Criteria for insulin pump

[Poosecat]

Hi people,

Sorry if this has been discussed on another thread. I've been looking into the possibility of controlling my diabetes with a pump instead of my 5 daily injections. I e been T1 for 20 years. I phoned the hospital this morning to try and make some initial enquiries. I was told that they follow NICE guidelines for allowing pump therapy. Looking at the guidelines, I can see that you need to have an a1c of over 8.5% for a sustained time OR have persistent disabling hypos.

My a1c was 49 recently - so that's too good for a pump. I have 2-3 hypos on a daily basis. They're not disabling in as much as I need help all the time, but they are disabling in as much as they're a bloody waste of time.

Could anyone advise me as to whether they have qualified for a pump in a similar situation.

Many thanks

 

[noblehead]

A consultant can make a case for you under the ABCD recommendations (for example Specific Quality of Life Issues):

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

ABCD recommends that insulin pump therapy is also considered in the following situations:
• Pregnancy
• Acute painful neuropathy or symptomatic autonomic neuropathy if
conventional treatment fails to enable adequate blood glucose control
• Hypoglycaemia unawareness
• Extreme insulin sensitivity
• Needle phobia
• Severe insulin resistance with poor blood glucose control
(especially if type 2)
• Specific quality of life issues:
– Pathological fear of hypoglycaemia
– Marked glycaemic excursions/dawn phenomenon
– Excessive number of injections for optimised control
– Impaired exercise capacity, abnormal eating behaviour or an unacceptable number of sick days
– Shift work or frequent travel across time zones
– In children: sub-optimal school performance, exclusion from aspects of a full school life; behavioural problems (for example, mealtimes); adverse impact on family dynamics

Consultant’s recommendation
Your consultant agrees you have a clinical need for an insulin pump and have the necessary commitment and skills to use the technology safely and effectively

http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/

 

[paulliljeros]

You need to look at the criteria, and there is a good chance you will be able to justify it, and whilst I understand the reasoning behind the guidelines, it is sometimes wrong to be excluded just because your A1c is in the good range. I was able to justify my pump, in part, because of micro doses and therefore the sheer number of injections, in order to achieve the lower A1c, but be wary of what reasoning you give, as, for example, if you are experiencing too many hypos, you may risk losing your driving licence. Good Luck.

 

[Poosecat]

Thank you both. Very helpful advice.

 

[Deleted Account]

The justification for my pump was to avoid hypos during exercise.
These were not disabling hypos but were making exercise a challenge ... and we all know how important it is to keep active.

However, a pump is not a miracle cure or miracle diabetes manager or miracle anything: my BG is certainly more stable than on MDI but it is hard work. The advantage of a pump is the additional levels of control that you have for micro bolus doses and changing basal. The disadvantage of a pump is, with all these additional levels of control, there is a lot that can go wrong ... and that's before you start thinking about changing your sets every 2 or 3 days.

In my area (and I don't think it is unique), you have to prove your willingness and ability to manage this control before you can go on the pump waiting list. This means going on a carb counting course where you demonstrate your understanding and keep a diary which shows you do it all the time not just when on the course. It was an investment in my time where I learnt nothing but it was not a complete waste of time because I got the pump.

"Pumpy" and I have been together for 18 months now. My BG is more stable. I exercise harder. But we are not friends - Pumpy is like one of those work colleagues who you admire for doing their job very well but you wouldn't choose to socialise with. He gets in the way, he shouts "diabetes" (being slim, I have struggled to find anywhere to hide him), I catch the tube on door handles and I have had a couple of nasty hypers when I had not correctly inserted my canula (although probably not for over 6 months now I have adapted my insertion technique).

 

[ringi]

Does your child get frighten when you get the start of a hypo? If so “impact on family dynamics”

Is the risk that you MAY get a hypo stopping you going out with your child or limiting where you can go?

 

[azure]

Does your child get frighten when you get the start of a hypo? If so “impact on family dynamics”

Is the risk that you MAY get a hypo stopping you going out with your child or limiting where you can go?

The criteria are listed above.

Do you know a Type 1 pumper who got a pump for those reasons?

 

[ringi]

The criteria are listed above.

Do you know a Type 1 pumper who got a pump for those reasons?

Remember that a consultant can make a case based on "Specific Quality of Life Issues" and the NHS (due to Children Act, and the human rights of the child) would find it hard to build a good case for not providing a pump if it can be shown it is a significant issue for someone's child that can't be solve in anther way.

I am not saying it would be easy for someone to get a pump this way, just that it may be possible.

 

[azure]

Remember that a consultant can make a case based on "Specific Quality of Life Issues" and the NHS (due to Children Act, and the human rights of the child) would find it hard to build a good case for not providing a pump if it can be shown it is a significant issue for someone's child that can't be solve in anther way.

I am not saying it would be easy for someone to get a pump this way, just that it may be possible.

I'm not sure The Childrens' Act would apply and I haven't heard anyone use their child in such a way to gain access to a pump.

The OP has a better chance of using the criteria relating to her own hypos.

I had assumed you knew someone who had got a pump in a similar way. Hopefully other pump users in a similar situation will be able to share their experiences of negotiating the criteria.

 

[saruhbeau]

I have recently been put on a waiting list for a pump, so don't have funding yet but after going on at my dsn and consultant for about a year with good reasons for wanting one they are now being supportive. I understand the ABCD criteria can be used but if possible you need to show you meet the NICE guidelines. That is what my dsn and consultant both said. Disabling hypos is open to interpretation and as long as you can get your team on board, to show you fit that guideline they can't deny funding. I was having frequent hypos like you until I started using dexcom which I fund myself.

Now my control has been very good for 3 months, and although technically I wouldnt say I have disabling hypos, my dsn said not to worry about the funding side as they will justify it. What my team wanted to see at least was that I was doing everything I possibly could to keep good control, including testing 8 to 10 times a day before dexcom, and also doing as many correction doses as I need (I inject at least 7 or 8 times a day right now). Good luck.

 

[eabhamurphy]

My HBA1c was 42. I had probably a similar number of hypos to you. Ive been using a free style libre for a few years prior to pump and it evidences frequent hypos. I couldn't get rid of hypos without having hugely elevated BG at other times.
They tried me on Tresiba first to see if changing the lantus could help. It didn't.
Hypos do really affect a persons quality of life. They limit the amount you can do in a day and left me feeling almost hungover. I personally didn't realise how exhausted I was from hypos. How disabling this is is largely subject to interpretation so could be argued either way. For me personally it's dangerous to have daily hypos while caring for a young child.
They may want to split your doses and then change your insulin before deciding to proceed with pump but just go through the motions, it's worth it.

 

[Snapsy]

Hi @Poosecat ,

My obsessive micromanagement of my diabetes pre-pump impacted my quality of life, and I was so relieved when funding was secured for me on that basis despite an HbA1c of 42 at the time.

I wrote to my DSN, pretty much baring my soul, and she was extremely supportive. I posted it here - you might find it useful. Sixth post down on this thread here: http://www.diabetes.co.uk/forum/thr...really-like-to-live-with-type-1.103794/page-3

Love Snapsy

 

[tigger]

I got mine due to pregnancy. My hba1c at that point was 7.5 (can't do new money) and it was my 3rd pregnancy. Previous ones I'd had comas in to achieve tight control. Both pregnancy and disabling hypos were used as my criteria and I got it 4 weeks later. It does help having a good relationship with your consultant though.......

 

[Poosecat]

The justification for my pump was to avoid hypos during exercise.
These were not disabling hypos but were making exercise a challenge ... and we all know how important it is to keep active.

However, a pump is not a miracle cure or miracle diabetes manager or miracle anything: my BG is certainly more stable than on MDI but it is hard work. The advantage of a pump is the additional levels of control that you have for micro bolus doses and changing basal. The disadvantage of a pump is, with all these additional levels of control, there is a lot that can go wrong ... and that's before you start thinking about changing your sets every 2 or 3 days.

In my area (and I don't think it is unique), you have to prove your willingness and ability to manage this control before you can go on the pump waiting list. This means going on a carb counting course where you demonstrate your understanding and keep a diary which shows you do it all the time not just when on the course. It was an investment in my time where I learnt nothing but it was not a complete waste of time because I got the pump.

"Pumpy" and I have been together for 18 months now. My BG is more stable. I exercise harder. But we are not friends - Pumpy is like one of those work colleagues who you admire for doing their job very well but you wouldn't choose to socialise with. He gets in the way, he shouts "diabetes" (being slim, I have struggled to find anywhere to hide him), I catch the tube on door handles and I have had a couple of nasty hypers when I had not correctly inserted my canula (although probably not for over 6 months now I have adapted my insertion technique).

Thank you for your reply - it's really good to get honest opinions from all angles.

 

[Poosecat]

I have recently been put on a waiting list for a pump, so don't have funding yet but after going on at my dsn and consultant for about a year with good reasons for wanting one they are now being supportive. I understand the ABCD criteria can be used but if possible you need to show you meet the NICE guidelines. That is what my dsn and consultant both said. Disabling hypos is open to interpretation and as long as you can get your team on board, to show you fit that guideline they can't deny funding. I was having frequent hypos like you until I started using dexcom which I fund myself.

Now my control has been very good for 3 months, and although technically I wouldnt say I have disabling hypos, my dsn said not to worry about the funding side as they will justify it. What my team wanted to see at least was that I was doing everything I possibly could to keep good control, including testing 8 to 10 times a day before dexcom, and also doing as many correction doses as I need (I inject at least 7 or 8 times a day right now). Good luck.

Thank you for this. I've spoken to my team and will have an appointment sent through in the next few weeks. The nurse told me that I would first be required to try an alternative basal to Levimir (can't remember it's name) and if that didn't improve control then I would be considered.

 

[Poosecat]

I got mine due to pregnancy. My hba1c at that point was 7.5 (can't do new money) and it was my 3rd pregnancy. Previous ones I'd had comas in to achieve tight control. Both pregnancy and disabling hypos were used as my criteria and I got it 4 weeks later. It does help having a good relationship with your consultant though.......

My second child is 6 months old today. I wasn't offered pump for either. Control in second pregnancy was ok, but disastrous in my first. I do wonder if there's quite a lot of disparity between different NHS trusts.

 

[Poosecat]

Hi @Poosecat ,

My obsessive micromanagement of my diabetes pre-pump impacted my quality of life, and I was so relieved when funding was secured for me on that basis despite an HbA1c of 42 at the time.

I wrote to my DSN, pretty much baring my soul, and she was extremely supportive. I posted it here - you might find it useful. Sixth post down on this thread here: http://www.diabetes.co.uk/forum/thr...really-like-to-live-with-type-1.103794/page-3

Love Snapsy

Thank you. Will have a read. I've had my babies, lost 4.5 stone, exercising well and just want to be as healthy as I can. Motherhood has increased my obsession with tight control. Want to be around for as long as I possibly can!

 

[Poosecat]

My HBA1c was 42. I had probably a similar number of hypos to you. Ive been using a free style libre for a few years prior to pump and it evidences frequent hypos. I couldn't get rid of hypos without having hugely elevated BG at other times.
They tried me on Tresiba first to see if changing the lantus could help. It didn't.
Hypos do really affect a persons quality of life. They limit the amount you can do in a day and left me feeling almost hungover. I personally didn't realise how exhausted I was from hypos. How disabling this is is largely subject to interpretation so could be argued either way. For me personally it's dangerous to have daily hypos while caring for a young child.
They may want to split your doses and then change your insulin before deciding to proceed with pump but just go through the motions, it's worth it.

That's really helpful. Thank you.

 

[tigger]

My second child is 6 months old today. I wasn't offered pump for either. Control in second pregnancy was ok, but disastrous in my first. I do wonder if there's quite a lot of disparity between different NHS trusts.

If you look at the posts here you'll see they are. Input can give you advice as to whether your hospital is more or less pump friendly.

You can still show that you're a good candidate for one. Good carb counting and dosing, evidence that different methods/medication haven't worked for you, evidence that you're going to try hard to make it work and have the skills to do so are all factors that mean you're more likely to find a pump a useful tool and have the grit to make it work and justify their investment in you. It is harder work mentally than other regimes and requires determination particularly in the early stages to get it working for you.

 

[BeccyB]

Have a look at http://www.inputdiabetes.org.uk/ - they can advise on pump eligibility