So sick of GPs not listening to people

[Wonderwendy]

So again someone I love has been diagnosed with cancer at a late stage after being fobbed off by the GP over and over again for YEARS. This is the 3rd person close to me that this has happened to and you read about it all the time. It's an absolute tragedy. What can be done about this sort of thing? Doctors just don't take patients concerns seriously, especially when they're young.

Hi sorry you are having to go through this. I was told it was stress and I had no blood in poo BUT I knew something was wrong so kept on saying this - I thought it was Ovarian Cancer but eventually I was sent for appt at Hospital with General Surgeon about 2 weeks later (under 2 week rule) and after tests it was Bowel Cancer - had major surgery removing tumour in small bowel, Cysts on Ovaries, Ovaries, some of womb and Lymph nodes. 2 years later and I am still totally exhausted have terrible digestive problems and hair falling out, nails thin and weak and always itchy all over back. Fed up. I do so hope you get seen asap - if it is urgent why isn't the GP referring you under 2 week rule. Can't you see another GP at the Practice? Why don't you report to Practice Manager? - you need to be seen NOW. Good luck.

Unfortunately the criteria for referrals is dictated by NHS Trust (hospitals/ consultants etc) via pathways and not GPs.
So a GP may want to refer but unless every symptoms box is ticked or blood results significantly outside of normal ranges the referrals are simply knocked back. GPs know this from experience so know what will / will not be accepted.

Am a clinican working in cancer and ( sadly) agree that too often pts aren't listened to. It is a GPs job to have the communication skills needed and not the pts responsibility to learn how to present a case in clinical terms in a 10 min appt. But the system remains set up as if it is.
There is no core requirement for communication skills to be taught in medical student training.
There is also a serious problem of certain groups in society being discriminated against.
All Drs are trained in differential diagnosis ie how to narrow down symptoms, what questions to ask, what tests to use, when to refer thru the 2 wk urgent pathway .
In cancer specifically there are flow charts all GPs are expected to follow.
So what to do?
Always write down your symptoms and speak to that so don't get sidetracked . Most GPs prefer this as saves time. Leave the notes you have written with the GP as it is a lot harder to ignore details where pen put to paper.
Take someone with as the wingman/ woman.
Just bearing witness will ensure some GPs pay more attn.
Get this person to take notes. That is a very powerful approach in any clinical appt anywhere.
If cant get another person take notepad and write down key words GP says.
The very best way to get listened to when on yr own is to drop some clinical non Dr Google terms into your appt because doing so makes all clinicians think ' this person may be a clinician so I must be more attentive'.
That one also applies to A&E.
If can access to any trusted clinician close to you get them to suggest some wording. I regularly advise ppl how to 'present' their case. AI will also be able to do this.
If fobbed off there is NICE guidance on what a GP should do - print it off if able and quote or even better hand it to the GP.
If assertive enough when a GP fobs off state you disagree with their opinion and want it written in yr notes that you disagree.
Then immediately rebook an appt with a different GP. Use NHS111 if cant get an appt because they have access to GP appts and after assessment can direct book ( a little known fact that all GPs have to hold back some appts for 111).
Some GPs are also trialling AI in appts where they record the pt thru an approved app and AI tells them what to look for.
The AI app used in my area is called Heidi.
You can download it as available to public in thevapp store then speak to it re yr / family symptoms and it summarises the case with next actions needed.
Really worth a look if anyone struggling to get listened to as it is a GP app.
Appreciate that many ppl dont have access to technology.
Some cancers are very hard to pick up as the clearer symproms don't present until the cancer is very advanced and that feels devastating.
But others can be and should be.

Sorry for long post
Hi, I had planned to do exactly that a few weeks ago, (take a witness and write everything down and bought book soley for this purpose) but this is very difficult as I'm on my own and usually get appt day you complete EConsult and get rang up by ANP/GP/whoever at practice so it can be short notice and friend may be away or at work. I also intended to write down what is said and would prefer a witness but this would be male as my best friend is male, married and Muslim but we support each other mentally. This could prove embarrassing for me and him so I'm still nervous about this. Also because I am often diagnosed with something but given diagnosis but no information or advice about the diagnosis - treatment etc, I end up Googling the condition on the NHS website - the Advanced Nurse Practioner I see does not like this and is forever saying "I wish you wouldn't google". Well why are the NHS factsheets on the system if they don't want you to use/read them? I feel so alone sometimes. I also recently had an episode of confusion - at home after returning from an appt. It was just the one and it may have been due to several medical issues but as I was worried I was experiencing onset of Dementia, I went to see ANP and referred to Memory Clinic - have been for initial appt some weeks ago and have a Diagnostic appt for middle of August. The ANP has informed the Memor Clinic Doctor that I have problems and getting mixed up with appts, diagnosis - not true which I asked the ANP about but she denied saying anything. I want to be examined by the Specialist without outside influence. I only ever mixed up 2 appts and attended one a week early instead of the other but had loads of appts at the time. I feel totally helpless having to depend on ANP on whether I get referred. I also have noticed, especially lately that the wrong information is often written inb the notes and letters I receive following an appt. e.g. last one - had Cardiology appt at hospital - the Cardiologist asked if would go to the Same Day Emergency Care unit in the local hospital and I agreed (Never knew it existed) - had several blood tests and heart monitored frequently through the day and alos given pain relief for terrible head aches I was experiencing. In notes it said no headaches ?? There are loads of examples of this and in isolation they may mean very little but in context with the amount of times it happens it is worrying. In all the jobs I have had throughout my life, we had to be 100% accurate with any reports and so it really annoys me because it means I am not being listened to properly and also people in charge of my Care are making mistakes. I really wish I had my GPs from years ago who always examined breathing and heart with Stethoscope irrelevany of reason for visit and often turned up at house without request from us, to see my father who was ill with Emphysemia after working in dangerous conditions. He would always ask how the rest of the family were and if we had any medical worries/issues. I get anxious about making an appt at GPs even though I have several serious illnesses. I worked from 16 to 72 (only retired due to the Bowel cancer as knew I would need plenty of time off for tests, operation etc and did not want my colleagues to know my personl health issues). I have paid intom the system bu hate having to depend on various medical people's moods/beliefs whether I will be seen or condition dismissed as not serious and then finding out it is e.g. my worry over heart in 2008 - GP -*it's indigestion" no it was heart - had to have triple bypass. Age spot said one GP in 2012 who could not even be bothered getting out of her chair to come and look/examine - I went to a drop in at Guisborough and Nurse took one look at the bleeding mole and told ne to go back to GP and "Don't be fobbed off". I did and another GP referred me to Specialist - it was Bown's diseas (form of skin cancer) which I had cut out. It had retuned and I had taken off again in 2023. along with Basal Cell Carcanoma on my nose which had worried me - just a very small spot but as I never got spots went to see ANP and referred.and diagnosed with another form of skin cancer. Last words and not mean to be derisory. I appreciate but don't really care about all the years of studying or exams taken - I know my body and if I say something is wrong, please believe me - I know my body better than anyone - listen to the patient and stop putting every thing down to stress or my age.

Get in touch with PALS asap and make a complaint, they will intervene on your behalf and make the GP fast track you, that is what they are for. It’s amazing how fast you are listened to when PALS are involved, they saved my eyesight!

@WhatMe123

so true, you only hear about cases when the system fails, same goes for many other things in life. You don’t hear about normal things because that’s not interesting or worth remarking on. My cousin had cancer last year and can’t sing the NHS’s praises enough but a post on here wouldn’t get many replied whereas a mother of 2 had her cancer symptoms missed gets hundreds, yet the cousin’s experience is the norm

@lowkey33

guessing you have never lived where you have insurance? It’s terrible, same issues exist except it’s insurers saying no and admin costs are through the roof. The USA pays a fortune pro rata for medical care out of the public purse (low income, elderly, veterans) yet has low coverage across the board.

I remember the first GP shrugging his shoulders at me and sarcastically saying I could be imagining my symptoms. That man made me feel like a time waster and embarrassed to make another appointment, so I delayed before I saw another one, she wasn't much use but at least was less patronising. A full year later at the 3rd appointment I broke down and this one finally suggested an MRI. Six weeks later I was diagnosed with a brain tumour and had emergency surgery. I still hate that first GP with a passion, it was the attitude that I was wasting his precious time. i literally shuffle in once every 3 yrs for a smear test, so hardly a hypochondriac.

Not cancer luckily but i think i likely have ptsd because of being dismissed so much re my then 3-4 yo who had severe bilateral ear infections. High 40+ temps for weeks. Tuned blue lipped went to hospital sent home. Only after more days of 40+ temps a different gp again looked in her ear and saw the bulging drum and got the AB. She had been crying with pain etc.
And consequences by that appt had a new heart murmur and permanently swollen lymph node.
Another time vomiting with a uti. Fine got 2/3 days AB. Of course it returned and more vomiting so luckily more AB but this time the uti test came back neg... But it did actually clear it.

Imo gp is almost like asking a nurse except worse because of more arrogance.

I need to see gp about several things but im avoiding it including
Needing pill to sort periods
Possibly going back on metformin
Needing thyroxine
Re 9yo night dryness.

It took about from suspecting adhd at 3 till 9 before i went to gp (covid in middle) because assuming i would be dismissed. Instead they did refer her (without seeing and still no hearing test).

But surprise surprise real issues with frankly awful adhd assessment. We have insistence ot must be asd (only?) No questions to dc. No plan of what assessment entails so you dont know how much more info they need. And a computer assessment that showed severe impulse issues and unable to follow instructions. But that didnt count! And also includes more weight to teachers (who may not even know the kid).

Over the years ive had my mum severely ill but been told shes fine as not pale (shes naturally french type skin) whereas at several a&e for others theyve thought i was ill more than the ill person as im ginger skinned!
Another time couldnt get my mum admitted with breathing issues via a gp but when in hospital they kept her a week. The exact same happened to my sister.

Whereas for others ive seen nhs completely overreact - person was too ill to do xyz the nhs threw everything at them (more rural area) absolutely nothing wrong this is like 5 years ago.

Realisitcally people will die many with cancer. But the day to day living with nhs has really affected quality of life.
A large factor of that is obviously AB but its just gone too far. A dr canr know if its bacterial and that is killing people

So sorry @LetMeGoogleThat Hope you are doing ok. If it's ok to ask, did you complain about the first GP and, if so, did he apologise or anything?

I think people forget GPs are people too, they are not some type of higher beings/gods that can see everything and see the future they do their best to try and work out what might be wrong from the thousands of issues, illnesses, diseases etc that there are, from sometimes very few generic symptoms, in 10 minutes.

They are people that care and spent years training to try and help people (I’m sure there will be odd ones that dont, I’m sure that’s few and far between and we shouldn’t tar them all with the same brush) and are now put under immense pressure from the powers above.

Yes not always will they pick up on everything every-time, and as caring humans that will affect them without people calling them for not doing enough. We should be grateful there are people that want to be doctors, nurses etc and try to help us when we are ill not berating them.

This is quite dismissive towards those who have dealt with healthcare professionals who have ignored them, made them out to be hysterical, delusional, attention-seeking, and:or incapable of knowing their own bodies.

Everyone knows they are human too, but they also know that as there are many that do their best, there are just as many who don’t or have unconscious and conscious biases towards people seeking their help.

There are plenty of studies showcasing this including those of what groups are often are treated poorly and more likely to be dismissed.

You've never had a doctor be dismissive have you? They told my parents that there's nothing wrong with randomly vomiting at night. That turned out to be epilepsy. They only did something after I injured my head during a seizure.

It turns out they knew all along what was wrong but refused to believe my parents.

I was very quickly told at one appointment that my condition isn't the cause of my pain because that's what outdated text books say. But no one can explain why so many people with the same diagnosis have similar symptoms

Yeah this isn’t how it works.

PALS have no jurisdiction over GP practices, can’t make anyone “fast track” something (hospitals dictate referral criteria, not GPs and referrals are reviewed and triaged by consultants) and are the Patient Advice and Liaison Service. Not a clinical assessor or intervention service.

https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

I’m tired of this constant doctor bashing! They are only human and will make mistakes. Their workload is horrendous and the hours they do. After many comments I’ve read on her I’m not surprised that many young doctors are going to Australia, where they earn more, do less hours and are respected for the hard job they do. Junior doctors are saddled with huge amounts of student debt as their degree is the longest and possibly the hardest.

Time we supported our medical profession before we don’t have one!!

I know this is a sexist thing to say but all these reasons are why I only see women GPs, unless I have no choice. My bad experiences have all been with male GPs eg not listening, not even being interested in my health concerns, not making eye contact, and it feels like they are more prone, if you’re a woman, to put things down to anxiety or your age. I know female GPs are not perfect but my overriding experience with them has been good, they’ve listened and taken my concerns seriously.

My MIL had terminal cancer, with only a few months to live. Very long & awful story, won't go into detail, will cut short. She was amazing, it was a horrendous illness, but she coped so well until the end. She decided she needed stronger pain medication about a month before she died, so contacted the GP and waited all day for a call back. When the call came, the GP said to her upon her request (in a mocking tone), "do you think you have terminal cancer or something?". She was obviously shocked, but just said "yes, I do actually". He hadn't bothered to read any notes before the call, there was no apology, he just quickly said he'd prescribe the medication and hung up. I was there at the time and she had the call on loud speaker - I was horrified. The whole family have had similar interactions with this GP, although bad, this one was the most serious. He's top dog at the surgery and ultimately deals with practice complaints as far as I'm aware, I guess that's why he's still there, I know we're not the only ones. I still feel upset about what he said to my MIL, I'll never forget it

That's right, they are only human and make mistakes. Unfortunately in their case those mistakes can have hideous, life changing/ending effects upon other people. When other people do their jobs and make mistakes with those results they are at best fired and even potentially prosecuted and imprisoned!

If we were more litigious about this kind of thing the knock on effects would be awful - I mean who would want to be a doctor?! However those deciding to go into the medical professions shouldn't do so unless they can accept the gravity of their own daily decisions and the effects those can have on other people, and therefore take more care than others have to take. There's no room to be cavalier in patient treatment. Having to be held to a higher standard is one of the reasons they can potentially earn very high salaries and prestige but there's no room for an 'off day', for being less than your utter best, for being half-hearted at any time. The consequences (for patients) are too severe.

They can and do intervene in all UK healthcare environments including GP practices, which would be very appropriate to do in this case. If you read further they intervene in GP practices too and can put pressure on GPs to make more appropriate decisions www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

I thought long and hard and submitted it as feedback, I did this purposely to remove their right to reply and to feel that I had a voice.

This is such a dismissive comment, on a thread where there is post after post of people sharing their experiences, many of whom have lost relatives or are dealing with the impact of the mistake. I'm so sick of being asked to be kind, or think about the other side.
Yes, the GP that shrugged his shoulders at me is a person, they may have been having an off day, But the direct result of him not listening or the arrogance of not referring to a consultant or ordering an MRI nearly cost my life and my children's only parent, so no I'm not going to be kind just because you felt the debate on this thread needed balance. If you are not a part of the solution, then you are a part of the problem.

Do mistakes include withholding important information about someone's health? Or telling someone they're imagining the pain because none of the prescribed medication works? Even though I'm not allowed a lot of what is normally prescribed

People make mistakes. That doesn’t mean people shouldn’t be accountable for those mistakes.

Regardless, this isn’t a thread about doctors making mistakes. This is a thread about doctors making intention, considered and explicit choices. The choice to think a patient is lying isn’t a mistake, it’s a deliberate action. The decision to not refer someone in line with NHS guidelines is a deliberate action. The attitude to roll your eyes or laugh or sigh when someone says they have a symptom that you don’t believe that they have is a decision - not a mistake.

Please stop conflating human beings making mistakes with doctors making poor choices because of bad behaviour, poor training, ignorance and God-complexes. It’s not remotely the same thing.

If a child told their teacher they were suicidal and the teacher did nothing because they thought the child was being dramatic, they’d lose their job if that child went home and killed themselves. If a child told a teacher that another teacher sexually assaulted them and that teacher did nothing because they didn’t believe them and the student had form for lying, the teacher would be fired if it turned out to be true. In fact, they may well be fired even if it turned out not to be true. Yet, if a doctor doesn’t believe a patient and doesn’t refer on the basis of deciding that patient is a liar, and that patient dies - there are no consequences at all for that doctor. It’s labelled as a “mistake”. It wasn’t. It was a deliberate choice - and the doctor should held accountable, not patted on the back and told everyone makes mistakes. Other professions don’t.

My GP misses cancers constantly. I've seen the letters, I'm a healthcare professional so have access to records. When I was sick last year I paid for all my own private investigations out of my pension fund and found I'd been dismissed and misdiagnosed for 40 years. I needed urgent surgery and if I'd waited for my GP/NHS to investigate I'd be in a wheelchair now. As it is I got my diagnosis and treatment straight away and I'm now fine (not cancer...orthopaedic).
I no longer have any faith in the NHS that I've worked for for 45 years.

What you’ve quoted is relating to making a complaint, nothing to do with PALS themselves.

I’ve been in primary care for 25 years and can assure you we have nothing to do with PALS. We have our own complaints procedure which can escalate up to the ICB and then NHS England if necessary.