Self-funding for Pump/ Pump start?

[CharlotteScr]

Hi! My 16 year old was diagnosed early this year. Control is pretty elusive for the past few months despite our efforts- frequent hypos/ very high at night and lurching from one to the other throughout the day with little warning.
She fits the criteria for a pump and is desperate to have one, having seen the difference it has made to a friend at school. However despite meeting the NICE criteria, and agreeing funding with the CCG, the hospital are unable to give us a start date, or even an indication of when this might be because of staff shortages. We have been told there is a long waiting list. I am losing hope that it will happen in the next year (we have been waiting 8 months already).

I am considering options for starting the pump privately with the plan that, given the CCG funding is there, the NHS might then take on the ongoing care and costs from there. It would not be feasible for us to fund care and consumables/ cartridges etc ongoing. I know the NHS generally refuses to have anything to do with private care/ funding....however given the postcode lottery that seems to operate for diabetes tech at the moment, just wondered if anyone had any experiences they could share? or any other ideas on how to access the pump? Thanks!

 

[Inka]

Could you go to another hospital in the same CCG @CharlotteScr ? Is the delay simply due to a long wait for the pump training? Or are there hoops she has to jump through before getting the pump eg doing a DAFNE course or whatever? 8 months does seem a long time.

I’d think it would be easier to try to go through the NHS than privately because you’d need ongoing support. I think @Pumper_Sue mentioned something about self-funding once.

Also, do you know what pump she’d be getting from the hospital?

 

[admc26]

I echo what @Inka said about maybe trying another hospital. When I was ready to go on a pump, I met the NICE guidelines but the hospital I was at since diagnosis couldn't secure the funding for me. It was only when I sought a second opinion from another hospital that funding was given to me. I moved to that hospital to be put on my pump and am so glad I did!

 

[Pumper_Sue]

I am considering options for starting the pump privately with the plan that, given the CCG funding is there, the NHS might then take on the ongoing care and costs from there. It would not be feasible for us to fund care and consumables/ cartridges etc ongoing. I know the NHS generally refuses to have anything to do with private care/ funding....however given the postcode lottery that seems to operate for diabetes tech at the moment, just wondered if anyone had any experiences they could share? or any other ideas on how to access the pump? Thanks!

Hi Charlotte,
whatever you do do not fund the pump yourself. The CCG will not take up the funding the loophole was plugged.
Even if you did go down this root you would still need a consultant to oversee it.
So your best bet is to go to another hospital which you are entitled to do, and then perhaps after awhile transfer back to the more local hospital if you so wish.

 

[CharlotteScr]

Could you go to another hospital in the same CCG @CharlotteScr ? Is the delay simply due to a long wait for the pump training? Or are there hoops she has to jump through before getting the pump eg doing a DAFNE course or whatever? 8 months does seem a long time.

I’d think it would be easier to try to go through the NHS than privately because you’d need ongoing support. I think @Pumper_Sue mentioned something about self-funding once.

Also, do you know what pump she’d be getting from the hospital?

Thank you- the delay is purely (we've been told) due to lack of resource to support a pump start, ie the start session itself and then oncall resource which apparently has to be in place for a short period afterwards. We would definietly need ongoing support, which tbh i think they could provide, the blocker seems to be just this start process. Everything else is in place. They have offered a choice of pumps and we're going with the Tslim

Hi Charlotte,
whatever you do do not fund the pump yourself. The CCG will not take up the funding the loophole was plugged.
Even if you did go down this root you would still need a consultant to oversee it.
So your best bet is to go to another hospital which you are entitled to do, and then perhaps after awhile transfer back to the more local hospital if you so wish.

Thanks for the advice, that makes sense. My fear is that by moving to another hospital we go back to square one with assessments for eligibility etc and applications for funding (i have been told you cannot take those with you when you transfer) so we'd have another looong wait. And 2 local hospitals are not accepting out of area referrals. I guess im just trying think laterally in the face of this indefinite wait but maybe i need to apply that to finding a hospital who will take her and do a (reasonably) quick start on a pump.

 

[SB2015]

I would echo what others have said about trying a different hospital.

I was refused a pump the first time I applied. I asked them for their reasons and then started gathering data to counter their arguments. (This is easier now a days with access to Libre sensors.)
At the next appointment I presented the data and got agreement for the pump. The process also helped me to think through what I wanted to get out of using the pump, so I felt a lot better prepared for the use of it.

Let us know how you get on @CharlotteScr

 

[CharlotteScr]

Thanks everyone. I hear you loud and clear- self-funding not a good idea if you don't plan to do it forever......I will look into changing hospitals. Any tips on the best way to do this? many thanks

 

[Pumper_Sue]

Thanks everyone. I hear you loud and clear- self-funding not a good idea if you don't plan to do it forever......I will look into changing hospitals. Any tips on the best way to do this? many thanks

Hello Charlotte,
you need to go see your daughters GP and ask for a referral elsewhere if your daughters present consultant wont play ball.

 

[Thebearcametoo]

Yes see your GP. They may have suggestions for where is the most suitable place for you to get to or be able to chase up your team to find out why there’s such a delay on the pump.


FWIW here in Oxfordshire which is a good department you would expect to wait somewhere around 3-6 months for a pump depending on when you start the process but it can be longer than that if the timing just doesn’t work out well - info sessions 3x a year then say at your next quarterly clinic that you want a pump & they apply for funding then you get on the next training session available. The ongoing support isn’t a massive burden on the team.

A pump is only as good as the data inputted into it though so I would say you’re being let down on the management of your MDI anyway. Has she done any basal testing? That would be the first thing to do and then adjust basal accordingly and from there look at carb ratios and correction factors. The better you can get the general management the better the algorithm on the pump will be for fine tuning it.

 

[CharlotteScr]

Thanks very much @Thebearcametoo great to get those timings. I would honestly take 12 months no problem! you make a very good point re current management. This is another reason to change hospitals i think- my daughter developed T1DM in Feb this year (following Covid) and we have really fallen between the gaps. We have had very patchy training and little contact with the hospital team. I will get on it now. Watch this space 🙂

 

[rebrascora]

You can learn a lot from the forum here about Type 1 management too. Up until I got my DAFNE course, this was the main source of my knowledge and much as DAFNE is good, I knew a lot of it from members here. What DAFNE gave me was more confidence to recognise when my basal doses needed tweaking and then to do so. It also gave me protocols to follow for managing BG levels during illness etc. It was also great to spend a week with other Type 1s and realise just how different we all are. All the practical tips and tricks of fine tuning my diabetes management, different types of insulin and which ones might suit my body better, technology etc, I learned here from the experienced members of the forum. Often what the clinical staff tell you "in theory" doesn't work in practice for everyone. Take prebolus timing for instance. I was recommended to prebolus no more than 20 mins before a meal. I need 45 mins before breakfast with Fiasp to prevent me spiking and over an hour with NovoRapid. Most people would hypo in that time, but by cautiously experimenting thanks to encouragement from people here, I found the sweet spot timing for me. I now have a routine where I inject as soon as I wake up and then potter on getting a shower and making a coffee and preparing my breakfast until it is time to eat. That has made an enormous difference to my diabetes management and the way I feel.... spiking up to 15 and then crashing back down to 5 every morning was not pleasant. Now my levels may wander up to 8 or 9 but I very rarely go into double figures at breakfast time. My consultant was horrified to hear I waited so long and would never have recommended that but he couldn't argue with my evidence. It works for me and I have developed a morning routine that it fits neatly into. This is the invaluable sort knowledge and experience that the forum brings to help you live practically with diabetes rather than the theoretical stuff. I am certainly not suggesting everyone pre-bolus by 45 mins, but don't take the 10 or 20 mins that a nurse advises at face value. Experiment and find what works for you.... or your daughter in this case.

I would also reiterate that getting basal insulin doses and/or type of insulin correct is absolutely essential to good management and it sounds like some basal testing would be the best place to start in your daughter's situation. You would need to do this with a pump anyway, so worth becoming familiar with it as basal needs do change for all sorts of reasons including the changing of the seasons.

I hope you are able to find some stability for your daughter but do read around on the forum as it is a gold mine of practical knowledge and experience that is often beyond the level nurses and consultants can provide. The key is finding out what works for you as an individual.

 

[rebrascora]

I should also say that if you want to share individual instances where your daughter experiences problems we may be able to help you pinpoint the cause..... so do feel free to ask anything or discuss specific issues. The key thing is to look at all the responses you get and figure out which ones may be most appropriate to your daughter's situation and then carefully experiment to see if that strategy works for her. If we all agree, then we are usually all on the right track. 😉

 

[CharlotteScr]

You can learn a lot from the forum here about Type 1 management too. Up until I got my DAFNE course, this was the main source of my knowledge and much as DAFNE is good, I knew a lot of it from members here. What DAFNE gave me was more confidence to recognise when my basal doses needed tweaking and then to do so. It also gave me protocols to follow for managing BG levels during illness etc. It was also great to spend a week with other Type 1s and realise just how different we all are. All the practical tips and tricks of fine tuning my diabetes management, different types of insulin and which ones might suit my body better, technology etc, I learned here from the experienced members of the forum. Often what the clinical staff tell you "in theory" doesn't work in practice for everyone. Take prebolus timing for instance. I was recommended to prebolus no more than 20 mins before a meal. I need 45 mins before breakfast with Fiasp to prevent me spiking and over an hour with NovoRapid. Most people would hypo in that time, but by cautiously experimenting thanks to encouragement from people here, I found the sweet spot timing for me. I now have a routine where I inject as soon as I wake up and then potter on getting a shower and making a coffee and preparing my breakfast until it is time to eat. That has made an enormous difference to my diabetes management and the way I feel.... spiking up to 15 and then crashing back down to 5 every morning was not pleasant. Now my levels may wander up to 8 or 9 but I very rarely go into double figures at breakfast time. My consultant was horrified to hear I waited so long and would never have recommended that but he couldn't argue with my evidence. It works for me and I have developed a morning routine that it fits neatly into. This is the invaluable sort knowledge and experience that the forum brings to help you live practically with diabetes rather than the theoretical stuff. I am certainly not suggesting everyone pre-bolus by 45 mins, but don't take the 10 or 20 mins that a nurse advises at face value. Experiment and find what works for you.... or your daughter in this case.

I would also reiterate that getting basal insulin doses and/or type of insulin correct is absolutely essential to good management and it sounds like some basal testing would be the best place to start in your daughter's situation. You would need to do this with a pump anyway, so worth becoming familiar with it as basal needs do change for all sorts of reasons including the changing of the seasons.

I hope you are able to find some stability for your daughter but do read around on the forum as it is a gold mine of practical knowledge and experience that is often beyond the level nurses and consultants can provide. The key is finding out what works for you as an individual.

Thank you so much Barbara, this is all invaluable. She is 17 early next year so hopefully a DAFNE course ASAP after that (just looked it up). I have also not even heard of basal testing and it would not occur to me to tweak things like timing of bolus to that extent. Thank you for your tips. After the trauma of the diagnosis she has wanted to manage this on her own and limit the amount of time she spends thinking about it- for a while it felt like all i ever talked to her about was injecting/ insulin/ levels etc and she hated it. But i can see i do need to help her more. Thank you very much.

 

[rebrascora]

It is fine and necessary to take time out from being so intensive about it otherwise you hit "burn out" but it is quite important to get the basics right first. We all know it isn't easy and especially so for a teenager who is just at an age when they are wanting some independence, so I don't envy you or her your respective situations. Being a mother or father of a diabetic child or young adult must be 10x worse than being diabetic yourself! Maybe you could negotiate periods where you work on improving things and other periods where she manages as best she can without any mention of it. She will feel so much better once her levels are more stable.
You also need to be aware that a pump will take a lot of intensive work on your daughters part to set it up and it will also need regular tweaking, so don't just assume that a pump will do all the hard work for her or that the nurse will just set it up and away you go.... It just doesn't work like that from what I understand. Even the closed loop systems still need quite a bit of input and you really need to be able to manage your diabetes through MDI first because if the pump fails, you need to fall back on that and know what you are doing pretty sharpish as levels can rise quite high quite quickly. Failures are rare but they do happen and you can pretty much guarantee it will be a weekend, when there is less support or advice available, when it happens. 🙄

Anyway, I really hope you can find a way to work with your daughter in getting to grips with this but also enabling her to "be normal" as that is also important. Do you have the Ragnar Hanas Book. Type 1 Diabetes in Children, Adolescents and Young Adults?

 

[CharlotteScr]

It is fine and necessary to take time out from being so intensive about it otherwise you hit "burn out" but it is quite important to get the basics right first. We all know it isn't easy and especially so for a teenager who is just at an age when they are wanting some independence, so I don't envy you or her your respective situations. Being a mother or father of a diabetic child or young adult must be 10x worse than being diabetic yourself! Maybe you could negotiate periods where you work on improving things and other periods where she manages as best she can without any mention of it. She will feel so much better once her levels are more stable.
You also need to be aware that a pump will take a lot of intensive work on your daughters part to set it up and it will also need regular tweaking, so don't just assume that a pump will do all the hard work for her or that the nurse will just set it up and away you go.... It just doesn't work like that from what I understand. Even the closed loop systems still need quite a bit of input and you really need to be able to manage your diabetes through MDI first because if the pump fails, you need to fall back on that and know what you are doing pretty sharpish as levels can rise quite high quite quickly. Failures are rare but they do happen and you can pretty much guarantee it will be a weekend, when there is less support or advice available, when it happens. 🙄

Anyway, I really hope you can find a way to work with your daughter in getting to grips with this but also enabling her to "be normal" as that is also important. Do you have the Ragnar Hanas Book. Type 1 Diabetes in Children, Adolescents and Young Adults?

Great idea- she is very structured so agreeing set times to 'talk diabetes' (and them promising to shut up the rest of the time 🙂 would work with her. We do not have that book- i will get it now!

 

[CharlotteScr]

I thought i would just reply back here and let you know how it's gone. Daughter now has a funded pump after a long wait (15 months after funding confirmed). It is everything we hoped it would be and more- has utterly transformed her life, HbA1C is 5.8. I am so thankful for it.

I am aware of others with kids who are waiting much longer for a pump start and so if you are in this position, here are some of the things we did to try to get some increased urgency on the start, in case it's helpful. :
- contact your CCG Diabetes Lead and explain the situation and ask for support. (google the CCG and if you can't find a name/title, send an enquiry off to whoever asking who it is. Ours was unpromisingly titled 'End of life and Diabetes Strategy Lead' 😱!!). This person can help advocate on your behalf with the hospital, investigate delays, may have additional funding available to help speed things up in case it's helpful, e.g. providing admin support for the Trust team
- discuss the issue with your GP- if you need to change hospitals, their support is very helpful in finding out what the delays are like elsewhere and if they are accepting new referrals out-of-area. Plus advocating for you with the new hospital.
- Contact PALS, Head of Diabetes Department, Chief Exec of the Trust. Separately. Ask for meetings.
- Contact your local MP and ask them to advocate with the Trust on your behalf
- Write to Partha Kar and ask for support
- Find another parent in your position and work as a team
- Stay supportive to your diabetes paeds team. Present it as an issue to be solved together, not as a confrontation.
- know the NICE rules around eligibility to tech. Tell everyone how and why your child is eligible for the pump and CGM and describe clearly the difference it will make to their quality of life and outcomes. Quote only evidence used in the NICE guidance so that it cannot be refuted.

I hope this is helpful.

 

[Rob Oldfield]

Excellent work Charlotte. It obviously shouldn't be such an onerous task, but well done for getting it sorted.

 

[Thebearcametoo]

Glad she got it finally and it’s doing everything you wanted.