither do they recommend CGM for all. They are about trying to get people access to the technology they are supposed to have under the guidelines. There was a recent study (REPOSE) which clearly demonstrated that pumps-for-all does not work. People need education, support and motivation to make pump therapy work. Someone like you who has pushed MDI to the very limits and can clearly see that it is not able to successfully manage your BGs overnight is an ideal candidate.

NICE's first recommendation under TA151 (the pump technology appraisal) concerns hypoglycaemia. One can assume this is the first recommendation because that is where the evidence is strongest.

The second recommendation concerns lowering a high A1c, but pumps have a really good record at resolving problematic hypoglycaemia. (to quote the guidance: _For the purpose of this guidance, disabling hypoglycaemia is defined as the repeated and unpredictable occurrence of hypoglycaemia that results in persistent anxiety about recurrence and is associated with a significant adverse effect on quality of life_)

Keep pushing!


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## trophywench (May 4, 2017)

I got mine, majorly, because of that precise fear of hypos, and the fact that my consultant and DSN made much of it to the people that they needed to make much of it, to.

If consultants and DSNs are not prepared to use psychology when dealing with bean counters, then they will fail!  Because it IS their failure, not yours.

INPUT INPUT INPUT.


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## pottersusan (May 4, 2017)

Pigeon said:


> "If your consultant has recommended a pump then your CCG can not refuse you funding end of storey." According to the IMPUT website that's only the case if you meet the NICE criteria- which my cloinic seems to think I don't. That's how i read it, anyway
> 
> *"If you meet the NICE criteria* and your consultant recommends pump therapy, you have a right under the NHS Constitution to access it on the NHS.
> 
> *If you don’t meet the NICE criteria* but you do fall under recommendations from the Association of British Clinical Diabetologists (ABCD), your clinic will need to make a strong case for you to be granted funding"


Keep on fighting. You don't get anywhere by accepting what you're told!

The NICE guidelines are guidelines, not the law. I don't fit any of the boxes, but now not only have a pump  but a pump with CGM sensors 'cos I'm 'clinically exceptional.


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## Pigeon (May 4, 2017)

Thanks all for your encouragement. I must admit I was feeling a bit defeated yesterday, but I will fight on. It's a bit frustrating because I was seeing a DSN and dietician who I felt really "got it" and could see how hard I was trying, but they don't do pumps. So they referred me on the the pump nurse and it was like starting again, she hadn't read my notes, didn't listen at all, went off on tangents and patronised me with things like telling me off for not checking my BG 15 mins after a hypo, because this could be dangerous for driving, and I pointed out that the hypo was at 10am on a work day and I wouldn't be driving til 5pm, but she just kept spouting textbook stuff at me. 

My consultant, on the other hand, talks to me like an adult, she knows I'm a scientist and like evidence-based things. So I think I'll do another Libre sensor with lots of basal tests before my consultant appointment next month, and point out to her all the shortcomings and waft the NICE guidelines at her. Hopefully the CCG will have responded by then and I can ask what justification she put in her letter to them and how they have responded. Thanks for setting the record straight about INPUT, don't know where the myth about funding from pump companies came from!

I suppose my deep down worry about making a lot of noise to get what I want is what if I got a pump and I still can't get it right? But I'll never know unless I try! Will keep trying...


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## pottersusan (May 4, 2017)

Pigeon said:


> Thanks all for your encouragement. I must admit I was feeling a bit defeated yesterday, but I will fight on. It's a bit frustrating because I was seeing a DSN and dietician who I felt really "got it" and could see how hard I was trying, but they don't do pumps. So they referred me on the the pump nurse and it was like starting again, she hadn't read my notes, didn't listen at all, went off on tangents and patronised me with things like telling me off for not checking my BG 15 mins after a hypo, because this could be dangerous for driving, and I pointed out that the hypo was at 10am on a work day and I wouldn't be driving til 5pm, but she just kept spouting textbook stuff at me.
> 
> My consultant, on the other hand, talks to me like an adult, she knows I'm a scientist and like evidence-based things. So I think I'll do another Libre sensor with lots of basal tests before my consultant appointment next month, and point out to her all the shortcomings and waft the NICE guidelines at her. Hopefully the CCG will have responded by then and I can ask what justification she put in her letter to them and how they have responded. Thanks for setting the record straight about INPUT, don't know where the myth about funding from pump companies came from!
> 
> I suppose my deep down worry about making a lot of noise to get what I want is what if I got a pump and I still can't get it right? But I'll never know unless I try! Will keep trying...


A pump is not an easy option, as I think most pumpers will agree. It certainly isn't a magic bullet, but with determination a pump can really make a difference. I've been pumping for nearly four years now and I don't always get it right. We are all human and we are all different. There is no 'one-size fits all' with diabetes! This forum wouldn't exist if we were all the same!


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## Ljc (May 4, 2017)

Don't ever give up Pigeon.  Do your research and use your scientific brain against those who should be helping you but are doing the exact opposite.
I can't help with the pump,


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## everydayupsanddowns (May 5, 2017)

I think there was a time when INPUT received money from pump companies, but I'm pretty sure that all dried up some time ago.


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## everydayupsanddowns (May 5, 2017)

It's important to recognise the difference between Technology Appraisal and NICE guideline too. 

TA151, from what I can tell, carries more legal weight. If your clinic say you qualify, the money must be found. Guidance can be ignored, but if you meet the pump criteria according to your Dr, then the CCG have to fund it.


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## HOBIE (May 5, 2017)

The Libre is a really good tool to find out patterns etc.  Really good luck & keep trying


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## m1dnc (May 6, 2017)

everydayupsanddowns said:


> It's important to recognise the difference between Technology Appraisal and NICE guideline too.
> 
> ..... if you meet the pump criteria according to your Dr, then the CCG have to fund it.



That is my understanding too. Keep the pressure up Pigeon! When my CCG sat on my application for funding for my pump replacement for way more than six months last year, I emailed my DSN and suggested that it might be time to take this up with my MP. Within two days she emailed me back with approval. Maybe a coincidence, but.

A few years ago my consultant commented that some of the people that handle these things within the NHS bureaucracy can't even spell 'diabetes'. A bit harsh, but it must be very frustrating for the clinicians. I suspect though in your case that it is the latter who are not making enough effort for you.


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## HOBIE (May 7, 2017)

Keep shouting & good luck . You wont regret it


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## Pigeon (May 7, 2017)

Thanks all. Turns out the letter from the consultant hasn't been sent to the CCG yet- got a letter saying she will fill out the form with me at my June appt, so I will go armed with evidence and also ask what was taken to the pump panel as I'm not sure the correct points were made. Sadly though, she says in the letter she's retiring in June, so I'll probably have to start again with another consultant after that. Just when I felt I might get somewhere!


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## HOBIE (May 7, 2017)

Still a good chance then !   Good luck


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## SB2015 (May 8, 2017)

Pigeon said:


> Thanks all. Turns out the letter from the consultant hasn't been sent to the CCG yet- got a letter saying she will fill out the form with me at my June appt, so I will go armed with evidence and also ask what was taken to the pump panel as I'm not sure the correct points were made. Sadly though, she says in the letter she's retiring in June, so I'll probably have to start again with another consultant after that. Just when I felt I might get somewhere!



Can you find out when the next pump panel is?  It would be good to know that that her submission on behalf of you does not get lost in the change over.   It may also be useful to get the DSN involved if they are continuing.  We had to get a tick from consultant, Dietician and DSN before it would go to the panel.  They will want o know that you can make effective use of the technology so Your gathering of evidence should all help.


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## trophywench (May 9, 2017)

More recently trained/appointed consultants are FAR more likely to be much more pro-pump than older ones - in my experience, anyway!


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## HOBIE (May 10, 2017)

Pigeon said:


> Thanks all. Turns out the letter from the consultant hasn't been sent to the CCG yet- got a letter saying she will fill out the form with me at my June appt, so I will go armed with evidence and also ask what was taken to the pump panel as I'm not sure the correct points were made. Sadly though, she says in the letter she's retiring in June, so I'll probably have to start again with another consultant after that. Just when I felt I might get somewhere!


Good luck Pigeon ! Life is not meant to be easy


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