GP surgery and diabetes supplies for kids

[Wutanga1]

First post here.......my daughter (6) was recently diagnosed with type 1. After the hospital stay, we were told that we can get supplies through our pharmacy on repeat prescription. The hospital sent a letter to the GP surgery with a list of stuff we needed.

There started our issues. It took over a week for the items to be put on prescription, which may not be surprising - except that for some of the blood glucose monitoring supplies we were starting to run out. And for a week, we were told a constant stream of different issues why the items were not appearing on our repeat prescriptions list - 'our IT systems are down', 'the doctor doesn't seem to have read the note we sent them', etc.

At the end of that week, we were told that they had put a limit on the number of test strips we could order, and that we could only order once every x number of weeks - the problem being that the limit on the supplies was around 50% of what we need to cover that time period between repeat prescriptions. When we told the surgery this, they got hostile and told us that the doctor was 'surprised' at the amount of strips etc. we are using and that it should not be needed. This even though the amount needed over x time was stated in the hospital letter.

Now, we're doing what the hospital team told us - several fingerpricks a day, and sometimes we have to redo the pricking because of ketone checks, or because we can't get enough of a blood drop. I can"t imagine test strips are a high-cost item for the NHS......why the hassle? Is this something you would take somewhere like PALS?

 

[helli]

Test strips should not be rationed for people with Type 1 diabetes.
Diabetes UK has run some campaigns and lobbying to ensure this does not happen.
Therefore, I recommend calling the help line at the top of this page.

 

[grovesy]

Test strips depending on brand cost between £12.00 to £25.00 for 50 and Keytone strips are even more expensive. Have tried asking your Diabetic Nurse contacting your GP surgery, it seem to work foe some.

 

[Wutanga1]

OK so definitely not expensive supplies then. Wonder if the doctor was having a bad day. Will raise this at our clinic......

 

[Thebearcametoo]

Give your diabetes team the heads up and they will have a word with the GP surgery. At the beginning it can be a bit tricky to get everything set up but there should be no limits on how much you can order or how often. Your diabetes team will deal with the majority of things and it’s only the prescriptions that will need to come via the GP. It’s likely not to be an actual GP who is causing the issues but even so it shouldn’t happen.

 

[Wutanga1]

OK will do that (and report here!). Yes strange that the GP would be causing the issues but the receptionists we speak to always seem to say 'Doctor X said you shouldn't need......' etc.

 

[gll]

Can you ask them to get doctor x to give you a call and explain themselves why they say you can't get that amount? Or ask for/demand an emergency medication review for her?

Obviously you need to get this sorted but in an emergency, strips are available to buy yourself at the chemist, just ask for them - they are unlikely to be on the shelves (to be clear you totally shouldn't have to resort to this).

Good luck with resolving it. You have enough to worry about at the moment than dealing with this mess

 

[trophywench]

I venture to guess that the medical treatment of T1 especially for newly diagnosed children, has somewhat changed since the GP was taught about it.

Please please, ask your Clinic DSN to telephone said Dr and put him right. This really should not happen in this day and age - all GPs and the surgery nurses, should now be engaging in regular CPD to attempt to prevent such things happening. Good God - I've been retired from work for 14 years now and if I had to do it in the insurance industry, and it was compulsory, I'm jolly sure it must be in the medical profession!

 

[rayray119]

First post here.......my daughter (6) was recently diagnosed with type 1. After the hospital stay, we were told that we can get supplies through our pharmacy on repeat prescription. The hospital sent a letter to the GP surgery with a list of stuff we needed.

There started our issues. It took over a week for the items to be put on prescription, which may not be surprising - except that for some of the blood glucose monitoring supplies we were starting to run out. And for a week, we were told a constant stream of different issues why the items were not appearing on our repeat prescriptions list - 'our IT systems are down', 'the doctor doesn't seem to have read the note we sent them', etc.

At the end of that week, we were told that they had put a limit on the number of test strips we could order, and that we could only order once every x number of weeks - the problem being that the limit on the supplies was around 50% of what we need to cover that time period between repeat prescriptions. When we told the surgery this, they got hostile and told us that the doctor was 'surprised' at the amount of strips etc. we are using and that it should not be needed. This even though the amount needed over x time was stated in the hospital letter.

Now, we're doing what the hospital team told us - several fingerpricks a day, and sometimes we have to redo the pricking because of ketone checks, or because we can't get enough of a blood drop. I can"t imagine test strips are a high-cost item for the NHS......why the hassle? Is this something you would take somewhere like PALS?

no test strrips should not be limmited. something i found out. i recommend you take copys of nice guidelines to your gp and fright your case.

Recommendations | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk

 

[Wutanga1]

Yeah will do so.....just been to the pharmacy after ordering 4 boxes of strips through the surgery's repeat prescription system......only to be told the surgery sent through an order for only 50 strips. Go figure.

 

[rayray119]

Yeah will do so.....just been to the pharmacy after ordering 4 boxes of strips through the surgery's repeat prescription system......only to be told the surgery sent through an order for only 50 strips. Go figure.

yeah 50 stripsa month(is it meant to be for a month?) is nowhere near enough for anyone with type 1 diabetties.

 

[Wutanga1]

Yes, they put a limit of 1 x 50-strip box that can be ordered every 2 weeks. It's only been one week out of hospital but we're easily using a box a week (maybe more).

 

[Sally71]

When my daughter was diagnosed the hospital doctor wrote to the GP and stated that my daughter must be allowed AT LEAST 200 strips per month (so 4 boxes minimum). Don’t know whether we are particularly lucky with our GP but they have never argued. Could you get the hospital doctor to write such a letter perhaps? Good luck, I hope you can get it sorted soon.

 

[helli]

Yes, they put a limit of 1 x 50-strip box that can be ordered every 2 weeks. It's only been one week out of hospital but we're easily using a box a week (maybe more).

The NICE recommendations are to test AT LEAST 4 times a day. If you kept to the minimum and had no failed strips/tests, that would not last 2 weeks.

I am not sure if they are approved for young children but have you discussed using LIbre? This will not replace all finger pricks but should reduce the number needed. I know for bigger children (and adults) these have been great. But, as I say, I am not sure if there is a minimum age for Libre. Maybe someone more knowledgeable than me can comment?

 

[Thebearcametoo]

Yes, they put a limit of 1 x 50-strip box that can be ordered every 2 weeks. It's only been one week out of hospital but we're easily using a box a week (maybe more).

That’s ridiculous. Let the hospital team put a rocket up them.

 

[Lily123]

Ask your DSN to phone your GP. GPs won’t know much about diabetes and should never limit strips

 

[Sally71]

The NICE recommendations are to test AT LEAST 4 times a day. If you kept to the minimum and had no failed strips/tests, that would not last 2 weeks.

I am not sure if they are approved for young children but have you discussed using LIbre? This will not replace all finger pricks but should reduce the number needed. I know for bigger children (and adults) these have been great. But, as I say, I am not sure if there is a minimum age for Libre. Maybe someone more knowledgeable than me can comment?

Libre is approved for age 4 upwards

 

[T1DMum]

Hi we had the same issue with GP practice rejected our request for testing strips. I phoned them and explained to the receptionist that he's only 10, newly diagnosed and getting through so many more strips than he eventually will because he wastes quite a few and he was testing sometimes 18-20 times a day. She was reluctant at first but she did listen and put the request through again with a note to the GP and also requested that the practice pharmacist phone me, which she did and she was great - she was really pleased to hear that he was frequently testing.
After that initial period things have settled down on the testing front as I imagine they do for lots of families and he has a Libre now but I still like to have loads of strips just in case.
If they won't listen to you then 100% get your diabetes nurse to contact them and explain.

 

[Wutanga1]

So an update on this one.....spoke to the hospital team when we had our clinic, and they've now sent another letter to the GP clearly stating the number of boxes we can order. So hopefully this sorts it. Funny isn't it - a problem ordering test strips, while they put through an order for (the much more expensive) insulin pens (for school etc) with no issues.