Am I wrong in thinking this is not okay?

[Marie 2]

That is just awful what you went through. How can anyone think it's appropriate to display all that information on a board for who knows how many people to see. First I would be so shocked, and then upset and then I would get mad. I suggest you dig deep, you know you have done better and that is all that counts. So chin up! Ignore it as there are some very ignorant people out there. You have improved and be proud of yourself!

Then I would seek to stop the "forced" practice, even people that might say okay to a group, I doubt most of them want all their information displayed literally to the world as anyone could take a picture and that information could now be in the public. If that's not a violation, I don't know what is. So now it's time to get very mad and figure out how to fix it.

Do talk to your GP first, but I would find out someone to report it to that counts as it's so egregious of an action. People should not have to go through that. Just awful.

 

[EllieM]

As a moderator, this is one of the few threads I have seen where everyone posting is in 100% agreement, which is nice to see even though the reason is so shocking.

I am finding hard to say which is worse: the forced information sharing, the threat to not supply insulin or the use of @Geminigirl as a "bad example" to show the other attendees.

All three are worthy of a complaint and in my opinion someone at the surgery needs a severe reprimand, at the least.

A cynical person might wonder if the entirely unnecessary hba1cs and follow ups by the surgery are because they get paid to do your treatment, even though you are now effectively under hospital care.

And an hba1c of 8 down from 14 is a fantastic result, don't let your surgery tell you otherwise.

(Grr, am now fuming over my breakfast cup of coffee.)

 

[Deleted member 543160]

All I can say is - that's ***** appalling!

Can your hospital consultant take action on your behalf?

( I had a problem over a non diabetic issue with a new nurse who wanted to change things, and sent me to a specialist clinic. Which actually backfired on her, in the form of a letter from the specialist nurse telling her I was to continue with my original treatment....)

 

[RoughcutAU]

That is terrible! Even when I attended my DAFNE course with lots of sharing the co-ordinator was super respectiful and asked everyones permission before sharing and if you didnt want to there was no obligation.

 

[Outlier]

This is disgraceful. I absolutely support your feelings and the need to complain strongly.

You have had excellent advice, to which I can only add: Complain in writing - phone calls can get "lost". If you have a phone call, tell them you are recording it. Seriously. And log the call in writing immediately it finishes, while your memory is fresh. It is very easy for people to pretend that you misunderstood what they were doing/saying. If such a situation arises for anyone else (you have very wisely said that you will not attend any further group sessions) I suggest the information on the board/screen is photographed as proof of this shocking data breach.

What a lost opportunity on the part of the group planners - could have been so supportive instead. I am so cross on your behalf.

 

[Geminigirl]

Thank you all so much for your support. I really appreciate it.

I have a telephone appt booked with the GP next week and in advance have written him a letter (kept a copy) about my concerns and totally horrible experience and that I felt coerced into agreeing to something for fear of not getting my Insulin. Also that I don't wsnt to be ref to One Life as I am in contact with the Diabetic Dietician based at the clinic and she is of great help. She actually just sent me loads of info on carb free and very low carb snacks.

I said while I appreciate the surgery and GP still need to see my results on the shared database and remain the prescriber, I don't understand the need for these group meetings when in fact my actual care is discussed with me and monitored by the hospital team. They are also my "go to" with problems.

I'll see what he says next week.

I spoke to my DN at the clinic today as she wanted an update on my numbers and I unfortunately have had a mild dose of food poisoning over last couple of days and today which has been very unpleasant.

Because of the rushing to loo on numerous occasions(sorry if tmi) she checked with the Consultant regarding my Forxiga. The Consultant actually rang me and advised I stop it until 48 hours after the upset tummy is completely better incase I lose too much fluid. I am drinking lots of water.

Anyway, the DN, (who is an absolute keeper) had told her about all this and she said she would be writing to the GP to say in her opinion it is unnecessary for them to duplicate the HBA1C and/or follow me up afterwards as their data is shared anyway and he is alerted when anything has been done. Diplomatically of course! Hopefully that will be the end of that.

Both her and the DN are happy with my progress so far and said it's a marathon, not a sprint. I am happy to have a boot up the bum when needed but they also support me in a way that I feel positive about the future, the other method just makes you feel useless.

I'll update on how the GP chat goes.

Again, thankyou.

 

[jjraak]

Thank you all so much for your support. I really appreciate it.

I have a telephone appt booked with the GP next week and in advance have written him a letter (kept a copy) about my concerns and totally horrible experience and that I felt coerced into agreeing to something for fear of not getting my Insulin. Also that I don't wsnt to be ref to One Life as I am in contact with the Diabetic Dietician based at the clinic and she is of great help. She actually just sent me loads of info on carb free and very low carb snacks.

I said while I appreciate the surgery and GP still need to see my results on the shared database and remain the prescriber, I don't understand the need for these group meetings when in fact my actual care is discussed with me and monitored by the hospital team. They are also my "go to" with problems.

I'll see what he says next week.

I spoke to my DN at the clinic today as she wanted an update on my numbers and I unfortunately have had a mild dose of food poisoning over last couple of days and today which has been very unpleasant.

Because of the rushing to loo on numerous occasions(sorry if tmi) she checked with the Consultant regarding my Forxiga. The Consultant actually rang me and advised I stop it until 48 hours after the upset tummy is completely better incase I lose too much fluid. I am drinking lots of water.

Anyway, the DN, (who is an absolute keeper) had told her about all this and she said she would be writing to the GP to say in her opinion it is unnecessary for them to duplicate the HBA1C and/or follow me up afterwards as their data is shared anyway and he is alerted when anything has been done. Diplomatically of course! Hopefully that will be the end of that.

Both her and the DN are happy with my progress so far and said it's a marathon, not a sprint. I am happy to have a boot up the bum when needed but they also support me in a way that I feel positive about the future, the other method just makes you feel useless.

I'll update on how the GP chat goes.

Again, thankyou.

Oh dear, hugs for the tummy upset.
Just what you needed

But 100% agree with everyone on here

Horrible experience.

Very easy for others to forget it's not just 'this' illness or condition, whatever that might be
.
We are people, with more complex need then JUST take this tablet or that.

Each action or occasion can impact on our physical AND mental well being .

Something I'm realising way too personally myself

We're more the just 'T2D' as in this case.

Hope you're able to find a happy medium where that IS fully respected.

However, It sounds very much like you have this in hand, and the hospital are backing you up nicely

Hope all goes as planned and no more nonsense from your surgery.


I hear you about knowledge at the meeting.

My Desmond's was like that, only one to have a clue about low carb, felt like everyone else just wanted to eat what they wanted and take any medicine dished out,
Very dispiriting how little others know or want to know, about a condition that has the potential to seriously impact them, sadly.


Ps well done ..great progress on the HBA1c.
I feel there's definitely more good news to come, judging by the tone n your posts ....good for you .

 

[Deleted member 489048]

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?

Write your doctor a letter! VOICE your concern IN WRITING and state you'd like your info kept private and confidential. No one can FORCE YOU, DONT BE PUSHED AROUND. The THREAT of your GP witholding your insulin is WRONG! Make that point clear in your letter that this is what was said to you!

 

[TigerTailz]

Hi, I'm sorry to hear of the issues you have been experiencing. I just wanted to add that in the NHS a 'duplication of care' is a huge no-no. It is classed as a waste of time, money and very stretched resources, so pressing this point can work wonders. Best of luck, I hope it is resolved soon.

 

[Juliabowles]

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?

 

[Jude]

I am surprised that the NHS is duplicating tests, stay under the hospital. Hope you can sort this. I live in Tenerife now but used to be under the main Coventry hospital where I also had a wonderful GP surgery. Tenerife ate very good at investigating everything but if my Endo is doing blood tests my GP surgery would not double up, waste of finite resources.

 

[Geminigirl]

Many thanks for all your support.
I spoke to my GP on the phone this morning and he had received the letter from me and the Consultant.

He agreed there is no need to replicate the HBA1C and that it will be left for the clinic to decide whether I need 3 or 6 monthly bloods. They share the info with the surgery. I also have my foot checks at clinic and obvs they make the decisions on treatment.

He said I had agreed to attend the group session and I pointed out that I agreed under duress as the DN hinted that if I didn't my prescriptions might be stopped. He said this would not happen but said it was probably a "training issue" and the nurses will be spoken to about their approach.

I also added that while I agreed to attend I certainly didn't agree to my personal details being bandied about and to be made to feel like the deterrent so others would perhaps be more compliant in their Diabetes care.

In the end he did apologise on behalf of the surgery for their treatment of the situation and accepted I do not intend to accept the ref to One Life.

I told him I have spoken to the DN at clinic yesterday, told her my readings etc and feel I am being fully supported.

In the end although we agreed to disagree on a couple of points i'm okay with the outcome.

As a GP and surgery generally I have had no real complaints and think it was over zealous nurses tbh.

 

[Dr Snoddy]

Thank you for sharing the outcome.Standing up for what is right is so important!

 

[lovinglife]

Thanks for the update, glad you got it sorted to your satisfaction, hopefully this will be a learning curve for the surgery staff, certainly for the nurse in question. Well done for sticking up for yourself it’s not easy to stand up to people we are brought up to look up to and not question, I think that is sometimes how they get away with treating people with disrespect

 

[Ditzy47]

I was once told I didn’t have to attend the the diabetes or asthma clinics but that the practice get funding from the NHS for everyone who does. I don’t know if this is still the case but I go because our GPs are brilliant but obviously struggling with understaffing and underfunding. Contrary to popular belief, GPs do not take home a fortune. Their income has to pay for the surgery itself, the staff, (except for other partners), all the bills, accountants, equipment, sick, holiday and maternity pay, redundancy, pensions and locums when needed as well as having to own a reliable car for home visits. There are times when they are actually working long hours for nothing because of these circumstances.

 

[Rob77]

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?

Hi I'm new here. Obviously I agree with everything that's been said here, but just wanted to comment on the fact that you've been prescribed Forxiga or Dapagliflozin. I was given this back in 2016, within a month I had DKA and was in ICU few days. GP said this was down to Forxiga but shouldn't happen to type 2s therefore I must be type 1, retested and results inconclusive, they still can't decide now!!
This drug has now had license withdrawn (dec2021) for use with type 1s due to high rate of DKA.
I wouldn't be very happy taking it and if you Google it, you can see there are class actions in USA being taken for horrendous side effects.
Don't want to be off the topic but it seems important based on my experience.
BTW I always have local nurses contradicting my consultant Endocrinologist.
Best wishes.