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?

My DGF went to the GP over 10 times for a worsening cough and dramatic weight loss. Finally, one thorough GP sent him for a chest X-ray and his body was riddled with cancer. Oncologist said it was one of the worst cases he had seen.

He was dead the following month.

My dh was seen repeatedly for symptoms suggestive of under active thyroid and and even when his tsh was low was told it’s not an under active thyroid and to fuck off basically. 3 gp surgeries missed it over the years even when his goitre was huge.

At the end of the consultations I’d ask so what is causing all of this and they’d say don’t know and that was the end of that.

I was a HCP, it was pathetic.

It’s no better at work, eg pt needs paeds orthopaedic surgeon consult & they ignore the letter I write 3 times. Felt so sorry for the mum & if she sues they’ll see the different dates on all the letters. It’s endemic.

The rule of 3 is as old as the hills in Gp training in Ireland. You always refer on after a patient shows up 3 times with the same issue. I'm sure it's the same in the UK. Completely confused as to why they have deemed it necessary to bring in Jess' rule when the rule was already in place.

No because sadly this is normal when young women get brain cancer. They are routinely told crippling headaches, weight loss and nausea are normal/hormonal/imagined/mental health. The most the gp ever did was suggest she ‘go gluten free to see if it helps’. The date for the routine brain scan he finally sent her for at her husband’s insistence arrived 2 weeks after she died. Honestly you couldn’t make it up. In a&e they knew immediately what was wrong. Young children left without a mother because the male gp thought she was being dramatic. It’s also worth mentioning she almost never went to the dr so these persistent visits about the same issue over those few months were incredibly rare for her.

It’s embarrassing but required. My GP’s need constant spoon feeding and don’t seem able to think for themselves. I constantly have to advocate for myself as they seem incapable of doing referrals and following them up. Mine very much act like it’s not their job -l have even asked whose job they think it is!

True, but same with men too. It took around 3 years for my DH to be diagnosed with his cancer, after literally dozens of GP appointments, where he was constantly fobbed off. Once he finally got his diagnosis and we looked up the symptoms etc., it was blindingly oblivious yet a succession of GPs completely missed the obvious.

I had so many appointments with infections where I was crying and about to lose my job as I was always ill. So many blood tests
cried on a locum GP who sent me for more bloods, then actually opened and read every blood test I had, rang me and sent me to haematology that evening
I had virtually no neutrophils

Actually the referral pathway for tonsillectomy is determined by the ICB in most areas as there is limited funding and strict criteria for surgery. Neither primary nor secondary care have much say over it.

Yes it’s so frustrating to know you will be most likely fobbed off before you even go in and explain your symptoms. I’ve been in that situation (year’s ago now). Kept going to my gp with various but linked symptoms, kept getting fobbed off with you’re ‘probably’ rundown (yes but I’m not unwell because I’m rundown, I’m rundown because I’m ill, that ever occur to you mr gp!). Off my own and a friend’s back I went to A&E and lo and behold they admitted me that night and I was diagnosed with cancer!).

@Marlaysydney12 Sorry, what do you mean by tracking this?

Same thing happened to my mum. Several GP appointments for unexplained itching and weight loss over a year that didn't respond to steroids or antihistamines, eventually referred for an MRI, diagnosed with blood cancer and died within a month. I know they have protocols against over investigating and doing unneeded tests and I suppose they can't send everyone for tests for cancer but honestly some of these cases especially in older people feel like they almost don't think it's worth investigating. Like treating older people for cancer isn't cost effective enough so why bother with early testing? That may just be cynical because I guess the poor woman Jess was ignored because she was too young, but it's pretty frustrating.

With regards to endo, my issue wasn’t my GP (as I changed doctors) it was the wait for gynae
it took 8 years for diagnosis (changed GP) and from seeing the consultant to surgery it was 2 years. There is not enough endo surgeons, specialist endo centres etc etc)

my op took the full day in theatre too so the others she had planned for that day all had to be cancelled (she was meant to do 2 other endo surgeries)

Yes, I would agree with this. I used to work in medical complaints and some people are terrible at making clear exactly what their issue is, and also taking on board what a doctor says/not asking for clarification.

People swore blind they/their family member had repeatedly raised exactly what their symptoms were with the doctor, and then when listening to the call records (particularly during covid when there were far fewer in person appts) no mention whatsoever, or at best a one-off during a litany of other symptoms, and never mentioned again.

Either that or they say things like 'I've had a stomach ache for a few days, it comes and goes,' and then when asked for more detail say 'I'm not sure.' Rather than specifying exact place, how long symptoms have been going on for, whether it's getting worse or staying the same, if it coincides with anything else (e.g. after eating/drinking), what 'type' of pain it is, etc.

Equally common were people insistent the doctor had 'never told them,' xyz, when the medical records refer in black and white to repeatedly being told that exact thing.

Of course there are some arrogant/lazy doctors as well, and the example with Jessica is extreme and something should have been picked up - although if they aren't being investigated (not entirely sure how you'd even know that, as investigations should be private) then that's because the family hasn't made a complaint, which is of course entirely their prerogative and not for us to judge.

I nearly died last year after 6 desperate visits to the GP being told I had constipation and couldn't possibly have cancer. I remember coming back from those appointments and seeing the adverts telling you to talk to your GP and not ignore symptoms. I was diagnosed on my 3rd visit to A & E. This is an issue about women being dismissed and ignored and about some GPs thinking that their main responsibility is to safeguard NHS resources. I know it happens to men too. It happens much more frequently to women. I didn't have any underlying physical or mental health diagnoses, but they did comment that I 'seemed very anxious'. Well it is quite anxiety provoking when you're actually dying and they don't take any notice.

All evidenced by my written consultation notes on the online system used by the surgery, before anyone suggests I didn't communicate my horrific symptoms clearly.

I recently recounted the story (about 15 years ago) of a friends sister - early 30s. She had sever abdominal pain and went to A&E. They sent her home with laxatives as it was "constipation".

3 times.

She died of an ectopic pregnancy. At home. None of the different doctors thought to ask for a pregnancy test Now how come I know that it should be the VERY FIRST THING on a doctors mind for a woman (none of these pretend ones) of child bearing age ????

(Don't worry, it turned out that nobody was to blame, so that was OK in the end).

The problem with young people with unusual illnesses is that the clinical guidelines say they shouldn’t be referred as young people getting certain kinds of illnesses is statistically so rare that the rules say they shouldn’t be referred if they are young.

GPs have targets to reduce referrals. If they refer someone whose age doesn’t match it will quite often get sent back.

Obviously this is catastrophic for the young people who do end up having these illnesses. It’s a crazy ‘computer says no’ situation.

I’m not sure what you mean by if it’s not been investigated it’s because the family didn’t complain. Do GPs surgeries not do routine investigation when something clinically inappropriate occurs? In my line of work an internal investigation would be started when there were concerns about practice, there are clear procedures that outline the circumstances in which an investigation would happen irrespective of whether families complained.

Id think that 20 consultations that ended with no referral, a death by cancer and a reiteration nationally of referral rules would merit investigating by the surgery as part of their own self evaluation. It’s appalling that an investigation only occurs if someone complains, especially given the reticence of people to complain about the service they receive from the NHS (it’s free, people work so hard, it takes time and money from other people who need help). You’re saying that GPs can basically disregard the need to constantly review and improve their own practice.

My GP was excellent at giving advice about lifestyle changes, I tried GF at his behest, improving my microbiome, meditation, mindfulness, everything and anything. I did it all and felt no better and it transpired I had a serious condition that explained all of my symptoms. I only found that out by insisting on a referral through one of my other doctors.

The whole you’re to young to have cancer needs to stop in my opinion!

I was first diagnosed with cancer in 2011. I went to 3 different gps presenting with severe stomach pain and swelling in my abdomen. They dismissed it as a pulled muscle and gastroenteritis. They ignored it until finally the cancer caused my bowel to rupture and I found myself in enrergeny surgery and woke up with an ilestomy. In 2023, I visited 3 different gps with swelling in my neck. Despite my history it was dismissed as nothing. One even suggested I needed physio on my neck. Finally one gp decided to refer me to the hospital and I was diagnosed with a relapse of my original cancer - lymphoma. Luckily I had positive outcomes each time but I nearly died the ftrst time and required a stem cell transplant the second time around.

as with all professions there are good and there are bad

but a big problem is the defensiveness that comes when any GP is criticised - it’s automatically - we don’t have enough time, we see too many patients, we’re bit paid enough etc etc

whilst some of that may be true - it is also true that there are prejudiced, arrogant and/or lazy GPs out there and they need to be challenged by their colleagues and not protected

My Mum had a pain in her chest and shortness of breath. She was diagnosed, over the phone, by a GP who refused to see her, with a pulled muscle. She went into A & E in an ambulance, following a fall, and was told she had terminal lung cancer. She died less than a month later.

My father died 30 years earlier. Kept being told by the doctor that yes, shingles was painful, and could last a long time. Ignored the huge weight loss, pain in the chest and coughing up blood. And the fact that shingles can mask something else. My mother insisted on blood tests. Doctor said it was a waste of time “but if it will make you happy.” He was blue lighted to hospital that night with dangerously high levels of calcium in his blood. Terminal lung cancer, died six weeks later. Doctor said he didn’t consider lung cancer as my Dad didn’t smoke and had given up over 20 years ago.

We complained to the GMC about my Dad’s case. Got nowhere and found out afterwards that the GP’s partner was a big noise in the GMC.

Both doctors in same practice, one still working, the other just retired.

Oh and my Mum was told for well over a year that the pain in her chest was a pulled muscle.