Does my 9-year daughter need to wait in the long queue to get Insulin Pump?

[koro]

My daughter (9 years old) has type-1 diabetes and her care team is in the Paed in a Hospital.
My daughter is now using insulin injection and glucose control is quite good thanks to my wife's restless efforts.
We have kept requesting to the care team to introduce insulin pump in order to reduce my daughter's burden (several injections in her school life) and my wife's burden for the numerous number of injections every day, but the care team's response has been always extremely sluggish. It took more than 3 months just to be invited to a pump-introduction program, before that I sent more than 5 reminders to request for the invitation. I could at last join the introductive meeting held by the hospital in February 2022 and submitted (on the same day I attended the meeting) a questionnaire which the hospital requested to the attendees to submit in order to proceed to the next step. Since then, again I have had to send considerable numbers of reminders to ask for the hospital's response, just resulting in no response at all. Then I made official complaint to the hospital through customer contact for the complaint in the Hospital. After that, I met a diabetes specialist nurse, a member of care team, and she apologized for no response and explained that my daughter needs to wait a little longer because they have a long waiting list of patients who is waiting for new introduction of pump. She promised that she will let me know a rough timeline for my daughter to be able to introduce the pump after the hospital's internal meeting to review the waiting list which was held on the same day and just after we met her. It has passed more than one month without any contact from the nurse.
Is this the normal and typical experience for the diabetes-patients who are waiting for the pump?
It would be highly appreciated if you give me some advices about possible measures by which I can break through the current situation...

 

[Pumper_Sue]

Hi Koro,
trying to get a pump is very frustrating for all concerned. Your experience is about the same as everyone else's I suspect. Which obviously doesn't make you feel any better.

You do have to remember though that there are very few staff so stretched to the limit, trying to oversee pump induction and being able to offer all the support needed to some patients to keep them safe.
It is a case of having to wait your turn the same as everyone else.

Obviously and quite rightly so your daughter is more important then everyone else's child (all parents think the same) in your eyes.

We have kept requesting to the care team to introduce insulin pump in order to reduce my daughter's burden (several injections in her school life) and my wife's burden for the numerous number of injections every day,

I hate to tell you this but the burden as you call it will increase ten fold when starting on a pump, it's not plug and play and involves an awful lot of hard work

Also as your daughter has good control then (good work parents) obviously this would be taken into account as to who is prioritised for a pump.

 

[koro]

Hi Pumper_Sue,
Thank you for your reply which is quite informative and helpful.
I come to feel a little bit better to know that my frustration is not only the case with my daughter.
I still believe that pump will enable my daughter's glucose control better and will keep waiting for my turn comes.

 

[Pumper_Sue]

Hi Pumper_Sue,
Thank you for your reply which is quite informative and helpful.
I come to feel a little bit better to know that my frustration is not only the case with my daughter.
I still believe that pump will enable my daughter's glucose control better and will keep waiting for my turn comes.

Hiya,
yes it's so frustrating isn't?
So you have a head start invest in the book pumping insulin by John Walsh (Amazon) This book is known as the pumpers Bible and worth it's weight in gold 🙂
Find out what pumps are offered at the clinic and do your research so you don't end up like a fish out of water to start with.

A pump is def life changing regarding quality of life and management of diabetes as long as the parent or person using the pump puts in the effort to use it correctly.
A good saying is you get out what you put in 🙂

 

[everydayupsanddowns]

Welcome to the forum @koro

Sorry that your application for an insulin pump for your daughter is not moving as quickly as you would like.

It seems to vary a little from area to area and from region to region, with some places having a more speedy approach to getting people assessed than others. It can be very frustrating to feel you are just hanging around for no good reason.

Of course it’s very important that people are properly assessed and prepared for pump therapy, in order to make the transition as smooth as possible - but of course that’s little comfort to you while your wait continues.

The book that @Pumper_Sue recommends is very helpful, and includes chapters at the beginning which are helpful before you get an insulin pump, and can help you understand the options available - so it’s worth considering doing that groundwork ahead of time.

Keep us posted with any updates, and let us know how your daughter’s application progresses.

 

[Thebearcametoo]

I can tell you our experience in north Oxfordshire. Once we wanted a pump we went to one of the information sessions. These are only run 3 times a year so it depends when they come up as to how soon you get on one. Once we’d been to one we said we were interested but it wasn’t until the next regular 3 monthly clinic that it was discussed fully. At this point they put the funding application in which took about 6 weeks to go through and we went on the list for the training sessions. As it was then during covid it took longer than usual but even in normal times it’s not immediate. Once the sessions were complete (one in person with one parent only and one online) the team brought the pump and did the set up etc. the first few weeks require a fair bit of input as algorithms get tweaked so it is labour intensive for the team and different areas have different numbers of staff capable of supporting.


Having a pump still requires a lot of input and being able to manage everything for injections and knowing how to change ratios as insulin needs change is all good practice. We’ve had a break from the pump for about 6 months now as cannula changes became a battle. So yes it cuts down on injections but the set change (every 3 days or so) is a bigger task. My kid was diagnosed just before 9 and is now 12. We have dexcom and a pump available but mostly use finger pricks and injections because it’s quick and he prefers it. The dexcom has been useful for data gathering and tweaking ratios (and the alarms are helpful) but we get a good HBA1C without it and you still have to carb count even with all the technology.

If you have access to a CGM that will help massively with knowing where to tweak things with bolus and basal and we did that whilst waiting for the pump.


If you’re really unhappy with the wait you can switch to another trust but that can be fraught with other issues and make routine appointments more difficult.

 

[rebrascora]

If you’re really unhappy with the wait you can switch to another trust but that can be fraught with other issues and make routine appointments more difficult.

I think it is also important to bear in mind that diabetes clinics have been put under increased strain by Covid and are not only quite badly backlogged but having an increased number of patients because of Covid triggering or identifying new cases with no real increase in staffing. I would say that jumping ship to a different trust at this stage may well put you further back down the ladder rather than advance your case. You may just need to be more patient and perhaps recognize that a pump isn't necessarily the silver bullet people sometimes expect.

 

[koro]

Hi,

Many thanks for all comments, thanks to which I came to realize that I have been quite selfish and reflect on my comments far too indiscreet. I would like to wait for my turn come with in appreciation NHS. Will report a happy time would come!

 

[rebrascora]

You can learn a lot about improving your use of MDi by posting and reading messages on this forum. There are people here with 50 years with diabetes, who are still learning. Pumps take a lot of understanding and input, so doing plenty of research now and asking questions here will stand you in good stead for when you get to the top of the list for your daughter's pump.