Self funded pump

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BexHoops

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Relationship to Diabetes
Type 1
Hi All

I hope you can help...

My NHS trust does not offer pumps to adults, I’ve been very lucky in that the company my dad works for has agreed to fund a pump for me. Has anyone self funded a pump or knows how I go about doing this?
Also any recommendations on pumps would be greatly appreciated.

Bit of background for you... I am 37yrs old, have had diabetes for 24yrs. I had a child in 2018 and ever since I’ve had severe hypos. My HbA1c is between 41-46 but I think this is largely due to the 3-5 hypos a day that I have. I am currently using the Libre and Miao Miao 2 to manage my sugars!

Thanking you in advance
Bec
 
Hi @BexHoops cannot help at all but I do recall a recent discussion on the forum on the subject. I can't find it but I am sure somebody else will.

I am amazed that your NHS has a blanket restriction on pumps for adults and if it were me I would be writing to my MP to ask them what they could do to get it changed.
 
Hi @BexHoops 🙂

I have a pump and love it. I didn’t realise some trusts refused to fund pumps for adults. I thought they all had to if the person qualified.

Yes, you can fund a pump privately, but you’d also need to factor in the ongoing cost of consumables - ie the sets and cannulas, pump reservoirs, etc. You’d also need someone to provide training and support.

Personally I’d be pushing to get one on the NHS even if this meant changing hospitals.

As for pump recommendations, I’d recommend my pump - the DANA RS. Look on YouTube and google to see what other pumps are available too. The DANA can run a looping system if you can sort the CGM part.
 
BexHoops said:
My NHS trust does not offer pumps to adults, I’ve been very lucky in that the company my dad works for has agreed to fund a pump for me. Has anyone self funded a pump or knows how I go about doing this?
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By law (NICE) they have to offer pumps.
There's a company in London that does private medical care (pumps) Can't remember what they are called though.
Are you sure it's the CCG that's refusing to fund a pump or is it the hospital you are under?

Found this as well Type 1 diabetes - Insulin pumps - NHS (www.nhs.uk)
 
It’s the hospital, they don’t have the facilities. They did partner with a hospital in another county but they’ve now stopped as they couldn’t take any more on.
 
Docb said:
Hi @BexHoops cannot help at all but I do recall a recent discussion on the forum on the subject. I can't find it but I am sure somebody else will.

I am amazed that your NHS has a blanket restriction on pumps for adults and if it were me I would be writing to my MP to ask them what they could do to get it changed.
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Hi, yes I’ve wrote to my local MP and to the commissioning body at the hospital. Neither can help! It’s so disappointing!
 
Inka said:
Here’s some NICE guidance:

https://www.nice.org.uk/guidance/ta...n-pump-therapy-final-appraisal-determination2

As you see, hypos are one reason someone could qualify for a pump. It’s why I got mine. I’m pretty sure trusts can just have a blanket ban (although they may still make it awkward to get one).
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Yes, that’s the argument both that I, the GP, my eye specialist, and my kidney specialist all argued, but it got us know where! We’ve been battling for a pump for 3 years now! The hospital doesn’t have the facilities for a pump ie training etc, so would have to go to another hospital, but that hospital has stopped referrals!
 
@BexHoops you are entitled to be referred to where ever you want so ask to be referred to another hospital that does pumps. The secret of getting a pump is knowing that the word NO is not in the dictionary. Do not give up.
 
Pumper_Sue said:
@BexHoops you are entitled to be referred to where ever you want so ask to be referred to another hospital that does pumps. The secret of getting a pump is knowing that the word NO is not in the dictionary. Do not give up.
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This comment is 100% correct, when they say no keep pushing. I didn’t have the problems you are having but I asked to be put back onto a pump in November & they refused because I hadn’t done DAFNE since. I kept pushing and pushing until they gave in and said do the online BERTIE course & they’d give a pump. Fast forward to today & my pump arrives this week and I start training the 7th of January. I literally rang my team everyday & when they didn’t answer I emailed. Eventually they had no choice but give me one.

Don’t let them fob you off with they can’t do the training, the training takes place online these days because of COVID & usually takes place with a specialist nurse working for the pump manufacturer you pick.

It’s hard work, but keep fighting you’ll get there.
 
BexHoops said:
Yes, that’s the argument both that I, the GP, my eye specialist, and my kidney specialist all argued, but it got us know where! We’ve been battling for a pump for 3 years now! The hospital doesn’t have the facilities for a pump ie training etc, so would have to go to another hospital, but that hospital has stopped referrals!
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@Pumper_Sue is right - don’t accept their No. I was refused a pump at first but I appealed and eventually got one. It was years ago now, but I wrote a letter explaining exactly why I qualified, why I needed one, and how my quality of life would be improved. I also mentioned savings for the NHS, etc. and how I was competent to use a pump.

It’s easy for them to say No. They know that some people will just give up at that point and go away. Don’t be one of them!

In the meantime, have you had possible causes of these hypos ruled out eg coeliac disease, etc? What insulins are you taking? Do you still have hypo awareness?
 
.... and is your basal insulin dose (and type of insulin) as "right" as you can get it?
I only say that because many people who have been diagnosed a long time don't seem to be aware of how much basal needs can change over time and with a change of circumstances and have just relied on their DSN or consultant telling them what their basal dose should be and/or not considered a possible change of basal insulin to meet their changing needs. Even just changing the time of day you take your basal can have an impact on preventing hypos.

Apologies if I am stating the obvious.... and I certainly do not want to discourage you from trying to get a pump... and hopefully being successful, just trying to suggest ways to deal with your current hypo problem.
Basal testing would be appropriate if you haven't done that yet.
 
I was also refused a pump at first. I asked for the reasons, and then gathered data to support my argument, and at the next appointment they said yes. Well worth asking again, or find out where your nearest hospital that does pumps and has space is and ask for a referral.
 
BexHoops said:
My NHS trust does not offer pumps to adults
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Welcome to the forum @BexHoops

Sorry to hear you are having such a runaround accessing pump therapy.

NICE TA151 legally requires all areas to provide insulin pumps to those who meet NICE criteria (though part of this involves having a consultant who will support you.

Hope you find a way to jump through the required hoops.

Diabetes UK has an advocacy service that may be able to help. A blanket refusal of pumps to adults is not allowed.
 
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