Negativity

[Delphinum]

Hello!

I'm getting on my little soapbox here as I've yet again received another negative letter from my diabetes clinic. :evil:

I'm fed up of receiving emails from this site telling me all the negative things about my diabetes too - I only keep subscribing to see what topics are coming up on these forums. The doctors are always doing it, as are DSNs. I know the bad things about having my diabetes - let's face it, there aren't many positives - but it's no wonder there's a prevalence for depression for those with the condition when we're constantly being told we're going to be dead 20 years early, blind and footless with kidney failure and heart disease.

Some of us are intelligent enough to look after ourselves without being haranged or bullied about looking after ourselves. Some of us are actually demotivated by the way we're spoken to - I know I am! "If you don't look after yourself, x/y/z will happen..." Okay, it's been 18 years now, I get the message and since I'm actually pretty good with my diabetes, you're preaching to the choir. I'm not suddenly going to start having Lucozade for breakfast and wine for lunch! I've only had one neuropathy 'scare' in that I couldn't feel a stabby thing in my foot on one appointment but it was fine on the next appointment when the weather warmed up. That's the most that's ever been bad about my diabetes.

I'm sure there are others who have went far longer with the condition and are in good health too. Why can we not hear their stories more often? It would balance things out and perhaps make me feel less depressed about the future and how long I have left until I'm blind, footless with kidney failure and heart disease. :wink:

</rant>

 

[hanadr]

I too get fed up with negativity. the medics seem to have it doubly. 1 They think everyone will deteriorate
2 they might lose their power over their patients.
I deal with it by ignoring most of them and keeping my G down to NORMAL as much of the time as i can, by my own methods [VERY LOW CARB]
Hana

 

[coco4]

Hi it was so refreshing to read this a few moments ago. I was diagnosed Type 1 last June 2011 at the ripe old age of 55 years :shock: . My average meter readings are good and my HbA1c results have always been in my target range. My husband, GP and DSN always tell me how well I am doing and for a little while I feel good about myself and am positive about the future, but then I read all the "horror" stories and somehow I become illogical and depressed and this cancels out all my good thoughts and I'm then on a downward spiral and suddenly believe that I will become blind and suffer all the bad things even though I am looking after myself. So just wanted to say a big thank you Delphinium :thumbup:

 

[CarbsRok]

Well if you don't want the emails from here then just unsubscribe from them, That's that problem solved. :lol:
As to your clinic staff, just ask them if they have anything positive to say about diabetes. If not then explain in simple words that you live with the condition and you really do not want depression added to the mix after listening to the cr*p metered out by the clinic staff thank you very much.

 

[GraceK]

Get a Sagittarian friend!

I have a good friend who's Sagittarian. Doesn't matter how bad a situation is, he always looks on the bright side. Not in an annoying way, or a foolhardy way, he just instinctively KNOWS how to IGNORE negativity. If ever I'm on a downer and start yakking about health problems, he completely ignores me, talks over me and changes the subject. At first I used to think he was rude and ignorant, but then I realised he really instinctively understands that dwelling on the c**p only makes the c**p stronger and the good stuff weaker.

He doesn't dismiss my problems, he just refuses to let me dwell on them.

 

[Unbeliever]

o me the wors thing about diabetes has always been that I have to have contact with practice diabetes nurses. Since diagnosis I have been a patient at two practices each with a diabetes "specialist " nurse with a deputy who helped out occasionally and had been "diabetes trained".

They have all been a pain in the backside. Talk about "A little learning is a dangerous hing!. They know very little and although mostly aware of that they try to make up for it by patronising patients and making a fuss about minor maytters o make themselves important.

Some are almost sadistic in trying to worry patients . They do indeed enjoy the power. One of the Practices had a specialist diabetes Dr who was not much better. Shaking his head gloomily and sighing! The Nurse I saw who was training as a Nurse pracictiioner at my first meeing with her looked at me sadly and said "It is serious but..... And refused to finishe the sentence!
I thought i was at deah's door between the pair of them.

Now i think that I depressed THEM because I wasn't overweight , followed a GI diet and didn't drink or smoke. They didn't know what o do with me!

Attitude makes such a diffference. For the past 5 years I have been reated in the opthalmology dept of the hospital. It has been a struggkle for all concerned and he outlook is not good. But I know my consultant will emsure that everything hat can be done is done. I have had quite a lot of experience working with blind adults and children and unlike some people I have never found that
this dreadful handicap to be any less horrific. Blind people manage because hey must and mahy do wonderful things bu that is the human spirit . There are no compensaions in losing one's sight.

In spite of all that I dread a visit to the diabetes nurse for a rouine check far more han a visit o hospital or even a surgical procedure
there.

Those people are trying to help me . The diabetes nurse is not. It is obviously in her interests to try to intimidate and frighten me.

I have reduced my HBA1C by several points without any input from her, indeed my distrust of her saved me from being given a potenially damaging drug.

The aitude of those HCPs you see about your diabees is hugeluy influential . The sort of negativity experienced by many of us should be addressed .

 

[GraceK]

o me the wors thing about diabetes has always been that I have to have contact with practice diabetes nurses. Since diagnosis I have been a patient at two practices each with a diabetes "specialist " nurse with a deputy who helped out occasionally and had been "diabetes trained".

They have all been a pain in the backside. Talk about "A little learning is a dangerous hing!. .

As my mother used to say when faced with an adversary "God Bless us and save us from ...(whoever it was)" and I say "God Bless us and save us from Practise Nurses who've 'been on a course' about diabetes and who think a patronising attitude in a navy blue uniform actually MEANS something to me!"

I don't dread seeing my DN, she's the very same practice nurse who told me to go home and 'suck a lozenge' because she couldn't hear anything when I complained of pain in my right lung and tightness in my chest. Two days and several throat lozenges later I drove myself to the local walk in centre where I was immediately placed in a wheelchair, put on oxygen and nebs and paramedics were called followed by an ambulance which whisked me off to hospital where they found without any trouble at all that I had pneumonia. I'm not the only patient who grumbles about her in the waiting room so I know I'm not being unfair or unkind - she's patronising and dismissive and I hear that a lot about some practice nurses whose power to prescribe has gone to their heads. Or perhaps they're afraid of prescribing which is why they tell me to suck a lozenge when what I really need is a good strong antibiotic to kill the bugs!

No, I don't dread going to see her, but I do dislike having to see her because I have no confidence in her at all and I hope my GP practice replaces her ASAP with someone with a deeper knowledge and understanding of and interest in patients and a bit less of the 'I'm the one wearing a uniform here', so I tell YOU what to DO and YOU don't ARGUE' attitude going on. That gets right up my nose. :wink:

 

[shop]

I agree that unnessesary negativity is very demoralising and doesn't help. Especially when it comes from HCPs.

I would say however that the posts on here that some may see as negative may be invaluable to others who are not as fortunate as those of us not facing complications. I am sure that should I ever be in the position to be faced with neuropathy, retinopathy or kidney disease etc that I would be grateful to be able to get reassurance and at least, accurate information and sympathy from somone who really does undertstand.

I have been keeping a quiet and intermittent eye on the thread about somone going through a scary time with retinopathy and just because I am not suffering with it myself doesn't mean that I can't appreciate the support and kindness show to those who are.

I am not the sort of person who thinks that if it doesnt affect me then I dont want to know.

And as Carbsrock says just dont read them if you dont want to.

Lucy xxx

 

[catherinecherub]

It is a bit like watching the News on TV. Not much good but plenty of bad. That doesn't mean that people are not interested and those that aren't can always switch off.

There are many complications that can occur with all types of diabetes and if we are all mollycoddled into believing that nothing can ever happen to us then it is defeating the object. By explaining possible side effects of medication and complications with real life stories as we do on the forum then I personally think it is education for all of us. We may not be able to understand how down and scared a person feels with retinopathy, peripheral neuropathy, depression and the like if we are not suffering ourselves, but we all wish the best outcome for that person surely?

If HCP's have a negative attitude about everything then just ask them to lighten up and tell you some success stories for a change please. If everyone who feels upset by their scare stories was to tell them this then they might rethink their strategies for getting people to take diabetes seriously.

I don't think that people realize that we are in the minority here when it comes to being proactive as there are plenty of people with diabetes who sit back, take little interest in it and wait for the inevitable to happen. It's another case of "one size does not fit all" in our responses to this chronic condition.

 

[lucylocket61]

My experience initially was different.

My HCP's and doctor refer to me as have Mild Diabetes, or A Touch of Diabetes...and not to worry, take the pills, eat the carbs, keep off the Mars Bars and all will be well. Not serious at all.

Yes, they say, nodding wisely...it is progressive and I will end up with complications and on insulin, but not to worry, there are tablets and meds i can take for that, its not like I am going to die of this....and look at how well amputees do these days (my mother was an amputee) I asked subsequently about this and was told they have a policy of optimism and not scaring the patients.

I am so glad I typed the wrong web site search into Google and found you lot. Or they would have been right.

 

[Unbeliever]

The reason I dread having an appointment with my DN is because I have no confidence whatsever in her . My HBAICs are constantly improving due to rejecting her advice and she resents the fact that my consultant opthalmologist arranged for me to seee people in the diabetes clinic in the hospital "over her head"
She therefore feels she has something to prove and rather han feeling she is helping me she is trying to cach me ou in some way all the time.

I have to be on the ball because the Gps leave it all to her but to date she has tried to put me on a drug which should not be used with my macular oedema and she was responsible for my hacving to increase my bp medication unnecessarily which led to a major bleed in my eye.

Now she has a campaign to discredit my home BP readings although the Drs accep them and he hospital confirm that hey are fine when I go there.

I dread going to see my DN because I am afraid of , one day, losing my temper completely and thus putting myself in the wrong.

 

[louisewomble]

Well why carry on seeing her then?
Make a complaint - she has already given you drugs that have caused you harm - do you honestly want to put your health in her hands again?

 

[Defren]

I can hand on heart say I have not had any negativity at all. Yes, I was sideswiped and scared stiff at diagnosis, but with a fantastic GP and DSN along with a super fantastic family and friends network, never has any thing got to me. Guess I'm one of the lucky ones.

 

[Unbeliever]

Well why carry on seeing her then?
Make a complaint - she has already given you drugs that have caused you harm - do you honestly want to put your health in her hands again?

Its not that simple - she has to involve a p and she has a tame one who just signs anything. I have complained - about various matters- not to the Practice manager who would just fob me off - or try to but to the senior partner - he didn't want to get involved either at fisrst but has verified a few of he hings I told him and has now made a point of addressing them.

Once I realised what had happened over the BP medication I certainly did not put my health in her hands again. I was a very new patient at the Practice at the time and it took a whle to realise what was going on and to actually form any kind of relationship with any of the GPs because I only ever go there about my diabetes.

I am not sure I ever put my health in anyone's hands . It is necessary for me o see the nurse for my 6monthly checks but I have never asked her advice and would never dream of so doing. Because the Nurse sa re so feeble and the GPs won't speak to patiens about diabetes my ophalmologist referred me to the Hospital Diabetes Clinic. Although I have since been dischargedbecause my levels soon dropped when I was given proper advice I can contact hem should I have any queries.

Unfortunately there seem o be more poor Practice DSNs than good ones and it is impossible to judge in advance when changing Practices. They are not now openly rude and patronising as i have made my feelings very clear - but they are resentful of having what they see as their "authority " challenged in various ways. Basically it is not possible for a leopard to change its spots.
It is almost impossble for me to change my GP at present and so I just have to put up wih all the silliness and attempts at point scoring. At least it is now only once a year.

Complaints can be very successful , of course, but there are some things which can't be cred so must be endured.

 

[X-entricity]

If you can do something positive to make things better ,then do it. If you can't, ignore them, as just worrying about things changes nothing and makes you ill. Easy said but it is my maxim in life.

 

[Scoop4]

I have often wondered over the years if I have a bad diabetic nurse or not. I think the problems I have with her are that the ideas she has about my condition and treatment are just not the same as mine. I have banged heads with her and have ranted to my family about the way she has treated me and what she suggest I do about any problems I am having but after 17 years of living with my condition and 44 years of understanding how my body works I think I should be the one who decides how to go forward with my treatment. I think diabetic should be given the options and let them decide what to do instead of puzzled looks when I suggest something or the way she says "I've never heard of that happening before" when I tell her about some experience I have had. The thing is every diabetic is different and we should be treated like individuals and they should take our experience on board the DSN's should use us to expand their knowledge I think it would help all diabetics. I have learnt a lot from these forums and good or bad experiences I feel better when I read someone has had the same experience as me or someone has a problem they want to share. DSN dont understand diabetes to us is not just a medical condition to us it is very personal and part of us.

 

[tigger]

I have had type 1 for 29 years and have encountered various negativity and wrong diagnoses of retinopathy (2) over the years. My motto now for any talk about complications is "very nice but that's based on statistics and you know that they can't guarantee what will happen to me as an individual not a statistic because for every statistic of this is how it works there will always be exceptions to that rule" (this conversation was on the basis of an hba1c of 7.2 so hardly the highest in the clinic). It is depressing though.

I do not see the point of listening to people who have no knowledge and are misinformed. I take the line put forward in an IDDT magazine years ago which is I am the expert as I live with this 24/7 and have been doing this for longer than most have been practicing medicine. Any doctor who starts by recognising this (and a number do nowadays) I will listen to and consider their recommendations. Any who do not I give the same respect they give me. I have always been seen in hospitals and would never consider putting my care under a GP or worse a nurse. For those who are having awful experiences (and most sound pretty bad) there is always an option of changing to GP to one who will refer you to hospital if the current one is so bad.

And any junior registrar who has never heard of animal insulin is obviously not worth the time of day either. I may look young (I'm 32) but that doesn't mean you can patronise me! Also I do value being able to talk to people who have had complications on these forums as it's reassuring to know life does go on. It's very hard living with diabetes and very few can manage perfection all the time. Having a doctor who recognises this is key. (Apparently current nhs policy is changing to recognise this as I didn't get told off for a hba1c of 8% a year after 3 years of intensive control trying to conceive and then having and feeding twins. I was told they were doing "individual targets" now.)

 

[diabetes51]

Hey folks, this is nothing new, when I developed diabetes over 50 years ago, things were just the same. About 6 months after developing Type 1 diabetes and having a great paediatrician, I was sent for, with my parents, to see my GP. I was told by the GP in no uncertain terms that if I was not a "good girl", and didn't do as I was told I would be blind, have legs cut off or be dead within 20 years. So I wnt straight to the hospital and saw my paediatrician, kids could knock on his door whenever they needed to. He went ballistic and I think he must have sorted the GP out because I never saw him again.

My paediatrician taught my parents and I that the best way to live a long, full and active life was for me to learn to take responsibility of my diabetes as soon as possible. I have never forgotten that lesson. NO-ONE tells me what to do or puts me down.

If a GP, diabetes nurse or hospital staff are continually putting you down or making you feel bad about yopurself, then write a letter of complaint to the complaints officer. There should be one at every GPs surgery and hospital. Just address the letter to the complaints officer, as these people have no right to do this. Nice guidelines emphasise a positive approach, yes there are complications which some people develop, but after over 50 years of diabetes I have no heart problems, no strokes, kidneys are fine, eyesight fine - my main complaint is bilateral frozen shoulder.

I recently changed GPs and came across one of those trained in the 1980s mould. Training then said be firm with diabetics, make them obedient etc and they often begin sentences with words such as "all you have to do is" or the tone says that. My new GP, when I complained of hypoglycaemic unawareness said "all you have to do is lower your insulin" , oh and if I lost weight my hypoglycaemic unawareness would disappear. No plan of care as dictated by NICE, no referral to knowledgeable people that could help, just lower your insulin and eat less - what a load of ignorant rot!!!!!!! . So I wrote a letter of complaint, how dare a GP with such limited and poor 1980s knowledge give such advice to a Type 1 diabetic, and I am now seeing people with up to date knowledge, skills and attitude.

No GP can push you off their lists for making a complaint, they have to take appropriate action to resolve your concerns. It is about time these bullies that call themselves diabetes specialists updated themselves - particularly where modern approaches to care are concerned :evil: .

 

[Superchip]

Well ! let's see,

we have a problem here,

Health = theirs not yours
Care = If it suits them
Professional = same as expert ,i.e Ex = has been, spert = a drip under pressure !

Just take the scripts and choose for yourself which to take, HCP's are rather in doubt now,

I have managed to train up to modern thinking regards Diabetes my so-called HCP's, they don't like it because they need to obey the NHS whip ! - TOUGH !

Keep up the good fight everybody, we will be victorious !

Superchip

 

[Scoop4]

Have got my diabetic check on 8/10 I was not looking forward to the talking down from my nurse but after what I have read I am hoping not to have such a bad time. I wouldn't say I am passive when I attend my hospital appointments but fight can be tiring. Then after when I get the letter from my consultant with highlights of what was disgussed with all the comments I made about my treatment noted in quotes as if I was being sarcastic. Never mind taking my husband with me for support this time.