Type 1 - threatened test strip withdrawal

[Paul520785]

T1 for about 60 years > Insulin injections twice daily >
Now Retired and finding more jobs to do and needing to test more often in part to comply with DVLA rules
After being prescribed 6 boxes of strips per month for many years and achieving my consultant's target levels and one severe hypo in 20 years I find that the test strips are now being restricted.
The current prescription I have equates to 4.5 boxes for each request. After working on this level by just ordering each time I run low, I have now received a letter from my surgery which is both incorrect (Not discussed just stated) and could be interpreted as a refusal to provide the necessary medication for a long term condition.

So what next now that I have an "official" statement from the surgery??

Any suggestions or thoughts would be appreciated as they must be better than my first reaction to tell the surgery that I would no longer be using insulin as they were not providing the tool to measure the effect of insulin and exercise which creates a danger both to me and others.

 

[AroundAgain]

Do you think they may have got your name mixed up with someone else (similar name)? That's what I would think has happened. It seems this letter has come right out of the blue and not discussed several times with you previously. I feel you should visit this Yvette Ellis, who is responsible for the letter, show her this letter, explain how you just can't believe this is meant for you etc and wait while she checks your records etc.

If no suitable outcome there, then I would see your GP, show him the letter and see what his reaction is. You will also have your Diabetic Nurse who you could talk to (but wonder if she has instigated this?)

Once sorted out, or not, I think a complaint to the Practice Manager would be in order

I'll be interested to hear the outcome. If necessary, I think you would be reasonable to fight your corner here.

Good luck.

 

[Shar67]

Show them this
https://www.gov.uk/government/uploa.../Safe-care-of-people-with-type-1-diabetes.pdf
Tell them you will make an official complaint if they don't issue with the number of strips you need

By the way you can still see your name and address under yellow covers, maybe best to remove top part of letter.

 

[catapillar]

Ha! The wording of this letter is interesting "anymore needed within this year you will need to buy" suggests that they are directly & knowingly contravening NICE guideline 17 1.6.11 & 1.6.12 - https://www.nice.org.uk/guidance/ng17/chapter/1-Recommendations#blood-glucose-management-2 - which provide that adults with type 1 should be supported in testing up to 10 times a day or more if required. Provide them with a copy of the guidelines and ask why they are not being followed. Good luck.

Edit: sorry, the "ha" was directed at the practice being stupid enough to put this in writing. I am sorry they aren't being supportive. Im sure if you make a bit of noise, get them a copy of the letter @Shar67 linked to and a copy of NG 17 they will soon change their tune. It's a shame you have to do this though.

 

[himtoo]

I would also write to your Diabetic consultant and enclose a copy of the letter and ask if there is any assistance available from him / her.
really sorry you are having this unneeded stress.

all the best !!

 

[Paul520785]

Thank you for the suggestions - very helpful

I am in no mad rush to get mad / nasty - yet. I am going to create an plan of actions then write to the practice manager and cc my consultant, who, has both offered help when silly changes were attempted by the surgery (and taught me about 7 new swearwords when I explained what had happened !).

The documents suggested will be included with the letters - these are part of the ammunition which I needed to find - expect to send these letters at the end of next week.

any further ideas will be good -
I intend to keep this updated so that there is a chance it will help others who hit similar situations.

 

[CollieBoy]

<SNIP> and cc my consultant, who, has both offered help when silly changes were attempted by the surgery (and taught me about 7 new swearwords when I explained what had happened !<SNIP>.

The benefits of life in the medical profession

 

[BeccyB]

Ha! The wording of this letter is interesting "anymore needed within this year you will need to buy" suggests that they are directly & knowingly contravening NICE guideline 17 1.6.11 & 1.6.12

I agree with @catapillar - if they'd said 'wanted' then they'd be suggesting you're testing more than necessary/reasonable but by saying 'needed' they've shot themselves in the foot!

Hope you get it sorted soon. Although I'd then be torn between finding a different GP practice that wouldn't do this in the first place, and merrily requesting lots of strips and rubbing their noses in the victory

 

[Robbity]

Paul, apologies if you've already done so, but have you confirmed that whoever typed that letter has not made a rather glaring clerical error and it should actually have been "boxes of test strips" rather than "test strips" - which would actually make more sense? If the letter was given to a member of admin staff at the practice to type then it's the sort of mistake that someone who had no medical knowledge might have made in ignorance... Just a thought.

Robbity

 

[Paul520785]

Update - it's a long time since anything interesting happened!

Decided to wait for annual review with consultant but this has now been postponed by 3 months by the hospital

So -
I tried to arrange an appointment with my GP and was told that they had left! That was news to me so asked who my new GP was . . . . - Arranged an appointment - Saw him last Friday
# Explained that had been told that the Onetouch test strips I used were being discontinued so I had sorted a set of new meters. Explained that had had one set of 4 boxes of new strips but that only provided enough to set up each of the testing kits <> Car + Boat + Daughters + Home but not the spare unit.

The doctor then said he would prescribe 6 Boxes so would be able to start on new meters.
He also said he felt 6 boxes per month would be more appropriate than current levels - This was a breath of fresh air for me!
BUT when I came to passing these prescriptions to the pharmacy section I was told " You have already had your test strips for December so you cannot have any more" So rather than tell her what I thought, I just said "Talk to the doctor and I will pick up the test strips on the prescription early next week".
And, although the doctor told me he had set the monthly prescription to 6 boxes, the online system is currently showing 4 boxes.

At present trying to decide what to do
>>>> Wait to see if prescription for extra strips handed to me is honoured
then if not honoured ????????????
- I see the choices as -
1) Wait to see consultant
2) Make official complaint to NHS (Not sure how) (Not the practise manager as she told me it was not something she dealt with)
3) Tell dispensary manager very bluntly exactly what I think of her attitude. (This will probably get me kicked off the practice list as I will that any one in hearing understands exactly what my complaint is!!!!)
4) Explore changing surgery.

Does anyone have any suggestions as to any alternative actions ???????????????

 

[Energize]

I would be inclined to write a letter to the Pharmacy person, with courtesy copy to your GP, explaining politely what your GP had said to you re upping your prescription to 6 boxes. I feel it would be in order to say that you are aware that this prescription change doesn't seem to be showing on the online system so please would s/he speak to your GP to confirm this has been agreed and that you will be along on * date to collect the extra boxes of test strips. The pharmacy will then be obliged to reply if they don't meet this requirement, or the GP should contact you in response to your letter.

If you hear nothing and your test strips are not available on the date you have given for collection, I would arrange a phone call from your GP. Should this action not get you some action, I would then complain to PALS in writing, again being very polite

Also, I wouldn't wait before doing this as it might appear that you don't actually need the test strips

Good luck and please post back with a result

 

[tim2000s]

I'm much more activist in this context and I'd be on the phone to the pharmacy manager to understand why they were contravening the doctor's instructions (i.e. acting illegally in taking the role of prescriber and refusing to honour what the prescriber had requested, as this is not an action for them).

Then I'd arrange to have your prescriptions sent to a different pharmacy that will fulfill the script (and tell the surgery why). The Pharmacy department is acting stupidly here.

 

[catapillar]

@Paul520785 is this the pharmacy department in the GP clinic? Your first two options appear to be to complain to someone entirely separate to the GP clinic. I don't understand the logic there. Tell the GP surgery there's a problem with your prescriptions, ask them what they are going to do to fix it, if it doesn't get fixed sharpish raise a complaint to the partners of the surgery. It sounds like no one in the clinic is talking to other departments and it's all just gone a bit computer says no.

 

[slip]

Crazy!

 

[Paul520785]

The next chapter !
The suggestion from Energise was very helpful - so my action was to send an e-mail to the practice -
_________________________________________________________________________________________________
Sent: 05 December 2016 14:54
To: '[email protected]'
Subject: Prescribed items.

Attn Dispensary Manager
CFI Dr H###### #########
CFI Practise Manager

On Friday 2nd December I was prescribed extra 6 boxes of test strips and told that the monthly quantity was changed to 6 boxes while I was with Dr #########

At the dispensary, “ I was informed that I had already had my December test strips” and the prescription was retained, to which, I simply replied “Talk to the doctor – I will collect early next week” and then left.

I plan to collect the “Extra test strips” mid-afternoon on Tuesday.

Having checked to online ordering system it shows the following > 200 strip - use as directed alternate 4-5 monthly. I was under the impression that changes were immediate.

Please reply to this e-mail if there are and delays etc. (I will check my messages before I drive home calling into the surgery on the way).
Regards
_______________________________________________________________________________________________

Called in at the surgery Tuesday 6th - Afternoon - none of usual dispensary staff present but was issued "extra boxes" by one of the practice nurses without any comment.

After the history of refusal to issue the needed number of test strips my reaction to this is mixed and a little apprehensive.
.
So - when I got home checked just what I can tell from any source of information
.
I have just looked at the printed repeat prescription form -
========================================================
One Touch Verio test strips
6 packs of 50 strips Use as directed alternate 4-5 monthly
Last issued Friday 02 Dec 2016 Next issue date Fri 30 Dec 2016
========================================================
And then the online system
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
OneTouch Verio testing strips (LifeScan)
200 strip - use as directed alternate 4-5 monthly
Last Issued: 02 Dec 2016
Cannot order medication until 16 Dec 16
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Both appear to contain errors - not impressed is an understatement . . . .
Past experience warns me to consider carefully what to do next !! ?????????????????

And one query for Energize - what is PALS
And for every one >>> Any thoughts / suggestions ??

 

[Annie86]

Update - it's a long time since anything interesting happened!

Decided to wait for annual review with consultant but this has now been postponed by 3 months by the hospital

So -
I tried to arrange an appointment with my GP and was told that they had left! That was news to me so asked who my new GP was . . . . - Arranged an appointment - Saw him last Friday
# Explained that had been told that the Onetouch test strips I used were being discontinued so I had sorted a set of new meters. Explained that had had one set of 4 boxes of new strips but that only provided enough to set up each of the testing kits <> Car + Boat + Daughters + Home but not the spare unit.

The doctor then said he would prescribe 6 Boxes so would be able to start on new meters.
He also said he felt 6 boxes per month would be more appropriate than current levels - This was a breath of fresh air for me!
BUT when I came to passing these prescriptions to the pharmacy section I was told " You have already had your test strips for December so you cannot have any more" So rather than tell her what I thought, I just said "Talk to the doctor and I will pick up the test strips on the prescription early next week".
And, although the doctor told me he had set the monthly prescription to 6 boxes, the online system is currently showing 4 boxes.

At present trying to decide what to do
>>>> Wait to see if prescription for extra strips handed to me is honoured
then if not honoured ????????????
- I see the choices as -
1) Wait to see consultant
2) Make official complaint to NHS (Not sure how) (Not the practise manager as she told me it was not something she dealt with)
3) Tell dispensary manager very bluntly exactly what I think of her attitude. (This will probably get me kicked off the practice list as I will that any one in hearing understands exactly what my complaint is!!!!)
4) Explore changing surgery.

Does anyone have any suggestions as to any alternative actions ???????????????

Hi Paul,

As an nhs professional I would say this is clear obstruction to your continued health and well-being. Firstly it is something the practice manager should be involved with as generally this is the individual who would deal with any form of complaint.

If you get no further than this I would report them to cqc who will review any concerns raised and (if appropriate) give the surgery actions that they have to follow. If they are doing this with test strips goodness knows what other medications and necessities they are withholding.

Good luck

 

[Energize]

@Paul520785 - re PALS

"Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers.
You can find officers from PALS in your local hospital."

However, I would say Annie's suggestion was the one to follow, to be honest. I totally agree with what Annie says re 'clear obstruction to your continued health and well-being"

I would suggest you act promptly, rather than spend too much time thinking about it - otherwise they [the 'pharmacy' and other professionals] may feel it can't be that important to you.

Again, as Annie says, if a formal complaint to the Practice Manager doesn't solve your issue, the CQC would be worth contacting.

Good luck

 

[slip]

the repeat states 6 boxes a month, that's what you wanted? the 'alternate 4-5 a month' is now irrelevant anyway.

 

[Paul520785]

7th December - morning
Tried PALS - not their responsibility -
suggested NHS England - 0300 311 2233 - E-mail [email protected]
Copy of this tread forwarded as an explanation with a request to call me.

Thanks for all the suggestions - really helpful - I am now waiting to see what if anything results from this!!!
More updates coming.

One more annoyance >>> Now hopping mad - just put away the extra boxes of test strips only to find that 5 were supplied not 6 as stated by my doctor - best I do not have any contact with surgery in next week as I would insist they learn to count and follow instructions!

 

[donnellysdogs]

Contact chemist, perhaps they did not have 6 in stock? Or simply made a human error.

PALS are only hospital based and do not deal with complaints regarding Practices. This is only the Practice Manager.

I don't know if you are an online patient?? But I just write my ad hoc complaints around prescriptions online.

Ie last week my consultant wrote asking them to prescribe tresiba. The doctor handed letter to our pharmacist employed by the Practice who is meant to be better at getting scripts right. He ordered me 2 a month.. that would last me about 15 days. I just went online and wrote my frustration down and requested 5 per month. He actually has extra prescribed me 10!! And put 5 as a repeat.

Our GPs have a fantastic call back service too. No appointments unless you soeak by phone 1st. So 99% of time no appt is needed to get things sorted out if errors are made...

I got given a new drug for my stomach. Boy, it badly affected my brain. Just wrote on the prescription request that I was badly affected and could I go back to my old drug till I see consultant. Done...

I just think the GP has accidentally left prescribe Less every other month on the form accidentally. Me, I would just be requesting a GP or Pharmacist if your Practice has one actually working for them.. not Lloyds nextdoor to phone you back.

If that didn't work. You need to write a letter and give them a time to resolve this matter and tell them if it isn't resolved you will takeit to MP and to NHS England.