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Diabetes and dignity

B

blankit

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6
There are a number of posts here about the practicalities of obtaining prescriptions and medication, and seeing doctors or consultants. I'm curious about the more personal side of these experiences, how you find dealing with the NHS and negotiating (or arguing) for the treatment you need.

I've personally found many of my experiences with doctors to be demeaning and humiliating. I'm often treated as if I don't know what's best for me, I find staff will talk over me and ignore my thoughts, feelings and opinions about my treatment. If I was treated this way anywhere else I'd leave, but being insulin dependent I have to stay in touch with my doctor's practice to secure prescriptions for insulin.

I don't feel safe to argue or challenge the doctors as I'm worried they'll withhold my medication - this happened once when I disagreed with a doctor. Being tied to the NHS like this and knowing they can cut me down like this compounds my sense of degradation and being out of control of my condition. I feel enraged from being humiliated, and ashamed to be so dependent on people who treat me this way.

As you might imagine, my control isn't great. I'm aware that I would probably benefit from treatment reviews and checkups, but I try to have as little contact with the NHS as possible.

I'd really like to know if anyone relates to this and how you've coped with it personally. There's a lot of practical advice on this forum but I'm really not looking for that right now. I'd like to hear from anyone who's had similar experiences and if you've managed to make a better working relationship with the NHS.

Thanks.
 
I am sorry you feel like that - there can be some difficulties with what I see as a few staff but I think from my own experiences most nhs staff are courteous and professional. I know you are not happy about a number of things including the issue of prescriptions - but we cannot just dole out repeats without a check and behind the scenes prescriptions are checked before they are given to pts. Si it may seem a slow process to get your medication but it is not just a question of writing the script!

If you feel that you are not being treated fairly go and talk to someone at the surgery. Talk to the lead nurse or the practice manager - most of them are human honestly!

My own experience as a pt at my surgery has always been good - especially with my kids.
 
To be brutally honest OP, I find that most of the time any problems I have stem from my own attitude and energy. If I go in in a negative manner, that's what I get back! Not all the time of course but very often!
 
I told my endocrinologist exactly what I thought of him after he blatantly lied to me and strung me along with promises of new meds every 3 months, You could tell the old toff was not used to being told exactly what he was. Maybe he got the point. I got the nurse to transfer me to a different one who has been fantastic so far.

Doctors and specialist should NOT lie blatantly to your face expecting you to just sit there and take it with there they know best attitude.

Other than him all the nurses and other staff are fantastic
 
mehdave said:
Doctors and specialist should NOT lie blatantly to your face expecting you to just sit there and take it with there they know best attitude.
Click to expand...

Hear hear!

Couldn't agree more. Can I ask (answer by PM if you prefer) what he told you that was a blatent lie? And how did it come about? Was it during the process of trying to establish a treatment plan?
 
I have found the treatment from HCP's as varied as any other job. Over the years (and not necessarliy dibetes related) I have met everything from courteous proffesional, who listens to me and my opinion, to others who treat me as a moron who should just sit there and take what they say as gospel without queery.

I have been fortunate to have practices with several doctors and have swapped within the practice until I found the doctor that suited me. The one that didn't treat me as a problem to solved, but as part of the solution.

I have found though that the quality of diabetes care and info is very varied too. A previous GP discovered that I was pre-diabetic amd involved me in my care to keep myself so, he was not an expert but if he din't know something went away and found out about it, which is fine by me. My current practice I told them I was IGT and requested blood checks, even so I was treated like I didn't know what was going on.

Diabetes care is overseen by the practice nurse who does everything. There are times, when even if I don't know the science behind it, I have known more about diabetes than her. But if she doesn't know something she blusters around it. I have so little trust in her I have sneaked in a mini - review with the doctor when I was there about something else.

But in general the practice's diabetes care is overseen by the nurse and there is no choice, no referral to anybody else. Considering how compex diabetes is I don't see how 1 nurse who is not a specialist can treat all the diabetics in the practice. (as well as all the asmatics, people giving up smoking etc) But she did give me testing strips, though I had to fight for them, being told we 'don't like giving them to T2's'

She told me I must not low carb and sent me to the dietician who said the same thing and who, unlike Ally, did not treat me as an indivudal. But showed me the picture of a pre-printed 'ideal plate of food' in which I was told to eat (I think) 40% starchy carb and a piece of meat. She had no idea how to translate this for a vegetarian whose protein portion of the meal often also contains carbs.

I tried to stick to their advice and got hungrier and hungrier, put on weight and raised my BG. I was told I was not compliant and not looking after myself.

Until this site gave me the confidence to ignore them and go back to not eating any starchy carbs.

I am due to move area and so change doctors in the next 12 months, before I register with any practice I am going to ask how they treat their T2's.

Ally is one of the good guys the fact that she comes here and listens and interacts with us shows that. There are good guys out there and sometimes they come your way, but sometimes you just have to work to find them.
 
I'm not sure about being assertive regarding healthcare: I finally complained to my surgery about a receptionist who took every opportunity to make things difficult for me. (Whether she does this to others or not, I couldn't say - but she consistently behaves rudely and uncooperatively to me.) Nothing changed, except when I would go to the surgery, she would step out of the front office and someone else would come to the desk - fair enough. But now, when I call to arrange to pick up prescription papers or bloodtest authorizations, she is always the one who says 'Doctor says you don't need that at this time' and 'Doctor reviewed your last results and does not believe that's necessary any longer.' Great. So now what do I do?

'They say' arrangements are being put in place so that people will be able to move from one surgery to another. I haven't tried doing so - but I'm very nearly at the point where I will. I suspect my current surgery will be just as glad to see the back of me (!) as I will be to try to start over with a new office. But it doesn't do a lot for my confidence or my self-care. :-(
 
Surely a Dr withholding treatment for a T1 could be actionable using human rights legislation?

I have been lucky for the most part and where I found a Dr / Practice that didnt work with me I simply moved.
I think there has to be a good degree of trust between all members of the care team and if the qualified professionals hold you to ransom I think it all goes out the window and it's time to move on.
 
My experience has been mostly good, but I find the worst ones to deal with are the 'front of house' staff, like the receptionists and staff nurses. today at the hospital for example I checked in and was waiting an hour, I think they forgot to put me in the queue for clinic, when I went and enquired I was dealt with like I was inconveniencing them, I did ask nicely how many people were before me in the queue (wanted to check I was actually in the queue) got a harrumph from the nurse, next thing I know though I am whizzed in to see the consultant and after that I was taken a lot more seriously! But the nurse who harrumphed never came and saw me to explain what was going on, just left someone else to come and fetch me! Maybe she didn't want to get egg on her face as I had been left waiting for so long and clearly forgotten about. The specialist nurses and consultants were great, I think the higher up you go the more important they feel so they don't need to look down on you to make themselves feel more important. But that's not the first time I've been left waiting and waiting because someone has made a c*** - up when checking me in and it's SOOOOO frustrating! I don't mind spending my time in hospitals when I am actually seeing someone but waiting in reception areas for ages, nooooooo
 
My doctor isn't in the UK. The one I left there was ACE* compared with what I have now. The system here in Sweden isn't nearly as good..(at least the places I go to). I was told after being diagnosed T2 that I had to go to my local Dr's and not stay on at the clinic. I was confused since the clinic seemed to be seeing lots of other diabetics. However I dutifully went to my local Dr. Five years down the road I have seen a specialist chiropodist once and she made a hell of a mess with my toenails. I vowed never to go again until I am so old I cannot see what I am doing and have to go someplace. Regarding medication.. I can email my Dr for whatever I want..and he mostly always gives it to me. Having said that, I recently asked for the *time release Metformin* and also at the same time about whether there was anything against me taking Quercetin and Phytosterols or Q10. Saying at the time of asking him, 'I believe we are supposed to 'ask the Dr' before taking any over the counter vitamins etc.. so is it ok?' I have to this day received no answer, even though I found out that regarding the time release Metformin the Dr can request the state that the patient needs to try this, before moving on to another form of medication. All this due to Metformin being hard on the stomach and me having to have treatment for stomach issues.

I am now feeling lost. I was at a Diabetes convention here and was recommended to ask my Dr for a 'remiss' (letter) so I can attend the clinic.. guess where??! Yep.. the place where I was first told I couldn't stay. The place where they have proper clinic for feet and everything else.

I later went to another clinic in town and asked if I could be put on their list. After seeing the Dr, I was told to 'take one more pill' and that 'Metformin has been discovered to protect and in some cases even cure Cancer' and that was that. He listened to me carefully and said.. 'do whatever diet you like that works, there are so many out there'. With that, he said goodbye and that he would see me next time. I felt like a machine.. with a numberplate saying 'diabetic T2' and that was that. He was not hopeful or encouraging that I could someday with exercise and diet maybe even lower my meds.

I went back to my old local Dr! At least he was optimistic and din't make me feel everything I did would be hopeless.

I reverted to now doing what *I* the patient feel is best.. as well as reading as much as I can bear on the topic of Diabetes and it's effects and aftermaths etc...I read books and internet and have never had a higher HBA1C than the old 4.2 4.7 ... now it's creeping slowly up to 5.2 5.7 but still well within the guidlines. I wish to heaven I could find a progressive clinic that treats us like human beings, that talks to us less like 'broken mentally substandard drones' who don't know what's best for themselves. When diagnosed, I was told 'don't read the internet, it's all rubbish' just take your medicines and eat your carb rich diet and exercise and live your life ..you *will*get worse because this is a degenertaive disease, and some day you will be on insulin (even though my problem is cell resistance, and not pancreatic breakdown)'

Depressing as it is,I inform myself, exercise at the gym boxing weight training and 40 mins stamina x3 a week and have also bought a Wii so I can get mobile while at home also. I take my own bp and am satisfied it is within sensible limits considering my age 58. My cholesterol according to my Dr is pretty good, though I still want to lower it anyway and am taking the sterols..NOT statins.

Cut a long story short .. Diabetics need to be responsible for their own health care.. and their medical teams should be there to support them and encourage them and guide them and give them hope and encouraging people to get as much information as possible puts the responsability back where it belongs..on us! What we put in our brains bodies and mouths is what will save us or not.. and the rest....well... medicine at the end of the day.. is just a job like any other. Don't get too close to the patient.. get them in and out as fast as possible. And that (as they say)is that! dr puts on his/her coat.. nurses who are NON diabetic..go home to their familes.. and we try to understand and work our way through this very complicated disease. DIABETES UK and this website have saved me, my sanity and given me hope and a clear view to what others are experiencing. IT's HARD but you can do better than they say..IF you try and have hope and push for what you need. Right now I am building courage up to change Dr's and Clinic again.. !!

I do understand how you guys feel.

Boy do I miss my Dr in UK:
 
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