Examples of Wrongly Being Told There Was Nothing Wrong By The NHS

[Westover]

Interested in examples of this, as it appears to be a growing trend to be fobbed off, sometimes repeatedly by a GP, and told there is nothing seriously wrong when there is an issue requiring treatment. I'm also wondering if it is bad in other countries. In my case:

• Developed what turned out to be pneumonia. 2 initial visits to the GP, first visit told there was nothing wrong and it was just a virus and couldn't be treated, second visit a few days later and was diagnosed with a kidney infection and given antibiotics appropriate to that. Ended up collapsing at home that weekend, ambulance called, taken to hospital, chest x ray and diagnosed with pneumonia. Was given penicillin. Unfortunately, it turned out to be a penicillin-resistant strain and so felt increasingly terrible over the next week. Managed to persuade my GP to give me an emergency appointment (this was pre-Covid), during which he barely looked at me and took a lengthy phone call before dismissing me, telling me that the antibiotics took time to work. Phoned 111 the next day and was given an appointment at a local health clinic who sent me back to hospital, where I was admitted for 4 days and put on intravenous antibiotics.

• Fell while out running and slightly dislocated my kneecap (as diagnosed by my GP). A week later, felt a sharp pain and was unable to bear weight after that. After being phone triaged, eventually got an appointment with NHS physio some weeks later where I was x- rayed, told there was nothing wrong with it and told I was being lazy and there was no reason I couldn't exercise and I should be walking properly and not using crutches (I have never been lazy in my life!). Went back 2 months later as it was worse and was told the same again by a clearly even less interested physio. Refused an MRI scan. Paid for a private MRI scan, which showed a stress fracture. My knee is now severely damaged as a result of not resting it for 5 months after it occurred.

• Fell off my bike and got a bad cut which caused scarring to develop on my face. At A&E where it was initially treated, I was told by the consultant that I should refer for possibly laser treatment or to have the scar revised once a year had passed. GP happily did this and in the consultation, I was told that "the best option" was to have psychiatric counselling to help me "get used to the change in my appearance". I wrote a stinker of a letter back saying that I would not be taking up that option as I wasn't that bothered by it but I had been advised to get further revision surgery by a consultant. I then moved house, got another consultation elsewhere and was given laser treatment to revise it which was successful.

I first saw a doctor about suspected asthma in 1999, aged 11. Was told I didn't have asthma as a test of my lung function after some inhalers was 'just below' 12 and 12 or above indicated asthma.

I went to many GPs in my 20s saying I kept having shortness of breath and a tight chest and thought it might be asthma. I was told it wasn't as I 'don't wheeze' and 'it's not asthma without a wheeze'.

Diagnosed with asthma in 2018, aged 29 after my asthma was so bad on holiday I had to google how to say 'asthma attack' in Italian, just in case. I finally found a GP willing to refer me to an asthma nurse for an assessment.

I am now under an asthma consultant as my asthma is difficult to control. I have recently been declared CEV after needing several courses of steroids recently and am now eligible for Covid treatments.

I still don't wheeze.

@Ozgirl75 isn't healthcare in Australia free, as in the same way it is free here , in that you pay for it via taxes ? Out of interest how much does your private health insurance cost you ?

I agree with the point made about arrogance and misogyny. My mum discovered she had fibroids, but at that stage hadn't gone through the menopause. (This was about 15 years ago, mum was in her late 40s) After the male gynae in his older years told her the diagnosis he said without any discussion that he'd set up a hysterectomy. My mum said, now hang on, what other options are there? He said there wasn't any. Mum wasn't having it. She knew he wasn't telling her something. Had a feeling. She asked if she could be referred to another specialist. He was horrible to her. Telling her he'd been in the field for many years and he knew what he was talking about. My mother gave as good as she got, saying, you haven't even discussed how I feel about surgery, what would happen if I refused, what the long term consequences of that would be. You just flat-out without discussion want to whip it out. He was testy, like the "little woman" was challenging him. My mum said, no, she'll go and look into other treatment options.

She went back to the GP and he did some research on the subject. He discovered that if she could put up with the symptoms they would probably disappear after menopause. And they did! But the man was so arrogant, and so dismissive of my mum, she has been wary of asking to be referred to anyone since.

I have had various experiences of specialist care and I have to say misogyny and arrogance has in every case impeded my treatment. I know this has been written about and some research has been done but that is the culture of the NHS. My daughter had to attend an assessment at a children's centre at about 12 months old because she was developmentally delayed as a premature baby. The doctor assessing her was horrible, making assumptions about her, her dad and I because of the occupations were were in (manual workers). He basically said DD wouldn't amount to much and would continue to be delayed because we were working-class. There was a follow-up appointment due and I flat-out refused to go. My HV got involved and asked why. I said because the doctor had been rude and dismissive and prejudiced. She put in the notes that I was a first-time mum and that I was being difficult, basically. Anyway DD had just started a private nursery by this point. Guess what? She caught up, then she thrived. But that doctor will live on in my memory as an absolute arrogant w*er. I wonder how many other kids he's written off because of his prejudices.

Both hospital births I had I got raging thrush immediately after the babes were born.
With dd2 they refused to give me any medication until the swab results came back in two days. I was writhing in agony before the two days was up. I tried another mw who grudgingly agreed to check me out. She recoiled with a shocked look on her face after seeing what my poor vulva looked like. She speed walked off to get me the pessary and cream. Took days before I could pee without sobbing because I'd made such a mess whilst scratching in my sleep.
I also ended up with sore hands because I was so paranoid about passing it to my baby that I was obsessively hand washing.
I know it's nowhere near as bad as some of the other posts though.

Ruptured brain aneurysm.

Very dangerous.
Lucky to be here at all.
😬

@Odessafile accountability for a start. The people who failed to diagnose niece 1 with her tumour, berated my sister for being PFB. That niece almost died, because of their dismissal.

The people who accused my BIL of beating niece 2, because he's got a shaved head and tattoos, refusing to do her blood tests because even though she had every single symptom of leukemia - thought they knew better.

Well, how many more people have they dismissed? I could not speak to my patients the way medics do. I could not fuck up so royally, that killed people, and blythly carry on doing my job with no repercussion and certainly no apology.

People need to take accountability for their health too, and stop wasting time for things they could get at the pharmacy. They could pay, if affordable, for private osteotherapy and physiotherapy for their MSK pain, when all they'd get from the Dr is pain relief. The systems in the NHS are not fit for purpose.

Most of all, it's attitude in my experience, and that costs nothing to change.

Yes! My husband was telling me about a study that found an AI system (where the patient inputs their symptoms into a computer) was much more accurate than a GP diagnosis. It was even more accurate than the AI plus GP input (i.e. patient inputting their symptoms into the computer with the GP adding their thoughts in too). The GP adding their input made the computer system less accurate, not more!

Me: broken bone. Followed 111 guidance, only to be treated as a time waster with a bruise by A&E. went back 6 weeks later to have the fracture properly identified by x-ray. 3 years on it still hasn’t healed right.

close family: broken hip, common and debilitating condition that could be easily diagnosed by blood test.

all female patients, totally coincidentally. The men of the family think the NHS is great.

if they were genuine mistakes, not great but it happens - I think it’s a culture of patronising patients, treating them as unreliable narrators of their own bodies, and misogyny.

Dad being told his persistent diarrhoea and weightloss was just side effects of metformin. Then he turned yellow when his liver was affected. He died of metastasised bowel cancer within weeks. The GP just saw a 60 year old man with diabetes and didn't consider anything else.

Daughter's hearing assessed as within normal limits. She kept on complaining her ear was full, took her elsewhere, she has a lot of hearing loss in that full ear. Now wears hearing aids after not hearing properly at school for 2 years.

I now consider NHS advice with a pinch of salt. I'm bluntly honest with my GP about this . I'm not rude to her as I used to work in the NHS myself, I just say "and I'll be doing my own research on that thank you".

My ectopic pregnancy was wrongly diagnosed several times. First I was sent for a scan at 6 weeks due to bleeding but was told it was a miscarriage as they couldn’t find anything.

2 weeks later my tube ruptured, I had severe abdominal pain so rang 111 and then sent an ambulance but once got there the staff didn’t seem interested. Was taken to an assessment ward and they only tested my blood for an infection which came back negative but despite this was sent home with antibiotics with the diagnosis of endometritis (sp?). They wouldn’t do a scan or check my hcg levels.
A few days later I rang the ward as was still getting pains although not consistent and had a fast heartbeat (ectopic sign) but woman I spoke to said it was just ‘anxiety’.

A few days after that and not feeling any better i rang the epu where I had the 6 weeks scan as I did a home pregnancy test and was still getting strong positive and they told me to go to the assessment ward the next day.
go back to the hospital and they agree to check my hcg levels and provisionally book me a scan for the next day. I go home and have to ring the next day for the results and find out my hcg levels are still rising so need to come in for a scan. I finally have the scan which confirmed my tube had ruptured and my abdomen was filled with blood.

I was admitted and had surgery a few hours later. The blood inside me had clotted as had been there for a week by that point.

i still feel annoyed by the whole situation!

When to A&E with palpitations. They knew I was on thyroid medication for an underactive thyroid as o told them very clearly (and palpitations is a very well known effect of over-medication).

I did not realise at the time but they did not order thyroid bloods. Sent me home saying all was fine but they would refer to cardio as a precaution.

Nothing happened (on wait list) but palpitations were continuing so went back to GP to see if there was anything further they could do/check in the meantime. Mentioned thyroid medication again. GP checked my hospital results. Did not pick up they no thyroid bloods had been taken, nor did he order his own. Said all looked fine and should stop worrying ("my pretty little head") about it and they would stop. (The bit in brackets was just in his head but the condescension was very apparent, ironic given the very obvious thing he'd just missed).

Anyway, I realised after this appt that my hospital bloods were probably available on my online record so checked them myself. Immediately saw that NO-ONE had bothered checking my thyroid function. So I did it myself. Ordered thyroid blood test privately.

I was VERY overactive. Immediately went back to (a different) GP who was visibly shocked (and then quickly corrected herself) when I told her what had been missed. Meant I had been left for months with an overactive thyroid while still taking extra thyroid hormone(!), could have had a thyroid storm and died in that time, and I now have osteopenia which is probably as a result of being left like this.

A few months and a private endocrinologist later and I was diagnosed with Graves' disease.

No excuse for that. Had I not felt so ill I'd have complained.

DS who was 8 at the time - severe stomach pain so took him to A&E was told it was constipation but as I argued it couldn’t be they reluctantly did a blood test. He had his appendix which was on the point of rupturing, removed 4 hours later.

There are so many things that could be changed.

Just looking at thyroid issues - the country uses reference ranges that have not altered in decades, and vary from one area to the next.

In Manchester, I was just inside the range = not suffering hypothyroid, the symptoms therefore must be in my head/something else.

In West Midlands, I am outside the referenge range = am hypothyroid, the symptoms are those of hypothyroidism, I am treated for it and am much better.

HOW can I be ill in one county and not in the next?

The answer is that these 'treat by numbers guidelines' that GP's are given, are not guidelines, they are 'stick to these rules or else' - GP's who think outside the box, treat the symptoms not the numbers, are sticking their necks on the line and thats not a safe thing to do for most of them.

B12 deficiency is a similar issue - according to the numbers, I have enough b12 in my blood, therefore the symptoms of b12 deficiency are in my head/something else/go away.

However those numbers don't indicate whether I am using that b12, they don't actually know if that amount of b12 is right for me (again those reference ranges are hugely outdated) - and whaddya know, treated with B12, those symptoms go away.

I have to supply and administer my own b12, because the 'guidelines' state if the tests suggest a deficiency, you get a jab once a month for three months then one every three months... That isn't sufficient for me, I need 2ml once a week, if I miss a dose... I start going fucking blind (seriously, my vision goes really fuzzy, to the point after a day or two, I can't see my phone screen or watch tv, never mind read the computer screen).

Because I am unwilling to go blind for long enough for the NHS to stick me on waiting lists, do tests, find out why i need huge amounts of B12... whatever the underlying issue is will remain undiagnosed.

I am not stopping taking the B12 and putting my trust back in them to find out as they've expressed no interest in doing so, and when pushed made it very clear it would require six months minimum off the B12 and its all my own fault for taking it without their say so.

A colleague of mine went to the gp with lower abdominal pain, was diagnosed with a UTI (although no urine sample or blood tests done). Given antibiotics. Kept going back as symptoms weren't improving and kept being given more antibiotics. After 16 weeks on antibiotics she saw a locum gp as her normal one was off, locum gp referred her for further tests. Diagnosed with bladder cancer. Too late to save her. No gp should continuously prescribe ABs for so long without running further tests.

It's one of the reasons I try to see a different gp if I need to go back for the same issue, always best to get a different opinion

My GP was completely flummoxed by my central hypothyroidism. She had never come across it before and kept telling me that my TSH was in range so I couldn’t possibly be hypothyroid. I gave up in the end and saw a private endocrinologist but I appreciate that’s not possible for everyone.

Apparently having ferritin and B12 levels which were barely in range and a vitamin D deficiency were completely normal and unlikely to cause me any issues as well.

Horrible GP, about my crippling fatigue and digestive issues - 'I realise it's very fashionable these days to have a chronic illness, but just because you've read about something in a magazine, that doesn't mean you have it.'

I ended up in hospital for ten days with severe ulcerative colitis affecting the entire surface of my large intestine, narrowly avoided a full colectomy, and was told I was 24 hours away from multiple organ failure because I was so anaemic and dehydrated. Images of my bowel have been used in teaching as a worst-case scenario example.

Spoke to GP because there was something about my hearing that just wasn't right. (If there's more than one noise, it just goes into a a bit of a mess and I can't hear anything properly) GP decided there was nothing visibily wrong with my ears so sent me for a hearing test.

ENT decided I couldn't be hearing impaired as I was sight impaired, which makes no sense at all.

They did refer me to Audiology for a second opinion. It took 1 question and a quick look in his medical book (he was looking at my medication) to decide that I have mild hearing loss due to the medication I'm on and Auditory Processing Disorder. Whilst I'm aware that APD (because it's the way your brain processes sound) can't be picked up on a hearing test, I don't appreciate being told rubbish about how it's impossible for me to have hearing problems.

My Mother. 'Health anxiety'. During Covid. It was Ovarian cancer. N9 scans for 5m. by which time there were metastases in lungs and bones. Dead 12 weeks later.

Please could you DM me details of your private endo? Thank you

I’m so sorry for your loss, that is terrible

I was right and I’m still really angry that I was ignored for all those years. It has put her prognosis back as she is now too old to start treatments which would have improved her life. You have every right to be angry. It sounds to me as if you need to get a medical malpractice lawyer involved (a good one not one of the many sharks as a medically trained colleague put it the other day who used to do all the whiplash stuff and don't know what they are doing) so that you can at least get her the best care support and education going forward in the rest of her life.

they do need to get past this idea that most things are “in your head” even when symptoms are blatantly physical.

I agree. There are some cases (I once saw one in a neurology clinic I was attending for training purposes) where what seems to be a serious physical disorder really is psychosomatic, but these are rare and this should be the diagnosis of last resort by at least one specialist once all reasonable investigations are complete, and not the first and persistent thing that comes to mind. A doctor tried to tell me not long ago that problem X was caused by condition Y. I politely but firmly pointed out that I've had problem X diagnosed and on my records for over 20 years but problem Y only came along about 6 years ago and no I didn't have problem Y before that as it's a problem diagnosed via blood test results and very specific symptoms. I did get an apology and then they looked back in my records and discussed things properly.

Even if the patient has health anxiety or GAD or depression or OCD or IBS or whatever concurrently if they are telling you that something is different and persistent or coming and going in cycles with some regularity and they are fairly sure that it's NOT just their anxiety, LISTEN.

there’s proven research that women get fobbed off .. an awful lot, and given how volatile our reproductive systems can be, I think more attention should be paid.

^This too.

@Wrongkindofovercoat yes, healthcare here is (basically) free. It’s actually quite complex but we have “bulk billed” GPs who do normal GP stuff and that’s all free. Sometimes you pay a little extra for things (I had an Implanon recently and paid $100 for that). I also pay $120 per year for a skin cancer checkup.
There are also other GPs who charge an uplift so you pay a bit extra but I’m not quite sure why as my bulk billed GP centre is amazing.
Hospital is free for all treatment like the U.K.
We also have an excellent private hospital system running in tandem. This is often used for non emergency things (my husband had a bone spur removed from his foot) and often birth (although you can also give birth in the public system - private means you choose your Dr, you see them at every Pre natal appointment etc).
You can also be treated for serious illnesses in the private hospitals - you don’t jump the queue but you do get things like a private room, you can choose your oncologist or other specialist etc.
We pay around $270 a month for private healthcare but it also covers two dental checks for each family member per year, it covers one set of contact lenses, physio, ambulance cover, glasses and a few other things that I haven’t used. If you earn over a certain amount you pay more tax if you don’t have private health care.

We do pay higher tax in Australia than the U.K.

I don’t know what the system is like in other parts of Australia as each state runs the healthcare separately I believe. I did live in South Australia for a while and gave birth to my first baby there and it was fantastic. They test every pregnant woman for GDM, Group B Strep, they pride themselves on never having lost a baby to a diabetic mother, they say they are extremely conservative with treatment (eg no going over due date).
I know two people in the U.K. who have had terrible outcomes from GDM. My close friend had such a huge baby that she had a massive PPH as she was in labour for so long and he also had congenital pneumonia from inhaling meconium. He’s fine now but it was terrible for her. She wasn’t tested for GDM as no risk factors

Another old friend from school wasn’t tested, was allowed to go overdue, was at her Pre natal appt, they couldn’t find the heartbeat, had a crash C section. Baby was only just alive, had to go into a special freezing thing and although he’s wonderful and fine, he is mildly deaf and has mild learning difficulties and cerebral palsy.

Sorry I mean they have never lost a baby to a GDM mother since they started specific protocols such as testing every woman, inducing on or before due date, extra monitoring towards the end of the pregnancy, seeing a dietician and endocrinologist regularly

I used to test my bloods and send the results weekly to my endocrinologist who would monitor if everything was going ok.