To think the new “Jess’s rule” should be blindly obvious & it’s an embarrassment that we have to remind GPs this?

[Waitingforthesunnydays]

This new NHS initiative, “Jess’s rule” is supposed to remind GPs to “rethink” things if a patient has had 3 appointments and they haven’t been able to diagnose them with anything. AIBU to think this should be blindingly bloody obvious?! And it’s actually embarrassing that we’re putting up posters to “remind” GPs to get a second opinion or refer on for tests if someone’s had 3 appointments with severe symptoms and hasn’t got a diagnosis. The initiative is a result of the death of Jessica Brady, who was 27 & died of cancer that was missed by GPs in December 2020. She had 20 appointments with SIX different GPs at the same surgery. She was suffering from unexplained weight loss, vomiting, and night sweats which were steadily & significantly worsening. Yet she was told she had long covid (even I know these are not the symptoms of long covid) and was “too young” for cancer. She eventually paid for a private doctor who diagnosed the cancer but by that time it was too late, it had spread and she died 3 weeks later. Am I missing something by thinking these GPs are 100% personally at fault for missing this? Wouldn’t anyone in their right mind think to refer her for further tests if she’d had 20 appointments with six different GPs and her symptoms were severe and getting worse?! Apparently none of the individual GPs have been blamed or investigated at all. It’s being seen as a wider issue with the NHS in general - I really disagree that it is. I can’t imagine going to my gp 20 times and never being referred for further tests. AIBU to think this gp practice is the one at fault here and some disciplinary action needs to be going on?

I don’t disagree at all @ThePure but this thread is littered with people deemed at low risk of cancer who turned out to actually have it. Look at the number of young people now developing colon cancer - unheard of a couple of decades ago. I’m a grown-up, the decision as to whether I have a certain diagnostic test should ultimately be mine, based on appropriate medical advice and my circumstances. It should not be a rationing decision by a GP (and if it is, the patient should be told).

I find the NHS, and primary care in particular, very paternalistic in a “we know what’s best” way. With all due respect, that is not always the case. A GP hearing hooves and thinking horses is not much consolation if you are, in fact, a zebra. I have a disabled child in need of lifelong care and I will take the risk of (say) bowel perforation and annoying my boss over an undetected malignancy any day of the week. (The risk of bowel perforation is only about 1/1000 btw - I’ve had a colonoscopy every year since 2006 and am yet to experience one).

I suppose the optics of “there’s about a 10% chance that you do have cancer, but the NHS does not think the scan/scope/test to make us more certain either way is worth the candle” would not reflect well on UK healthcare or be an attractive position for GP’s to take.

It's an interesting conundrum from a psychological point of view.

It is considered reasonable and rational that there will be errors, misdiagnosis, false positives or indeed negatives and so many factors are involved, not least budgeting and protocols etc.

However, when one is on the receiving end of such, it's incredibly difficult to accept that "it's just one of those things" especially if the experience has included a cavalier attitude from the professionals involved, with good grace.

I've read some appalling stories on MN, which may of course be untrue or exagerrated, but the response when someone asks should I complain or what about compensation is usually robustly rejected with an air of "what do you hope to gain from this"? Personally I am sitting on a clusterfuck involving multiple agencies in both physical and mental health spheres involving my DF whose demise was ultimately and demonstrably hastened by multiple failings. I'm considering pursuing it once I can guarantee I won't just go full banshee at the wrong tone or immediate defensiveness, and my goal is not just personal - it's because vulnerable elderly people without advocates are likely suffering even more than my Dad did, and it beeds to be highlighted and examined.

It's a bit like the justice system as well, when people convicted on almost purely circumstantial evidence pursue proving their innocence after conviction. Should one really be expected to "take one for the team" if they are innocent? To protect a system which can be as prone to error or corruption as some cases have brought to light?

Obviously I'm talking about serious issues within the health system particularly, and it seems shocking to me in this day and age that things can go so badly wrong and yet be skated over with vague "lessons learned" rhetoric and little effective change.

My experiences with all official systems / authorities have been more negative than positive, and I have enough anecdata to fill volumes from friends and relatives in similar vein. While it could be argued that I may be the common denominator, it's not the people I've dealt with in the main, it is the system failures and the domino effect of trying to address that, at first as politely as possible, and then with growing frustration. The worst time was during the early days of lockdown when my Mum was in her last month of life, and palliative care went completely sideways, and accessing anything at all was nigh on impossible. At that point I did lose the plot with one GP receptionist who was so obstructive that the Practice Manager had to be called all because I wasn't allowed to drop off a poo test and pick up a prescription at the same time, despite the GP having okayed it. I was supposed to go home and my Mum had to ring for another slot, I couldn't do it from the car park. It was insane.

Anyway, sorry for the derail. I just feel very passionately that it's wrong that so many people suffer and die early because the NHS seems so broken at almost every level.

You make an interesting point. The NHS MUST ration healthcare in every decision it makes . It simply cannot afford to do anything else and users should know this.
If you want to be able to demand the type of tests / service that you want - then users need to be private .

For bowel cancer?? You can’t image a gas filled organ with ultrasound to my knowledge. It is not the first line of imaging for bowel cancer at all.

It’s a good post but there are some aspects I disagree with

So the risk of bowel perf is 1:1000
What do you think the risk of bowel cancer is at various ages?
You said in your example ‘there’s about a 10% chance’. In fact in any scenario where there was as much as a 10% chance you’d be investigated.
What if it’s 0.5 per 1000 which it actually is ie it’s less than the chance of bowel perf? That’s a more realistic weigh up.
I looked up the stats and the incidence of bowel cancer doesn’t get past 50 per 100,000 until you are over 45. https://crukcancerintelligence.shinyapps.io/CancerStatsDataHub/_w_cc8722d4b48745989f9a6f78cd8c082f/?inputs&nav=%22Incidence%20Breakdowns%20and%20Trends%22&app_select_CancerSite=%22Bowel%22&app_select_Country=%22United%20Kingdom%22

It is quite possible that the risk of having the test (or of a false positive in other less invasive tests) is greater than the chance of having the disease.

There are valid reasons other than rationing to restrict access. It is obviously your choice if you want to pay for tests privately but ultimately a Dr has to agree to perform that test and they are under an ethical duty to refuse if the risks outweigh the benefits.

I have a male friend who had a false positive PSA test and then a prostate biopsy ‘for reassurance’ by a private Dr. He got prostatitis from the biopsy which was very painful and is very hard to treat and he was in agony and very miserable for many months for a test that he should not have had in the first place. Iatrogenic harm is a real thing. More medicine is not always the best thing. People accept this in other contexts such as childbirth but it applies to all healthcare.

PS if you have a yearly colonoscopy then I assume you have a condition such as IBD that puts you at high risk or a genetic risk in which case the baseline stats of course do not apply to you. I am talking generally and not meaning to put you off your screening in any way.

I assume you must have knowledge in this area to post this so confidently. I had a 2ww referral for bowel cancer a couple of years ago and it was straight to colonoscopy. I have never heard of anyone having a US for bowel cancer in the U.K so I don’t think it’s first line here but maybe it’s something that is coming along. I am surprised that you could accurately image the whole bowel with ultrasound given all the gas but I am happy to be corrected if this is your area (it’s not mine)

One GP at my surgery has been up for disciplinary action for mis diagnosing 3 times. All they did was send someone to sit in his surgeries for a short time; now he is still practising his barmy ideas.
I have been misdiagnosed a few times. In the march of last year, I had an EEG, and I was not told there was a problem; my heart was not right, and a BP check showed my BP was way too high, to the point of concern.
From July, I kept passing out and basically was like a ragdoll, no energy, just sleeping a lot. After a bad collapse, a locum GP saw me, and he said my BP was so high I was close to a stroke, and THEY KNEW MY BP WAS WAY TOO HIGH NEARLY 6 MONTHS BEFORE! If I had not seen the locum, I would have been unlucky to have had a stroke or worse.
At the moment I am having a right battle with misdiagnosing me re HRT and the long-term problems with my bladder, but getting nowhere. In the meantime i spend most days in agony, incontinent, etc., but getting nowhere with the referral back to the Urologist. At the moment, they have put in for a gynaecology appointment, which is a waste of time, as they will just send me to Urology. I have waited 3 months for the gynaecology appointment, but it could be a good 6 months yet, then if I have to go through it all again for urology could be 2 years of this pain.

This.
Long gone are the days when you could easily see the same GP, I can tell you the names of our family DRs up until I was about 25, so yr 2000. Now, it’s a several week wait to get a phone appointment to see if you need an in-person appointment with whatever random GP has a space!
I think the ageing population is a big factor, our practice has a policy of over 80’s being offered an appointment the same week, the working age population has to take their chances!

And you didn’t think to go to maternity triage? Despite being 32 weeks pregnant with twins ?

My issue is that there are no consequences for these incompetent fuckwits that fob off or don’t listen to patients.

My GP had fucked up my prescriptions on three occasions now.

Once when I phoned to to explain there had been a mistaken I was patronised by the receptionist who basically insinuated I was too stupid to know my own perscription. I told them I would bring the previous one down to show them what dose I was supposed to be on and magically they fixed it. It took several hours and multiple phone calls and not one of these arseholes ever apologised for something that could have really harmed me had I not picked it up myself.

On another occasions I was told X is equivalent to Y dose when switching to a similar drug. A driver switch not a titrate up. No it isn’t it is half. Fucking half. I had to speak to the pharmacist to confirm then go back and get another appointment for them to do it properly.

No consequences again.

Then the bitch who scoffed at me when I was suicidal and pleaded that there must be be something other than an 8 month wait for therapy. She could have referred me to the crisis team but she didn’t because she knew I’d had private treatment previous and didn’t approve. I couldn’t afford private care again and didn’t know about the crisis team. I spent months in a terrible state and when I finally got to speak to a therapist on the NHS they were horrified and appalled. They were so concerned for me at the state I was in and referred to the crisis team on the day. I was actually harming myself while on the phone to them such was my distress.

Made a formal complaint and nothing was done. Again. I’d like to slap her into next week for being such a vile specimen . Fortunately for her I am law abiding citizen so I won’t. But my god she deserves it.

I deliver clinical training in a specialist subject area to trainee GPs. It’s a subject area they will see regularly in their practice but they receive little to no training on and have little to know knowledge of before we are in front of them.

Some of them are great, engaged, curious, interested to learn, ask questions etc. These are the ones who will also will go on to request specialist consultations with us in the future for support and to discuss the care of patients within this subject area - because they are not afraid to say ‘I don’t know everything about this so I will ask someone who knows more’.

Unfortunately, a significant number of them make it clear they do not want to be there, are not interested in learning, don’t believe they should have to learn this or are defensive about having it bought to their attention that there are things they do not know and need to learn. These GPs will go on to dismiss and belittle their patients within the specific patient group. They will not approach us for consultation for support or advice. Their patients will experience poor care.

I had a GP come to a consultation once who, when we asked for the patient’s history, interrupted us and said ‘I’m sorry but I’m afraid I just dont care about any of that. I don’t care why she’s coming to the surgery so often I just want to know how to make her stop’.

That’s disgusting but I wish I could say I was surprised. Can I ask if you pulled him up on it or at least managed to get the poor woman some sort of help ?

It’s very obvious so many of them have no interest in actually helping their patients or even interested in what’s causing the issue from a medical curiosity perspective.

In my career my area of expertise I find it interesting even if it’s broadl something I’ve seen 1000 times as no two situations are exactly alike. I want to understand before I advise clients.

That’s the difference.

On a better note I recently saw a pharmacist prescriber and it was like night and day. While he can’t “fix” a lot of what’s wrong with me he was engaged and interested. He wanted to actually go away and have a think/read some more to see if he could suggest anything new. It was incredible. He actually gave a shit. I can’t remember the last time I experienced that.

The same happened to me when I was 27. Kept going back to GP (more than 3 times) over several months with severe breathlessness, chest pain, passing out and wetting myself. She gave me a paper bag for anxiety and some antibiotics for a chest infection and eventually a chest Xray.

My mum made me go back home and got me an appointment with her GP. She sent me to nearest A&E with a letter saying I needed to jump the queue. I didn't leave that hospital for over two weeks. Massive bilateral pulmonary embolism and a stretched heart.

I kept going to docs for weight gain. I was eating very little and was very tired all the time. They didn’t believe me. Presumed I was eating more than I said. I even suggested it was my thyroid only to be told it’s very rare.

My thyroid cancer was finally diagnosed after I went private.

Straight away the female private doctor said let’s check your thyroid. One simple blood test showed something was wrong and an ultrasound showed the rest. It was an aggressive, rare variant which will impact me for the rest of my life.

I have a good friend from Greece. She was shocked we don’t have a yearly check up to monitor every thing.

I now see the NHS as a bare minimum ‘if I’m dying’ service, the country privatised its healthcare by stealth.

If you’re overweight or female (but especially overweight and female) it’s very difficult to get any sort of help.

I always like to think of GPs as the full name. General Practitioner.

They know a lot in general and perhaps don’t have a specialism.

They are there as a gateway, as referrers. It means I don’t have high expectations of my GP surgery and so am always pleased by the service I do get.

@Waitingforthesunnydays ,I have a male relative that died from undiagnosed cancer at 45,he had presented numerous times at gp, also at a and e, so not always the case that it's just women who aren't listened to if young.

Sorry for your loss. I think it's true that young people of both sexes get dismissed far too often, but young women get the double whammy of being young and female, which means they're even more likely to be fobbed off or not taken seriously.

I had a colonoscopy and then a small bowel UC so this reflects my experience to some extent.

What I find interesting is that so often in these cases,just one appointment with a private doctor gives them a diagnosis. I just wonder why so many NHS doctors don't manage this? It leads me to believe that they aren't doing their job properly!

Because there is an incentive - if as. Private doctor you don’t help your patients this is reflected when people don’t come to see you.

With the NHS this doesn’t exist as there will always be more patients and the goal is get get though/get rid of as many as possible to see the next one.

she knew I’d had private treatment previous and didn’t approve.

I’ve recently encountered this with a new GP. I think it’s a common attitude.

My Dad had a very rare condition, but I'd lived with it for 20 years, so knew it better and in more depth than most doctors (one in a million condition). I had a stand up row, in the middle of a treatment centre, with a very arrogant consultant, who insisted it was just the disease but I knew it wasn't. She walked away but she then, the next day, ordered scans and found the treatment had caused another issue and that the strokes I'd insisted he'd suffered he had! I know we are talking about second opinions but here I am also advocating fighting when your 'gut' tells you to!