Help! Told 13 year old can’t have an Omnipod 5.

[Type1Son]

Hello,

My son was diagnosed T1 just after his 12th birthday (almost 2 years ago) so was ineligible for a pump until the guidance was changed last year that over 12’s could have one. I was waiting for the Omnipod 5 as had researched it quite thoroughly since just after diagnosis!

Now he’s at the almost at the top of the list for a pump, hospital are saying they will only offer a Medtronic as funding for the Omnipod 5 has not been agreed with our CCG and they have no idea how long that will take. According to NICE guidelines, it should be offered.

They are pushing the Medtronic quite heavily despite son having trialled it and not liking it. Obviously if we agree he’s tied to it (literally!) for 4 years. They went even let him trial the Omnipod.

He really needs a pump as he is burnt out with doing injections and often has highs as he doesn’t want to do them for snacking (very fast growing teen, already almost 6ft). His hba1c has remained 7.5 which is acceptable according to hospital but isn’t to me.

Obviously as his parent, I want him to have the best treatment available with least impact on him which the Omnipod would give a self conscious teenager.

Hospital will also not let us self fund difference in cost between the Medtronic and Omnipod. Assume it’s more expensive hence the issue with funding?

Any advice on this appreciated as I’ve been fighting to get him on a pump since diagnosis, told he couldn’t have one as over 12, (even self funded), now he can but not the one we want. So frustrating!

(Up at this time as had to correct a high and had to wake him to inject which wouldn’t have happened if he was on a pump!)

 

[Inka]

Does his hospital only offer one pump @Type1Son ? That’s quite unusual. My hospital offers 5 or so. However, I think that’s unusual too as many people here only have a choice of two or three pumps. Is he going to loop with it? Weren’t you told the pumps that would be on offer before you/he started researching?

Could you change hospitals as another hospital might offer a different choice of pumps? Personally, if it were me, I’d just take the Medtronic. I’ve had tubed pumps for more than 20 years and they don’t “tie” you, they give you your freedom back 🙂

 

[helli]

My diabetes clinic only offers one pump - the Medtronic. Whilst it might be unusual, it is common that clinics only offer a limited option which is why the recommendation is to always check with your clinic before starting research into pumps.
That said, with a lot of pleading and being told the OmniPod was too expensive (my clinic would rather provide pumps to more people which seems reasonable logic), I was offered to trial the Medtrum. This is another patch pump which is cheaper than the OmniPod. The downside is lack of HCL at the moment.

My advice (if you cannot change clinic) is to provide good justification why your son needs OmniPod and what is wrong with the Medtronic. I realise logic is not always easy with a 13 year olds emotions but " don't like it" is unlikely to cut the mustard. However, if you can justify there maybe a compromise available like Medtrum

 

[Type1Son]

Many thanks for the replies

Our hospital do offer the Omnipod 5. From speaking to parents on our local T1 group, a lot of the under 12s (at diagnosis) are on it with excellent results. The issue is my son being over 12 (by less than one month!) at diagnosis.

 

[Inka]

Many thanks for the replies

Our hospital do offer the Omnipod 5. From speaking to parents on our local T1 group, a lot of the under 12s (at diagnosis) are on it with excellent results. The issue is my son being over 12 (by less than one month!) at diagnosis.

What’s the justification for that @Type1Son ? Seems strange. Could you self-fund until the funding comes through?

 

[Thebearcametoo]

You can’t self fund pumps like you can CGM so you do end up at the whim of your clinic as to what pumps they support but just having one option is ridiculous. When my kid was first offered a pump we had several options including Medtronic and tslim but they were stopping funding for new omnipods so I think it’s a common issue with omnipods. We have a tslim and Dexcom (was G6 now G7) funded. If you’re being offered Medtronic but would have to self fund the sensors then that’s doubly frustrating.

Funding hasn’t caught up with the tech. And the whole thing of over 12s not getting automatic funding for pumps is ridiculous. Our clinic finds ways to fund pumps and sensors as needed (often doing psychological assessments with the clinic psychologist and using that as justification) but it does take time and really varies from clinic to clinic. We’re under Oxford University Hospital so fairly well resourced compared to some places.

You can change area but that can come with it’s own frustrations. Yes he’s ‘stuck’ with it for 4 years but having a pump already when transferring to adult diabetes care makes it much easier so long game making sure he’s got something before he transfers will make it easier even if it’s not his preferred option.

A pump is not a magic bullet to deal with diabetes burnout. Since my teen has had one he’s had breaks from it and gone through phases of needing a lot of support and coaxing to do the set changes.

If he does opt to try to Medtronic he can take breaks (it needs a bit of juggling dealing with going back on basal etc) so he’s not tied to it forever. He will likely adjust to it and prefer it injections.

 

[Inka]

You can’t self fund pumps like you can CGM

Yes, you can in some circumstances. I know a Type 2 who self funded a pump and an adult Type 1 also. Indeed the NHS mentions it as an option:

Type 1 diabetes – Insulin pumps

Read about insulin pumps, which are used to reduce hypoglycaemia (hypos) and improve blood glucose levels.

www.nhs.uk

 

[Thebearcametoo]

You can’t self fund pumps like you can CGM

Yes, you can in some circumstances. I know a Type 2 who self funded a pump and an adult Type 1 also. Indeed the NHS mentions it as an option:

Type 1 diabetes – Insulin pumps

Read about insulin pumps, which are used to reduce hypoglycaemia (hypos) and improve blood glucose levels.

www.nhs.uk

Oh that’s fabulous! We were told it wasn’t possible but glad to see it’s changing.

 

[Lucyr]

You can’t self fund pumps like you can CGM

You can and you have been able to for years. It’s at least 10 years since the hospital recommended I self fund a pump, I would have just needed a letter from them to support my self funding it. I couldn’t afford it so never did.

 

[Inka]

Oh that’s fabulous! We were told it wasn’t possible but glad to see it’s changing.

It’s been like it for some years. I remember it being mentioned when I had one of my older pumps. The consultant said it was cheaper than another brand so was good for self-funders. I’d have to guess what year that was but it was years ago.

 

[Thebearcametoo]

It’s been like it for some years. I remember it being mentioned when I had one of my older pumps. The consultant said it was cheaper than another brand so was good for self-funders. I’d have to guess what year that was but it was years ago.

Maybe it’s different for paeds then.

 

[m1dnc]

BTW I had a meeting with my hospital clinic DSN yesterday as I am up for my 4-year pump renewal. She told me that our local ICB has not yet approved funding for Omnipod 5, pending on-going negotiations between Insulet and the NHS about pricing. The ICB has indicated that this should be resolved by the autumn.