To find "mummy knows best" is stupid when it comes to medical things?

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My cousin's little boy (nearly 2) has a rash all over. Her Mum took him to Dr who said it's a viral rash. Cue loads of photos all over FB of his rash, and lots of anguish from Mum going "Dr says it's viral rash, but I'm not convinced!" And responses if "mummy knows best, hunni, take him to the dr's again babe"
She comes back the next day and again plasters her boys face and rash all over FB, and goes "Mummy does know best! I was right, he's got Hand Foot and Mouth!"
With lots of supportive responses going "you were right to trust your gut, mummy knows best!"

Excuse me.

HFAM rash IS A FUCKING VIRAL RASH.

The Dr was right the first time...

Mummy didn't know best, just thinks she does because the viral rash has a name...

🙄

Ugh

*being generally unwell

I have the opposite to many PPs, but it still proves the point - my youngest is a massive drama queen about minor injuries and can give the impression of being quite severely hurt when he is shocked. I sometimes get a bit of side-eye for not rushing over to him or for just giving him a quick cuddle as he comes across as being mortally wounded when he's had a surprise bump. He even manages to throw up like he's bringing something from hell into this realm.

When he's quiet though, and comes up and gives me a 'look' and whispered in my ear, we might as well take him straight to A and E!

HCPs always ask my opinion though - why wouldn't they? Anyone who has a primary carer would be expected to proved a bit of context for what's currently going on with someone - if I wasn't able to speak myself, I would expect my husband to be asked questions about my general health, colour, temp etc because it's a really quick way to get to the nub of a problem.

@MissChanandlerBong81

But to be fair people who plaster pictures of rashes/injuries etc on Facebook ARE annoying.

So are people who start nasty threads on Mumsnet!

In some cases this is absolutely true. My sister was diagnosed with asthma when she was a baby, she stopped breathing once. When she got abit older my mum didn't believe it was asthma and thought it was her heart. She pushed and pushed for an ECG where jt was found she had wolfs parkinson white syndrome- where your heart has extra muscles so it pumps extra hard and can cause you to just drop down dead. It was operated on and shes now fine but thank god she kept pushing. But I agree it's not all the time and that was prob a rare case

If I hadn’t refused to leave a hospital with my 3 week old baby he’d have died of a very serious infection. Sometimes we do know best.

@Aimee1987 genuine question - is anything being done in unis and in training of hcps to address medical misogyny and other biases generally? It's kinda my soap box I will happily admit as the dismissiveness of certain hcps has caused me and my family much distress and possibly even harm over the years, I won't bore with the details

But since starting to learn about this in more detail and fully I'm aware (as an ex hcp myself and am ashamed to say I didn't notice this as a trainee) that it goes back to even things as basic as the "default" model for "a patient" is male and the male body - in text books, in training, even in things like dosages for meds (which often fail to take account of eg the difference in muscle mass between the sexes, between fat levels etc which - depending on the med and how it is absorbed and metabolised - can make a huge difference)

Then there is the fact that the same conditions can present differently in men and women - the most "famous" example of this is heart attacks but I believe also applies to several other conditions.

genuine question - is anything being done in unis and in training of hcps to address medical misogyny and other biases generally?

Well, I think the plan to solve misogyny in medicine is to remove women.

Womb-havers can't be subjected to misogyny as not all of them are women, so it's going to decrease complaints of misogyny dramatically when there are no women to be subjected to it.

even their older children

I agree - hadn't thought of this when I did my earlier post but dd is now away at uni, was on phone to her the other day and straight away I could hear she wasn't 100% soon as she said "hello" she has a disability which has multiple effects and she has to pace herself and not overdo things or certain symptoms will flare up, I could sense she wasn't taking as much care as she should be from that one spoken word and was straight away reminding her, she then admitted she had been overdoing it a bit and she had some symptoms (these wouldn't be things I could note over the phone)

Hopefully she is getting some rest, not easy she has a busy schedule between uni and work and some other stuff she has going on.

When I was 16 and had appendicitis, that morning my own mum actually kept me off school (she's never done this with any of us before or since) before I was showing major symptoms even I was like "it's just a bug I'll be fine" it wasn't until my siblings were home from school that I went properly downhill and I think she was starting to doubt herself actually, when I suddenly and seriously became very unwell and had to be zipped off to hospital. If I'd gone to school as usual I had a sport thing after school (swimming) and I'm all likelihood I'd have been in a pool when it hit! We've discussed this incident on occasion and she admits at the time she couldn't put her finger on exactly why she felt she needed to do what she did, she wouldn't have been able to explain it to a dr she just knew I wasn't quite right and needed kept an eye on. She thinks with hindsight she perhaps picked up on me being a bit more pale/warmer than usual perhaps? But she didn't consciously register that at the time. I just thought I had some indigestion initially!

Isn't the real issue here that in the UK, we don't have direct access to paediatric care (like in Europe or US), but have to battle through the overstretched GP or A&E system?

I agree that's a factor for sure, children also don't present with illness in the same way as adults, not least as they can go downhill frighteningly quickly from being "just a bit off"

My dd had febrile convulsions which even with my training I found terrifying certainly the first time! Particularly as she had literally been absolutely fine one hour and the next was fitting! It came on so quickly!

I also agree with those pps saying sometimes we may not know exactly WHAT is wrong but we generally know IF something is very wrong.

I had very little knowledge of dds condition prior to dx and certainly didn't have it "already in mind" when we had repeated visits to gps with the symptoms

Its been since the dx and learning about it that I've learned that actually a lot of things I didn't even realise were connected to each other are part of how it affects her.

There were certain things that kept being dismissed that I knew weren't right and weren't what the drs thought (her seeming clumsiness/carelessness is due to her eyesight being oddly affected, her lack of gross motor control etc, whereas pre dx they kept just saying "she needs to watch what she's doing" also the fact that despite this clumsiness she never BROKE a bone apparently should have been something of a red flag she likely had the condition according to the specialist. Plus I was sometimes present when she "injured herself" and her body's response far exceeded what was normal for things like missing the kerb or catching her knee against a toy or the coffee table - most people would BARELY have incurred a bruise with these things she had massive bruises and sprains and torn muscles etc!)

What I didn't know about (and I'm still learning to be honest) are that the way she reacts to infection etc are also part of the condition.

Before the dx we'd just get "well everyone reacts differently don't they"

They were clueless! BUT they wouldn't ADMIT it and refer her to specialist.

As it turns out there were symptoms at birth that should have indicated even to those drs that she had this condition - it's not common but it's not exactly rare either and she had pretty typical indicators

@AlyssasBackRolls they're trying to devise a device that can detect those smells that animals can re cancer, diabetes etc as screening tools, it's a while off yet I think but they're aware of the chemicals/smells involved and are working to get devices that can detect these early on.

I'm afraid that it's worse with certain conditions too and I think that's down to prejudices too especially when it comes to things like sen type conditions in children

In adults the main difficulties seem to be Gynae, and heart and gall bladder disease in women (because it tends to present differently to male patients partly BUT also because there is a FALSE belief that women are more likely to say pain is worse than it is!)

@DysmalRadius my sister has similar with one of hers! Total drama lama they are with the slightest bump! We are nc now sister and I, but when we weren't she did used to comment that passers by who didn't know them probably thought she was a heartless mum! Child is up bouncing about 5 mins later

@LonginesPrime oh I get what you mean! That's just one factor but yes certainly problematic

As an ex hcp myself whenever I see stuff on here or elsewhere that MEDICAL literature has been altered to no longer acknowledge the FACT that eg the only people that can possess cervices, give birth etc are WOMEN I roll my eyes and try to keep my temper!

Thankfully my own health authority hasn't disappeared down the rabbit hole as yet but it will be interesting when it does as quite frankly most locals where I live barely have a grasp on biology as it is, it lol confuse fuck out of them! And the ones it doesn't confuse will be "wtf is this crap?!" They don't mince words around these parts! - as I say it'll be interesting!

[quote Graphista]@Aimee1987 genuine question - is anything being done in unis and in training of hcps to address medical misogyny and other biases generally? It's kinda my soap box I will happily admit as the dismissiveness of certain hcps has caused me and my family much distress and possibly even harm over the years, I won't bore with the details

But since starting to learn about this in more detail and fully I'm aware (as an ex hcp myself and am ashamed to say I didn't notice this as a trainee) that it goes back to even things as basic as the "default" model for "a patient" is male and the male body - in text books, in training, even in things like dosages for meds (which often fail to take account of eg the difference in muscle mass between the sexes, between fat levels etc which - depending on the med and how it is absorbed and metabolised - can make a huge difference)

Then there is the fact that the same conditions can present differently in men and women - the most "famous" example of this is heart attacks but I believe also applies to several other conditions.

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Interesting you ask this is actually where most of my experience lies. My PhD and post focus were on sex differences. The bias in the literature is a personal bane / common complaint of mine.
In short is anything being done yes, medical funding councils such as the medical research council ( mrc) and the bbsrc here in the UK and the NIH in the states have said they promote inclusion and discourage the use of single sexes in studies but this is not stopping alot of scientist from using solely males because those pesky hormones get in the way ( ahh very annoying point of view).
In terms of teaching the students there is some stuff being done. I ran a seminar on white Male science and discrimination in medical sciences this week but the students had no ideas on it and little to no engagement. Our med students are judged on professionalism and they are to a certain degree thought about the biases but I dont think enough is being done.
Yes you are completly right that there are a number of conditions based on males that are different in females autism, strokes adhd come to mind but I'm sure there are more.
So I summary to my little waffle some is being done but in my opinion no where near enough.

@Aimee1987 thank you for your reply I'm really glad there are people like you working to address this

because those pesky hormones get in the way ( ahh very annoying point of view)

And incorrect! Men have hormones particular to their sex too! Honestly it's ridiculous!

Strokes is one of the ones I almost mentioned! My aunts first stroke was basically missed despite being a pretty bad one because she didn't present "typically" as in how a man would! This resulted in a delay in treatment (speedy treatment is CRUCIAL with strokes as I'm sure you know but perhaps others on thread don't - seconds can literally make a life or death or massive quality of life difference)

Maddening! Modules on recognising and correcting biases (we all have them) should be compulsory and I would say should have a role play element in them (although that's another thing that irks me about medical training - I don't think there's enough of this kind of training before they're let loose on patients)

Again thank you - for the reply AND the work

Six visits to several different places (a&e, GP’s etc) over two weeks it took to get my daughter seen at the children’s hospital. No signs of anything serious I was told, she might be grinding her teeth, see the dentist, maybe a minor ear infection. Once we got to the children’s hospital they did a CT scan and found top vertebrae that supports her head had twisted out of place! Months of physio, time in a surgical collar and eventually screws and pins in her spine to put it right. Mum did know best. I have several stories but this is one of the worst. I can also tell when we’re heading for an asthma attack but it’s impossible to get steroids over the phone or an appointment with a GP which ends up in an a&e visit which could have been avoided.

@Sirzy

I can always smell when DS is ill, I don’t know what it is but I can smell it

Same! I thought I was the only one! I have always been able to smell something indiscernible from my son when in the hours before he would go downhill rapidly. I was instinctively smelling him before I even realised that I did it!

Am amazed at the stories of mums being able to smell illness. Just think if the biology behind this was studied, how it could lead to better diagnostic techniques.

Am jealous that I don't seem to (consciously) possess this skill myself, but I have always had a deep maternal urge to sniff DDs head, so guessing this is where that comes from.

Tbh it seems dogs are FAR better at it.

"Mummy knows best" is what led to that awful Charlie's Army Facebook group, in which posters gave false hope to Charlie Gard's parents.

I think that was a breakdown in trust over a period of time.
Not the same as a parent being more aware of their own child's baseline "normal."

When DS was 10 and taken into hospital with a very high fever and a seizure , he was in a and e and the doctors thought he was much better as he was sitting up and talking in a way that seemed normal but I knew he wasn't talking or behaving normally for him. When I mentioned that they took me seriously and a doctor came to do some neurological tets which DS failed . They did an urgent cat scan and said he has inflammation of the meningial lining of his brain - ie meningitis

The decide to take hourly observations overnight and decide if he needed ICU based on those . In the morning he had improved thank goodness and passed the neurological tests. They still asked.me.if he seemed normal though which he did by then, though he was still very ill, he was himself in a way he hadn't been the previous day.

That consultant actually said to me that they always try to listen to parents if they say a child is not acting normally as they are often spot things before it gets to the point that a medical professional will see.it.

The smell thing yes, my husband used to think I was insane when I'd say she smells like she's getting something.

I think most mothers do have good instincts with regard to their children, and that can be very important. A friend of mine was convinced that there was something wrong with her baby, and she was told by multiple doctors that it was just colic. Thankfully, she kept pushing, and it turned out that the baby had a serious condition that needed to be operated on.

Having said that, my instincts weren't always right. On a couple of occasions when dd was little, I took her to the GP as just a precaution, convinced that she was OK, only to be sent to the hospital because she wasn't getting enough oxygen. I was very thankful then for their expertise.

Parents and medical professionals should work in partnership, each respecting the knowledge that the other brings.

Parents and medical professionals should work in partnership, each respecting the knowledge that the other brings.

That’s spot on

Nobody ever believed DS2 couldn't suck properly. He was wearing himself out and always hungry. Then at 4 months the HV, said try mixed feeding, he just ditched the breast apart from the bedtime feed, until 8 months when he ditched that as well. He's now 14 and still has trouble drinking from certain sports cap bottles.

I think that parents are the best people to know if something isn't right with their child and health care professionals should listen to that. After all, the parent knows the child best!

But as an HCP myself, I also know that I can't be objective about my own child, even though I have many years of clinical experience. This is why people who work in healthcare are advised not to treat their own friends and family. So there is a balance to be struck, I think.

I can see why the internet rallying cry on it could be annoying, but as a pp said, carers and HCPs should work together for an ill patient who isn't able to advocate for themselves and even for those who can, those around us sometimes see things in our health that we don't.

For most young children, that main carer is the mother.

When mine were little, their father was the main carer and there were times he caught things I didn't and had to advocate for them. Thankfully, most of the HCP were responsive to that, but there were a few as others said where their bias got in the way just as times us as parents, our bias can get in the way.

And while I wouldn't go all 'mother knows best', I would say that 'viral rash' was not enough information this time. Whether this was because of bias is hard to say, but the HCP should have been clear not only on what the condition is, but on the importance of telling those one has been in contact with, especially if any are possibly pregnant. I mean right now I have a list of viral conditions - all that produce rashes - that I have to contact the school if my family is in contact with because a child in school is undergoing cancer treatments. Just saying viral rash isn't good enough when it's one that has potentially has farther reaching consequences.

Yanbu re that mum’s irritating posts but Yabu in general. My GP has been wrong far more often that he’s been right. Thank god for the internet which has so often helped me get the correct diagnosis (usually with help from websites of American doctors).

Perhaps you’ve only met non-overworked non-distracted high ability GPs, in which case I’m very jealous. Mine can diagnose an ear infection but anything more complicated and he’s baffled.

Yes I am bitter. If he hadn’t spent years telling me my pelvic infection was psychological, perhaps it wouldn’t have destroyed my fertility.