”I don’t trust doctors now” - Was it possible f... - Thyroid UK

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”I don’t trust doctors now” - Was it possible for you to get over a very bad experience and trust the medical profession again?

HowNowWhatNow profile image
100 Replies

This part of a Twitter thread about poor medical communication / diagnosis resulting in lack of trust prompted my question:

twitter.com/hmelone/status/...

The remark in quote marks is taken from a person writing in this thread who was noted down as having Hashimoto’s for years in their medical record, but their own GP didn’t tell them their notes said this / that they had it.

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HowNowWhatNow profile image
HowNowWhatNow
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100 Replies
Zazbag profile image
Zazbag

I don't trust doctors at all anymore.

Localhero profile image
Localhero in reply to Zazbag

Same here.

humanbean profile image
humanbean

I don't trust doctors at all. In fact I'd go so far as to say that at times I have hated them.

HowNowWhatNow profile image
HowNowWhatNow in reply to humanbean

Am so sorry.

Is there a situation you can imagine where your mind could be changed and you could trust doctors again?

Do you know / see any doctor who you trust?

I wonder whether different branches of medicine research whether / how many of their consultants are trusted, compared to those in other fields.

humanbean profile image
humanbean in reply to HowNowWhatNow

Is there a situation you can imagine where your mind could be changed and you could trust doctors again?

No. I'm in my 60s and I've had problems with doctors going back almost 50 years. Not only have I had problems myself, but I've also witnessed problems for family members and friends where the treatment (or usually the lack of it) has been tantamount to torture.

Do you know / see any doctor who you trust?

No. I will see doctors if I have a visible problem but I avoid doctors completely for anything invisible. And of course it is much more common to have health problems which are invisible rather than visible.

Rosebud1955 profile image
Rosebud1955 in reply to humanbean

Ditto

Kowbie profile image
Kowbie in reply to humanbean

Well said

jade_s profile image
jade_s

No unfortunately & I doubt I ever will. Actually there a few limited cases where I do trust a bit: surgeons (i've had several operations & they all did their jobs very well. I guess if you can literally see the problem then there's not much to argue about) and my one functional doc who very much respects symptoms. There were also a couple of pulmonologists who have been helpful, but again they could measure and see the problem & took symptoms seriously. I also have 1 gastro that I trust, again because he took symptoms seriously & investigated thoroughly and looked at the whole picture. I guess it just depends on their attitude but in general I go in distrusting them until and unless they prove themselves trustworthy. I get copies of everything and double check everything they say. Of the specialists I've seen like endos, neurologists, GI docs, and GPs, a big fat NO.

Rosebud1955 profile image
Rosebud1955 in reply to jade_s

Ditto

Levojunkie profile image
Levojunkie

Hello Georgeor, thank you for your question which is a fundamentally crucial one. Like Zazbag and humanbean I have absolutely no trust in doctors. I have developed profound fear of them.

Rosebud1955 profile image
Rosebud1955 in reply to Levojunkie

So true!! I have had very bad experiences, would never trust them again.

greygoose profile image
greygoose

🤣🤣🤣 Read my profile!

And that is just the tip of the iceberg. Just covering my thyroid journey. It doesn't take into consideration the first problem I had with a doctor when I was only four years old, and the beginning of my distrust and dislike of doctors, nor my experience with other ailments. And it doesn't go into all I've witnessed with other members of my family. And, don't get me started on experiences with my own children right from pregnancy, through childhood, 'til now. The two years struggle I had with my youngest to find out what was wrong with his eyes, being insulted and sneered at by every doctor we saw. The list goes on and on and on. And, I think I can safely say that with just one notable exception, every doctor I have seen has made me worse in some way, rather than better.

Trust them? I avoid them like the plague! I'd put them all up against the wall and shoot them!

Levojunkie profile image
Levojunkie in reply to greygoose

You've reminded me of a UK healthcare survey that I came across in the late 90s. Patients's anonymous evaluations of their doctors. 50% said they'd like to murder them!! Exact figure and verbatim. This survey shocked me so much that I've never forgotten these details. I think I thought that my experiences were just something that happened to me. Hardly any wonder that GPs are leaving in droves. Perhaps they see what's coming ....

greygoose profile image
greygoose in reply to Levojunkie

Well, they've only got themselves to blame. Quite apart from all the misdiagnoses and mistakes, they shouldn't gaslight patients, lie to them, laugh at them, shout at them, sneer, mock or ignore them. When they start respecting patients, maybe patients will start respecting them.

Levojunkie profile image
Levojunkie in reply to greygoose

I thoroughly agree with you. They have created this situation where patients are either very cowed and craven or even fearful of them, and the rest are totally sick and tired of them. Such a pity, they trashed our goodwill, support and trust. Years ago I had a GP for a tenant. We used to sit with a cuppa and she'd tell me about the ways that her colleagues would disrespect their patients and eg all the disparaging abbreviations on patients' notes. Opened my eyes back then. My considered assessment is that they're in a bubble of their own, quite disconnected from society and reality.

greygoose profile image
greygoose in reply to Levojunkie

Oh, I totally agree! They have no idea what the real world is like. I've known a few doctors socially, and they were all abominable people! I used to think thank god they're not my doctor! lol Horrible people. They despise their patients and, for the most part, have no idea what real suffering is. And even those I've come across that did have some sort of medical complaint, didn't have any more compassion for their patients, whom they believed were all hypochondriacs and not really sick, like them.

Levojunkie profile image
Levojunkie in reply to greygoose

Yes, I can well imagine that the vast majority are obnoxious in private life too. The tenant I had was an anomaly, a dyed in the wool socialist and working class, she knew what real life is like. I did have a great locum GP who not only sympathised but empathised with my situation (too long and complex for here). Outright he said that most GPs hadn't a clue what life was like for most people because they'rd all been brought up in 'leafy green enclaves' where there were no social problems. He was Asian and said that he'd been raised on a council sink estate and his family suffered racist attacks - and no help from the police - almost every night, as a boy he'd been terrified to go to bed every night in case of more arson attacks or smashed windows etc. Anyway, he set out to discover the cause of my sx and promised to get back to me asap. Took him 2 months. He called and asked if he could come to see me. He was at my house for more than 2 hours. He'd had a hell of a job getting hold of test/scan results, some were even forbidden to him. We discussed his findings and he confirmed my initial diagnosis. The hospital had misdiagnosed and so had usual GP. Instead of fessing up, they gaslit me for years (their hidden notes alluded to my legal qualifications so it was obvious that they were covertly fending off litigation from early on whilst telling me it was all in my mind...talk about abuse...) This lovely, human GP actually said: "I'm so sorry. The NHS has shafted you", he said it as kindly as he could but he was disgusted as he briefly told me about his experience of similar. How to destroy a productive person's life.... since then, I've met so many other people they've done it to. In fact, that's how I morphed my career into that of a researcher and writer. The things I've found out are the stuff of Kafkaesque-Orwellian-gulag nightmares.

I've come across a few other decent doctors who also deserve praise, but only a few in a whole lifetime. Mostly though, they're self-serving shysters and that's putting it mildly .

If there's one thing I could insist that every patient fully understood, and particularly women: 99.98% of all symptoms are physical, have physical, environmental and/or sociological roots and deserve proper investigation. There is no such thing as 'psychosomatic' or all-in-the-mind (the various psychoses and schizophrenia conditions are physical anomalies of the brain). GPs spend less time than Freud learning about psychology/mental health (and he spent all of 19 weeks). They are clueless IMHO. 15 years ago the medical scientists knew that 'anti-depressants' don't do what they advertise them as doing. GPs have known that all this time. But still try to prescribe them - I guess it's a cheap, easy way to get patients out of the surgery. I could write mountains about all this. In 100 yrs time people will look back on this 'psychosomatic' era of doctor abuse with horror. [I spent 7 years in academia studying and researching psychology and mh. I am painfully aware of how very much more there is to learn. ]

greygoose profile image
greygoose in reply to Levojunkie

Levojunkie, you're a woman after my own heart! I don't believe in 'psychosomatic' illnesses, either. They just make life easier for lazy, ignorant doctors. I firmly believe that - as you say - 99.98% of all symptoms are physical, have physical, environmental and/or sociological roots and deserve proper investigation. And I don't believe in hypochondria. If someone thinks there's something wrong with them, then there is. It's just that doctors can't be bothered to find out what it is. x

HowNowWhatNow profile image
HowNowWhatNow in reply to greygoose

And the results of that new huge study into depression - reported on this summer - back you up, both of you.

Depression isn’t a disease of low serotonin levels, and clinical depression is quite different to how it is portrayed in much of the literature.

greygoose profile image
greygoose in reply to HowNowWhatNow

Yup. I remember that.

Kowbie profile image
Kowbie in reply to greygoose

You do make me laugh haha

greygoose profile image
greygoose in reply to Kowbie

Good! :D

HowNowWhatNow profile image
HowNowWhatNow in reply to greygoose

Grey Goose - why was it such a struggle to find out the cause of your sons’ eye problem?

I had some dealings with eye doctors for my son this year - optician, orthoptist and neuro-opthalmologist and another. When I asked the orthoptist if he was a doctor (I didn’t know what to tell my son to call him) he nearly exploded with all the force of a strange reverse snobbery. He thought my question was demeaning when I just literally didn’t know how to address him. The eye world seemed weirdly exclusive - unable to describe the decisions they were making / what they were excluding / the jargon they used. I loved all the kit and pieces of machinery, though.

greygoose profile image
greygoose in reply to HowNowWhatNow

Well, for one thing, it was difficult to find the parasites in his eyelashes. The bitch doctor that finally did diagnose him said she'd been practicing for thirty years and never come across such a thing before. She had to drag a pile of books out to look them up to verify what she'd seen. Now, I don't know if these parasites are really rare - after all, he must have caught them from somewhere - or if it's a bit like Central Hypo, they've labeled it rare so never look for it! You know how it is.

Secondly, right from the outset, my son got labeled a 'naughty' child who was telling fibs to get out of going to school. Quite how they thought he made his eyes red and weepy, If he was lying, I just don't know. But, I heard it over and over again: he's just trying to get out of school! But, he was sitting in the front row and still couldn't see the board! And glasses didn't help. But, you know what it's like, give a dog a bad name... Like hypos get labeled hypochondriacs. There's a lot of similarity in our cases and his.

HowNowWhatNow profile image
HowNowWhatNow in reply to greygoose

Family doctors are very bad statisticians.

They think that if a condition / disease is very statistically unlikely, ie. presents in a very small proportion of the total population, that when a patient has all of the (rare) symptoms and no other obvious explanation exists then that person has to be in the 99.999%.

The statistical likelihood of the average person having parasites in their eyelashes is very different to the chances of your son - with all of the symptoms and no other easy explanation for this condition - having the condition.

If a child has an ocular condition that defies easy medical explanation, they are already in the 0.0005% of children but doctors don’t like going to the “file under unusual” section of the textbook for some reason.

HowNowWhatNow profile image
HowNowWhatNow in reply to greygoose

Your poor son. It can’t have been nice for him to be accused of making stuff up, while still a child at school.

greygoose profile image
greygoose in reply to HowNowWhatNow

No, it wasn't. It totally changed his attitude to school. He dropped out when he was 16. But, thank god, he's ok now, and a father himself! :)

I would imagine that doctors don't want to consider the unusual because it makes too much work for them. They all appear to be lazy, as well as useless! They want everything to be easy, and when it isn't, they blame the patient. One way or another. They just can't be bothered!

arTistapple profile image
arTistapple

I have come to the conclusion that doctors are not to be trusted implicitly. Some of the time they are untrustworthy. Some of the time they are incompetent. Some of the time no doubt they are overwhelmed. My feeling now is that they are (mostly) just doing a job, just like a plumber or an electrician or a roofer. I don’t trust new tradesmen and I feel just the same about doctors. Unfortunately doctors deal in issues most important to us: our bodies and minds, our children's bodies and minds, our grandchildren, our wider family etc etc. Whilst I have always had an interest in ‘health’, I had no idea that I would have to put so much work into doing someone else’s JOB!

seniorita profile image
seniorita

Oh wow! At last I have come across like minded people. I'm so tired of reading comments like "the doctor knows best" . My 50+ years of being told half-truths or outright lies have caught up with me. No trust or confidence in the medical profession left.

waveylines profile image
waveylines

The problem with the medical profession is that there are a few gems out there who really know their stuff and care.............however the vast majority are ignorant, dismissive, incapable of conducting a proper assessment and frankly many don't care. Ive had too many bad experiences over the years that I most certainly dont trust them!! All the big ilnesses in my life I have self diagnosed and had to lead the GP to what they should do, massaging their egos grovelling at times to get the job done. Why on earth would I trust them? However equally those rare gems out there have saved my life and to them Im eternally grateful. I just wish they were the norm not the exception! Trust has to be earnt in my book so no I most certainly do not trust doctors.....they have to prove themselves...... & sadly they rarely do.

Starling87 profile image
Starling87

On an average- NO. I trust GP's with simple ailments with a straightforward solutions, such as chest infections or ingrown toe nails. But anything more complicated than that, they have proven to me is too much to handle and they don't have the presence nor time to care or treat people properly. I have been laughed at, been condescended to, been sighed at..

It got a bit dark a few years ago when I finally gave up ("your results are fine, we're just going to stick you on more antidepressants, it's all just in your head")

What happened after is a long story, but thanks to medical professionals in another country and finding this forum, I'm now on a better dose and I finally have hope again.

Last time I went to hospital for an unrelated surgery, they took tests and lowered my dose and I've had to fight for 2 years to get it raised again. My results still aren't perfect and my symptoms are acting up again but I'm now too anxious and too tired to have another battle with the GP's. To start the merry go round "It's all in your head" again.

It feels terrible to not being able to trust them. And it's awful how widespread it is, especially with thyroid and women's issues. So many wrongful diagnoses but no one takes responsibility and just praises the system instead...

AmberBee profile image
AmberBee in reply to Starling87

Merry go round is what i call it but without the merry, I see some doctors who mean well but most have no idea what they are treating, others do but their hands are tied.

Sparklyjenson profile image
Sparklyjenson

Hi

It’s easier for me to take the position that doctors have good intentions. I don’t want to waste any of my energy getting angry.

So, I trust that the vast majority of doctors are doing what they have been taught (things move on fast) and what they are ‘allowed’ to do within their medical commissioning group parameters (cost conscious). I trust that what they do will work for a proportion of people. I am also supremely grateful with the care my daughter and dad received in hospital with life threatening emergencies.

Unfortunately doing what they’ve been taught, what they are allowed to do and what works for lots of people isn’t always good enough. We have had too many experiences in my family where the advice and diagnosis was wrong or missing, on occasion with dire consequences.

I could get angry (been there) or feel hopeless (also been there), but it seems more productive somehow to change my expectations of their role. Even compared to a well intentioned doctor I have more time to focus on my problems than they would, there is more incentive for me to prioritise my problem over other peoples, and I know my body much better than any doctor ever will.

From experience I know it’s best to use their input as one persons perspective and not expect it to be the ‘right’ answer. I know to do my homework before speaking to them so that I can question prescription choices or diagnoses and offer suggestions about avenues worth exploring. I wish more people knew this. I hate to hear friends unquestioningly accepting the doctor’s views and still feeling unwell.

seniorita profile image
seniorita in reply to Sparklyjenson

I take your point but I get tired of trying to point them in the right direction, and getting blocked, AGAIN. Also they are the gatekeepers for going on to see a consultant, or a specific test, and being cost conscious you can rarely get that far.

humanbean profile image
humanbean in reply to seniorita

I could be wrong about this...

But I think using GPs as gatekeepers in health systems around the world is not that common. I'm sure if I wanted to see, say, a gastroenterologist, I could just phone one up and make an appointment in France and some other countries. But here in the UK, god forbid that a patient could have easy access to specialists.

But for some reason, in the UK, doctors have been put on a pedestal a mile high, and patients are considered to be untrustworthy scum.

Levojunkie profile image
Levojunkie in reply to humanbean

OMG, that's exactly how it is. Don't know how we got into this mess where the NHS is now like a religious cult and doctors are God on earth. Withholding access to consultants is so incredibly inefficient and dangerous for patients. Most W Europeans are aghast at this gatekeeping. It's why, where I used to live, one of my neighbours died unnecessarily (RIP Jim), his wife went blind in one eye, a young mum had a botched Csection the pain of which was ignored by GP as normal wimmen's pain and ended up with a colostomy bag, and my next door neighbour developed necrosis under her broken leg plaster despite her pleas to GP to send her to hospital (more over-sensitive wimmen's pain per GP). ALL necessitated very costly investigations and extensive tertiary care treatment. (I won't go into my own life-changing serious misdiagnosis by this GP- too painful to talk about).

Said GP, who came to be called [our area's] Dr Shipman, retired in his own time unblamed and on a big pension.

Thing is, how much is this incompetence and gatekeeping costing the country with extra expensive remedial treatment and avoidable iatrogenic costly disabilities?

humanbean profile image
humanbean in reply to Levojunkie

Yes I have a lot of anecdotes of disastrous medical treatment (or the lack of it) affecting various relatives and friends. And I've suffered from the lack too.

Lucycatlover profile image
Lucycatlover

GPs = General Pharmaceutical salesman. I think there was a time when they were trained to listen to their patients and use their skill and knowledge to heal. But now it’s all about blood tests and following the treatment protocol laid down by the higher authority. A tick box exercise to treat the masses as efficiently as possible with a total reliance on pharmaceutical products. There’s no scope or time to investigate the individual, to heal. Our ailments have to fall into defined conditions and respond to set prescriptions and if they don’t you get swept aside and abandoned by a system that can’t cope with the individual. It’s no wonder really that GPs are leaving the NHS in droves. Their training, albeit in pharmaceutical treatment, and good intent pushed aside by rules that don’t allow them to use their skill and judgment. By paperwork to cover an increasingly litigious population and satisfy the NHS behemoth. It’s a system that satisfies neither doctor nor patient and not even the accountant!

Levojunkie profile image
Levojunkie in reply to Lucycatlover

I believe that you're absolutely right in all you say. 'Tests, scans and tabs' as I think of it! Big trouble with that kwik-fix, one size fits all approach is that it's not efficient or cost-efficient in the long run, as you indicate . It amounts to sinking the ship for a ha'porth of tar. It creates avoidable chronic illness and disability which is paid for from e.g. DWP and Social Care budgets. It most certainly isn't economical to manage illness rather than seek to heal it. This is due to the hegemony of the pharma corps. This is their model. Even though it's almost (but not quite) the worst approach to medicine possible, it still doesn't excuse the dismissive, abusive ways in which too many doctors treat their patients. A few courageous and positive GPs are actually in there creating better ways to provide primary care - see e.g. theguardian.com/society/202.... Dr Laura Marshall-Andrews and collegues didn't accept the status quo and they're doing excellent, patient-centred things to change the system and to heal patients. What's stopping other GPs from getting off their lazy, privileged backsides and doing the same instead of venting their spleen on hapless patients...?

crabapple profile image
crabapple in reply to Levojunkie

Thank you. That was an interesting read.

grumpyold profile image
grumpyold

Loathe, loathe loathe them.

I have never had a positive experience with any of them apart from a surgeon who operated on my spine, so that's a bit different. The GP had originally stated "it's just a bit of back pain. You'll have to learn to live with it."

I would have been in a wheelchair since 1998 if I hadn't had that op.

None of my family ever had any help from the medical profession, in general, either.

Sadly, they are ALL dead now. Just a couple of examples of the many I could provide eg late diagnoses led to the deaths of my dad and 2 young cousins from cancer. My mum was clearly hypothyroid but was never diagnosed and I didn't have the knowledge when she was alive, to help her. I do now!

A gastroenterologist actually told me I had stage 4 cirrhosis, when I didn't at all. For 13 months I thought that I was life limited, when I wasn't. The same gastro denied that I had hereditary haemochromatosis.

I am 66 now and honestly, I could write a book about their gaslighting, mis-diagnoses, fobbing off, lying, god complex attitudes and just plain blunders!

I try to avoid them all now.

Levojunkie profile image
Levojunkie in reply to grumpyold

I could have written almost the same (including the wheelchair prospect due to misdiagnosed spinal injury in my 30s) but substituting other illnesses/conditions suffered by my family and me. 'Gaslighting, mis-diagnoses, god complex attitudes and just plain blunders' sums it up very well indeed. I can really picture it on the cover of your book!

grumpyold profile image
grumpyold in reply to Levojunkie

Aww, bless you. I'll be sure to send you a signed copy.❤️

Levojunkie profile image
Levojunkie in reply to grumpyold

👏👏👏❣️ I can't wait!

Auntyp62 profile image
Auntyp62

Wow what a lot of likeminded people. Thank goodness we no longer think doctors are gods. I have met with one in 70 years who I felt was willing to listen and work my way. I won’t use a doctor if I can help it, the last one I spoke to shouted down the phone at me NO NO NO you must not do that. When what I was doing was the only thing that worked! And as for thyroid stuff, they know nothing! For 50 years they yo-yo d my dose, I won’t let that happen now and maybe at times I am a little over medicated at least I am free of symptoms and living a good life and it always levels itself to top of range a few months later. Don’t get me started on telephone appointments, brother treated for indigestion, after going private face to face with examination he had a valve repaired in heart. Husband treated for gout as he had a history and it’s a broken ankle. All needed examination …….no wonder we have lost faith!

waveylines profile image
waveylines in reply to Auntyp62

Even face to face they mess up.... Last year I slipped on ice and hurt my ankle it was agony....Id broken my ankle but I had 5 diagnosi in 6 weeks.......which osolated between its not broken/it is and so forth back & forwards. They gave me a walking stick on the first diagnosis of not broken and didnt bother treating after that no matter the diagnosis. If they cant even make their minds up if its broken or not( -x ray said it was!) then what hope do we have?!!! 10 years ago a major bone broke in my leg (due to lack of vit D it turned out)and GP said its an infection from a bite (leg was swollen). When I said but theres no bite site she said I know its an anomally & gave me string antibiotics that burned my insiides & gave me diarohea. Took a month to get a proper diagnosis then they had to re-set it.....consultant was furious as not only did GP miss but so did a&e cos although x ray showed a clear break they thought it was wrong because I could stand up!! This is basic medicine.....unforgivable no wonder metabolic consultant lost his rag. Too many incidents of this nature over the years to have any faith.

A wise patient thoroughly researches and cross checks literally everything.......doesnt make for a relaxing process but seems to be the only way if you value your health. Thank you Dr Google!!

Levojunkie profile image
Levojunkie in reply to Auntyp62

Yes, the number of people generally who feel the same is huge (I know this from research I used to do with regard to NHS - every person I ever spoke with has a sad/horrible/vile story to tell about GPs and/or specialists. From unprovoked rudeness to rape.) Trouble is, Auntyp62, we no longer think of them as gods but they certainly still think of themselves in that hallowed light. I think that their cowardly hiding away because of Covid and all the phone malarkey has put the last nail in the coffin of their reputation.

greygoose profile image
greygoose in reply to Levojunkie

Wish I could like this twice!

meme profile image
meme

Can I join the no trust in Doctors club too please.

Too many cases of missed or wrong diagnosis for me and many of my family and friends to list.

One does stand out. A friend fell and could not get up. An ambulance was called. Hospital took X-rays and said nothing was wrong and she could leave. However she could not get up from the bed. Eventually someone else was asked to look at the X-rays. That is when they found she had a broken back!

Starling87 profile image
Starling87 in reply to meme

I hope your friend is somewhat OK today, how dreadful...! I think it's important to share these stories.

Am example I have fresh in mind is when I met an old colleague a few months ago. He broke the news that his wife had passed away from ovarian cancer last year.. She kept pleading with the doctors to take more tests as she was feeling very abnormal, in pain and devastated with hormones, but they shrugged and chuckled: "Why come on.. Do you think you have cancer or something? It's just common menopause" and never took it seriously. By the time they finally listened it was too late.

Sparklingsunshine profile image
Sparklingsunshine in reply to Starling87

Hi

My friend died of bowel cancer after her symptoms were dismissed as hypochondria, IBS, attention seeking. She had Bipolar and so everything was blamed on her mental health and her physical health was ignored.

seniorita profile image
seniorita in reply to Sparklingsunshine

3 of my father's siblings had bowel cancer. So did my brother. A short while after his death I realised I had all the same symptoms so rang GP. I do realise all these symptoms can be caused by other things but I had to stamp my feet to get a poo test. Sum total of investigation.

Litatamon profile image
Litatamon in reply to Sparklingsunshine

That is horrid, I am so very sorry.

waveylines profile image
waveylines in reply to Starling87

So sorry to hear this and for your loss. Happened recently to a friend of mine. He complained for months on end of exhaustion, they said its your weight etc. Three weeks ago they finally took him seriously and did tests & found he had metastic cancer, he died a few days ago......doctors never got as far as putting together a full diagnosis let alone a treatment plan.

Hillwoman profile image
Hillwoman in reply to waveylines

I'm so sorry to hear this. Absolutely tragic.

waveylines profile image
waveylines in reply to Hillwoman

Thank you. I really feel for his family. He was a builder.....they never go to the docs unless its serious. So never let a doctor soft soap u like they did my friend.

HiI've had run ins and very bad treatment from invidual doctors and nurses/midwives over the years. I guess it's like anything else,there are good and bad professionals everywhere. Same as people, there are people you love and would do anything for, and people who you wouldn't wee on if they were on fire.

Conversely I've had lovely doctors who have gone the extra mile for me or who just listened and didn't dismiss my concerns as hypochondria. I spoke to one such yesterday. She was so nice and friendly and as someone with an autoimmune condition herself (don't know which one) understood the challenges they pose.

So I take doctors and other medical professionals as I find them, give them a chance and make a point of avoiding those who prove to be arrogant, rude or dismissive. Life's too short to waste on people like that.

BiscuitBaby profile image
BiscuitBaby

originalText

I read this article just the other day. He is a cancer survivor who went on to train as a doctor. His comments are interesting in that he says patients aren't "real' during training and they exist in text books! He also comments that studies suggest that the further into training they go, the more cynical Dr's become!! He also suggests that patients should be elevated to teachers!! Can you imagine?? A patient actually getting to say their piece!! 😱

waveylines profile image
waveylines in reply to BiscuitBaby

How lovely to have an enlightened doctor, how sad that its put forward as something new.......it is meant to be a cornerstone of medicine! 🙈

BiscuitBaby profile image
BiscuitBaby in reply to waveylines

Absolutely!! Listening to patients...how novel!

humanbean profile image
humanbean in reply to BiscuitBaby

Due to a bug with the forum software links can get lost when posts are edited. The link to the article you refer to has got lost. You can either edit again and replace the link or post a reply to your own post with the missing link.

Brightness14 profile image
Brightness14

No

Ragerty profile image
Ragerty

I absolutely hate the doctors with a passion that is not healthy. I am left with an anger that I think will take a while to work through. It's a long story about 3 years ago I said I didn't feel well worn out and just not well somethings not right. They did all the tests and the only thing that came back was I had blood in my urine (never saw any). All further tests at hospital came back negative.

I was then diagnosed with hasimotos lol great I thought they've found out what's wrong and I can start feeling better. But no still felt really poorly my anxiety went through the roof as I knew something wasn't right. I kept ringing the doctors for help but by this time I was marked as a hypochondriac middle aged menopausal women. They put me on hrt no still didn't help on antidepressants and cbt training no still didn't help still felt poorly but was I believed no. The comments I got was nothing wrong with you we will try another antidepressants we will up them I'll prescribe someone to come and take you out to get your mind off it.

All the time I still didn't feel well and started to think is it my mental health to no I really dont feel well.

I ended up in hospital after calling 111 one night and bless them they started to do some tests turns out I had stage 3 kidney cancer resulting me in having my kidney and urethra taken out and just about to have my last round of chemo.

I no longer feel poorly like I did thank goodness and I realise that I have been lucky but the fact I have been put through all this is now effecting my mental health and it has been very tough and the hatred I feel for the doctors is eating me up and will take me a long time to trust them again. I darent even ring them for a sick note as I feel sick at the thought of doing it. I am in the process of changing doctors but even that's a bit scary at the moment.

The care I have recieved at the hospital and with my urologist and oncologist team have been excellent and I can't thank them enough. It's the GPS I hate.

Sorry this has been a long rant and thank you for reading it's helped getting some of the anger out xx

waveylines profile image
waveylines in reply to Ragerty

Am so sorry Ragerty.....you've been through a terrible ordeal. Not helped by the GPs not listening & acting. Am so glad the cause was eventually investigated & found. Treatment for cancer is a scary process (I had BC but 7rs clear now). I wish you a speedy recovery, with a lot of celebrating....getting the remission or all clear thumbs up is such a joyous thing. Big big hugs xxx

Ragerty profile image
Ragerty in reply to waveylines

Thank you xx big hugs back

LindaC profile image
LindaC

Acute Medicine, [cogent] Medical Research... in the main, yes I do.

Chronic disciplines ;-) Endocrinology, CFS/ME nope! Of course, there will always be the 'odd one' who is trustworthy AND competent = needle in that haystack!

BootsOn profile image
BootsOn

Add me to the 'no' list.

Rapunzel profile image
Rapunzel in reply to BootsOn

Add me to the most GPs are tools list xx

Litatamon profile image
Litatamon

I was going to agree with the praise of surgeons as I just had a thyroidectomy and she was fantastic from beginning to end.

But then I remembered telling my surgeon after a myomectomy and ablation that something was not right.I know my body and something is wrong, this is not just poor recovery. He screamed at me "OMG, you should have let me at least take your uterus." And then left the room.

Well I had sepsis in that moment. And it went unchecked.

This was an emergency gynaecologist. The one I acquired after another fun time with sepsis is the best doctor ever. And a great man. So they do exist.

greygoose profile image
greygoose in reply to Litatamon

I had a surgeon operate on me for a slipped disc I didn't even have! He manipulated me into having the surgery - which was horeendous - and I didn't know enough to refuse. So, surgeons don't get my vote of confidence, either.

waveylines profile image
waveylines in reply to greygoose

Thats shocking Greygoose. That surgeon should be struck off! You poor thing....what a terrible thing to do to you.

greygoose profile image
greygoose in reply to waveylines

It was pretty terrible, yes.

jade_s profile image
jade_s in reply to greygoose

Yikes yikes yikes. I agree with waveylines, doctors like that should be struck off. At least in the US you can sue. :/

greygoose profile image
greygoose in reply to jade_s

I've since been told that it happens quite a lot. I can't imagine why. Don't they have enough work to do without pulling stunts like that?

Litatamon profile image
Litatamon in reply to greygoose

Sighing. How crazy.

jade_s profile image
jade_s in reply to Litatamon

OMG! I'm so sorry, how awful.

I now remember I nearly got sepsis after a (totally useless) surgery I had when I was 19 and the surgeon refused for weeks to believe it was infected until my mother finally literally shouted at him and refused to leave until he investigated further - he drew out some fluid and it was, well, very gross. Needless to say they sent me right back to surgery the same day to clean it all out.

And the symptoms that led to that useless surgery were probably the start of hypo, b12 deficiency, etc etc. I was tired(*), tons of other symptoms, and had constant swollen lymph nodes in my neck. They were freaked out that it could be cancer, and when a biopsy came back inconclusive(*), they did the surgery.

(*) Years later I requested the records from the hospital - the biopsy was NOT inconclusive, i had very low iron at the time, and they didn't even measure thyroid. The referring doctor was the mother of a classmate so there was some implicit trust there. Not after that! My mother still refers to both her and the surgeon with disgust.

So yeah, my default mode is still do-not-trust. And I agree with the "hate" comment others have made. I've not-so-nicely wished the same illness onto some of them. :/

Litatamon profile image
Litatamon in reply to jade_s

Thank God for your mother. There is nothing like a mother who will not take no flippin' action as a suitable answer or solution.

---------

The second gynaecologist above, that I said was a great doctor, surgeon & man - he went up against his own hospital to keep me from a hysterectomy. The radiologist was convinced I had ovarian cancer and he & the hospital put a ton of pressure on my doctor to operate. He thought they were wrong and asked me if I could give him four weeks and another MRI.

Everything was completely different on the scan & whatever was their concern had disappeared. He still scans me all these years later. I have not had a hysterectomy, which would not be a normal or easy one due to damage in the area - despite so many over years at a different hospital's outpatient clinic pretty well demanding one. It makes me shudder how many doctors probably give into the pressure of their hospitals for surgeries that are not necessary.

So great doctors do exist. They are simoly just too small in number .

AmberBee profile image
AmberBee

Am at the stage where I no longer wish to waste my energy staying angry with the nhs, learnt 2 things the hard way- think for ourselves and do not believe everything we are told. Some doctors I find mean well and are trying to help but never truly know what they are treating as they do not ask 'why' in many situations & the brain washing/manipulation/sensorship is frightening getting worse with covid it seems.

humanbean profile image
humanbean

There is a famous unfinished book by Kafka called The Trial. I've heard of it but never read it. Wikipedia describes it this way :

In 1914 Kafka began the novel Der Process (The Trial),[143] the story of a man arrested and prosecuted by a remote, inaccessible authority, with the nature of his crime revealed neither to him nor to the reader.

The above describes how I feel when I deal with doctors. They can decide all sorts of things about a patient on the basis of a five or ten minute consultation e.g. that a patient is an attention-seeker, a drug-seeker, a hypochondriac, depressed and anxious, or some other bunch of insults, and they flag the patient's records accordingly. But they never tell the patient what insults they've been tarred with and why. The patient doesn't know who wrote these flags. They (the patient) will never be told what the evidence for their "crimes" is, because these flags are a secret - they are never discussed with the patient and as a result the patient cannot defend themselves. For most of my life GP and hospital records have been kept secret from patients - it was only in the late 1990s that patients had the right to get copies of their records. Also if the patient eventually gets diagnosed correctly for their problems and it is proved that they had reasons to plead for help, the flags on their records never get removed.

I did eventually buy a copy of my GP records. I suspect a lot of stuff was removed to protect the doctors, although naturally they dress it up as protecting the patient. I have found there are a huge number of mistakes and omissions. Doctors will say one thing to me and report something else in my records.

Karen321 profile image
Karen321

No I don’t trust doctors at all. I was told everything was in my head for almost 3 years until I collapsed and was subsequently diagnosed hyperthyroidism and Graves’ disease. It had done a lot of damage which I will never recover from. So no I will never trust a doctor again

HowNowWhatNow profile image
HowNowWhatNow in reply to Karen321

Telling a person everything is in their head.

I can’t imagine how you get from medical degree to there without being sure that you have ruled out serious illness.

metamorphica profile image
metamorphica

Not after the years of medical gaslighting, no i dont trust any doctor now.

There have been a couple of times where i have out right disliked them.

I used to though. My doctors where i used to live in Cardiff were good, one even listening to me and using what information i brought in (regarding fibromyalgia, before i was diagnosed with hypo) for their other patients. But she retired. the young doctor who took over was cautious, asking me for why i thought this or that but when i explained my case he too listened.

When i moved to Crawley, it all changed. the endo i see (i say see, i have never seen him, only spoken on the phone, his colleague i did see, a female endo, i wanted to walk out on for her gaslighting) he is resigned to the fact i use NDT and monitors my health and i speak to him once a year.

My gps, are useless, unless its something visible and acute. Chronic conditions, you can forget them knowing or caring about. they have wiped their hands of me and passed on testing of my thyroid to my endo. (though i have yet to hear from him.)

(i will say the nurses are good though).

HowNowWhatNow profile image
HowNowWhatNow in reply to metamorphica

So sorry.

TSH110 profile image
TSH110

Some are good and some are bad and most are somewhere inbetween. I take each one as I find them and I have had some very good doctors . Rubbishing them wholesale is not very fair. The system they are part of is not helpful to good thyroid treatment. Are they as much prisoners of it as we are? Their hands are often tied, they are taught complete nonsense about thyroid disease and treatment, it must be frustrating to believe all that junk yet your patients are not happy with it. I wonder how change can be initiated to improve matters for everyone. I remain stumped.

SarahJane1471 profile image
SarahJane1471

I like and trust my GP she listens and tear me well. She knows I do my research and is willing to here me out 🤷‍♀️Foreword thinking knowledge GP……. I guess I’m lucky. She’s been my GP for 22 yrs

waveylines profile image
waveylines in reply to SarahJane1471

I was going to write you are lucky indeed Sarah Jane but actually your GP does her job well.........she should be the norm but sadly isnt! Lol.

Many of the GPs in my practise have retired in the last three years.......its now run by three young doctors who are great screen readers but little else. They do not see you or examine you......apparrantly they have this special ability to examine you down the phone. Amazing. Consequences are a condition that I had was a) not diagnosed b) refused to be seen repeatedly, c) not classified as urgent, d) I had to get very cross and jump up and down to demand a referral........apparantly I was then fast tracked still not seen but was finally seen 6 months later (& yes that was the fast tract queue the hospital confimed it). The consultant then did do a physical examination (finally!! Hurray) and was horrified by the state I was in. My only option now is an op........roll on another 9 months, the current queue, but who knows how long it will be as we have winter to get through first. Maybe next summer or the Autumn? 🤞

Not only do I have very little trust in doctors but scarily I fear we are fast approaching private treatment.......something I cant afford beyond the odd consultation. Now that is a different story. I arrange a private consultaion was seen within 3 days!! We live in a dual system......those who have the money get seen and treated quickly, including ops; those who cant, get treated on the nhs and wait for months and even years........and for an op often dont even get a choice of surgeon. As the nhs collapses the private sector is strengthening........all intentional by our government if you ask me. Aging population, no forward planning......seems to be a great surprise to them that their current system of funding stream doesnt work any more!!

SarahJane1471 profile image
SarahJane1471 in reply to waveylines

Agreed

HowNowWhatNow profile image
HowNowWhatNow in reply to waveylines

Scary times when hospital consultants are horrified by the state of general practice. And general practice is horrified by the length of time referrals take.

And we are all horrified by ambulance / A&E waiting times.

And neither of the Tory candidates is focussing on the problem, because they’d all like to ignore it and because they and their friends can afford to go private / will sell out until they can.

waveylines profile image
waveylines in reply to HowNowWhatNow

Theyre ignoring it because they are busy making the nhs private.........the reason why its failing now is because they have deliberately starved it of funds for years, privatised great big chunks of it. Eg physiotherapy......private companies took over the easy part of it left the nhs with the tricky part who have to manage those most complex on a tiny budget. These days you have to go private if you want decent physiotherapy treatment. This is the pattern that has been used throughout the nhs. We are now at a tipping point. The nhs can barely cope this summer.......I dread to think what winter will bring. Oh and the increase in training doctors?......nope! They capped it so not enough are bring trained even now. Trainee doctors in the last two years of their training ate expected to live on £6000 per year, many reliant on food banks etc...imagine being treated by them half starved & trying to study!! There is no intention to save our nhs. They are waiting it for to implode which it is despite dedicated staffs efforts.

Big money in private health!!

HowNowWhatNow profile image
HowNowWhatNow

Thanks everyone for all your comments, histories and thoughts here.

I read and took note of them all, and took an inward breath when I read about each of your friends, relations and other loved ones who didn’t receive important diagnoses and care in proper time and as a result became very ill and/ died too soon. Those will stay with me.

The question was whether we / you could trust doctors again after a bad experience/s. The answer across the board was a standard: no way (for those who had had these bad formative experiences). And many of you harbour a lot of anger about these terrible experiences. Some people - the minority? - have been lucky enough to see one or two good medics and find they can trust them.

Trust is brittle. If your trust is broken badly enough by anyone - it is of course very difficult to trust in the same way again. Humans and animals are the same in this.

One or two people did sound a note of: what can we do about this? Not a Pollyanna

“How can we look on the bright side and ignore all the terrible experiences people have had”, but a constructive “what can we do” in the knowledge that the system as it stands is breaking, even where it is not broken.

And this is what I am wondering.

Data and technology will not save or protect us.

The NHS and for profit medical companies have more of our data than ever. And at the same time our experiences of health and of poor gatekeeping (eg. online appointments that should be in person) and outcomes are getting worse and worse.

The people here who are writing about their good experiences of GPs and consultants are aware of how lucky they are and of the deep Slough of Despond on either side of them. In luck and yet only a step away from bad care, if you move house or your GP retires / is taken over / your pharmacist permanently runs out of stock for some unforeseen reason.

Until this or the next government finds an answer to the social care problem - which it is too lazy and uncommitted to problem solving to do - the NHS is just going to get slowly worse and worse.

I wish I could undo all the preventable wrongs done to your and your loved ones by parts of the NHS.

I wish I had more solutions and especially for those being born into the world now, who have their whole lives ahead of them.

My own health is in a poor state. I have seen more doctors in the last 2 years as I had in forty or more years before it. Not one of them wants to look at a range of health problems in the round. And so I go to see a doctor who promises a quick fix / a single test. When that doesn’t work, that doctor is nowhere to be found. A new symptom arrives. I then explain that and the other problems to a new doctor. I am given another “solution”, which doesn’t work. Or told that I have brought too many problems to the consultation. The problems mount. And lack of a good NHS GP at the centre of it means that I am adrift. If I had an infected nail / an ear infection, then I would be mended. As someone here already said about the NHS. Because I don’t, I am a constant drain on medical resources as I am sent from pillar to post for the next quick fix that doesn’t work, but without ever having a thorough check over. No-one in the NHS has time to care about me because my situation doesn’t fit into a 10 minute GP slot or into an A&E slot and my overarching health problem has not been identified by / shown to a specialist. As a result my health is allowed to get worse and worse until - I hope not, but it is the only way the system “works” for someone like me - my health is bad enough to fit into the A&E slot. We wouldn’t create such a terribly unsafe system for car MOTs - if it’s not broken down, and a mechanic can’t spot what new part the car needs in record time, garages will declare any ailing car roadworthy - and yet this is how our NHS healthcare works.

waveylines profile image
waveylines in reply to HowNowWhatNow

So sorry to hear this but dont think a&e will sort it either. They are there to to treat acute imminent death threatening conditions not to cure you. If there is a problem once you are stabilised they email a brief report to your GP, discharge you and then its up to the GP what they do about it. I was in and out of a&e for several months due to a heart probelm. My GP thought they could treat it and "weren't worried" (their words)...they couldnt.....a&e kept telling them. Took 6 months before they decided to refer and another 6 months to be seen, another two years to sort it out. That was two years ago. Jump up and down, research like mad.....

HowNowWhatNow profile image
HowNowWhatNow in reply to waveylines

I don’t mean to intend that A&E can / should sort out tricky conditions that aren’t emergencies. Am sure we all agree that when you don’t get to see your “family” doctor about something that’s bothering you over several weeks or months, that thing is more likely to get worse than better.

And when it does get worse, and when you still can’t see your family doctor, where do you have to go from there… A&E.

Far too many cancers are diagnosed as a result of an A&E presentation. Too many asthma cases, not properly controlled, end up there too.

My daughter presented in A&E with severe bronchiolitis because the GP had ignored me two weeks before that, when I first had concerns about here. She then spent a week in PICU, being helped to breathe.

It happens much more than it should.

No, they don’t tend to diagnose tricky auto immune problems. They do sometimes. But they still often see us when our auto immune problem has got worse to the point of becoming an additional health issue elsewhere.

I think we agree on the fundamentals. I am not saying I would prefer to go to A&E if I can. I am saying that if you ignore a vanilla health problem - it can grow to become a big black ogre, and too often it’s only the ogre that’s treated.

waveylines profile image
waveylines

I think we are on the same page! Am just saying though that a&e do not deal with anything unless it has become very serious to maintaining life. My heart condition is not autoimmune but they kept me in a&e on a bed everytime all through the night, monitoring me until GP opened then discharged me telling me to go to GP. My resting heart rate was 150 at best. That happened 3xs. 4th time I refused to go in despite ambulance staff pleas. GP finally referred me after months if this, I had to wait 6 months to be seen, pre pandemic, then when I had had a 48hr monitor cardiology panicked and rang me straight away. I'm just saying a&e will not fast track you into a specialism. Its down to your GP. Post pandemic ure best to go private or expect an even longer wait IF you can get to see a GP & get referred. I dread to think what will happen when winter hits this year. Its taken me 6months to see a Surgeon, now at least another 9months for an op....but guessing it will be longer as winters coming up. A friend of mine was classified as urgent for a heart valve 6 months ago by cardiologist, still waiting, now deteriorated and been in hospital for a week. It is scary....

HowNowWhatNow profile image
HowNowWhatNow in reply to waveylines

Waveylines

Your heart ill health experience sounds terrifying. And if you hadn’t put your foot down, you would still be on that scary carousel.

I know a couple (married) of surgeons. They have practised in the US - on a sabbatical - before. In the US they could and did operate all day every day, using their skills and knowledge to the maximum. Back in the UK they are often limited by a lack of trained intensive care nurses (ie. lack of a post-operative bed), lack of a sterilised operating theatre and all the other hospital shortfalls that means that they are working beneath their potential. Very frustrating for all.

Your poor friend. Can they be operated on now? Or is the waiting list too long or their health too poor?

waveylines profile image
waveylines in reply to HowNowWhatNow

Theyre doing a further assessment today...camera down her oesophagus so sounds like they're preparing her. Hoping to visit to see her tomorrow. I really hope they will do the op very soon. She's still in hospital so knowing how quickly they discharge am guessing she's still pretty poorly.. xx

HowNowWhatNow profile image
HowNowWhatNow in reply to waveylines

I spoke to a private gynae’s secretary this spring and said I was surprised by how long their waiting lists were - she told me that this is one of the results of lengthening NHS times - private waiting times are much longer now - because they are seeing an influx of new patients. She also said she had just spoken to someone who needed a hysterectomy done urgently (her NHS gynae told her) but was told that she would have to wait for over a year for it. It does seem that more and more people who really can’t afford to be seen privately are starting to feel they have no choice.

waveylines profile image
waveylines in reply to HowNowWhatNow

Absolutely! Am not surprised....its not been helped by many people being considered chronic so not even looked at by the nhs for over two years. I went private to consult my oncologist.

HowNowWhatNow profile image
HowNowWhatNow in reply to waveylines

What I don’t understand is why A&E discharged you to the GP. Did they not feel they could refer to the right specialism because of purse strings being controlled by the GP?

I was seen in A&E last year and then kept in by the hospital (admitted) for 4 days so as to have ECGs, then a heart ultrasound and then a heart CT. It can be done, as a route of being admitted. But equally, they can also discharge you to the community too, without any onward care.

waveylines profile image
waveylines in reply to HowNowWhatNow

A&E do not do referrals to other specialisms, GPs do. They will email them recommending but up to GP. Ive had the same problem with Consultants who won't refer on but refer it back to GP to do referral though recently a consultant did refer me straight on to another department. Thankfully!

No. I actually hate the conventional medical system. Unless it’s an emergency, I think doctors actually often keep people more sick. And their arrogance doesn’t help either.

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