Women’s Health: Why do women feel unheard?
Health and Social Care Services Research
23.11.22
doi: 10.3310/nihrevidence_54676
The recent Women’s Health Strategy for England reported that more than 4 in 5 (84%) women responding to their survey had at times felt that their healthcare professionals were not listening to them. The finding was echoed by recent focus groups. We need to understand why this happens. Why don’t women feel listened to? What can be done to improve their conversations with healthcare professionals?
Meaningful conversations between patients and doctors are fundamental to shared decision-making, a central part of good NHS care. People should feel listened to. They need information to make a decision, and time and support to understand it. However, we know this does not always happen.
Healthcare professionals are time poor, and are often unable to spend as long as they would like with each patient. The time they do have therefore needs to be used well. Research can provide insight into how to have good conversations with patients.
Women's Health Strategy for England
Government Consultation on Women's Health Care
Why do I feel so awful?
Why do I feel so poorly?
Why do I feel so bad?!!
Thank you. I guess it doesn't help when a GP says your dose will be reduced, and in answer to "Do I get any input into this?", replies "No". .......Not a lot of discussion in there.
Indeed, this is more the norm for most of us...horrible, wounding, dangerous experience.
Under the Women's Health Strategy, they're introducing 'Personalised care' which they hope will give patients "the same choice and control over their mental and physical health that they have come to expect in every other aspect of their life. "*
Here we are in 2022, with the Sex Discrimination Act nearly 50 years behind us, and they've only now discovered that women get a worse deal than men out of the NHS. To my mind it's negligence of the highest order.
england.nhs.uk/personalised...
*a tacit admission that they've got it so wrong for so long?
I suspect in part that it's also how we approach medical care? When we're not well, we are looking for help, and are not necessarily in the best place to be self-assured if we face difficulties in "being heard". Foggy brain can get in the way of expressing what is /is not happening..... and also in our own "hearing and understanding" of what we're being told.
Perhaps the role of a Health Care Advocate would be useful at times when we don't feel we are able to advocate well enough for ourselves?
Really excellent points. For so long I've wished for a knowledgeable HC advocate for all the reasons you give. Of course, PALS would say they do that. I've had some great, empathic PALS advocacy but they're really only on one-off issues, not in with an ongoing condition needing continuing face to face appts with both doc and patient. I guess the NHS would say it'd be too expensive to pay for a whole army of HCAds. Also, if they do actually implement good Personalised Care and Choices then would HCAds be needed? they can't possibly be thinking of fitting PCC into a 7min consult, or can they?
I have a quibble about our cognitive and verbal inadequacies as poorly patients being any good reason for not being heard. Surely that's the physician's job to understand the patient's problems, ask searching questions and make things clear, simple to understand? But I can't remember the last time a doc asked me any searching questions! It seems like these days you're expected to go in with a list of sx and - clickclickwhirr - they come up with some sort of solution. Done and dusted in 7 mins. But not if you're poorly! We poorly people must be the bane of their lives! LOL!
At one time, I took to using a voice recorder but they REALLY didn't like that. Then I took a notebook and painstakingly , slowly wrote everything down....they didn't like that because of the time it took.
I understand your quibble.... and in " ideal life" we would still have the old-fashioned family Dr who knew you, your parents and quite possibly your grandparents, aunts, uncles, cousins too
But, that "life" is mostly in the past...and not simply because those old-fashioned family Drs are now mostly in medical centres, and don't necessarily see the same patient each time that particular patient needs help....we too have changed. Not many of us still spend our whole life in the same place.
We as patients have to accept that there are time constraints on each appointment. I'm not saying that's good, because I feel it isn't....but it is as it is. The best way we can help ourselves is to be as clear as we can, as to why we are seeing the Dr at all, before we even go near the consulting room.
Write down what we need help with. If we're feeling overwhelmed, we need to see if we can find someone we trust to go along with us, to listen to what is said to us, and speak on our behalf if we're not doing it well enough. I know not everyone will have such a trusted person, which is sad, but true.
Yes, of course, we're looking back to the way things were. Sufficient time is a core issue, I feel. Goodness knows how they're going to implement Personalised Care though if they don't make more time to discuss needs, preferences, alternatives etc. What to do if you don't have a trusted friend etc to speak for you? I don't where I am now, and I know too often I've been simply unable to string a sentence together and they don't have time to wait for one to get it together....
I totally agree. When I was at my worst I was a zombie because GP had put me and left me on 25ug of levo for 6 months. Could barely string a sentence together let alone coherently explain the problem- her mismanagement! Luckily my hubby could. Just by showing her the drugs info sheet and listing off how I was so ill and how out of character this was, he was able to secure the first of my dose increase. I had a window of cognition that was just enough to read up the basics and gather together enough info to argue for the next dose increase. Then I had a battle to get the increase to 100ug and then by this stage I knew I was in for a battle to get on full replacement dose. At these latter stages, I produced the written reports with data worked up explaining where you sat in the range was more important than just being drop kicked into it. Also flagged the symptoms provided the fine tuning and of course supporting references .
But here’s the rub! I could not have done any of this without my hubby’s intervention when I was already ‘too far gone’. I couldn’t drive, I couldn’t make a cup of tea- I was an utter mess. It would be far quicker to plug the wholes in their training, but how to do it? They are so indoctrinated and arrogant in the main.
I'm so glad you had your husband to advocate for you. It makes all the difference. Like you I've been that utter mess....it's taken nearly 18 months now to get as far as I have, and it's still a mess. It's the indoctrinated arrogance that is so destructive. Is such a mindset amenable to training?!
Hi Levo,
Seriously- I do wonder🤔. It’s finding enough people who are prepared to put their head above the parapet. I was watching something today and it mentioned a quote by Max Planck
“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”
Ironically our situation is not a new scientific truth, but rather one that has been tacitly ignored for decades and a great shame on the medical profession for doing so.
LOL! I have a 35 year relationship with Max Planck! A little puzzle involving the Planck length, time and consciousness. I'm still playing with it (when I have a bit of brain power. These docs have no idea what they're taking away from women px when they so carelessly dismiss, undertreat and misdiagnose us.)
It's so interesting that science and, by extension, medicine - used to be so much more open about their discipline's pitfalls. Can you imagine a scientist or doctor today writing something so revealing (unless they really want to be ousted and ostracised by the industry!)
Here's a favourite from Sir William Osler (late C19-early c20) Canadian doctor and professor of medicine. He's credited as 'the father of modern medicine'. He taught trainee docs, "Listen to your patient, he is telling you the diagnosis."
It's the 'tacit ignoring' that I consider to be tantamount to medical negligence. I don't have much respect for the clinical and diagnostic skills of too many of them. But I rather think that it's much more respect than most of them have for women px.
Getting people to put their heads above the parapet (and especially women) is a whole other matter. This Women's health - let's talk about it project only drew c. 100,000 responses from a population of ?67-70 million. Honestly, I think we live in fear of docs - we're forever propitiating the NHS gods because, instinctively, we know they can do so much damage if we rub them the wrong way. Whilst they call their whoopsies 'excessive patient expectations'.
[Edited to make Osler's dictum stand out....I think it's simply that important - and I'd like a button made of it to wear every time I have to engage with a doc!]
"He/She who holds the prescription pad/computer mouse holds the Power" ? to paraphrase someone I can't remember who...it's late and I'm off to bed
Night Night
🤣👍
I think this is the first time I have seen this women’s health project- which goes to the core of the problem. How do we look for something we don’t know is there ?🤔. Lightly publicised lightly engaged with.
I have dealt with 3 doctors who actually questioned my need for a dose increase because I was ‘in range’. First was a verbal battle- which I won but the next two I managed to harness report writing, working up the data to coherent tables and better still a graph!😂
I interpreted my own blood tests, related them back to symptoms and proposed the next dose increase. They were invited to refute my logic. I wish I could approach one of those doctors to start the conversation- but I don’t trust them! How mad is it that doctors routinely drop thyroid medication dose when the patient reports feeling well!?😞 I just don’t trust any of them.
I won out and when I read the lived experience here I thank god I’m a ball breaking bitch who won’t take no for an answer- but here is the most scary thing I’ve ever experienced - on 25ug for 6 months I couldn’t have argued with a jelly baby. It was only having hubby on my side fighting for me at the start that got me the 50ug that fuelled my recovery. I have never been helpless until that time - I will never let a doctor put me there again- ever…..
Graphs and charts are great!
But make sure they are EXCEEDINGLY OBVIOUS. Correct but well chosen for the point you want to make.
Below a picture of such a simple graph. I have no idea what the subject is but it's obviously serious and going UP fast!
Hi helvella,
I think my graphic display of FT3 probably would have flown over their heads, bs baffles brains. Not that it is but they would not have known that. 😂 I did walk them through my results and interpretation on the last two telecons and had submitted the report a week before so they had chance to chew it over if they wished.
What it did show was a lurching of dose against concentration in blood over time and it showed it was far from linear. For me, I think this is useful as it would have highlighted the necessity to listen to my symptoms, which I recorded in a dispassionate manner. I recorded them in real time against dose increases, not only symptoms disappearing as the dose increase kicked in, but also how symptoms reappeared as the dose increase wore off, was an incredibly useful part of the story and was in a context that they could understand.
Sometimes it seems that you don't need to persuade them by logic. Just present something they don't readily understand but are unwilling to admit that they don't!
Ha!
Oh they never actually admitted, they just realised they were out of their comfort zone and acknowledged once you have a doctorate in one field of science you can read up in another with relative ease. The fact that numerous people on this forum have a far greater knowledge in this field than I and do not necessarily hail from a scientific background makes me rather uncomfortable- it speaks to their inability to recognise knowledgeable people and their knowledge, however it was acquired. In fact more respect should be given to self taught as the journey is far harder, just as I hold anyone who has done a degree via the open university route in esteem.
exactly ... i learned what i know now by reading thyroid papers three words at a time .. having to go back to the beginning of the sentence three times, or more.
as time goes on it gets easier, (as you fix yourself by stopping them messing your dose up !) and as you develop a grasp of the basics so you don't have to trawl your brain to remember if TSH goes up or down with low T4 every time you read something.
.. and i'm one of the lucky ones .. i 'm basically pretty 'able' in maths and english and logic , and i'm naturally a bit 'OCD' about fully understanding how things work for myself ... so even without having any 'Further Education' qualifications..... i could manage to understand this stuff without too much of a struggle .... but there are folk on here who are dyslexic.
Truly ALL those patients who have managed to teach themselves any of this stuff, and have expressed an interest in it to their GP's deserve maximum respect from those GP's~ many of whom it seems have not had the interest to read anything other than what they have been spoon fed on the subject.
(Well , no FE apart from an NNEB , a chainsaw ticket, and an RYA 'day skipper' ticket . so i'm qualified to take children out to sea in canoe carved from a log )
Argh! you’re brilliant Tattybogle!
You know- I know the gap in their understanding re drop kicking people into the range. They have never been taught stats or had to analyse data from their own experiments. They wouldn’t have to in truth, but I see the gap as clearly as a jigsaw piece and yet I am so lacking in trust I cannot bring myself to approach them for fear- yes genuine fear of being punished and having my dose dropped. I had a similar experience with ABs I was taking. I’m not a fan but for years I had been suffering with UTIs and my old GP had wanted me to take an antibiotic a day for the rest of my life he had the not unreasonable fear I might get damaged kidneys. Obviously having them daily out of the question, but he was good, in as much as he let me self dose according to when I got those early signs.
Then my current GP stopped them dead.
No discussion. It was done in retaliation for me having stopped another doctor dosing mum with ABs when she did not have an infection, or temperature, or any symptoms thereof. She was breathless owing to her heart failure. 🙄. I had asked the doctor why ABs? She couldn’t answer, so in lieu of having a clue she just wanted to stuff patients with ABs. I told her not to if she didn’t know why she was prescribing them. A friend in her 70’s had just been hospitalised by another twit in the surgery pumping her full of ABs repeatedly because he didn’t know what was wrong. Actually hospitalised by the side effects of too many rounds of antibiotics 😱.
Anyway there you are- she had a spiteful triumphant “I’ll teach you” look on her face. When I asked if that meant I would have to have a full blown urine infection every time I needed antibiotics- she smiled and said yes. I knew where it was coming from. I had only stopped the duty GP from pumping mum with ABs a couple weeks earlier. Actually she (my GP) did me a favour. So I went and researched in earnest and found D-mannose - no problems since and no ABs for 5 years plus.
Going back to my mum? Well, she was fine the next day without ABs (they used to knock the hell out of her system anyway). Shower of.. you know 🙄