entitled to a pump?

[litto-miss-loz]

how do you know if your entitled to a pump??

does your control need to be really bad before u can apply for one ?

ta mucho chums

 

[Becca]

Hiya

It's not necessarily down to bad control, you could be entitled if you suffer from disabling hypos as well.

This is from the NICE guidelines:

NICE Technology Appraisal guidance No. 57 states:

Continuous subcutaneous insulin infusion (CSII or 'insulin pump therapy') is recommended as an option for people with type 1 diabetes provided that:

* multiple-dose insulin (MDI) therapy (including, where appropriate, the ue of insulin glargine) has failed; and
* those receiving the treatment have the commitment and competence to use the therapy effectively.


People for whom MDI therapy has failed are considered to be those for whom it has been impossible to maintain a haemoglobin A 1 c level no greater than 7.5 in the presence of microalbuminuria or adverse features of the metabolic syndrome) without disabling hypoglycaemia occurring, despite a high level of self care of their diabetes. 'Disabling hypoglycaemia', for the purposes of this guidance, means the repeated and unpredictable occurrence of hypoglycaemia requiring third-party assistance that results in continuing anxiety about recurrence and is associated with significant adverse effect on quality of life.

 

[Cate]

NICE have some guidelines about them - though I think things have got a bit tougher recently, with funding issues fairly common.

When I got mine (2004) I had to first speak to my diabetes team about it, get them to agree in principal. Then speak to GP and get them to recommend funding it. Then GP wrote to PCT to ask for funding. Then PCT decide whether I met their criteria.

The criteria at the time were:
1) Hypos where you need the assistance of another person to treat (mine were generally at night but occasionally during the day as well)
2) MDI regime hasn't produced improvements in HbA1c despite best efforts of care team and individual
3) Using Novorapid and Lantus in combination haven't produced improvements

I think that was it.

The current NICE guidelines are available here: http://www.nice.org.uk/nicemedia/pdf/TA151QuickRefGuide.pdf they're well worth a read.

I'd say it's worth thinking through specific examples of times when you meet the criteria and noting them down so when you speak to the relevant people you can remember them. A diary might be helpful too, so they can see how common it is for you.

HTH!

Cate.

 

[randomange]

I think it's worth pointing out that as you're in Scotland, they don't have to follow the NICE guidelines, although most hospitals will use them as a starting point.

I think the best thing to do would be to speak to your clinic and see if they are pro-pump. Where are you currently being seen? I know within Glasgow itself the pump situation is pretty damn poor, but outside it seems to be better.

I'd also recommend checking out these people http://www.ipagscotland.co.uk/, and possibly get in touch with them. I think they're related to Input, and are trying to improve the number of people on pumps in Scotland.

Ange 🙂

 

[Mand]

In our case, my son developed a needle phobia and would only inject into one place on his stomach which caused lumps. The lumps meant the inulin was not getting through properly so he was frequently running high. So this was affecting his control.

On these grounds, he was put forward for a pump and accepted. Now, with less needles, he is much happier. 🙂

 

[Freddie99]

In my case it's just being fed up with bloody needles and never being able to get my HbA1c below 8% despite the sterling efforts of my team. The fact that going to uni has totally changed my lifestyle (Look mum, I can cook for myself 😱) and I really want to get into heavy exercise but MDI just doesn't allow heavy exercise without an inordinate amount of effort nor does it work well with the "tap and go" existence that I have here at uni.

 

[HelenM]

Hiya

It's not necessarily down to bad control, you could be entitled if you suffer from disabling hypos as well.

This is from the NICE guidelines:

NICE Technology Appraisal guidance No. 57 states:

Continuous subcutaneous insulin infusion (CSII or 'insulin pump therapy') is recommended as an option for people with type 1 diabetes provided that:

* multiple-dose insulin (MDI) therapy (including, where appropriate, the ue of insulin glargine) has failed; and
* those receiving the treatment have the commitment and competence to use the therapy effectively.


People for whom MDI therapy has failed are considered to be those for whom it has been impossible to maintain a haemoglobin A 1 c level no greater than 7.5 in the presence of microalbuminuria or adverse features of the metabolic syndrome) without disabling hypoglycaemia occurring, despite a high level of self care of their diabetes. 'Disabling hypoglycaemia', for the purposes of this guidance, means the repeated and unpredictable occurrence of hypoglycaemia requiring third-party assistance that results in continuing anxiety about recurrence and is associated with significant adverse effect on quality of life.

This has been replaced by NIce TA151 which on the face of it makes it easier to for some people to make a case for one.. The 'disabling hypos ' no longer need to have required third part assistance.

Continuous subcutaneous insulin infusion (CSII or ‘insulin pump’) therapy is recommended as a treatment option for adults and children 12 years and older with type 1 diabetes mellitus provided that:

attempts to achieve target haemoglobin A1c (HbA1c) levels with multiple daily injections (MDIs) result in the person experiencing disabling hypoglycaemia. 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
or
• HbA1c levels have remained high (that is, at 8.5% or above) on MDI therapy (including, if appropriate, the use of long-acting insulin analogues) despite a high level of care.
http://guidance.nice.org.uk/TA151/Guidance/pdf/English

 

[Pigeon]

This has been replaced by NIce TA151 which on the face of it makes it easier to for some people to make a case for one.. The 'disabling hypos ' no longer need to have required third part assistance.

I'm glad to see that this has changed. My consultant tentatively suggested I'd be eligible for a pump on the grounds of hypos (HbA1c currently 7.8%) and I was worried that if we said this then I would lose my driving license - when in actual fact although I do have typically one hypo per day, I always get symptoms and have never needed 3rd party assistance. I'm reading around pumps on here, so may pop up elsewhere with some other questions!

 

[MelanieW]

In our case, my son developed a needle phobia and would only inject into one place on his stomach which caused lumps. The lumps meant the inulin was not getting through properly so he was frequently running high. So this was affecting his control.

On these grounds, he was put forward for a pump and accepted. Now, with less needles, he is much happier. 🙂

Hi Mand, do you mind me asking whether you had to 'jump through hoops' to get the pump for your son, or was it relatively simple? Did they withhold it for any reason, to begin with? I'm only asking because it was suggested that my daughter would probably benefit from one and then they put loads of obstacles in the way. Hope your son is continuing to do well.

 

[Rainbow]

I've recently been approved for a pump and hope to transfer from MDI in May. My HbA1c is currently 6.8. My main reason for wanting to use a pump is that MDI no longer allow me the flexibility I need to control my diabetes. I have had a lot of hypos at work quite a few needing assisitance from my colleagues. The process for me has been straight forward.

I first spoke to my consultant in December and he arranged for me to wear a CGM. I then discussed the results of this with my DSN and she couldn't believe what my glucose levels were doing when I was at work 😱

They also checked my diary to confirm I was carb counting and working out my ratios correctly. I passed all these "tests" and they agreed despite every effort my glucose levels were not being controlled well by MDI.

I was asked to submit a short written statement of need to support my apllication when the pump panel met at the end of Feb. I was granted funding. For me it has been a positive experience and I am looking forward to the next phase of my diabetic journey.

 

[rachelha]

Hello

I have been approved for a pump in Edinburgh, my hba1c was 8.1 when I was approved but I was having a lot of trouble with frequent hypos which were affecting my quality of life. The pump situation in Scotland is not great unfortunately. I am on an 18 month waiting list at Edinburgh and I think they are actually quite good. DOnt give up though

 

[Lauren]

I have a leaflet called 'Are insulin pumps for me?'

It says, 'if you answer yes to any of the following you may meet the criteria:

- Not acheiving the desired hba1c agreed with your doctor/nurse
- Frequently experiencing lows or waking early with high blood sugar
- Are you prepared to measure your sugars at least 4x day
- Are you prepared to learn to count carbs
- Are you willing to learn new skills and technology'

 

[Mand]

Hi MelanieW

No we did not have to jump through loops really but there was a process to go through.

When we first looked into pumps and asked if my son could have one, they said no because his control was good, he was acheiving good levels etc. This meant that he was not priority for one and there were other people who needed one more than him.

A few months later my son developed a needle phobia which meant he would only inject into one spot which lead to lumps forming and the insulin not getting through and so blood sugars too high and a rise in his hba1c. He was sent to some councilling sessions to try to help his needle phobia but they did not work. We were told that the councilling sessions had to be attended and the advice had to be followed to see if he could be helped before he would be put forward for a pump. We did attend the sessions and really tried hard for the advice to help him but it didnt.

His dsn then put our case forward for a pump. She stated, on our behalf, that his phobia was leading to bad blood levels and was also affecting his enjoyment/quality of life as he was distressed. Within a few weeks the answer came back that he could have a pump. Within a month we had it. It all happended quite quickly once our application was put in.

When he initially developed the phobia it was a worrying time, especially as i did not realise it was going to lead to a pump. But in the end his phobia was actually a blessing in disguise.

Life on a pump is enourmously better for him. Also better for us. I cannot speak highly enough of it. His life is so much more 'normal' on it.

The downside is that a pump does need to be managed and that job mostly falls on us at the moment due to his age (13). I.e. We need to do night testing more regularly and sometimes have to do set changes at 2am. Though this is rare. Testing in general needs to be done more reguarly too. Settings need to be tweaked sometimes.

For us, the advantages far outweigh the disadvantages. But this is, of course, a personal choice.

Best wishes. 🙂

 

[Sugarbum]

I have a leaflet called 'Are insulin pumps for me?'

It says, 'if you answer yes to any of the following you may meet the criteria:

- Not acheiving the desired hba1c agreed with your doctor/nurse
- Frequently experiencing lows or waking early with high blood sugar
- Are you prepared to measure your sugars at least 4x day
- Are you prepared to learn to count carbs
- Are you willing to learn new skills and technology'

How far in the process are you Lauren? You sound very keen from your signature?! 🙂

Wish you lots of luck- I LOVE it! x

 

[Lauren]

How far in the process are you Lauren? You sound very keen from your signature?! 🙂

Wish you lots of luck- I LOVE it! x

I can't wait to be on a pump! I'm being assessed at the moment. My sugars go really low every night while I am asleep and then shoot up very high from about 5/6am onwards. My body is becoming immune to long-acting insulin. It makes me feel very ill. I correct it every day but can't face breakfast, and this has been happening for years and years!

They are going to rush my application and they say its 99.9% likely I will be funded for one (else I'm done for lol!)

So yes - very excited! Its early days yet but I can't decide between the Animas 2020 and the Accu-Chek Combo.

 

[Purple]

I get mine fitted on Tuesday! Dead excited about it kinda nervous too. Hope you get approved and soon 🙂

 

[Freddie99]

I can't wait to be on a pump! I'm being assessed at the moment. My sugars go really low every night while I am asleep and then shoot up very high from about 5/6am onwards. My body is becoming immune to long-acting insulin. It makes me feel very ill. I correct it every day but can't face breakfast, and this has been happening for years and years!

They are going to rush my application and they say its 99.9% likely I will be funded for one (else I'm done for lol!)

So yes - very excited! Its early days yet but I can't decide between the Animas 2020 and the Accu-Chek Combo.

I went for the Medtronic Veo, latest and greatest apparently. My nurse is on the Roche Combo which he's giving a test run. Really sorry to hear about you not agreeing with your basal. Mine's just a pain all around.

 

[Lauren]

I get mine fitted on Tuesday! Dead excited about it kinda nervous too. Hope you get approved and soon 🙂

Well congratulations and I hope it all goes well for you on tuesday!

Tom - the Medtronic Veo sounds good, I am waiting for more info on it to come through the post. I like the Combo because of the remote but then again I would probably lose it at some point!