Anyone feel like a 2nd class citizen in the NHS’s eyes?

[Louise12216]

Just needing a vent right now, ac1 has been going up since being on insulin (June 2020) started off on Insultard and currently on Humilin M3. Need to take a large amount as very insulin resistant. Fed up of telling them about the weight gain and other issues to be told you have too much insulin reduce the amount - no assistance- just ‘well you need to reduce it right down’. So had my sod it moment about a month ago, stopped the metformi, Algogliptin and reduced my insulin intake right down to anywhere between 10 and 30 units twice a day. Low and behold as I told them it would, my numbers shot up - highest was 20.1. Just been to see DN to argue the case to go on a basal and bolas regime and slgt2 tablets so that I can control the spikes better and the slgt2 was referred to in a letter received back from hospital DN, as previous DN, tried to refer me to more experienced people (who said I did not need to see them). I am also on my own all day from early morning to sometimes mid evening as my husband is working so I argued the case for a CGM ( so I can have an alarm go to my Mum just in case - NICE guideline’s do allow for them with certain criteria. DN said you need to see them at the hospital to get one of those - I replied I would if someone would see me! She is now going to speak to the Doc and call me back next week to see what they say. Asking to see an Endo and get a c-peptide test is like seeing god in the West Country it seems - when taking insulin we have the same issues as type 1’s why are we treated like 2nd class people? Is it because secretly they blame our issues on us ( I controlled with diet only for nearly 4 years) Btw I am still controlling my diet with low carb, had this now 13 years - Sorry rant over.

 

[alimar77]

Great post, I’m feeling the same about the NHS, in fact for the first time since being with my GP surgery, I ranted at my GP yesterday.

GLP-1s have caused gallbladder disease! The NHS won’t treat me or remove my gallbladder, BMI to high… nothing in NICE Guidelines about restricting surgery to those with a higher BMI, if anything it states people should be treated if symptoms are limiting day to day activities.

Asked for a referral to weight management, waited 10 months service decommissioned, and taken on by another town, on a longer list.

Previously been through all this and got to surgery stage 10 years ago only for it to be cancelled the morning I went in.

I lost 50kg myself, yet no-one in the NHS appreciates this! That’s 7 stone! Ok I’m still fat but I’m trying.

I have an eating disorder can’t get help for.

I’m needing massive amounts of insulin, which causes weight gain.

I’m still in pain with my gallbladder.

My GP thinks the answer is bariatric surgery as I’ll lose weight, my diabetes will disappear and my pain will improve, osteoarthritis and fibromyalgia. What she fails to say is it’s probably a wait of 36,000 years to even be seen!

I’m sick of them just not understanding.

I’m debating taking myself off and putting myself in debt to have my gallbladder out, because this constant pain is just making me suicidal.

 

[BoatieBird]

I could have written most of this myself too. With the exception that I get told to up my insulin over and over again. Then I get told that I must lose weight. I have become truly fed up of explaining that I can't lose whilst injecting high doses. It falls on deaf ears because I'm supposed to fit into their tickboxes... And because I don't, there's no treatment plan.
I think as T2's we are treated as second class citizens by all of the NHS, and not much better by general society either. We are seen as overweight overeaters who would surely be cured if only we stopped gorging on doughnuts and chips.
I'm currently out to prove a point. I'm logging all food and exercise, practising low carb and intermittent fasting... If I lose weight and reduce my blood sugars I'll be ecstatic. If I don't, then I'll insist on a face to face review and show my food, bloods and dosage log.

 

[Oldvatr]

I am a T2D on orals, so not quite in the same boat as others in this thread. but I had experience of the West Country way of doing things. Type 1's and LADA/ MODY are handled exclusively by the endos at the district hospital, while the GP bumbles along with T2D's. T1D's etc get a weekly appointment, and get to see dieticians and nutritionists. I only got to see those when I was being referred to the Endo for insulin therapy.

I did not take up that offer, and for me Low Carb worked a treat. But I too kept a food ;log and drew beautiful graphs for my GP and to be fair in those days he was supportive of me going LCHF. We have fallen out recently over target levels since he wants me to toe the NICE guidelines for older folk which is higher than for most T2D since we are supposed to be feeble minded and not able to deal with hypo's. or take care of our condition. So yes, now I feel second class and under suspicion. He is threatening to withdraw my medication if I return an HbA1c less than 56, whereas I have been less than 48 for several years now. I suspect that if my next one is not definitely diabetic, then he will not be able to c;lass me as T2D and thus cannot prescibe those meds. So my average bgl now is 7 going on 8 which is uncomfortable for me.and I am putting on weight. So the bean coiunters win again.

 

[cdpm]

I am a T2D on orals, so not quite in the same boat as others in this thread. but I had experience of the West Country way of doing things. Type 1's and LADA/ MODY are handled exclusively by the endos at the district hospital, while the GP bumbles along with T2D's. T1D's etc get a weekly appointment, and get to see dieticians and nutritionists. I only got to see those when I was being referred to the Endo for insulin therapy.

I did not take up that offer, and for me Low Carb worked a treat. But I too kept a food ;log and drew beautiful graphs for my GP and to be fair in those days he was supportive of me going LCHF. We have fallen out recently over target levels since he wants me to toe the NICE guidelines for older folk which is higher than for most T2D since we are supposed to be feeble minded and not able to deal with hypo's. or take care of our condition. So yes, now I feel second class and under suspicion. He is threatening to withdraw my medication if I return an HbA1c less than 56, whereas I have been less than 48 for several years now. I suspect that if my next one is not definitely diabetic, then he will not be able to c;lass me as T2D and thus cannot prescibe those meds. So my average bgl now is 7 going on 8 which is uncomfortable for me.and I am putting on weight. So the bean coiunters win again.

This just isn't right.
Y in such a modern age are they still not helping. I hope you get something worked out to feel better.

 

[Louise12216]

Great post, I’m feeling the same about the NHS, in fact for the first time since being with my GP surgery, I ranted at my GP yesterday.

GLP-1s have caused gallbladder disease! The NHS won’t treat me or remove my gallbladder, BMI to high… nothing in NICE Guidelines about restricting surgery to those with a higher BMI, if anything it states people should be treated if symptoms are limiting day to day activities.

Asked for a referral to weight management, waited 10 months service decommissioned, and taken on by another town, on a longer list.

Previously been through all this and got to surgery stage 10 years ago only for it to be cancelled the morning I went in.

I lost 50kg myself, yet no-one in the NHS appreciates this! That’s 7 stone! Ok I’m still fat but I’m trying.

I have an eating disorder can’t get help for.

I’m needing massive amounts of insulin, which causes weight gain.

I’m still in pain with my gallbladder.

My GP thinks the answer is bariatric surgery as I’ll lose weight, my diabetes will disappear and my pain will improve, osteoarthritis and fibromyalgia. What she fails to say is it’s probably a wait of 36,000 years to even be seen!

I’m sick of them just not understanding.

I’m debating taking myself off and putting myself in debt to have my gallbladder out, because this constant pain is just making me suicidal.

Sorry to hear about your gallbladder problems. I had mine removed in 2006, after 2 years of the GP saying you have gallstones, ultrasound which could not pick them up because I was too fat - I was 15 stone at the time , CT scan did not pick them up, MRI was cancelled and a bone scan took place instead. 9 months off work being sick every day eating a couple of spoonfuls of food a day - 3 trips to A&E via ambulance due to collapsing with the pain. 1st visit ‘well it’s like IBS but in the wrong place - take up walking’ 2nd visit said to nurse don’t know why it happened I haven’t eaten anything today - nurse well these extreme diets are silly things to go on!!!’ But they did detect infection in my blood but as I had my CT the next week they discharged me again. In between had a private MRI paid for by Mum and Dad as we were due to go abroad on holiday and they were worried about me. 3rd trip a consultant heard about me took pity and admitted me. 9 day stay in hospital I had my gallbladder removed in a 2.5 hr operation it was badly infected and it was full of what was sand like material - he Could not believe I had been enduring it all for 2 years. Since then my faith in the NHS has always been sketchy to be honest.

 

[Louise12216]

I could have written most of this myself too. With the exception that I get told to up my insulin over and over again. Then I get told that I must lose weight. I have become truly fed up of explaining that I can't lose whilst injecting high doses. It falls on deaf ears because I'm supposed to fit into their tickboxes... And because I don't, there's no treatment plan.
I think as T2's we are treated as second class citizens by all of the NHS, and not much better by general society either. We are seen as overweight overeaters who would surely be cured if only we stopped gorging on doughnuts and chips.
I'm currently out to prove a point. I'm logging all food and exercise, practising low carb and intermittent fasting... If I lose weight and reduce my blood sugars I'll be ecstatic. If I don't, then I'll insist on a face to face review and show my food, bloods and dosage log.

I hear you, I have reduced my insulin to 25units in the morning and 25 in the evening No matter if it’s high I really have my sod it hat on the momen…. My meter has not had me below 10 on my average since, the Slg2 has had no effect unfortunately. Going by the HBAC1 calculator my next one will be about 64. That will be up from my last one at 57 but the good news is I have lost 13kg since April 12th because I am still doing low carb when I can see in my records what they weighed me at. I won’t be able to keep these numbers up as I know I am risking damaging my organs and sight but if the only way I can show them what their advise does then so be it. This is one thing I cannot get my head around as I lose weight my numbers always go up ‍

 

[PatsyB]

well a few weeks ago I went to the Doctors to say I was feeling very tired more than usual and exhausted and said I thought it was my Thyroid as I have had an under active Thyroid sine being a teenager so know the signs, they did a blood test but a few days later I fell down the stairs backwards after feeling very dizzy and passing out, was taken to A & E as the paramedics was sure I hade broken my arm and shoulder, had a CT scan and X-rays which said I had no breaks when i returned home the following day I checked my results and sure enough my levothyroxine was too low, now did the |Doctors ask to check me out NO they did not I was not even asked why I passed out at the top of the stairs making me fall backwards down 14 steps which I know from work experience can kill or cause serious damage to the body, I find they not interested in treating people over a certain age with the same curtesy and respect all should be given.