Want to go private and buy a pump

[CosmicOwl]

I would like to change to a pump for several reasons, I wont get funded by the NHS so I have already looked into the costs and am aware of them.
What am I to expect when I go to the doctor and say i'd like to get a pump privately?
Any advice would be appreciated before I take the plunge!

 

[everydayupsanddowns]

Out of interest, why do you say you will not get funding from the NHS?

Depending on your clinic (and you can change that if your current one is not supportive) the NICE guidance for pump therapy can be pretty inclusive.

I'm not entrely sure how you would go about it really. INPUT would probably be a good organisation to contact as they know the ins and outs of most things to do with pump and CGM access 🙂

http://www.inputdiabetes.org.uk/

 

[CosmicOwl]

Out of interest, why do you say you will not get funding from the NHS?

Depending on your clinic (and you can change that if your current one is not supportive) the NICE guidance for pump therapy can be pretty inclusive.

I'm not entrely sure how you would go about it really. INPUT would probably be a good organisation to contact as they know the ins and outs of most things to do with pump and CGM access 🙂

http://www.inputdiabetes.org.uk/

So even if I want to go totally private and pay for the pump, consumables etc i'll still need to meet the NICE criteria?
Thank you for letting me know about input, i'll contact them as well!

 

[CosmicOwl]

So even if I want to go totally private and pay for the pump, consumables etc i'll still need to meet the NICE criteria?
Thank you for letting me know about input, i'll contact them as well!

Oh and I wont get funding from the NHS because I don't meet the NICE criteria, they have turned me down for a pump several times now, despite me saying it would improve my quality of life! I've been trying to get one for a couple of years now so I feel like my only option is to go private, but it's been difficult to find information online about what to do.

 

[everydayupsanddowns]

Do you have any hypoglycaemia?

 

[everydayupsanddowns]

So even if I want to go totally private and pay for the pump, consumables etc i'll still need to meet the NICE criteria?
Thank you for letting me know about input, i'll contact them as well!

NICE Technology Appraisal is about securing NHS funding for suitable people. But to be honest I don't know *how* you could go about getting a pump not on the NHS, because the pump manufacturer's have an agreement/contract with the hospital where they provide the equipment (and replace it if it breaks) on the basis that the hospital provides the support/training. I'm not sure they would be allowed to just sell you the equipment without that support/training. You may need to get private appoiuntments for that too if your clinic refuse. Which brings us back around to why you want a pump, what they said when you asked for one and which clinics might be within reach that you could swap to that might have a different viewpoint.

The NICE TA151 might give you some clues as to how to build a case for accessing pump therapy: https://www.nice.org.uk/guidance/ta151

Continuous subcutaneous insulin infusion or ‘insulin pump' therapy is recommended as a possible treatment for adults and children 12 years and over with type 1 diabetes mellitus if:

• attempts to reach target haemoglobin A1c (HbA1c) levels with multiple daily injections result in the person having ‘disabling hypoglycaemia', or
• HbA1c levels have remained high (8.5% or above) with multiple daily injections (including using long-acting insulin analogues if appropriate) despite the person and/or their carer carefully trying to manage their diabetes.

‘Disabling hypoglycaemia' is when hypoglycaemic episodes occur frequently or without warning so that the person is constantly anxious about another episode occurring, which has a negative impact on their quality of life.

The hypoglycaemia guidance is open to wildly different interpretation depending on how 'pro-pump' your clinic is.

Take a look here too: http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/

 

[CosmicOwl]

Do you have any hypoglycaemia?

I do have hypos occasionally, but nothing too debilitating, it's usually only if i'm having a super busy day without much time to stop!
I sent a message to INPUT so hopefully i'll hear back from them soon 🙂 I feel like diabetics should be able to have a little more choice in regards to how we manage our diabetes!

 

[CosmicOwl]

NICE Technology Appraisal is about securing NHS funding for suitable people. But to be honest I don't know *how* you could go about getting a pump not on the NHS, because the pump manufacturer's have an agreement/contract with the hospital where they provide the equipment (and replace it if it breaks) on the basis that the hospital provides the support/training. I'm not sure they would be allowed to just sell you the equipment without that support/training. You may need to get private appoiuntments for that too if your clinic refuse. Which brings us back around to why you want a pump, what they said when you asked for one and which clinics might be within reach that you could swap to that might have a different viewpoint.

The NICE TA151 might give you some clues as to how to build a case for accessing pump therapy: https://www.nice.org.uk/guidance/ta151



The hypoglycaemia guidance is open to wildly different interpretation depending on how 'pro-pump' your clinic is.

Take a look here too: http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/

http://www.londonmedical.co.uk/diabetes-type-1 Just found this on the INPUT website, this seems like the kind of option I was looking for!!