Surgery Threatening To Stop My Meds

[TheClockworkDodo]

Our surgery has a new practice manager and a new diabetes nurse. I've had a couple of letters this year asking me to go in for my annual blood test and review with the nurse (something which I used to organise directly by email with the previous nurse, no letters or hassle of any kind) and R has phoned them and explained that I'm shielding because of my ME and not going anywhere, and they've accepted that.

Just had another letter saying that I need a medication review and if I don't go in for a blood test and diabetes review they'll cut off my meds. Some of these are obviously prescribed by the hospital, not the surgery, and are keeping me alive, so I'm not sure they have the authority to do this, but I don't know how difficult/stressful it's going to be to sort it out - just getting the letter has already made me ill. I'm guessing the nurse is used to seeing only type 2s and hasn't realised that it's not usual for a type 1 to see a surgery nurse at all.

R has rung surgery and the surgery nurse is hopefully ringing back this afternoon. I'm hoping it will be easily resolvable over the phone, but if not, does anyone have info. about my legal position/the NICE guidelines/anything else which might help? Can a surgery diabetes nurse cut off my meds if I won't go into the surgery, if I'm a type 1 and the meds are keeping me alive? Up until now I've had a blood test twice a year (my last one was in January) and a review at least once a year, so it's not as if I've been difficult in any way from their point of view, it's only the unusual situation this year which means I don't want to go into the surgery.

 

[TheClockworkDodo]

Forgot to say, I have offered to do the review by email/Skype/Zoom, but they haven't taken me up on that, I don't even have the new nurse's email address (first time I've had a diabetes nurse who didn't give me her email address).

 

[Ralph-YK]

Do you have anyone at the hospital diabetes team you can contact? I've heard that they might help with such things, & might contact the GP practice.
It's possible for a T2 not on insulin to decline to see the nurse and still get meds pescribed. And in the current situation they should certainly give more leaway. Depending on your personal situation.
I get the cut off your meds threat only when they've sending letters about a meds review. Arrange a phone appointment if you can. I believe some pharmacies do it as well (though I don't know if GP practice will take notice of that).

 

[Ralph-YK]

Forgot to say, I have offered to do the review by email/Skype/Zoom, but they haven't taken me up on that,

Is that just for the diabetes appointment, or the meds review as well?

 

[Thebearcametoo]

Can you get in touch with your consultant’s team and let them know. They may well kick up a stink on your behalf. I would also put a written complaint into the practice manager.

FWIW we had a testing kit sent out to us so that they could do an HBA1C during lockdown so there are ways to get that without going in if necessary.

 

[TheClockworkDodo]

Is that just for the diabetes appointment, or the meds review as well?

Apparently the diabetes appointment is the meds review - when R rang earlier the receptionist said he needed to speak to the diabetes nurse because the meds review was up to her.

 

[TheClockworkDodo]

FWIW we had a testing kit sent out to us so that they could do an HBA1C during lockdown so there are ways to get that without going in if necessary.

That is very useful information, thank you.

 

[TheClockworkDodo]

The problem with contacting the consultant is that I haven't seen one since 2017 and the last few I saw were locums, as the department is seriously understaffed. Previous surgery nurse was so helpful it didn't matter - she did try to hassle the hospital a couple of times for me, but it didn't seem urgent because I was seeing her. I do have the email address for a specialist nurse at the hospital but I've not been in touch with her for a couple of years now, so I don't know if she's still there or whether she'd be able/willing to help.

 

[grovesy]

I had my last medication review in August via phone with the Practice Pharmacist. Would they allow R to act as an intermediary for you ?

 

[Piglet]

Hi,
The guidance you are looking for is Nice guideline 17. This transfers type 1 from paediatric care to adult care as well as diagnosis of Adults with type 1.

Patient-centred care | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk

If you have no luck sorting the issue out you can always write to your local CQC. No organisation is allowed to remove life preserving medication without permission.

I am guessing as you said earlier that your new nurse has not realised you are a type 1, and is using the threat method of encouragement to attend your med review. My last med review was done over the phone, so there should be no issues doing it this way in the current climate. if not you could phone the hospital to check if the specialist nurse is still there then get in touch with either her or the new person.

Good luck

 

[TheClockworkDodo]

Thanks for the link, Piglet - not sure I will be able to read it all (can't read much on a screen) but useful to know it says that. Can you tell me, permission from whom? - the patient, the hospital, the CQC?

Grovesy, we are hoping the nurse will talk to R on the phone if she won't talk to me by email. I struggle with phones myself (because of cognitive dysfunction, I can't process information quickly enough to have a conversation), so he normally makes phonecalls on my behalf. Not sure she will do the review with him though, or without the blood test.

 

[helli]

I have never had a medication review at my surgery. They just approve what my diabetes team at the hospital request.
It is good to know that there are some surgery nurses who are useful. However, I believe mine would struggle to spell "Type 1".

I would strongly recommend getting back in touch with the diabetes consultant at the hospital. Even if it is a locum they know more about diabetes than any general practitioner will. Having not visited them for some years, there may be some new technology or insulin or techniques that they can recommend which you are currently missing out on. And they can provide support when your surgery is less than helpful.
I appreciate a visit is not easy but my diabetes team have been great with remote management via phone and email.

 

[Pumper_Sue]

I had this issue last year regarding a diabetes review at my local surgery. So I wrote a stinking letter back to the surgery manager and suggested that if they so much as dared to remove my life preserving medication (insulin) then I would go to the press and also start legal proceedings and If I passed away due to lack of insulin then I have instructed my solicitor to inform the police and start a murder investigation.

Funny enough I never heard a dicky bird back from the surgery and my meds are still in place 🙂

 

[Piglet]

The withdrawal of life preserving medication (In my opinion) should only be done if there is no further life to be saved ie with palliative care. Permission to withdraw meds should be via a family member ie life support or DNR's or by the patients own refusal to take their medication for what ever reason they give.

A patient cannot be forced to take any medication prescribed to them or be forced to have a vaccination....... A good nurse would never make the threat to withdraw or refuse to give lifesaving medication. An explanation story why you are required to see either a nurse/Dr to review your meds would be a far better way of going about it. Just remember because GP surgeries are run by beancounters, med review are there to justify the surgery spending and to prove they are attempting to balance the books.

for info I had the very same argument with our NHS prescription ordering service and complained.

Good luck

I had this issue last year regarding a diabetes review at my local surgery. So I wrote a stinking letter back to the surgery manager and suggested that if they so much as dared to remove my life preserving medication (insulin) then I would go to the press and also start legal proceedings and If I passed away due to lack of insulin then I have instructed my solicitor to inform the police and start a murder investigation.

Funny enough I never heard a dicky bird back from the surgery and my meds are still in place 🙂

A girl after my own heart. Always come out fighting and hit them hard. Nice one

 

[rebrascora]

Really sorry you are going through this Juliet.
The only thing I can offer from my own experience is that the GP's surgeries are pretty much the safest places these days as so few people get to go inside and they are temperature checked at the door and ushered in by a fully ppe'd nurse and don't really get to touch anything or sit in a waiting room. Obviously you also need to wear a mask. I appreciate that many people may still not be able to cope with the anxiety or risk of leaving their home and obviously, if public transport is involved then I can certainly see that being non negotiable, but just wanted to offer some reassurance re attending the GP practice, if that became necessary.
Hope you manage to resolve this situation. Not sure if your GP practice has it, but I find the "Ask My GP" online facility at my surgery great for dealing with problems. You just fill in the form which has a box for free text to type in your issue and ask to be contacted by email (or telephone or text... whichever is your preference) and I have always had same day or next working day replies.
I can totally sympathize as regards talking on the phone. I find it really difficult to say everything I want to say and remember what I am told, so having it written down in email form makes it so much easier and less stressful.

 

[Drummer]

I would ask them (with sarcasm) to make an appointment but be sure close the surgery to all other patients and have the place sanitized for your arrival - and can they supply PPE or do you have to buy your own - as they do understand your situation - don't they?

 

[trophywench]

Well have to say - my GP surgery as a whole are avoiding as many appointments 'in person' as it's humanly possible to avoid!! Consequently they did my medication review - which I think they are obliged to do, annually (and it's pretty silly as far as T1 is concerned!) on the phone. I did feel like saying, Oh come on, we'd have both seen it on the News if they'd invented a cure, wouldn't we? but didn't actually waste my breath. Their job means that they have to tick a box to say they've done the review, so I may as well help em do it with a good grace as it costs me nowt!

Juliet - it's just a ****-up by the nurse who to be fair, doesn't know you from Adam, though she should have read your Patient record and seen that you are T1 - and has simply sent a standard response which is singularly inappropriate.

 

[Ralph-YK]

Grovesy, we are hoping the nurse will talk to R on the phone if she won't talk to me by email. I struggle with phones myself (because of cognitive dysfunction, I can't process information quickly enough to have a conversation), so he normally makes phonecalls on my behalf. Not sure she will do the review with him though, or without the blood test.

There is a rule (I don't remember the offical phrase for it) where you can have someone attend an appointment to help you. Things like communication (translation etc.) As well as a chaperone. (I've been asked quite a few times if I want a chaperone.) This should also be availbe for phone contact. I believe the "reasonable adjustments" rule applies too.
You'll might very well have to tell the nurse yourself to talk to R though. (Patient confidentiality rules & such.)
Have you considered writing a letter to your practice, giving them permission to talk to R on a regular bases?

You can also nominate someone to deal with such things for you. (That's getting into slightly more tecnical legal stuff though.)

I have never had a medication review at my surgery.

I never had at my old GP practice.

temperature checked at the door

I don't remember that when I visited my GP.

 

[grovesy]

Thanks for the link, Piglet - not sure I will be able to read it all (can't read much on a screen) but useful to know it says that. Can you tell me, permission from whom? - the patient, the hospital, the CQC?

Grovesy, we are hoping the nurse will talk to R on the phone if she won't talk to me by email. I struggle with phones myself (because of cognitive dysfunction, I can't process information quickly enough to have a conversation), so he normally makes phonecalls on my behalf. Not sure she will do the review with him though, or without the blood test.

I was sure you had problems using the phone that was why I made my suggestion.
Good luck!

 

[TheClockworkDodo]

Thanks for all your posts, am struggling now to reply individually, sorry, but they are all helpful.

I wrote to surgery years ago to say R could make phonecalls on my behalf, but whether they'll do a review with him I don't know. Surgery doesn't have an online facility, and seems to struggle even with communication by email.

I wrote to the diabetes nurse back in July (when my Libre sensors were up for review) so she should know I'm a type 1 - letter said that I guessed they were probably not doing routine reviews at that point, that in any case I was shielding and not leaving the house, and that if she was by any chance doing reviews I'd be happy to chat via email, Skype, or Zoom, or she could ring or text R. Then I said:

"I'm a well-controlled type 1 with no complications or problems, other than a tendency to have too many hypos. None of the obvious solutions have been any help with these (they are probably caused by one of my other conditions), so I have Libre sensors on prescription. Although I don't find the Libre reliable enough to be an alternative to finger-pricking, it has cut down on the amount of finger-pricking I need to do, and the direction arrows are a big help with heading off both hypos and spikes.

Other than that, I have no problems with my diabetes, the results of my last lot of blood tests (in January) were good, my BMI is around 20, and my HbA1c has always (apart from on initial diagnosis) been between 42-55, so there is no likelihood of imminent complications."