Postcode Lottery for Libre & IPorts

[Libby3781]

Postcode lottery for libre & other diabetes products.

Myself, my mum & my sister all have type 2 diabetes. I have been on insulin pretty much since the 2nd year after my diagnosis, & struggled considerably.

Recently, both my mum & sister have seen there diabetes nurse. They have both been given the libre on prescription immediately. My sister has also been given the iports on prescription immediately (https://mmc.medtronic-diabetes.co.uk/iport/) device for injecting into. There nurse can’t understand why I have not been offered both of these devices especially due to the fact I’m struggling.

I have struggled especially with injecting & on asking my diabetes nurse could I have the iports was refused . I was told they were not available on prescription. However, before this appointment, I did my research & knew they were available on prescription.

Is it now wrong of me to feel annoyed, angry & even jealous?

My mum & sister get everything to make managing there diabetes easier. Mum, injects 4 times a day, sister twice a day. I have been injecting 4/5 times a day.

I live in the neighbouring county to my mum & sister & am under a different health board for the nhs. I appreciate the costs the nhs has, but how is it fair for different areas within the UK, to all have different rules & criteria on whether people can have the libre & iports.

I also asked my diabetes nurse could I have the libre, & was refused for that as well. I really feel like why should I bother when everyday is a struggle. Feel completely dishearten if that makes any sense.

 

[Jaylee]

Postcode lottery for libre & other diabetes products.

Myself, my mum & my sister all have type 2 diabetes. I have been on insulin pretty much since the 2nd year after my diagnosis, & struggled considerably.

Recently, both my mum & sister have seen there diabetes nurse. They have both been given the libre on prescription immediately. My sister has also been given the iports on prescription immediately (https://mmc.medtronic-diabetes.co.uk/iport/) device for injecting into. There nurse can’t understand why I have not been offered both of these devices especially due to the fact I’m struggling.

I have struggled especially with injecting & on asking my diabetes nurse could I have the iports was refused . I was told they were not available on prescription. However, before this appointment, I did my research & knew they were available on prescription.

Is it now wrong of me to feel annoyed, angry & even jealous?

My mum & sister get everything to make managing there diabetes easier. Mum, injects 4 times a day, sister twice a day. I have been injecting 4/5 times a day.

I live in the neighbouring county to my mum & sister & am under a different health board for the nhs. I appreciate the costs the nhs has, but how is it fair for different areas within the UK, to all have different rules & criteria on whether people can have the libre & iports.

I also asked my diabetes nurse could I have the libre, & was refused for that as well. I really feel like why should I bother when everyday is a struggle. Feel completely dishearten if that makes any sense.

Hi,

You maybe better off speaking to your endo/consultant. (To instuct the GP to put em on script?) As opposed to the nurse?
I find DSNs a bit of a dead end, for that sort of "thing."

Best wishes..

 

[Libby3781]

Hi,

You maybe better off speaking to your endo/consultant. (To instuct the GP to put em on script?) As opposed to the nurse?
I find DSNs a bit of a dead end, for that sort of "thing."

Best wishes..

Thank you.

I am primarily under the hospital for everything diabetes related. Therefore, all of the decisions are made by the nurse (as far as I’m aware). I’ve had telephone consultation only with my nurse and consultant so far this year.

My mum has suggested I try and arrange a face to face appointment with my nurse. Allowing us to challenge this decision and ask if I can have the libre and iports

Have any of you challenged having the libre with your nurse/consultant? If so, did you have a successful outcome?

Thanks in advance

 

[Hertfordshiremum]

Thank you.

I am primarily under the hospital for everything diabetes related. Therefore, all of the decisions are made by the nurse (as far as I’m aware). I’ve had telephone consultation only with my nurse and consultant so far this year.

My mum has suggested I try and arrange a face to face appointment with my nurse. Allowing us to challenge this decision and ask if I can have the libre and iports

Have any of you challenged having the libre with your nurse/consultant? If so, did you have a successful outcome?

Thanks in advance

Hi I asked for the Libre about 18months before finally getting it, told no due to lack of funding and my HbA1c was too good by my nurse I self funded for a while, was definitely better then asked for this on prescription. She was using the data from the Libre in all our appointments ! Finally she agreed to add me to a waiting list and I eventually received a call from an endo at the hospital. I am type 1, diagnosed 4 years ago. I got it about 6 months before they changed the rules that all Type 1’s can now automatically have it. Can I ask you what your mum and sister think of the Iport’s, any good? I have a real problem with bruising, I have switched to silicone coated needles but am still covered in bruises some weeks. I am on insulin only and have 5-6 injections a day Thanks

 

[Libby3781]

Hi I asked for the Libre about 18months before finally getting it, told no due to lack of funding and my HbA1c was too good by my nurse I self funded for a while, was definitely better then asked for this on prescription. She was using the data from the Libre in all our appointments ! Finally she agreed to add me to a waiting list and I eventually received a call from an endo at the hospital. I am type 1, diagnosed 4 years ago. I got it about 6 months before they changed the rules that all Type 1’s can now automatically have it. Can I ask you what your mum and sister think of the Iport’s, any good? I have a real problem with bruising, I have switched to silicone coated needles but am still covered in bruises some weeks. I am on insulin only and have 5-6 injections a day Thanks

I appreciate the funding side of things. However, what I struggle to accept if your struggling and there’s devices available that can help you why aren’t you offered them.
My glucose levels are either dangerously high, or extremely low. I’m on insulin 4 times a day, with meals and bedtime.

My mum and sister haven’t had the iports yet. However, I have self funded those for myself. I personally find them great. On the occasions that I wear them, it’s normally the best time I have the full insulin dose.
I struggle to inject & come out in bruising after every injection. Due to struggling so much I use the TickleFlex (https://www.tickleflex.com) to try and help with the injecting.
Unfortunately, I find with this it’s hit & miss whether I get the full dosage. I struggle so much there’s no way I can inject without using the TickleFlex.

 

[AndBreathe]

I appreciate the funding side of things. However, what I struggle to accept if your struggling and there’s devices available that can help you why aren’t you offered them.
My glucose levels are either dangerously high, or extremely low. I’m on insulin 4 times a day, with meals and bedtime.

My mum and sister haven’t had the iports yet. However, I have self funded those for myself. I personally find them great. On the occasions that I wear them, it’s normally the best time I have the full insulin dose.
I struggle to inject & come out in bruising after every injection. Due to struggling so much I use the TickleFlex (https://www.tickleflex.com) to try and help with the injecting.
Unfortunately, I find with this it’s hit & miss whether I get the full dosage. I struggle so much there’s no way I can inject without using the TickleFlex.

Have you considered writing to your Consultant about this? If it is in writing, they will have to think about how they respond. Verbally, it's much easier to brush off, in my view.

In that letter, I would not mention that family members have been given these items without resistance, because YOU should need it because of YOUR challenges. Other individuals are no concern of your team, and it would be awful to be turned down because they consider you want it just because they get it.

 

[Hertfordshiremum]

I appreciate the funding side of things. However, what I struggle to accept if your struggling and there’s devices available that can help you why aren’t you offered them.
My glucose levels are either dangerously high, or extremely low. I’m on insulin 4 times a day, with meals and bedtime.

My mum and sister haven’t had the iports yet. However, I have self funded those for myself. I personally find them great. On the occasions that I wear them, it’s normally the best time I have the full insulin dose.
I struggle to inject & come out in bruising after every injection. Due to struggling so much I use the TickleFlex (https://www.tickleflex.com) to try and help with the injecting.
Unfortunately, I find with this it’s hit & miss whether I get the full dosage. I struggle so much there’s no way I can inject without using the TickleFlex.

I agree with And Breathe, write to them and ask for a written reply. Remember I did get there in the end so fingers crossed for you. Thanks for the Iport feedback I will be asking about this at my next meeting