Hello I’m Maria and I have a 15 year old daughter who has been diagnosed with type 1 diabetes

[Maria&Becky]

Good afternoon
I need some advice please
I have a 15 year old daughter who has type 1 diabetes, we applied for an insulin pump, the Omni Pod, which our diabetes team said that Becky may be able to get due to the amount of dancing she does.
We have just received an email to say she hasn’t been applauded for it but we can try again.
5 days a week she trains 2-4hrs a day and she also does 10-12hrs on a Sunday for Competing at Dance Competitions .
When she is dancing there is no specific times she can choose to eat or drink and when she is off the dance floor you just need to eat or pick food in between the next call back to get back on the dance floor.
So bearing this in mind Becky finds it really hard to inject herself in a busy area and you don’t have time to always go off to a private place as there are always queues in toilets and at dance competitions it’s a busy place
So having a insulin pump would work really well for her .
Is there any advice for us before we appeal.
Kind regards

 

[Thebearcametoo]

Hi. Which team are you under?
NHS funding for pumps is easy until the child is 12 but gets harder if children are diagnosed older than that (or haven’t used a pump before that). There should be ways to get funding for pumps though if the team are clever in their application (our team at the JR will always try to get older children funding for a pump especially for active kids). Did you only apply for the omnipod? Our team is no longer supporting the omnipod for new patients (they will continue to support those already using it) so it may be an issue specific to the omnipod.

I would have a proper chat with your team to see what they suggest. Have you been on a pump information day to see what pumps are supported by your team? It may be that there is a different one that is more suitable anyway. Our experience is that it’s not fast to get everything in place. She sounds like a good candidate for a pump though given her dancing.

 

[Maria&Becky]

Hi. Which team are you under?
NHS funding for pumps is easy until the child is 12 but gets harder if children are diagnosed older than that (or haven’t used a pump before that). There should be ways to get funding for pumps though if the team are clever in their application (our team at the JR will always try to get older children funding for a pump especially for active kids). Did you only apply for the omnipod? Our team is no longer supporting the omnipod for new patients (they will continue to support those already using it) so it may be an issue specific to the omnipod.

I would have a proper chat with your team to see what they suggest. Have you been on a pump information day to see what pumps are supported by your team? It may be that there is a different one that is more suitable anyway. Our experience is that it’s not fast to get everything in place. She sounds like a good candidate for a pump though given her dancing.

Thankyou for getting back to me,
We are under Colchester Essex,
do you have any tips on what to do or say for a covering letter to back up our Appeal, it was very disappointing as her consultant said she had a very good case so we got our hopes up and then got the sad news to say she couldn’t get it

 

[Thebearcametoo]

I would talk to the team first. They should be able to support you. Ask for a referral to a diabetes specialist dietician who has a special interest in sport if there isn’t already one on your team to add some more boost to the appeal.

 

[Deleted member 27171]

Hi Maria,

It might be worth contacting JDRF: https://jdrf.org.uk/about-us/contact-us/ - the pump advocacy charity InPUt merged with them a couple of years back so you should be able to get support with your appeal through them.

Have the team explained the reason for the decision? If not it would be good to ask so you know exactly what it is you are appealing. You need to be able to counter their reasoning. I would also expect the team to be supporting you in making your appeal if they are supportive of your daughter‘s application for a pump so do ask them for help.

 

[stephknits]

If not, could you look to change areas for your diabetes care. Myself and my daughter are under West Suffolk hospital who have a excellent record getting people pumps. Our adult team have never had anyone turned down. I presume the children's team is much the same ( my daughter is 16, newly diagnosed and not keen on a pump ATM, but our consultant and DSN have already mentioned it as an option)

 

[everydayupsanddowns]

Welcome to the forum @Maria&Becky

Sorry to hear that your pump funding wasn’t approved - did you get any details as to why it was denied? Was it the pump in general? Or something specific to Omnipod (some clinics only support a limited number of options at the moment - though I think work is being done at a high level to remove this ‘postcode lottery’).

Is there something specific about a patch pump? Or might another pump work just as well?

When I was a gym-goer I would disconnect for the duration of the activity and then reconnect after showering - I would imagine dancing would be at least as strenuous as I ever was at a gym!

There are hybrid patch pumps like Kaleido and Solo, and small tubed pumps like tSlim which may give other options?

Otherwise you can dig-in and push for Omnipod - with INPUT’s support I am sure you could put a compelling case together.

Has your daughter tried wearing a ‘dummy pod’ to make sure it is viable (and the outline and adhesive of the pod is appropriate for the dance style/costume/level of exertion. Omnipod used to send out dummy pods a few years back - might be worth checking before you get stuck into an appeal?