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Is Self Funding a Pump for my 13 year old Granddaughter an option

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David@Foveran

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Type 1.5 LADA
My 13 year old Granddaughter Type 1 for 2 Years is on a long waiting list for a pump. She Runs High 60 on her HbA1c , As a concerned Grandparent I would like to know if self funding a pump is an option. We are based in the Aberdeen area. Any pointers would be a help Thanks
 
Yes it’s an option but still needs to be under her consultant so it’s something they should discuss at clinic. Is she using a Libre or other flash/continuous monitor as that may have more of an effect in getting her levels down to begin with. Here (Oxfordshire) NHS funding for pumps is available for under 12s across the board but over 12s it has to be on clinical need so it can be harder to get one. I don’t know what the age criteria is in Scotland. There is a lot that can be done to bring her levels down without a pump. Going back to basics on carb counting, looking at exercise, adjusting ratios etc and her team should work with her to make any changes. It can be tempting to think that tech will solve everything but a pump takes a lot of fine tuning and can be difficult.
 
I take it you are replying as some one who does not have a Pump as the comments do not reflect my Daughters opinion who has had a Pump for some years now and thinks it is an extremely useful tool. The whole point is that you can fine tune the insulin, that is its purpose, I do not get the difficult bit. I was looking for some information on the practicality and costs to self fund a pump not a pep talk on carb counting which as a family we have been doing for over 27 years. I am also aware that the Scottish NHS rules are completely different to England. But thanks for the input.
 
David@Foveran said:
My 13 year old Granddaughter Type 1 for 2 Years is on a long waiting list for a pump. She Runs High 60 on her HbA1c , As a concerned Grandparent I would like to know if self funding a pump is an option. We are based in the Aberdeen area. Any pointers would be a help Thanks
Click to expand...
As @Thebearcametoo says using a pump takes a lot of work at the start and would need to be under the support of a consultant. A Libre is very effective in helping to sort out levels, as it gives a lot of information from which you can make adjustments to diet and doses of insulin, with some help to start with.
 
While I get the point that it requires to be under the support of a consultant, Part of the Issue is that the pump trained Nursing staff have all left and the NHS in Aberdeen, So the NHS is dragging its feet with doing anything to re-train staff. She has had a Libre for 18 Months and while I agree it is very useful to record what has happened, The ability to Remove the Basel and adjust the background rate of insulin on an hour by hour basis is what we are after.
 
Pumps are fantastic for close control. They are however not plug and play so require some training and support to sort. If you don’t have the support of your clinical team then it may not be possible to get one even if self funding because the contract with the company demands consultant overview. So yes in theory you can self fund a pump but really it is only the specific team dealing with your grand daughter who can answer the question as to whether they will support a self funded pump. If you have a specific pump in mind then you can always speak to the company customer service and see what they suggest in terms of overview. It sounds like it might be an uphill struggle given the issues in the clinical team.

I don’t have a pump. I don’t have diabetes. I am the parent of a child who is eligible for a pump and we have discussed it in depth with her team who are supportive and informative. Here they will bend over backwards to get a pump for any child who wants one but the NHS still takes time. That’s the only information I can share *shrug*
 
Welcome to the forum @David@Foveran

Sorry to hear about your grandaughter’s difficulty accessing pump therapy.

Am I right in understanding that you have a daughter with T1 who is already a pump user, or have I misread your posts? It must be very frustrating to be in a family with experience of the challenges and positives of pump use but unable to access the technology because of staff shortages.

The forum has been asked several times over the years whether this is possible, and I can’t remember anyone who has managed it. Pumps are prescription-only, and their contracts last 4 years (as you probably know). It isn’t just the cost of the pump itself (£3000?) but also the ongoing costs of consumables - sets and reservoirs - plus the technical back-up and support needed from the pump company.

The investment would be significant, even if it were possible to find a consultant who would see your grandaughter privately and was supportive of this endeavour.

I wonder if an alternative might be to transfer her care to a centre (however distant) which was able to give access to pump therapy (Edinburgh has an excellent reputation for diabetes technology) and use the money to support travel/accommodation for appointments instead. I suspect it would be far less than the tens of thousands of pounds it might cost to do the whole thing privately.
 
Many thanks for the details of the costs & ongoing costs this is the kind of info I was looking for. You are correct My Daughter was T1 27 Years age My granddaughter T 1 2 Years ago & Myself Type 1.5 LADA Just over a year ago. So we have the expertees in the Family so to speak. All we really need is the Pump ! The suggestion of Edinburgh is worth serious consideration and I will follow that up. Someone on another forum suggested that there was a way to log an official complaint as the the lack of pumps issued in the aberdeen area. But did not expand on how this could be done or if it would make any difference !
 
INPUT (now part of JDRF) is a small charity with a great track record of helping people get access to appropriate technology.

it might be worth contacting them and seeing if they have any suggestions?
 
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