NHS England: Primary care patient safety strategy: Jess's Law 3 strikes and we rethink’.

[Haveyoutriedyoga]

Diagnosis: Jessica’s story
As told by her parents Simon and Andrea.

“Our precious daughter, Jessica, died on 20 December 2020. She was 27 years old.

She had been ill for 6 months, but the spring/summer lockdown meant face-to-face consultations with her GP were restricted and numerous antibiotics were prescribed, even in the absence of a physical examination. Jessica was told for months she was suffering from Long Covid despite two negative coronavirus tests. She was finally diagnosed with cancer on 26 November. Her dependency upon oxygen from this date meant she did not leave the hospital or ever return home. We discovered that Jess had stage 4 adenocarcinoma with an unknown primary. It had spread throughout her body, to her spine, liver, stomach, lungs and lymph nodes. The scale of missed opportunities, misdiagnosis and distress Jess experienced is heartbreaking. Jess was fighting two battles; on the one hand coping with her debilitating symptoms and on the other persuading anyone to listen to her. Jess was exhausted and, even at her lowest ebb, was forced to advocate for herself. Her eventual diagnosis was made via a private referral. We are obviously devastated.”

Jessica’s parents are campaigning for Jess’s Law. The premise of Jess’s law is: if after 3 consultations a patient’s condition remains unresolved, or their symptoms are escalating and/or they have no substantiated diagnosis, their case should be elevated for review and a new assessment made: ‘3 strikes and we rethink’.

They are petitioning to improve the awareness and diagnosis of cancer in young adults and have set up the Jessica Brady CEDAR Trust, which raises funds “to support earlier cancer diagnosis within primary care”.

https://www.england.nhs.uk/long-read/primary-care-patient-safety-strategy/

 

[Haveyoutriedyoga]

Would hope if this was implemented then something would be put in place to mitigate the risk that a diagnosis of medically unexplained symptoms or a vague syndrome is made just to avoid triggering it…

 

[bobbler]

Would hope if this was implemented then something would be put in place to mitigate the risk that a diagnosis of medically unexplained symptoms or a vague syndrome is made just to avoid triggering it…

Yep I agree. If they leave that loophole in they could inadvertently make it not just more likely, but more covered up too. Unintended consequences of targets. 'do something' when the clock hits 4hours even if it was discharge is something ringing in my mind.

What options are going to be on that drop-down menu for GPs that aren't 'send away for 2 weeks assuming stress' and don't have closed lists for most departments that would fit it, or won't find the ICB rejects the referral 'because there is some new over-stringent criteria for x scans'... so IAPT is all they can offer ergo that becomes the diagnosis. There seems to be a tail-wags-dog where when the demand really isn't fitting the resource (and because the CCGs were part of those choices so feel responsible) what people see something as and gets diagnosed is what is supply-led on offer treatment-wise. And some of those represent even more problematic cul-de-sacs.

UNless it is a red flag issue. I know lockdown was a bit unique re: some cancer services, I also know that in the past there were in particular some female cancers that were really commonly missed like ovarian even when the patient themselves were sure something was really wrong. SO there are so many possible classic problems going on here.

I haven't seen the detail of this, and at first thought it was from Australia, but in the UK my question is whether we've many/any decent doctors being trained into a service that seems to be lacking which is a sort of specialised diagnostic level above the GPs who have been disempowered. Of people who have a lot of biomedical training, and no beliefs in the functional nonsense.

I also couldn't help but think and read back to double check that her demographic and all the functional type bla sold about that weren't part of it. BUt you can never be sure, even if it was combined with just terrible timing of the lockdown and having certain conditions.

I think that the MUS pretending it is 'a diagnosis' to remove someone from being taken seriously is a major issue. It just wouldn't have involved someone being given antibiotics and that's the only reason I pause.

It is very worrying how undiscerning or lack of oversight there is regarding anything now being able to be pretended to be some diagnosis or syndrome when it really means a coded veiled 'don't investigate' - and the legal consequences of that pretending as long as it was best intentions and 'I didn't know' not really holding those inventions to account for the harm they are responsible for.

I'm still astounded that the NHS gets spiel saying 'it has the best data' bla bla, when if someone gets dumped into any of these crappy diagnoses and even then manages to find a way to eventually prove it was incorrect or dies there isn't a requirement for it to be logged against that illness definition as a watchdog situation. Or those who were misled into making it never being informed just how many turned out to have something else further down the line which could have been treated earlier.

That information is what I assumed would be good data until I found out how things worked. Info that learned from itself so that if certain categories had a problem of being a dumping pot a lot of serious things were getting landed into then there were additional warnings at least to exclude those as differential diagnoses. It was a shock when I realised not only doesn't that happen but .. well we all know the rest.

 

[Ash]

Yes @bobbler


There’s no established feedback loop to inform doctor that they were wrong to waste basket dump their patients, into MUS FND CFS or plain old anxiety disorder. Or to leave them with un-investigated Long COVID. To leave them with undiagnosed cancer.

Doctors continue to waste basket and psychologise their patients for many reasons. But one of these is that they seem to assume that if something was wrong with their approach it would blow up in their faces more often. But it rarely does.

Patients usually move on looking for better care, or sicken and die much more slowly than where a young woman like this one dies so quickly of such an aggressive disease.

Edit: grammar and word mistakes.

 

[rvallee]

At the very least if this included proper recording, it would clear up a lot of the false data made up for psychosomatic beliefs and used to cover up systemic failures. It would also expose many flaws in the system.

It's one of the most disappointing thing in health care: the lack of data. It's so poorly handled and haphazard. And it's ironic because health care is drowning in paperwork and bureaucratic form-filling, and yet accurate data about the patients themselves is almost entirely missing out of it. It's all process and compliance.

So much noise. Too much data. Much of it inaccurate. So little of it is useful.