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Omnipod5 pump self funding costs

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Mst27

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I am looking to self fund the Omnipod 5 pump for my newly diagnosed 19 year old daughter. We spoke with the diabetic dietitian about doing this and she was supportive of this. She said that it would be at least 4 years before the NHS would fund it for her. My daughter has mental health issues that mean the pump is the best way forward for her. Does anyone know the cost of self funding this and how long it would take to get the pump. Any help is greatly appreciated.
 
Welcome @Mst27 Last I read the Omnipod 5 was something like £350+ per month. Has your daughter tried appealing to see if she can get a pump on the NHS?

If she/you can self fund, there’ll probably be cheaper options than the Omnipod.
 
I will try to appeal it but she really needs one as soon as possible. We are waiting for a referral for a specialised diabetes clinic at Kings Hospital where I am hoping they could push it through but in the mean time I want to try to get her started as I believe it will make a big difference to her recovery from her other issues. She needs the loop system and doesn’t want tubes but if there is a cheaper equivalent then I would look into it.If anyone has any advice on how to move forward with self funding I would be grateful for that also as this is very new to us. Thank you for your reply I appreciate it.
 
The price I gave was for the pump only. Any CGM needed that wasn’t funded by the NHS would obviously cost extra. A Google suggests the monthly figure for the Omnipod is £360. My pump is a Dana i and Google tells me that the pump is £2,000 (but lasts 4 years minimum, so divide that by 4 or more) plus ‘running costs’ of £1200 per year, which works out cheaper than the Omnipod.

If she’s never pumped before, I wouldn’t rule out tubed pumps. They’re great 🙂
 
Does anyone know if we would still get the CGM funded via the NHS ?
We are going to really struggle to pay for the pump and to add that on might make it unattainable. How do I go about fighting for one on the NHS ? She needs one as soon as possible for her to be able to recover from her mental health issues these outweigh the diabetes diagnosis at the moment.
 
I don’t know but I presume they’d continue to fund it if it was the same one. However, if she needed an upgrade, they might not. Are you happy to say a little about how the MH issues affect her? A loop will still need input from the user and she’d have to know how to use the pump without the loop too - ie it’s not an easy option necessarily.
 
Thank you for your reply. My daughter has an eating disorder which means that I am currently in control of her eating and managing her diabetes. She cannot weigh or carb count as part of her recovery. She will be returning to uni hopefully in September which means I have a very limited time to get her in a good enough position for her to take control of her eating and diabetes. She also has coeliac disease and has lost all hope of ever being able to eat normally or even for her to ever be happy again. We have been advised that she cannot take part in the Dafne programme because of this. We have also been advised that the pump would make it easier for her to be able to eat normally as it would adjust if she under doses insulin. Since being diagnosed with diabetes her hopelessness has increased and has made the battle against that so much harder. We are already paying for counselling as the process to get her help for that took so long. We have had to buy our own needless, lancets and a libre 2 because the doctors refused to put it on repeat prescription Hopefully the diabetic team have sorted this for us now but we are still waiting for prescriptions. I would do anything to help her get better she is a wonderful girl who like everyone deserves to be happy and healthy. We would be borrowing the money from family to get the pump and so need the nhs to fund it as soon as possible. Thanks for any help everything is appreciated as we all feel a bit lost at the moment.
 
I had an ED @Mst27 It’s an awful thing and diabetes just makes it worse. Please tell her there’s hope and that she will be able to get better. She’ll also be able to eat and enjoy food when she’s ready xx
 
How long has your daughter been diagnosed with diabetes. I ask this because you say that you were having to self fund needles and lancets so I am wondering if she is very newly diagnosed and the letter from the clinic to the GP regarding prescription needs had not arrived before you ran out of hospital supplies.
Which insulins is your daughter currently using and which sensor if any? There are only certain sensor which link with the Omnipod 5 so knowing which sensor she already has will help us advise on whether that would work or if there would need to be a different sensor and if additional funding ay be needed for it.
If you are still in the very early stages of diagnosis and your daughter has all these additional issues, then I personally think that you are asking too much to get a pump and get it set up and comfortable/confident with her operating it, in time for September and I wonder if you might take the pressure off all of you by taking a year out to get on top of some of these issues.

Pumps are not "plug and play" even with HCL and she needs to be able to take over manually at short notice in an emergency, if there is a problem. There is a much higher risk of DKA with a pump, so being confident with injecting yourself both with basal and bolus insulin and knowing what to do if/when things go wrong is quite important with them. I don't mean to put you off, but I wonder if the dietician has a full understanding of what is involved.

As regards other options to the Omnipod, I believe @helli has a patch pump which is a Medtrum and I believe that can be used in conjunction with a sensor to provide HCL capability and I understand it is cheaper than Omnipod.
 
Mst27 said:
Thank you for your reply. My daughter has an eating disorder which means that I am currently in control of her eating and managing her diabetes. She cannot weigh or carb count as part of her recovery. She will be returning to uni hopefully in September which means I have a very limited time to get her in a good enough position for her to take control of her eating and diabetes. She also has coeliac disease and has lost all hope of ever being able to eat normally or even for her to ever be happy again. We have been advised that she cannot take part in the Dafne programme because of this. We have also been advised that the pump would make it easier for her to be able to eat normally as it would adjust if she under doses insulin. Since being diagnosed with diabetes her hopelessness has increased and has made the battle against that so much harder. We are already paying for counselling as the process to get her help for that took so long. We have had to buy our own needless, lancets and a libre 2 because the doctors refused to put it on repeat prescription Hopefully the diabetic team have sorted this for us now but we are still waiting for prescriptions. I would do anything to help her get better she is a wonderful girl who like everyone deserves to be happy and healthy. We would be borrowing the money from family to get the pump and so need the nhs to fund it as soon as possible. Thanks for any help everything is appreciated as we all feel a bit lost at the moment.
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That is very tough on you all.
I hope she will be able to get support from the disabilities team at Uni once she returns. It is something to press for.
 
rebrascora said:
How long has your daughter been diagnosed with diabetes. I ask this because you say that you were having to self fund needles and lancets so I am wondering if she is very newly diagnosed
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It's in the original comment: "for my newly diagnosed 19 year old daughter"

(You may want to edit your post.)
 
helli said:
It's in the original comment: "for my newly diagnosed 19 year old daughter"

(You may want to edit your post.)
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Do you know I went back and reread the opening post before I wrote that and still missed it! Thanks for keeping me right 🙄
 
Thank you for your replies. She is on the libre2+ at the moment and she does inject herself and will treat a hypo independently.

She is on a 5 year course at uni and if she missed a year I think the impact on her mental health would out way the benefit of her staying at home. When this started a few months back we would visit every three days to check up on her and that would continue to be the plan if she can return to uni. She is in early intervention with regard to the eating disorder and have been told that recovery can be quicker if we do everything we are told too and she fights it.
I have managed to speak with the person who looks after people on pumps in her diabetes team and they have requested authorisation for them to fund the consumables and for us to fund the pump. Now we wait to see what happens with that.

For anyone wanting to know the Omnipod 5 is £340 a month but comes down to £300 if you claim back the VAT. It will be tough to find but hopefully we wouldn’t need to borrow from family as it’s a monthly payment. She needs to feel hope and this is something that is making her hopeful so we have been advised to try to go ahead. Omnipod have also said we can cancel at any point as it’s a rolling monthly contract so I think it’s worth trying to push forward with. Thanks again
 
Wishing you and her lots of luck with at least getting the consumables funded.
It appears that the OP5 will integrate with the Libre2+ sensors to provide HCL so that should continue to be funded by the NHS too. Keeping fingers crossed for you and I hope you are able to push for the pod to be funded on the NHS too in the not too distant future. Do keep pushing for that.... assuming that it works well for her of course.
 
Mst27 said:
I have managed to speak with the person who looks after people on pumps in her diabetes team and they have requested authorisation for them to fund the consumables and for us to fund the pump.
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Please excuse my ignorance with the OmniPod. Well, I say "ignorance" but it is probably one of those cases where I have a little but not all the information.
For tubed pumps, the consumables are cannulas and tubing that are changed every 3 days while the pump is reused each time. The tubing and the cannula are the "pump consumables".
For a patch pump like the OmniPod, there is no tubing and the cannula is an integral part of the pump. So, what are the consumables for an OmniPod beyond the insulin and, maybe, the syringe to fill the pod?
My reason for asking is that the person you spoke to may have only been thinking about tubed pumps.
 
They said it was for the libre2+ and insulin but as you say I guess the syringes too.
 
The Libre 2+ (just being introduced to replace Libre 2) and insulin are standard prescription items for a Type 1, so there is no extra funding required for that. The odd syringe is hardly going to need special funding either I would have thought.
It is absolutely shocking that you were left to self fund needles and lancets for a while! Those are absolutely basic supplies!
 
In response to the earlier reply we did not leave hospital with anything but a prescription for long acting insulin and had no training at time of diagnosis. I had to go to my doctors to request all of the equipment to monitor her glucose and give injections.it was 4 days after leaving A&E that we were seen by the diabetes team and at that point we realised we hadn’t been giving the injections correctly as we had to self teach ourselves by watching videos. Since then we have meet the diabetes team and they prescribed everything needed but the doctors refuse to have needles, testing strip and lancets on repeat prescription. It took a week and a half for them to agree to a prescription of 1 box of 90 needles. If I hadn’t bought more then she would have run out. I have just had to pay for testing strips as we are only getting one pot at a time and because she has suffered lots of hypos and is new to this we were using a lot of them initially and again I had to argue for them to give us another prescription. I have also had to pay for everything that does come through on prescription as we are still waiting for her exemption certificate to come through. How a doctor can’t understand that she needs needles as well as insulin is beyond me. Everything is a battle at the moment and most of them should be unnecessary.
 
Mst27 said:
Since then we have meet the diabetes team and they prescribed everything needed but the doctors refuse to have needles, testing strip and lancets on repeat prescription.
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I appreciate you are under an immense amount of pressure and stress in trying to do the very best for your daughter and you may well need to pick your battles at the moment, but this is totally unacceptable and really should be taken up with the practice manager and if no joy, then taken further. It is neglect of duty when the diabetes clinic have written to advise them of your daughter's prescription requirements and they refuse to prescribe them, especially with something as blatantly obvious as needles! Sending virtual (((HUGS))) because it sounds like you are having a really tough time of it.
 
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