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?

Apparently none of the individual GPs have been blamed or investigated at all

That is shocking

I also highly suspect that if she’d been a man she’d have been referred for tests on her first appointment. This is consequences of women’s pain not being taken seriously. They’re left to die

I think the need for this law also illustrates the lack of continuity of care in GP surgeries where you see a different person (sometimes not a GP, often an AHP) each time and are seen remotely. Noone can join up the dots as they are seeing you for the first time each time. I think the return to a more 'family doctor' type of care would help with this issue.

My new GP (mid last year) quoted this upcoming rule to me when she referred me under the 2 week pathway and I finally got my microscopic colitis diagnosis. After 20 years of suffering and the same blood tests over and over. How many times did I need to be told I didnt have gluten allergy (which is knew i didnt!)?

Totally agree. The number of women who are ignored, or are given diagnoses of exclusion without first having excluded anything, is unacceptable. The NHS is great if your arm is hanging off; it's terrible if you have something like an autoimmune condition or something else that requires further exploration and management.

I had a complicated illness years back and it was not just the uselessness but the disdain from many doctors that stayed with me. They were actively annoyed by me, acted as if I were being purposely difficult, and some flat-out thought I was faking or inventing illness. I have a real aversion to going to doctors now because of it.

When I presented with bleeding from the bowel it was 9 months before they did a FIT test, I went to the GP numerous times. I was told the criteria for a FIT test out of th standard age was high and if the criteria wasn’t met the test wouldn’t be tested!
If someone presents with symptoms that there’s a test for it should be done on the first visit

YANBU

The rule is just a PR thing, same as any rule named after a person/they're not practice changing just poster creating.

It has always been normal practice that if you see a person for the same problem a few times/3 is where it's at for anywhere ive worked, that you would ask a colleague to see or organise some further tests. It's medicine though, it's not an exacting science, there are hundreds of different blood tests, scans, referral pathways - we are never going to have the ability to pick up 100% of things early it's just not possible there will always be something missed.

If we actually wanted to make a meaningful difference and reduce error the rule would be allow GPs to have 15-20minute appointments, stop pressuring GPs to reduce referrals (to reduce pressure on secondary care), quicker access to referrals and scans (GPs in many areas aren't allowed to refer for MRI directly for example, this means referring into secondary care - waiting lists can routinely be several months/over a year). But all of that would be very costly which is why at present we just get a poster in the waiting room that won't get read.

YANBU. I’m fed up of lazy GPs being excused for not referring people. My mum went to the GP several times and was fobbed off with ‘just a virus’. Only when she went to A&E did they book her straight into hospital and diagnose her with terminal cancer. Fucking shocking, I always wanted to hunt down the GPs who turned her away and give them a hard slap.

The coverage of this awful case suggests that her appalling treatment was at least partly due to lockdown restrictions and that she had only 3 face to face appointments. This is not an excuse! Instead it’s an indictment of those restrictions so far as they prevented access to medical treatment, & of the continuing move to ‘remote’ appointments.

I do think there should be a very clear public investigation of how this happened & a report on it. I would like to know in particular what types of medical staff failed her. Were they doctors? Were they part time, in particular? (I have to admit I’m asking this because I suspect there may be issues about the standard of care & commitment offered by part time GPs).

It’s appalling that this is being dealt with by posters, not a public ‘lessons learned’ exercise that focuses on what went wrong in this particular case & how that may map on to shortcomings in GP services more widely. Because let’s face it, the experience of many people is that if it’s more complex than an ear infection or a sore throat, the GP thinks you’re a nuisance & does not want to know.

I haven’t read further about this case but on the face of things surely this rule would not even help the person it was named for in that she already saw 6 different doctors so she had 2nd and more opinions.

My mum (long complicated history) is incredibly confrontational with medical staff. It is very hard for them to figure out what is wrong as she is so reactive to even simple fact-finding questions.

Being able to see the same doctor massively helps with complex cases, you don’t have to start from scratch each time and they can see changes for themselves. Plus they can see the patient more as a complete human rather that symptoms.

Covid was incredibly tough with not enough medical staff and face to face appointments discouraged. It was always a concern the restrictions would mean serious diagnosis would be missed.

Why did you want a test to detect blood in your stool when you could already see blood in your stool (as I understand presented with bleeding from the bowel)? Surely the question was more like ‘why do I have blood in my stool’ rather than ‘do I have blood in my stool’. FIT tests are for screening asymptomatic people not diagnosis hence you were refused one. Wasn’t what you actually wanted a colonoscopy?

The GPs I know are questioned by commissioners about pretty much every single referral to secondary care that they make.

Well, if they actually follow this new ruling we should see an uptick in referrals to Gynae, and a reduction in duration of time taken to diagnose endo. Otherwise we can conclude that nothings changed.

You’re right this is lunacy that it’s not already commonplace. In what other workplace could you keep passing off a problem you didn’t understand without consequence.

It is absolutely obvious I agree but we know the health system has a tendency to fail women in this respect so to see it overtly named is, IMO, progress towards taking women's pain seriously as there is less justification for dismissing pain as neurosis, anxiety, hysteria blah blah.

I'm sure many of us have a story - my sister's colleague (early 20s) repeatedly visited her GP with breast pain & lumps saying she thought it was cancer. Was told she was "too young" and they wouldn't even test under 25s as it was a statistical improbability. Days after her 25th birthday she went back, insisted on a biopsy and was diagnosed with breast cancer.

Naga Munchetty's account of her condition and the response it got bears this out. Someone who is assertive and confident, which many people are not.

I had exactly the same experience as Jess 20 years ago. The longer it went on, the more the GP’s (except one) seemed to double down on their completely wrong diagnosis (IBS caused by anxiety - because I was single, female and had a career, which apparently means that I never get anything wrong that isn’t MH related). 🙄One day I was sent away with a flea in my ear by an arrogant fuckwit of a GP. I had asked him how I was supposed to work and pay my bills when in this much unmanaged and undiagnosed pain. His response - basically, harden up and get on with it - led to me passing out at the wheel of my car when driving.

This rule will hopefully empower patients to demand better and more prompt treatment and referral, but it will do nothing to fix the problems with continuity of care by mostly part -time GP’s or the ridiculous logjams in secondary care.

The whole model - both GP’s as gatekeepers and the wider NHS - is way beyond repair ime.

I understand why it is the case, but I do marvel at the difference between private and NHS care.

I’ve started with heavy but still painless periods. 6 weeks from raising this, I have an MRI booked (following an ultrasound) to investigate endometriosis, which I don’t think I have. I still haven’t got my tranexamic acid prescription from the NHS.

I get the NHS can’t afford unnecessary MRIs for everyone, but having heard stories from people who took years to get an endo diagnosis on the NHS, it can’t even be about costs, as they took up so many appointments on their way to diagnosis it probably cost more than my concise private process.

In Jess’s example, she must have seen one GP at least 4 times, so it’s not even that continued care from the same GP would’ve hugely helped. GP’s should be the gateway to secondary care, not the gatekeeper.

Both my DF and my MiL died of bowel cancer that was missed by GPs. MIL was told that bleeding was ‘probably piles’ and although she suspected that it wasn’t, she was of the generation where the doctor equalled God, and didn’t like to ask for a 2nd opinion.

My DF’s abdominal pain was apparently ‘not in the right place’ for bowel cancer, so despite a loss of weight, too, he wasn’t sent in time for further tests, either. Yet my DM - same generation as MiL - almost worshipped that GP.
This was all decades ago now - you’d really hope that things had changed…..

Well exactly.

Of course YANBU, but the very reason we need this rule is to put checks and balances in to prevent institutionalised medical misogyny killing people.

One thing a I wonder, is if someone is finally diagnosed by A&E, after bring fobbed off by a GP multiple times, if the GP gets a report of their misdiagnosis? Shouldn't there be a way of tracking this?