Am I wrong in thinking this is not okay?

[Geminigirl]

Hi all.

I've been under the care of my hospital's Diabetic unit since last Oct. I was ref by the GP surgery as they ran out of ideas how to treat me. (DN's words, not mine).

Anyway, long story short...after ascertaining I am making a little of my own Insulin but not enough and a few treatment changes I am on Humulin M3, 28 units am and 32 units pm plus Forxiga. I am improving a lot and the DN I speak to each 2 weeks is great, as is the Diabetic Dietician, she promotes lowish carb. I'm working hard to get and stay in the targets given. Doing well.

I am plumpish but haven't gained any weight since being on insulin.

The hospital do my HBA1C each 3 months, followed by a face to face with my DN and the Consultant each 6 months.

Basically my surgery have no input and all my tests are shared with the GP.

However they still insist on a seperate HBA1C each 3 months done with them (the 2 never tally!) This is followed up by a tel conversation for literally 5 minutes with the surgery DN where she basically tells me what I already know.

2 months ago after my HBA1C the DN at the surgery rang and said she doesn't do the tel calls now and to "save her time because of the sheer nos of Diabetics she deals with" they hold group HBA1c follow ups and I was to attend. I said I wasn't keen and thankyou, but I know my results, I was told if I didn't attend the GP wouldn't do my repeat prescriptions for Insulin.

When I told the hospital DN she said "what about patient confidentiality?"

Reluctantly I attended to be faced by 9 others who were either pre-diabetic or diet controlled. No one else fitted my situation.

There was a big whiteboard with everyone's B.P, weight, BMI, HBA1C and Cholesterol readings, plus some scale thing which predicts your chance of a major heart attack or stroke.

I was really upset because how is this confidential? Unfortunately, my HBA1C was highest and the DN went on about "what you can all do to get these good low numbers...just don't eat cake and crisps, you're doing so well, well, apart from you looking at your result" and looked at me. Having got my HB from 14% to 8.0% so far...way to go I know...I thought it was a big improvement.

I felt so humiliated, how does this motivate you? When she went round the table for people's individual "chats" (and no disrespect to the others) they had no clue what I was talking about re carbs etc. I also added I had been diagnosed 15 years ago where as most of the others were in their early days or less than a year.

Without sounding paranoid I felt like I was there as a deterrent to others!

When I told my DN at the hospital she was appalled and said don't go again.

However the surgery want my HBA1C again in Sept and expect me to attend again. They are also pushing me to go on the one-life course. I don't want to, I exercise and my diet is not based on the dreaded eatwell plate because I have a good dietician at the hospital. I no longer comfort eat etc. It is a journey but i'm giving 100%

I don't want this group thing again but am worried the GP Will refuse my prescription. Surely this breaches patient confidentiality? We were told not to talk about it outside the group but what if someone knows you? I feel very upset, what do you all think?

 

[zand]

That's horrible! I agree, where's the patient confidentiality?! Gobsmacked tbh. I don't see how this saves time either. The nurse still has to go through everyone's results.

 

[Goonergal]

I was told if I didn't attend the GP wouldn't do my repeat prescriptions for Insulin.

That’s an inappropriate threat and worthy of a complaint.

There was a big whiteboard with everyone's B.P, weight, BMI, HBA1C and Cholesterol readings, plus some scale thing which predicts your chance of a major heart attack or stroke.
I was really upset because how is this confidential? Unfortunately, my HBA1C was highest and the DN went on about "what you can all do to get these good low numbers...just don't eat cake and crisps, you're doing so well, well, apart from you looking at your result" and looked at me. Having got my HB from 14% to 8.0% so far...way to go I know...I thought it was a big improvement.

Sounds like the DN needs some training in group management. I don’t think information about you should be shared without your express permission.

When I told my DN at the hospital she was appalled and said don't go again.

I’d agree.

Any way you can approach the practice manager to raise your concerns? It might be you’re not the only one.

 

[Antje77]

Whut?!

You're being coerced in sharing your health results with a bunch of strangers or else they'll refuse to give you your needed medication?

Anything I can say to this would be automatically asterisked by the forum filter on 'bad' words.

This can't be legal, can it?

 

[Dr Snoddy]

Unbelievable! Years ago when I attended a group diabetes education course we each provided this information PRIVATELY to the facilitators so they have some idea of their target audience. Your experience smacks of the sort of methods slimming groups used to employ decades ago. I would make a formal complaint to the practice manager.

 

[Hopeful34]

Just to say I agree with everything that's already been said. It also sounds like your hospital DSN/dietician are board, so I'd ask her or your endo if they would be willing to write to the drs something along the lines of that all your diabetes care, will be done by the hospital, as you're already having very regular appointments and blood tests there. They could be diplomatic and say it will avoid duplicating tests, and save the surgery nurse time. They could list the prescription you need each month from the surgery, so the surgery couldn't stop providing them.

 

[JMK1954]

I would write a letter to the practice manager, explaining the situation, including the fact that you were referred to the hospital because the DN said she had run out of ideas. Tell them how helpful you have found the hospital clinic and how de-motivating you found the group meeting, where you were humilated and shamed publicly when your confidential test results were displayed to all and commented on. To threaten refusal of prescriptions if you do not attend again is blackmail. There is no excuse for any of this.

 

[Rachox]

I agree with what has already been said. I’d start with a letter to the practice manager, then get your hospital clinic to write to your surgery to back up the arrangements and to explain your particular situation and requirements. There’s no way you should be forced to join a group discussion for any reason, we are all entitled to individual care.

 

[AndBreathe]

Hi all.

I've been under the care of my hospital's Diabetic unit since last Oct. I was ref by the GP surgery as they ran out of ideas how to treat me. (DN's words, not mine).

Anyway, long story short...after ascertaining I am making a little of my own Insulin but not enough and a few treatment changes I am on Humulin M3, 28 units am and 32 units pm plus Forxiga. I am improving a lot and the DN I speak to each 2 weeks is great, as is the Diabetic Dietician, she promotes lowish carb. I'm working hard to get and stay in the targets given. Doing well.

I am plumpish but haven't gained any weight since being on insulin.

The hospital do my HBA1C each 3 months, followed by a face to face with my DN and the Consultant each 6 months.

Basically my surgery have no input and all my tests are shared with the GP.

However they still insist on a seperate HBA1C each 3 months done with them (the 2 never tally!) This is followed up by a tel conversation for literally 5 minutes with the surgery DN where she basically tells me what I already know.

2 months ago after my HBA1C the DN at the surgery rang and said she doesn't do the tel calls now and to "save her time because of the sheer nos of Diabetics she deals with" they hold group HBA1c follow ups and I was to attend. I said I wasn't keen and thankyou, but I know my results, I was told if I didn't attend the GP wouldn't do my repeat prescriptions for Insulin.

When I told the hospital DN she said "what about patient confidentiality?"

Reluctantly I attended to be faced by 9 others who were either pre-diabetic or diet controlled. No one else fitted my situation.

There was a big whiteboard with everyone's B.P, weight, BMI, HBA1C and Cholesterol readings, plus some scale thing which predicts your chance of a major heart attack or stroke.

I was really upset because how is this confidential? Unfortunately, my HBA1C was highest and the DN went on about "what you can all do to get these good low numbers...just don't eat cake and crisps, you're doing so well, well, apart from you looking at your result" and looked at me. Having got my HB from 14% to 8.0% so far...way to go I know...I thought it was a big improvement.

I felt so humiliated, how does this motivate you? When she went round the table for people's individual "chats" (and no disrespect to the others) they had no clue what I was talking about re carbs etc. I also added I had been diagnosed 15 years ago where as most of the others were in their early days or less than a year.

Without sounding paranoid I felt like I was there as a deterrent to others!

When I told my DN at the hospital she was appalled and said don't go again.

However the surgery want my HBA1C again in Sept and expect me to attend again. They are also pushing me to go on the one-life course. I don't want to, I exercise and my diet is not based on the dreaded eatwell plate because I have a good dietician at the hospital. I no longer comfort eat etc. It is a journey but i'm giving 100%

I don't want this group thing again but am worried the GP Will refuse my prescription. Surely this breaches patient confidentiality? We were told not to talk about it outside the group but what if someone knows you? I feel very upset, what do you all think?

Frankly, in my view secondary care (especially as your surgery told you they referred you because they didn't know what to do), trumps GP care.

If the hospital says you don't have to go, then don't. If your surgery threaten to withhold medications, ask the clinic to write to them. I am assuming it is the clinic who determine your medication and what you take when? If that is the case, your GP is participating in "shared care", but realistically it's only a share in the cost of your care.

That level of disclosure without informed consent is not on. They may imply that by attending you consented, but that's twaddle by the sounds of it.

I'd actually say a complaint is in order. I would have wanted to tear up trees and inflict mortal wounding, and I think I'm quite a logical person!

You (and everyone else in that room) deserve better.

 

[Win71]

Hi all.

I've been under the care of my hospital's Diabetic unit since last Oct. I was ref by the GP surgery as they ran out of ideas how to treat me. (DN's words, not mine).

Anyway, long story short...after ascertaining I am making a little of my own Insulin but not enough and a few treatment changes I am on Humulin M3, 28 units am and 32 units pm plus Forxiga. I am improving a lot and the DN I speak to each 2 weeks is great, as is the Diabetic Dietician, she promotes lowish carb. I'm working hard to get and stay in the targets given. Doing well.

I am plumpish but haven't gained any weight since being on insulin.

The hospital do my HBA1C each 3 months, followed by a face to face with my DN and the Consultant each 6 months.

Basically my surgery have no input and all my tests are shared with the GP.

However they still insist on a seperate HBA1C each 3 months done with them (the 2 never tally!) This is followed up by a tel conversation for literally 5 minutes with the surgery DN where she basically tells me what I already know.

2 months ago after my HBA1C the DN at the surgery rang and said she doesn't do the tel calls now and to "save her time because of the sheer nos of Diabetics she deals with" they hold group HBA1c follow ups and I was to attend. I said I wasn't keen and thankyou, but I know my results, I was told if I didn't attend the GP wouldn't do my repeat prescriptions for Insulin.

When I told the hospital DN she said "what about patient confidentiality?"

Reluctantly I attended to be faced by 9 others who were either pre-diabetic or diet controlled. No one else fitted my situation.

There was a big whiteboard with everyone's B.P, weight, BMI, HBA1C and Cholesterol readings, plus some scale thing which predicts your chance of a major heart attack or stroke.

I was really upset because how is this confidential? Unfortunately, my HBA1C was highest and the DN went on about "what you can all do to get these good low numbers...just don't eat cake and crisps, you're doing so well, well, apart from you looking at your result" and looked at me. Having got my HB from 14% to 8.0% so far...way to go I know...I thought it was a big improvement.

I felt so humiliated, how does this motivate you? When she went round the table for people's individual "chats" (and no disrespect to the others) they had no clue what I was talking about re carbs etc. I also added I had been diagnosed 15 years ago where as most of the others were in their early days or less than a year.

Without sounding paranoid I felt like I was there as a deterrent to others!

When I told my DN at the hospital she was appalled and said don't go again.

However the surgery want my HBA1C again in Sept and expect me to attend again. They are also pushing me to go on the one-life course. I don't want to, I exercise and my diet is not based on the dreaded eatwell plate because I have a good dietician at the hospital. I no longer comfort eat etc. It is a journey but i'm giving 100%

I don't want this group thing again but am worried the GP Will refuse my prescription. Surely this breaches patient confidentiality? We were told not to talk about it outside the group but what if someone knows you? I feel very upset, what do you all think?

OMG i am shocked on how you have been treated, no dr can refuse your medical needs, why would they even want to put that level of stress on you, that is just awful, i hope you get sorted, no one should be forced into group meetings to talk about our health i would put in an on line request to dr explain what you been threw and have dr put your mind at rest

 

[pumas]

NHS Constitution-
You have the right to privacy and confidentiality and to expect the NHS to keep your confidential information safe and secure.

You have the right to be informed about how your information is used.

You have the right to request that your confidential information is not used beyond your own care and treatment and to have your objections considered, and where your wishes cannot be followed, to be told the reasons including the legal basis.

 

[lovinglife]

That is totally shocking and inappropriate! I’m so sorry you have had to go through this. It really beggars belief. I would refuse point blank to go to anything that your GP or anyone in the practice insists you have to. I would speak to my GP directly to see if they are aware how people have been treated, even though they may be onboard with the group session they may not be fully aware what is taking place in them, certainly write a letter to the practice manager and then to PALS. I would also the hospital to write directly to your GP.

I can’t believe that confidentiality and data protection have been breached in such a way. I certainly wouldn’t put up with it again, is it possible for you to move to another surgery as I imagine you must have no confidence and will worry about any further appointments etc you have to make - sending you hugs (())

 

[Geminigirl]

That's horrible! I agree, where's the patient confidentiality?! Gobsmacked tbh. I don't see how this saves time either. The nurse still has to go through everyone's results.

Thanks. I still don't get it!

 

[Geminigirl]

That’s an inappropriate threat and worthy of a complaint.

Sounds like the DN needs some training in group management. I don’t think information about you should be shared without your express permission.

I’d agree.

Any way you can approach the practice manager to raise your concerns? It might be you’re not the only one.

Yes I think i'm going to do that. I'm probably not.

 

[Geminigirl]

Just to say I agree with everything that's already been said. It also sounds like your hospital DSN/dietician are board, so I'd ask her or your endo if they would be willing to write to the drs something along the lines of that all your diabetes care, will be done by the hospital, as you're already having very regular appointments and blood tests there. They could be diplomatic and say it will avoid duplicating tests, and save the surgery nurse time. They could list the prescription you need each month from the surgery, so the surgery couldn't stop providing them.

That's a great idea, thankyou.

 

[Geminigirl]

I would write a letter to the practice manager, explaining the situation, including the fact that you were referred to the hospital because the DN said she had run out of ideas. Tell them how helpful you have found the hospital clinic and how de-motivating you found the group meeting, where you were humilated and shamed publicly when your confidential test results were displayed to all and commented on. To threaten refusal of prescriptions if you do not attend again is blackmail. There is no excuse for any of this.

Thankyou. I still can't quite believe it and i've thought it through over and over and am disgusted.

 

[lovinglife]

A bit off topic but years ago the GP tried to stop my sons meds from liquid to tablets because liquid was 30 times the cost (my son has autism and struggles to take tablets) his consultant at the time said “well it’s not up to them, I’ve specifically prescribed liquid so what I say goes - don’t worry I’ll sort it” - never had a problem again. Get your consultant to sort your script if you can

 

[Geminigirl]

Thank you all for your support.
I am going to speak to my GP (have booked a telephone appointment for next week. I want to see if he is aware of all this.

If he is and condones it I will take it further and I am not attending the group again either way. I will say i'll have a tel consultation if absolutely necessary.

I see the clinic consultant soon so i'm also going to discuss this with her too. I know I have do better but the hospital team are very supportive and while being honest and don't hold the punches when needed, they are encouraging and there approach has helped me and got me out of a dark place where my mental health was suffering as I felt so useless and hopeless. That experience almost set me back. Thank goodness my anger focussed me even more.

It would be a nusiance to move surgery as I live in a quite rural area and apart from this issue the surgery has always been excellent with mine and my husband's care.

I'll let you know what happens.

I have had such good advice on hete over the years and educated myself as much as I can and i'm sad to see the same rubbish advice peddled as I got when I was diagnosed.

Thanks again.

 

[KennyA]

I think this is almost unbelievable. There are clear rules for health services about the use of patient identifiable data and this account puts the practice clealy in breach. It is one thing if people voluntarily attending a group choose to share their own information, quite another for a practice to do so without consent and to force attendance at the group by threatening to withold prescriptions (which would I think breach the GMC guidelines set out in Good Medical Practice). Well worthy of a formal complaint.

 

[lovinglife]

Thinking back to your opening post, it sounds like the whiteboard was filled with all the information of everyone before the session started so if anyone including yourself had decided not to turn up all the persons confidential info would have still been there for all to see, (also there for anyone who entered the room before hand to see) probably without them even realising it. With this in mind I would reiterate that you do not want you confidential information written up anywhere under any circumstances