Type 1 - Issues with Repeat Prescriptions

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Karly

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Type 1
Hi everyone. I am a relatively newly diagnosed type 1 diabetic (diagnosed last summer at the age of 54). After being bombarded with information and getting to grips with insulin injections etc I have been doing really well with getting my blood sugar levels under control and getting used to a new way of living. The issues I have had since diagnosis have been with my GP. I have already had to ring them to complain because I had a prescription for insulin pen needles held up by them because they told me they weren't due to be reordered yet! (I soon put them right on that score!). Bearing in mind they only let me order 100 at a time which doesn't even last a month! Yesterday I went to order more needles and libre sensors (I can only order 2 at a time!) and it was telling me I had to have a review before I could reorder anything! My doctor has not been in touch to tell me I need a review and I last saw the nurse at the GP surgery last November. Anyway they told me prescriptions have to be reviewed every 6 months so they have let me order what I need but said I would need a review in May which would be 6 months from when I last saw the nurse. They said I might be able to just ring and do the review over the phone. This seems to be bonkers when I have type 1 diabetes and I am hardly going to reach a time in the future when I won't need the medication! When I finally did manage to order what I needed it now seems that 2 items have disappeared from my repeat prescriptions because I haven't ordered them for ages. These are ketone testing strips and lancets for my finger pricking device. These are items I will need at some point in the future so I'm not happy they have gone from my repeat prescriptions. Is this normal for everyone? Do I have to ring the surgery again to ask for them to be put back on the list of things I can order? Also is anybody else only able to order 100 needles at a time and 2 libre sensors at a time? I can also only order 1 lantus insulin pen at a time. I feel as though I spend half my time reordering items and going to the chemist to pick things up.

Anyway I want to say a massive thank you to everyone who posts on this forum. I have spent the last few months reading your posts and I have learnt so much. There is so much knowledge on here that I wouldn't have got from anywhere else. You are all amazing!
 
Most GPs insist on at least an annual medication review. This is run in with my annual Diabetes review at the surgery, and they seem to have it down to a fine art.
I only get 2 Libre sensors a month, I think this is fairly standard. Anything else, you should be prescribed enough to last you a month, so if you use more than 100 needles, they should give you the option to get two boxes at a time. With my repeat, I go online and tick which ones I need each month, which isn’t always all of them. (I get a pack of 5 cartridges of insulin at a time, which last several months, so I don’t always need to order more).
Do you have a spare Lantus pen? If they only let you have one at a time, you need one in hand in case you drop and crack one, or find it’s compromised in some way. Also, if you become ill so times insulin needs can go up dramatically, so you may find you’re using it at a faster rate and one pen won’t last the month.
I’m afraid you do get used to trotting down to the pharmacy every four weeks.
Lancets and ketone strips have disappeared from mine, because I hardly ever order any, but there is a box for messages on the repeat system, and I could use that to ask for some more when I need. I recently used it to ask for a replacement insulin pen (I have a reusable one, which you may want to move on to, it’s less plastic waste, and it feels more robust, it also remembers my last dose and displays it, for those 'did I, didn’t I? moments' when I can’t remember if I did my injection.
This is how it works at my surgery, No doubt other people will be along with how their system works, it seems to vary from place to place.
 
Have a word with the folks on the helpline. They’ll tell you exactly what to say to the surgery to get what you need without having to jump through so many hoops so regularly.
 
Many years ago, my surgery tried to align all my medication so I could order a "batch" once a month. They soon realised this is not possible and since then, I have ordered what I want when I need it. This includes ordering some items more frequently so I can have a stash for holidays and Christmas.
They have suggested a 6 monthly review and I find it useful to get a hba1c test twice a year to make sure I am still "on track".
They push for a "review" at least once a year. I believe this is a regulatory requirement. It is not a case of "we have Type 1 for life so our diabetes prescriptions change will not change." Our insulin needs vary over time and the treatments available change so I do not feel it is unreasonable. I usually pushed back on the GP surgery review saying they had the details of my annual review at the diabetes clinic. After nearly 20 years, I still need to remind my surgery of the diabetes clinic review every year but they seem to be happy, especially when I take up their "offer" of a blood test.
One year, I also had the diabetes review. I felt the GP surgery based DSN had very limited knowledge of Type 1 diabetes and it was a waste of time.

Short answer
- a 12 monthly review seems to be a requirement for all repeat medication. But, if you have a review at the diabetes clinic this should be enough
- a regular hba1c test is useful
- you should be able to order as much diabetes kit as you need. There is no need for it to be restricted. But don't expect it to be a case of only needing to go to the pharmacy once a month.
 
Simple solution to this problem is get hospital clinic involved, so consultant or dsn, they will write to gp surgery to say that your items shouldn't be restricted.
 
nonethewiser said:
Simple solution to this problem is get hospital clinic involved, so consultant or dsn, they will write to gp surgery to say that your items shouldn't be restricted.
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Yes, reviews now and again make sense. Withholding medication (particularly essential things like insulin) to try and ensure participation just doesn't make sense and really shouldn't happen.
 
Bruce Stephens said:
Yes, reviews now and again make sense. Withholding medication (particularly essential things like insulin) to try and ensure participation just doesn't make sense and really shouldn't happen.
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Let's be honest here, don't think many of us would have had care free time with meds not being restricted over the years, know I have with test strips being 1 example.
 
Hello @Karly, My experience is broadly as stated by @Robin.

I'm aware that there have been changes imposed on GP Surgeries in the last few months. Some of these have possibly arisen with the changeover from lots of small Cost Centre Groups (CCGs) to huge (and probably inevitably bureaucratic and inflexible) Integrated Care Systems (ICSs). But also apparently, in a phone call from my GP Surgery Reception, the NHS at large have changed some of the categories of medicines that can remain on repeat prescriptions. I use an unusual fungal cream, which has a short shelf life once opened but which had dropped off my repeats; and I was told to just request it in the remarks box for online repeats and my records showed it should be supplied without further discussion. Reading between the lines a lot of my repeat meds are auto re-ordered by an administrator, without necessarily needing a specific authorisation from a GP. Anyway there are changes going on Nationally and these may end up needing their own "workarounds" by Surgeries.

After 3 yrs, I seem to have arrived at a steady state with my repeats and so, for example get 2x 100 needles monthly, but actually need less and I omit needles from my repeats occasionally to keep my stocks manageable. I'm pretty sure that Libre can only be provided in 2's, every 4 weeks, and this is England wide if not UK wide. I had a full discussion with the senior Practice Nurse during a medical and prescriptions review in early 2022 and common sense has broadly since prevailed.

Hopefully you are experiencing teething problems with regime changes and post Covid readjustment- along with increased digital methods for GP Surgeries in conjunction with Pharmacies. You might find it useful to send a 'friendly' email to the Surgery marked for the attention of the Practice Manager explaining what you believe to be necessary repeat prescriptions without annual or 6 monthly reviews and how stressful it can be to have necessary routine medications arbitrarily stopped pending review. Ask for a written reply, by email or letter. Once you have a response, you can wrestle with the detail, if necessary / unsatisfactory. By getting these things in writing makes it easier to tease out some common sense. I do know that the NHS is trying to improve the current wasteful, costly and unnecessary stockpiling of medications by patients. Like all these things the intention is good, the implementation often less so.

The curious thing about Common Sense is that is rarely common.
 
I find that my diabetes review with the diabetes trained practice nurse is useful for sorting these sort of glitches out. She should be able to do the repeat prescription review, adjust anything that I need more of or arrange the return of anything which has disappeared off my repeat list. She also used to do the toe tickle/feet pulse check, BP, weight, although this has recently been palmed off onto the HCA at the surgery, but with having telephone consultations with the clinic I don't get any of that done there anymore.
I think it is odd that your appointment with the nurse in Nov wasn't classed as your medication review. Yes the diabetes nurse has limited understanding of Type 1 but she is there to support you and is usually able to prescribe and it is her role to iron out issues like this which she is perfectly capable of doing.

Like @Robin, my medication and supplies are available once a month and only 2 Libre but 2 boxes of needles are standard and 5 cartridges of insulin which last me at least a couple of months, so I order what I need once a month but certainly not everything on my list every time. In fact, I would quite like my lancets to be removed as my box of 200 is well beyond my human lifespan when changed annually on St Swithin's day. I also want the Glucogel removed as I am unlikely to need that, as happy with JBs or Dextrose/Glucose tablets.
 
Thank you so much everyone! It's useful to know that other GP surgeries are generally in line with mine. I do find it stressful when I go to reorder something online to find out it's been withheld for whatever reason. When you know you need something to keep you alive it's upsetting when it feels like unnecessary obstacles are being put in the way! It does seem odd than I can only order 1 Lantus pen at a time but I can order 5 Novorapid pens! I use roughly the same units of each per day so I'll speak to the surgery to see if they will change this and also ask if I can order 2 boxes of 100 needles at a time. Having gone all my life being fit and healthy and barely going near a doctor it has been a real learning curve finding out how these things work!

Thanks again. This forum is great!
 
Karly said:
Hi everyone. I am a relatively newly diagnosed type 1 diabetic (diagnosed last summer at the age of 54). After being bombarded with information and getting to grips with insulin injections etc I have been doing really well with getting my blood sugar levels under control and getting used to a new way of living. The issues I have had since diagnosis have been with my GP. I have already had to ring them to complain because I had a prescription for insulin pen needles held up by them because they told me they weren't due to be reordered yet! (I soon put them right on that score!). Bearing in mind they only let me order 100 at a time which doesn't even last a month! Yesterday I went to order more needles and libre sensors (I can only order 2 at a time!) and it was telling me I had to have a review before I could reorder anything! My doctor has not been in touch to tell me I need a review and I last saw the nurse at the GP surgery last November. Anyway they told me prescriptions have to be reviewed every 6 months so they have let me order what I need but said I would need a review in May which would be 6 months from when I last saw the nurse. They said I might be able to just ring and do the review over the phone. This seems to be bonkers when I have type 1 diabetes and I am hardly going to reach a time in the future when I won't need the medication! When I finally did manage to order what I needed it now seems that 2 items have disappeared from my repeat prescriptions because I haven't ordered them for ages. These are ketone testing strips and lancets for my finger pricking device. These are items I will need at some point in the future so I'm not happy they have gone from my repeat prescriptions. Is this normal for everyone? Do I have to ring the surgery again to ask for them to be put back on the list of things I can order? Also is anybody else only able to order 100 needles at a time and 2 libre sensors at a time? I can also only order 1 lantus insulin pen at a time. I feel as though I spend half my time reordering items and going to the chemist to pick things up.

Anyway I want to say a massive thank you to everyone who posts on this forum. I have spent the last few months reading your posts and I have learnt so much. There is so much knowledge on here that I wouldn't have got from anywhere else. You are all amazing!
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Hi,

I did a post a while ago on the forum, which nobody understood regarding this.

I was suggesting that if you are diabetic and have been prescribed insulin, and are likely to need this for the foreseeable future, then why not free up g.p"s from writing repeat prescriptions and allow us to just pop in to the pharmacy and get our supplies when we need them. Why do we need a prescription in other words?

Someone suggested, insulin would dangerous in the hands of a diabetic using insulin.
 
Yes its a valid point @Amity Island. I do sometimes think there should be an easier way and less hoops to jump through to get medical supplies, particularly for people with long term chronic health conditions like us!
 
Karly said:
Yes its a valid point @Amity Island. I do sometimes think there should be an easier way and less hoops to jump through to get medical supplies, particularly for people with long term chronic health conditions like us!
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I wouldn't mind having a few months supplies in hand. Takes a lot of pressure, time, stress, worry and allows for unexpected events.

It's not like we're going to be down the market at the weekend flogging our insulin, pen needles or libre 2's. Lol.
 
Yes thats exactly how I feel! It's stressful only being able to order a small amount of anything on repeat prescription. I'm wondering what happens if I put a new libre sensor on my arm and accidentally knock it off a day or two later. Will the GP allow me to order another one before it's due?
 
Karly said:
Thank you so much everyone! It's useful to know that other GP surgeries are generally in line with mine. I do find it stressful when I go to reorder something online to find out it's been withheld for whatever reason. When you know you need something to keep you alive it's upsetting when it feels like unnecessary obstacles are being put in the way! It does seem odd than I can only order 1 Lantus pen at a time but I can order 5 Novorapid pens! I use roughly the same units of each per day so I'll speak to the surgery to see if they will change this and also ask if I can order 2 boxes of 100 needles at a time. Having gone all my life being fit and healthy and barely going near a doctor it has been a real learning curve finding out how these things work!

Thanks again. This forum is great!
Click to expand...

I've had notes about "If you don't come for a review you won't be able to order your repeats!!!" in the past, so I took the time to go in to see them.

Of course the GP had no idea why I was there so breezily asked me what I wanted to see him about" so I was able to calmly explain that the practice had threatened me with witholding my insulin supply which could potentially kill me. At which he looked rather shocked, apologised profusely, and said "Oh! We'd never do that!".

I was also able to suggest more than a 1 month's supply to save me time and reduce the burden of prescription fulfilling for them - since, as you say @Karly I'm not likely to not need insulin of some sort at any point in the near future.

Sometimes I think it can be worth pointing out how alarming and upsetting the standard (and quite sensible) processes can be when applied to some specific situations - like T1D.

I'm glad they check up and keep an eye on which meds are still needed - you hear horror stories of automatic repeat prescription deliveries ending up with heaps of unused, unwanted, and unreturnable meds in some houses when the home owner goes into care or whatever.

But I'm also all for individualised care and adapting the general systems to work better for different people 🙂
 
Yes @everydayupsanddowns the first letter I had from my GP asking me to go in for my first review stated if I didn't go in they could withhold my medication! I'm assuming they are just standard letters that they send out to everyone but I thought it was so unnecessary and actually scary to think the medication I needed to stay alive could be withheld from me! I had only been diagnosed 4 months previously so it was all very new as well at that point.
 
Karly said:
I'm assuming they are just standard letters that they send out to everyone but I thought it was so unnecessary and actually scary to think the medication I needed to stay alive could be withheld from me!
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I'm sure it's just a standard policy, but it feels pretty stupid for very many things on repeat. For some things I can imagine it's defensible (if they really do think it's likely the patient won't need another prescription of whatever it is), but even if they want to consider adjusting a BP drug or something, it seems daft to risk the patient not being able to take their existing dose just because you want to have them come in for a review.

Last year when I was a month or two late for the annual review the GP pharmacist called me and organised a blood test and appointment over the phone. Far more civilised and I'd guess much more effective.
 
That all sounds completely normal, it’s standard to get one month worth of supplies including libre sensors, and for prescriptions to be reviewed every 6 months. Things drop off mine if not ordered too, but eg ketone strips you can only keep open for 3 months so would usually order before they drop off. Lancets, can’t imagine why I’d ever need another box.
 
Karly said:
Yes thats exactly how I feel! It's stressful only being able to order a small amount of anything on repeat prescription. I'm wondering what happens if I put a new libre sensor on my arm and accidentally knock it off a day or two later. Will the GP allow me to order another one before it's due?
Click to expand...
No, you should report it to abbot if you knock it off and they will post you a new one.
 
Thank you Lucyr
 
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