Discharged from UK Diabetic Consultant care?

[Kerry48]

Hi, I have type 1 Diabetes, for the past 48 years. I have always, since the day I was diagnosed been under the care of a separate Diabetic care team, with dietitians, consultants and easy referrals to any other needed specialists such as podiatry, opthamology etc.
However, my Diabetic care team have recently “discharged“ me, saying that I now need to go to my GP for general care and if I need specialist help again, to get referred by the GP.
The trigger for this was the issue of a libre 2 sensor and for being in target 86% of the time.
I have tried to object to this and ask why after 48 years has this changed, but the answer by South Staffordshire Diabetic care team was “Complain to PAL’s (the patient liaison services)”.
I truly feel like the rug has been pulled sharply from underneath my feet. I understand that the GP is still there, but I hope all here will understand when I say that they do not fill me with confidence.
I do have issues, including an attempt at suicide 4 years ago, osteoarthritis, rheumatoid arthritis, and constant retinal bleeds from laser treatment scars given 20 years ago.
I just wanted to ask if this has happened to anyone else in the UK, or specifically S.Staffs?
I just need to understand how everyone else is being treated.
Thank you, in anticipation of your replys.

 

[Grant_Vicat]

Hi, I have type 1 Diabetes, for the past 48 years. I have always, since the day I was diagnosed been under the care of a separate Diabetic care team, with dietitians, consultants and easy referrals to any other needed specialists such as podiatry, opthamology etc.
However, my Diabetic care team have recently “discharged“ me, saying that I now need to go to my GP for general care and if I need specialist help again, to get referred by the GP.
The trigger for this was the issue of a libre 2 sensor and for being in target 86% of the time.
I have tried to object to this and ask why after 48 years has this changed, but the answer by South Staffordshire Diabetic care team was “Complain to PAL’s (the patient liaison services)”.
I truly feel like the rug has been pulled sharply from underneath my feet. I understand that the GP is still there, but I hope all here will understand when I say that they do not fill me with confidence.
I do have issues, including an attempt at suicide 4 years ago, osteoarthritis, rheumatoid arthritis, and constant retinal bleeds from laser treatment scars given 20 years ago.
I just wanted to ask if this has happened to anyone else in the UK, or specifically S.Staffs?
I just need to understand how everyone else is being treated.
Thank you, in anticipation of your replys.

Hi @Kerry48 Although I haven't had exactly your experience, I fully sympathise. One of the key things with long-term diabetes is that you can trust and rely on the finest care and advice available. Personally I have used PALS,, both negatively and positively, at two very fine hospitals, King's College London and Addenbrooke's Cambridge. It was an effective tool each time. I reckon you could post your message to PALS letting them know exactly how their decision affects you Have you anything to lose? I wish you the best of luck.

 

[Jaylee]

Hi,

It’s kind of odd.. I’m “sorta” with an endo & associated “care” team? But everything seems done through my GP..
I’m in Wiltshire.. lol, just inside the line. Quite frankly, unless. I get better care from my mechanic on my van..

Just noticed we are the same “age group.” Yes, I was funded a Libre. Target has turned to hell for me recently. Job changes & accommodating.)

Even the scans on what was successful treatment for Macula oedema has been dropped.

Now oddly, I have a younger sister. She commented a little while back she felt I always suffered from depression? (Or a form of.)
This was at a time I never felt better. Weird. Happily married doing what we want…

Hmmm, how am I treated. I put it down to the “sign of the times?” I can quite happily hand over any time that could be spent on me to someone in a worse position.. But that’s no help with suggestions with what I need other than the last crazy advice from a DSN on a phone call appointment whilst she was recovering from covid give up the day job & do the band full time? Which is the only time I’m in range. Frustrating at 54 too late to take a punt on that “one.” Years ago I was frowned upon…

 

[Kerry48]

Hi @Kerry48 Although I haven't had exactly your experience, I fully sympathise. One of the key things with long-term diabetes is that you can trust and rely on the finest care and advice available. Personally I have used PALS,, both negatively and positively, at two very fine hospitals, King's College London and Addenbrooke's Cambridge. It was an effective tool each time. I reckon you could post your message to PALS letting them know exactly how their decision affects you Have you anything to lose? I wish you the best of luck.

Thank you. Sometimes, you just need a push. I really have tried to contact my old Diabetic services team, but as they now refuse to communicate, I have no options left, PALS here I come.

 

[Grant_Vicat]

But everything seems done through my GP..

Hi @Jaylee It worries me that this is just what the Government wants. If we accept it, it will become the norm. They asked me at Addenbrooke's (Cambridge University Hospital) whether I would like to continue with phone consultations. I said no. I think because for about 18 months they think this "worked",
then why not carry on? They learn a great deal from body language, visual appearence etc. are 2 reasons alone to say no.

 

[Juicyj]

Sorry to hear this @Kerry48 I really feel for you, but great advice from @Grant_Vicat so hope you get a good outcome, they seem keen to stick care onto General Practitioners and not 'Specialists', which is very gravely concerning, as the standard GP knows diddly squat about 'Specialist' conditions.

 

[orchid glass]

Hi, I have type 1 Diabetes, for the past 48 years. I have always, since the day I was diagnosed been under the care of a separate Diabetic care team, with dietitians, consultants and easy referrals to any other needed specialists such as podiatry, opthamology etc.
However, my Diabetic care team have recently “discharged“ me, saying that I now need to go to my GP for general care and if I need specialist help again, to get referred by the GP.
The trigger for this was the issue of a libre 2 sensor and for being in target 86% of the time.
I have tried to object to this and ask why after 48 years has this changed, but the answer by South Staffordshire Diabetic care team was “Complain to PAL’s (the patient liaison services)”.
I truly feel like the rug has been pulled sharply from underneath my feet. I understand that the GP is still there, but I hope all here will understand when I say that they do not fill me with confidence.
I do have issues, including an attempt at suicide 4 years ago, osteoarthritis, rheumatoid arthritis, and constant retinal bleeds from laser treatment scars given 20 years ago.
I just wanted to ask if this has happened to anyone else in the UK, or specifically S.Staffs?
I just need to understand how everyone else is being treated.
Thank you, in anticipation of your replys.

Hi Kerry, I'm Hereford and I can't believe you have posted this ! I was only saying last night to my husband... it's so odd that they have given me a telephone consultation ( January 2023 ) when I've not seen a diabetic nurse or my specialist in over a year.
I am also suspecting that this is the way things will go but to be honest with you, especially as they have now issued me with a Libre 2

I used to get fed up with the specialist changing and having to go over the same things all the time.
So long as I have what I need ( at the moment Libre 2 ) I'm comfortable with my situation.

Everyone is different, so I too would say that if you need something changed, do contact PAL's
We all must be looked after one way or another and only we know what help we need.

Stay strong and calm

 

[KnittingGirl]

Hi. Funny I was talking about this with my Diabetic nurse. I have been type 1 for 42 years and my nurse couldn't believe I hadn't seen a consultant sine 2004. I was discharged from the hospital and told my GP would be looking after me. But its not only me. I know of least 7 other people in my area who don't see a consultant. It is only because my nurse wants me to go on the libre sensor am I being referred. What is worse is that they are doing this now as im putting in a complaint as my kidneys have attacked by my endometriosis for the last 15 years and only now have they told me!

 

[himtoo]

so far i am fortunate that i am seen by my DSN and Endo every 6 months ( interupted a bit during covid though ) i think it is totally unacceptable for you to be pushed back into primary care for a lifelong condition that the vast majority of GP's will not have a scooby doo about.
definitely a PALS letter is in order.....good luck and keep us posted xx

ps--- i am in north wales in Betsi cadwallader health board

 

[Kerry48]

Hi,

It’s kind of odd.. I’m “sorta” with an endo & associated “care” team? But everything seems done through my GP..
I’m in Wiltshire.. lol, just inside the line. Quite frankly, unless. I get better care from my mechanic on my van..

Just noticed we are the same “age group.” Yes, I was funded a Libre. Target has turned to hell for me recently. Job changes & accommodating.)

Even the scans on what was successful treatment for Macula oedema has been dropped.

Now oddly, I have a younger sister. She commented a little while back she felt I always suffered from depression? (Or a form of.)
This was at a time I never felt better. Weird. Happily married doing what we want…

Hmmm, how am I treated. I put it down to the “sign of the times?” I can quite happily hand over any time that could be spent on me to someone in a worse position.. But that’s no help with suggestions with what I need other than the last crazy advice from a DSN on a phone call appointment whilst she was recovering from covid give up the day job & do the band full time? Which is the only time I’m in range. Frustrating at 54 too late to take a punt on that “one.” Years ago I was frowned upon…

Jaylee, hi, sorry to hear about your treatment. We are in fact the same age, and unfortunately seem to be having problems with our care from the NHS. Whilst I too feel sometimes that the care will be going elsewhere, I also used to work in the finance depart of a NHS Trust and saw the amazing waste of cash that bad management results in. A sign of the times maybe, but it’s been this way for sometime now. I had to sign a non disclosure form against my will, which is now preventing me from telling all, else I happily would. I keep trying to tell and remind myself that these are only people too, and as such, make mistakes.
I can however share that I know a GP nurse who is supposed to be in charge of diabetic patients and was themself diagnosed with type 2. They self diagnosed two months before “coming out” if you will, so that their own private health insurance application wasn’t affected, then continued to give others dietary advice whilst knowing that they didn’t follow it, and also smoked. Do I trust the NHS? Absolutely not. The lesson here, is to look after number 1.

 

[Kerry48]

so far i am fortunate that i am seen by my DSN and Endo every 6 months ( interupted a bit during covid though ) i think it is totally unacceptable for you to be pushed back into primary care for a lifelong condition that the vast majority of GP's will not have a scooby doo about.
definitely a PALS letter is in order.....good luck and keep us posted xx

ps--- i am in north wales in Betsi cadwallader health board

Thank you, will do. I just need to get my head into gear, and I’ll be on it.

 

[Kerry48]

Hi. Funny I was talking about this with my Diabetic nurse. I have been type 1 for 42 years and my nurse couldn't believe I hadn't seen a consultant sine 2004. I was discharged from the hospital and told my GP would be looking after me. But its not only me. I know of least 7 other people in my area who don't see a consultant. It is only because my nurse wants me to go on the libre sensor am I being referred. What is worse is that they are doing this now as im putting in a complaint as my kidneys have attacked by my endometriosis for the last 15 years and only now have they told me!

Thank you for replying, if for nothing else, I am now convinced I need to follow this up at PALS. I wish you well, and good luck with the sensor, hope it helps with your kidney problems. I must admit, the sensor was a game changer for me, I just didn’t expect it to be followed by a discharge.

 

[Kerry48]

Hi Kerry, I'm Hereford and I can't believe you have posted this ! I was only saying last night to my husband... it's so odd that they have given me a telephone consultation ( January 2023 ) when I've not seen a diabetic nurse or my specialist in over a year.
I am also suspecting that this is the way things will go but to be honest with you, especially as they have now issued me with a Libre 2

I used to get fed up with the specialist changing and having to go over the same things all the time.
So long as I have what I need ( at the moment Libre 2 ) I'm comfortable with my situation.

Everyone is different, so I too would say that if you need something changed, do contact PAL's
We all must be looked after one way or another and only we know what help we need.

Stay strong and calm

Thank you.

 

[RoughcutAU]

Sorry to hear your woes with the UK health system! It is most unfortunate that people who do genuinely try to look after themselves are pushed aside so the system has money to deal with those that don’t. I am aware that that is rather a sweeping statement.

Though on the other side of the globe (Australia) i find myself quite fortunate that even though I was technically discharged to the care of my GP the Diabetes Team at the hospital have still been an amazing help. Probably helps that I visit the hospital Endocrinologist and also enrolled and participated in the DAFNE course they run.

 

[JC Durant]

Hi my GP surgery in south west London looks after me very well . There offer diabetic trained nurses and semi specialist doctors. If I have a problem they are on it straight away. Looks like it is a bit luck where you live.

 

[Kerry48]

Hi my GP surgery in south west London looks after me very well . There offer diabetic trained nurses and semi specialist doctors. If I have a problem they are on it straight away. Looks like it is a bit luck where you live.

Thank you for passing that on. I can’t complain effectively, unless I know what the normal is for everyone else. Hope your good treatment continues.