Surgery Threatening To Stop My Meds

[grovesy]

Don't worry, I know you struggle at the best of times, it must be worse for you stressing about the outcome, and dealing with people you don't know and have not met. Hope they will talk to J . Take care hoping you can resolve the issue soon.

 

[Ralph-YK]

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

It's perfectly good forum manners to do a single post that just says "Thanks everyone." (or whatever you want to say).

 

[nonethewiser]

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?

No they can't, sh would hit fan if they did.

Got sick of receiving same letters about diabetes reviews, told them countless times over phone get it done by hospital & copies of appointments always went to gp surgery, so surgery records would showed this. Despite that still get letters & texts to book appointment or meds might stop, just ignore them now but don't advise this to others, posting to say your not alone here in this annoyance.

 

[TheClockworkDodo]

Thank you all x

Nurse didn't ring R back this afternoon, but it's possible she tried and didn't succeed as we are very difficult to contact by phone. Would be so much better if she would email me.

Stress effects me really badly because of my ME, so today I have been shaking, running to the loo, struggling to chew and swallow food, and ironically my blood pressure and blood sugar have both gone high (usually they both have a tendency to be on the low side). I doubt I will get much sleep tonight, so really hoping R can speak to nurse or GP or someone tomorrow who will sort this out for me.

 

[Inka]

I had this with my GP’s diabetes ‘expert’ nurse. I’m still angry about it and dare not write much because I’d probably swear badly. So to avoid that, I’ll be brief - I finally spoke to a Dr who was astounded that the ‘expert’ nurse was even seeing me because I was Type 1 and under the care of a consultant. He has now amended my records so I never have to see the ‘expert’ again.

Don’t let them bully you. Speak to the Practice Manager or a GP and explain the situation. My nurse threatened to remove my meds too. They won’t - they just use it to bully you and freak you out. I know how stressful it is.

 

[TheClockworkDodo]

Sorry to hear you have gone through this too, Inka - it's horrible, isn't it.

 

[Inka]

Sorry to hear you have gone through this too, Inka - it's horrible, isn't it.

Yes, it is. I felt very panicky when she said I couldn’t have my insulin. Logically I knew she wasn’t allowed to do this but it still upset me.

 

[trophywench]

I had a locum GP tell me something very similar - ie that it was solely in HER gift whether I got my insulin prescription continued or not. Frankly I wanted to slap her stupid face - I've never heard such baloney in my life.

Like a CCG are going to spend X thousands pounds on an insulin pump for me - and then leave it up to a random GP whether they deign to let me have the appropriate insulin to go in it. I literally had to bite my tongue! Silly mare is still there, God alone knows what cr’p she's telling people lately - if she was the last GP standing at our surgery, I'd refuse to see her and tell the CCG why.

You have to feel sorry for them that they have so little control over their own lives the only way they can feel good about themselves is by bullying patients. Sad innit?

 

[grovesy]

Thank you all x

Nurse didn't ring R back this afternoon, but it's possible she tried and didn't succeed as we are very difficult to contact by phone. Would be so much better if she would email me.

Stress effects me really badly because of my ME, so today I have been shaking, running to the loo, struggling to chew and swallow food, and ironically my blood pressure and blood sugar have both gone high (usually they both have a tendency to be on the low side). I doubt I will get much sleep tonight, so really hoping R can speak to nurse or GP or someone tomorrow who will sort this out for me.

Sorry to hear no one got back to you. I am sorry you are being put through this. Hope it gets sorted soon!

 

[TheClockworkDodo]

I have written an email to the practice manager (who is the one who sent the letter) - posting it here (without names) before sending it in case anyone can spot any factual errors:

Dear _____,

I have received your letter of 3 December. (R) tried to call the surgery yesterday about this but did not receive a call back.

I have type 1 diabetes, so my diabetes is supervised by the hospital specialists and my diabetes medication was prescribed by a hospital diabetes consultant. Not having this medication would result in my death, so the surgery's renewal of all of this medication is normally automatic.

My other medication was all prescribed by a GP, and (with the exception of the Lactulose, which was intended to be temporary and which I no longer need) is all essential to preserving my already minimal health levels.

I should be grateful if you would ask my current GP, Dr _____, to review and renew all my medication (other than the Lactulose). She is welcome to contact me by email to discuss this, or to talk to (R) on the phone, but he'd need to know what day/time to expect a phonecall so he could make sure his phone was able to receive a signal.

As I have already informed you, I am shielding, so I am not able to make an appointment to come into the surgery at the moment. I am not being difficult or uncooperative. I have Myalgic Encephalomyelitis, which adversely and unpredictably effects the immune system. If I were to catch a serious virus, it could take me months or years to recover, or I might never recover and have to spend the rest of my life in bed. This means that until the pandemic is over I am not willing to take the risk of coming into the surgery for tests which are a matter of routine.

I do have my own blood pressure monitor and am able to monitor my own blood pressure. I also have a Libre and am able to monitor my own blood sugar levels, including 90-day averages and time in target. I am reliably informed (by another member of the Diabetes UK forum) that it would be possible for you to send me an HbA1c testing kit so I could if necessary check my own HbA1c.

I hope that your letter was an administrative error, as I was under the impression that you were already aware of all of this. I should be grateful if you would not send me any more letters or emails asking me to come into the surgery until after the pandemic is over, as I found it very stressful to receive another letter on the same subject. Myalgic Encephalomyelitis is worsened by stress, so stress makes me ill, and I am now very ill. Among other symptoms I am struggling to chew or swallow food, which is dangerous because I need to balance my food against my insulin. Ironically stress also causes my blood sugar and blood pressure (which normally tend to be on the low side) to spike, and they are both high at the moment.

I do hope this can be sorted out quickly, and all my essential and in many cases life-preserving medications renewed.

 

[Drummer]

you are the very soul of composure under stress.

 

[grovesy]

I have written an email to the practice manager (who is the one who sent the letter) - posting it here (without names) before sending it in case anyone can spot any factual errors:

Dear _____,

I have received your letter of 3 December. (R) tried to call the surgery yesterday about this but did not receive a call back.

I have type 1 diabetes, so my diabetes is supervised by the hospital specialists and my diabetes medication was prescribed by a hospital diabetes consultant. Not having this medication would result in my death, so the surgery's renewal of all of this medication is normally automatic.

My other medication was all prescribed by a GP, and (with the exception of the Lactulose, which was intended to be temporary and which I no longer need) is all essential to preserving my already minimal health levels.

I should be grateful if you would ask my current GP, Dr _____, to review and renew all my medication (other than the Lactulose). She is welcome to contact me by email to discuss this, or to talk to (R) on the phone, but he'd need to know what day/time to expect a phonecall so he could make sure his phone was able to receive a signal.

As I have already informed you, I am shielding, so I am not able to make an appointment to come into the surgery at the moment. I am not being difficult or uncooperative. I have Myalgic Encephalomyelitis, which adversely and unpredictably effects the immune system. If I were to catch a serious virus, it could take me months or years to recover, or I might never recover and have to spend the rest of my life in bed. This means that until the pandemic is over I am not willing to take the risk of coming into the surgery for tests which are a matter of routine.

I do have my own blood pressure monitor and am able to monitor my own blood pressure. I also have a Libre and am able to monitor my own blood sugar levels, including 90-day averages and time in target. I am reliably informed (by another member of the Diabetes UK forum) that it would be possible for you to send me an HbA1c testing kit so I could if necessary check my own HbA1c.

I hope that your letter was an administrative error, as I was under the impression that you were already aware of all of this. I should be grateful if you would not send me any more letters or emails asking me to come into the surgery until after the pandemic is over, as I found it very stressful to receive another letter on the same subject. Myalgic Encephalomyelitis is worsened by stress, so stress makes me ill, and I am now very ill. Among other symptoms I am struggling to chew or swallow food, which is dangerous because I need to balance my food against my insulin. Ironically stress also causes my blood sugar and blood pressure (which normally tend to be on the low side) to spike, and they are both high at the moment.

I do hope this can be sorted out quickly, and all my essential and in many cases life-preserving medications renewed.

I hope you get a speedy reply, and get a resolution soon. Take care of yourself.
Would you be amenable if a District Nurse or Home Phlebotimist could come to the house take your bloods with appropriate precautions, I am only giving this suggestion as a possible solution or work around.

 

[New-journey]

Amazing letter and surety you will get a resolution soon. It is so unfair you have to deal with this, sending loads of support.

 

[TheClockworkDodo]

Thank you all x

I have asked in the past for a district nurse to do my blood tests at home as this is what my previous surgery used to do, but apparently this surgery don't do it unless a patient is actually housebound.

 

[AndBreathe]

According to my medical records, I have had several medication reviews, but I have never knowingly participated in one, except perhaps with the Endo at the hospital when we agreed I need to stay on Liothyronine to get any marginally helpful action out of my thyroid gland.

I've only been taking anything regularly for less than a handful of years, and that is my thyroid meds.

As I have been actively titrating over time, I have had loads of bloods done - even in the peak of the pandemic, and it seems almost as if if I have a recent enough, relevant blood test on my record a review will take place. The last twice were carried out by a pharmacist I have never heard of, and I didn't realise our surgery had a pharmacist.

I do hope it's all sorted promptly @TheClockworkDodo . Nobody needs this kind of timewasting frustration in their lives.

 

[nonethewiser]

I have written an email to the practice manager (who is the one who sent the letter) - posting it here (without names) before sending it in case anyone can spot any factual errors:

Word of advice, copy diabetes consultant into letter so that they can see what's going on, also it will carry some weight with gp surgery knowing that you've sent copy to consultant. Its what I would do anyway.

 

[Sally71]

Thank you all x

I have asked in the past for a district nurse to do my blood tests at home as this is what my previous surgery used to do, but apparently this surgery don't do it unless a patient is actually housebound.

If you’re shielding you basically are housebound, could you try pointing that out to them?

 

[TheClockworkDodo]

Thanks everyone x

I wouldn't know who to copy the letter to, tbh, as I haven't seen a permanent consultant since 2014 - he retired and I've only ever seen locums since. If it becomes necessary though I will send it to the diabetes department at the hospital or try emailing the specialist nurse I have contact details for, and see if she is still there.

My initial draft of the letter was more forceful, but I looked again at the letter from the surgery and the threat is implied rather than explicit ("if you come in for a blood test and review we will renew your next prescription" rather than "if you don't we won't") so I took out the bits about NICE guidelines and medical ethics and the mention of them threatening me and thought I'd try something a bit more polite and reasonable first.

 

[TheClockworkDodo]

I wish my blood sugar would come down, it is currently stuck on 10 and I'm waiting to have lunch - I only managed half a piece of dry toast this morning, so hoping I might actually manage to eat something now.

 

[grovesy]

If you’re shielding you basically are housebound, could you try pointing that out to them?

My thoughts exactly.

Thank you all x

I have asked in the past for a district nurse to do my blood tests at home as this is what my previous surgery used to do, but apparently this surgery don't do it unless a patient is actually housebound.

You could ask again, things might have changed, sometimes things do change for the better.