Discharged from clinic:(

[janabelle]

I had a diabetic clinic appt at my local hosp last week. All went well Hba1c fine, so doc barely stopped for breath to listen to my concerns about my kidneys which are pain & excessive urination. I also have developed some painful lumps in the bottom of my right foot which are probably not diabetes related but he referred me to the nurse to have them examined in March. I was given another appointment for next February for the clinic. On the way home the appt card must have fallen out of my bag, so I made a mental note to ring the clinic & get the dates. I did so this morning only to be told that I had no clinic appt next year and I had been discharged from the diabetes clinic.
After appox 1 hour on the phone trying to find someone who could explain the situation, I was told that I had been discharged this morning by the consultant herself, as there was no clinical need for me to be seen at the hospital anymore and my diabetes would be in the care of my GP. Apparently this North London Hospital is discharging a lot of diabetic patients in this way, and are allowed to do so without consulting with the patient or giving prior warning. I was told by PALS that "if doctors had to consult patients about every clinical decision, they wouldn't get anything done!" So whatever happened to the patients charter and the right for patients to be consulted about their care I wonder??
I am flabbergasted, I've been type-1 for 23 yrs, and although am now well controlled, last weeks appointment was the first time in ages I've actually had any concerns for my health that might be diabetes related and now they want to discharge me??
Anyway, I managed to get next years appointment re-instated, but am furious about the way I've been treated and very anxious over the future of my diabetes care. I've had problems in the past with GPs trying to restrict my BG testing strips, and on one occasion it was necessary for the hospital clinic to write to my GP in my support. If I were to have such a problem with my GP in the future, who do I go to? I've already had to fight my GP for a referral to a back specialist when the report from my MRI scan stated I needed to see an orthopedic surgeon, and this GP said they would only send me for MORE physiotherapy! I despair.
Has anyone else been discharged from there hospital diabetes clinic like this?
Jus

 

[hannah95]

a lot of hospitals do this, if a patient is well controlled they are seen through their gp unless they have difficulties controlling it. my consultant told me that most well controlled ones are seen through their gp

 

[janabelle]

Hi Hannah,
It's something that's worried or should I say terrified me since I was diagnosed 23 yrs ago, especially as most GPs don't know enough about the condition and many can't even distinguish between type-1 & type-2 . I had only been diagnosed just over 2 yrs prior to my 1st pregnancy, and at the age of 22 was astounded when my GP, who was running a diabetes clinic from his surgery. asked if I checked my own blood sugar at home LOL I sarcastically answered that I just waited for my yearly check-up, as if
Diabetes care seems to have taken a step backwards in recent years, doctor's reliance and unwavering trust in the Hba1c test as an indicator of good diabetes control is one reason, and the other is the push for everyone to be on analogue insulins, but I think even the daffy doctors r gettting wise to the associated problems now ,thank goodness.
What I can't get over about the situation I found myself in today is the sheer rudeness and total disregard for the patient concerned, which happened to be me, but could just as easily be a 75 yr old suffering daily disabling hypos and possibly daily hypers of 20+, but still having an "acceptable" Hba1c of 6.
The reality it that all an Hba1c result gives you is an average, and not a true picture of daily control. The doctor I saw last Thurs did not ask me at any time how my daily control was, my Hba1c was 6.3 I think. However 5-6 years ago my Hba1c was round about 7 and the clinic said that was fine, even though, on godawful Lantus, I was yo-yo-ing from 2-18+ nearly every day! I could easily have been discharged then if it was percieved there would be no clinical need for me to remain under the care of the hospital clinic, purely on the basis of an acceptable or within range Hba1c test.
It's all wrong, and if hospitals are allowed to treat patients in this appalling fashion, and GPs have no one to answer to we should all be worried.
thanks for your reply Hanna, sorry to babble on.
Jus

 

[goji]

Hi Janabelle

I had the same issue with being discharged from a hospital clinic. The endo said I was well-controlled at 6.3% so no further input needed. I felt worried too as I think that GPs are not that educated about diabetes and primary care diabetes is about collecting QOF points ie. ticking boxes.

 

[noblehead]

Pleased you got the appointment re-instated Justine!

I was transferred to the care of my gp practise around 5 years ago, around this time I was having a few issues with my insulin so asked to be referred back to the hospital clinic to discuss this with the consultant, since this time I have remained under their care and hope this continues to be the case.

 

[Geri]

Sorry to hear about the change around and Im surprised that you could have been under the sole care of a GP!
I was referred to a Diabetes nurse at the local surgery several yers ago, but, fortunately she admitted not knowing anything about the relationship with type 1 diabetes and the other auto immune conditions that I have. I was impressed and pleased when she told me that she couldnt take responsibility for my care and duly referred me back to the hospital clinic.
Another GP told me that there was no relationship with hypos and low thyroid levels!!!!! which thankfully, as a then new mother (meant that I was always having hypos until I saw the endo. The short of it is that some GPs are just not up to date with problems associated with type 1.
I sincerely hope that you remain with the endocrinologist at the diabetes clinic indefinately, or that you get an up to date doctor who really know his/her stuff! 8)

 

[Unbeliever]

They are not up to date with the problems associated with T2 either Geri. Many leave it all o the Practice Nurse who knows even less.

I do wish more of them would have the gits and decency to admit this. I would have been impressed and pleased a syou were .

A few months ago I was in a similar situation regarding my retinopathy'macular oedema. In he absence of the consulltant opthalmologist I was extremely grateful to his subordinates who refused to perform laser treatment on me as there was little room left for it and they did not feel competent to do it.

All these people are under pressure and it must sometimes be very difficult to refuse to treat patients when all the focus is on clearing backlogs . It would be much easier for them too just go ahead and risk injuring the patient in some way.
I am sure that in most circumstances it would be impossible to prove that this had happened.

Thank goodness for these courageous people .

 

[weeezer]

hi janabelle

i agree with you, it's rubbish. i have been t1 since 2000, and my clinic appointments have always been a lifeline. not only are they a mini MOT every 6 months (coz of all the tests) they are a reason to behave (yes i know our good health is the most important reason, but...) because someone is there to monitor your control, and they are the ONLY place we can ask KNOWLEDGABLE people about t1 issues.

like you said, the nurses & docs at my surgery barely know the difference between types.

apart from 3 years living away (in australia, where care was similar, clinics every 6 months), this has always been the way, regular clinics and contact with a DSN. until...whilst trying for a baby, was transferred to a 'pre-conception diabetic clinic' about 20 miles away because my local hosp didn't run them. was great, very useful, there about a year before becoming pregnant. stayed under same consultant who got to know me as my pregnancy progressed. they were good during pregnancy & afterwards. until my 6 week checkup after baby was born. then they discharged me, assuming i wanted to go back to my local clinic.

i would've been happy to go back...but because i was out of the system, i have been left to float about with no care! i tried to rectify this when things had settled down and my baby was 1, and my local surgery nurse agreed i should be referred. she called in a DSN who resides in the practice (but doesn't 'see' diabetic patients) who agreed also. and she was going to refer me to a dietician to talk about carb/insulin exchange in more depth. 6 months go by, nothing. i see a few different docs for various things and ask...they all vaguely explained that there was no need for me to see a consultant. its the clinic aspect of it i missed. there were a few possible diabetes related worries i had, but no, not 'allowed' to attend a clinic. during my worries i would ask for various tests, so my A1c was being checked. the only consistent thing was eye testing, which every year on the button, an appt comes thru. but nothing to tell me when i needed all the rest checked. went back to nurse again and she chased it all up, still nothing. turns out the referral had been passed to a doc who decided 'computer says no'.

it's only recently with a 'misdiagnosed' high hbA1c, that got the ball rolling and finally i possibly maybe might get an appt with the clinic. (was sent a letter asking to arrange to talk to doc to discuss latest results, he told me my diabetic blood results were 10.7, i've never had an A1c in double figures and was beside myself, so wanted to sort it all out & pushed for help. turns out, after randomly talking to a nurse because she rang me to ask some questions, i find out he was referring to my fasting BG!?!?!?? A1c was actually 6.8. never had fasting tested before, why would i? i have a meter for that!!)

anyway. i feel ranty about it because where else (apart from this fine forum) do we get to find out new stuff? changes in treatments/advances in science? info on things like pumps etc. and like was said, my A1c's always paint a pic of good control, but no...sometimes will be hypo-ing frequently then high... so it doesn't tell you the big picture always does it.

absolutely awful that they are slowly removing this facility from our care. :thumbdown: well done you for persevering and getting an appt for future clinic. i hope my perseverance pays off too.

 

[lionrampant]

I think I too would fight tooth and nail to remain at a clinic - I'd rather my results be looked over by a specialist than a DSN.

 

[catherinecherub]

Welcome to the future of Healthcare for many chronic conditions.
Guidelines were being rolled out in 2002 for G.P.'s to specialise in Diabetes care and this document shows what they would need to do to become specialised. An Endocrinologist has a minimum of 5 years training after he has become a General Practitioner.
https://www.diabetologists.org.uk/Share ... D_GPSI.pdf

 

[sugar2]

:shock:

 

[smidge]

Hey all!

Well, I've just had a rant on Soapbox about the knowledge of the new GP at my surgery

http://www.diabetes.co.uk/diabetes-forum/viewtopic.php?f=2&t=27054

They really are not the best people to be dealing with Type 1 diabetics (or any diabetics really!). I know I am going to have a big fight to stay at my hospital diabetes clinic after September. They wanted to discharge me this year, but I managed to persuade the consultant to stay on his books for another year. I'm just hoping that as my LADA condition is, by definition, constantly changing, he'll be persuaded to continue my care there. Heave help me if I end up under the care of the GP I saw today :roll:

Smidge

 

[hannah95]

Diabetes care seems to have taken a step backwards in recent years, doctor's reliance and unwavering trust in the Hba1c test as an indicator of good diabetes control is one reason, and the other is the push for everyone to be on analogue insulins, but I think even the daffy doctors r gettting wise to the associated problems now ,thank goodness.
What I can't get over about the situation I found myself in today is the sheer rudeness and total disregard for the patient concerned, which happened to be me, but could just as easily be a 75 yr old suffering daily disabling hypos and possibly daily hypers of 20+, but still having an "acceptable" Hba1c of 6.

im completely agree with you !! my a1c was 9.6 last year (yes its too high i know) but i had better control than when im now 8.8 and yo yoing and the only reason its that low is my hypos but it seems like im improving my friends is 8,3 we're about the same a1c yet hers is because she stays levels mines because its an average from the highs and lows. i think ill alwyas be under the hospital due to the fact my gp knows nothing about it :L and has said he wants me under a consultant. i dont trust a1cs that much tbh