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.
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.
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?!
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…..
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!
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 )
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 🙄
I guess I’m one of the lucky ones….. I’m always listened to and have really good discussions with my GP. I can always offer suggestions and she understands I have knowledge about things and never dismisses me. She has been my GP for over 20 yrs so that helps. However, I recently had to speak to another in my practice and she was great as well 🤷♀️. I never feel ignored
Not a gender issue, I don't think anyway....it's more a "person" issue. Depends on whether the person of the GP is willing to communicate on a level footing, respecting their own field, as well as the experience of the patient before them?
I've had many GP's over my lifetime. some male and some female. ..some friendly, some not so, some open and some closed..... and not all of the open ones were female, and vice versa.
My old GP who I had for 30 years was excellent, but she retired last year. Her replacement, I'm sorry to say, also female, was rubbish, patronising condescending etc. I actually asked to be put under a different GP as I really disliked her. I think it depends on the calibre of the doctor more than the gender.
I don’t really think it is gender. I’ve had great doctors who were male and good but more often lousy doctors who were female - in fact the one who told me I ‘needed my holiday’ when I actually had Graves’ disease and more recently the one who told me that at my age my low back / pelvic pain was ‘probably a touch of osteoarthritis’ when in fact it turned out to be a sacral insufficiency fracture - both of them were female GPs. I think it’s the luck of the draw.
Thank you for posting this, very important for women and our families. I'm considering volunteering to be one of their NIHR reviewers. Mainly because, despite all the warm, fuzzy rhetoric, there still doesn't seem to be a way to dialogue with these people on any sort of regular basis to help shape their strategic planning and implementation.
I wouldn't dream of in any way pushing someone to do so, but someone has to volunteer. My hat taken off to you if you do. (Don't feel the need to say anything about your decision unless you want to.)
NIHR Evidence Alerts are short, accessible research summaries that are part of an initiative to increase the practical implementation of research results. They are written for the audience best placed to act on the evidence, including health and social care professionals, commissioners, patients and the general public.
Why do we need reviewers?
Obtaining short reviews of research publications from health and care professionals as well as patients, carers and the public, is crucial in helping us decide what research is developed into an Alert. We really value your view on the potential impact of NIHR funded research and what evidence should be disseminated.
Please note that if you are registering as a public reviewer, we will be offering a small honorarium payment for each of your completed reviews. Please see our Payment Policy for further information.
What does being a reviewer involve?
As a reviewer, you will be asked to read the abstract of a published paper in a research area of your interest, for example, mental health, cancer or social care. Once you have read the abstract we will ask you a few questions to determine your view on the paper’s findings. We expect a reviewing task to take between 20 and 30 minutes. It is important to note that reviewing tasks are not compulsory and that you can always decline an invitation to review.
Thank you for posting that link, helvella. There's a long list of disease/disorders you can pick and choose from. So you can focus on your own ailments and those you know about or want to learn about. It would be great to have a group of people sign up to do the endocrine section - maybe push the NHS along a little bit?! It's only abstracts which are more often 300-700 words only. Not like reading a 10 page paper.
Bonus! I'd not noticed the bit about the honorarium. Not sure I'm so keen on that. It makes a contract and, as yet, I don't know what the reviewer side of the contract actually entails.
Thank you very much for your support! I'm going to do some more digging around to learn more and whether that's the most relevant place to be in the absence of other routes. Maybe it's a start! I'll drop a note here if I do get involved.
1964 Married Women's Property Act is pretty recent until then arrived women had very very limited rights to family assets ....so given that its hardly surprising that we are the Second Sex as Simone de Beauvois put it
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?
You don't understand hormones, let alone female hormones and the effect of being pre-menopausal which you refuse to treat because you have some magical line of no periods for a set amount of months.
You don't understand the first thing about autoimmune disease(s)
You insist on treating women with an allopathic medical (aka pharmaceutical) one size fits all approach.
You measure women's health outcomes and baseline measures on that of Men. Women were often not included in testing cohorts.
You discount entirely where people are in any given range as long as they fall inside it.
You insist on taking a numerically reductive view of patients, ignoring patients symptoms in favour of what the test and numbers say, thus making the test king.
You don't take into account a patients health timeline when new symptoms appear, thus treating each body part as a separate entity.
You have allowed yourselves to be invaded by psychological hegemony, and believe if you can't quickly identify the cause it must be psychological in aetiology.
You refuse to consider that depression can be a symptom of underlying illness instead of the cause.
You believe you are somehow superior because of being a doctor and your ego when confronted with a set of difficult symptoms is easily bruised, so you blame the patient.
You allow big pharma to drive your budget, focus and priorities.
That’s one of the best responses I’ve seen! Agree with every single word! Perhaps you should send it in to the NIHR… I’m sure it couldn’t do any harm and might do some good!
Thanks! But there's a lot more to add to the list regarding treatment of women specifically. Surely they know all these things already?
I just think the whole system is governed by big pharma so I don't know if it's worth trying to fix something that I really don't believe can really be fixed. I'm frustrated by it all to be honest.
Alana, this is genius! Thank you. The last 4 are my biggies. The ones that are already on the table before you even step through their door. May please I copy and distribute judiciously, appropriately? With or without attribution.
If you wish to share it discreetly I guess you can without attribution though, please. Although, like I said there's more that can be added. Feel free to add more as you see fit!
Thank you very much, Alanna. If I share it, it will be attributed to Anon, and where it's likely to have a positive and/or affirmative impact - do you have other thoughts about your audience? Meanwhile, putting my thinking cap on for more - are we extending to hosp consultants? (oh boy, there's a treasury to be mined!)
Hi sorry, I'm decorating or rather, paying people to decorate for me partly funded by food and have been cooking all weekend!
Definitely that includes hospital consultants. They can be brilliant or absolutely awful and even some endocrinologists have proved (after a long wait) to be extremely disappointing, not paying attention to patients, and unknowledgeable about thyroid disorders.
Its a great list. Very professional. It definitely should be sent everywhere and anywhere that might be interested and even where they are not interested.
it makes me really sad to read some of these replies. I wonder if it matters whether your GP practice is inner city or not. I live in a town with a population of about 11,000 and one practice. I’m in the West Country. Does that make a difference? Does having a long standing relationship with your GP help, because you are able to discuss things and show your knowledge? My GP knows that I research everything and has in the past said things like “what are your thoughts Sarah?” . I always reply with “I’m not a Dr but I’ve been reading this research paper that suggests………. What are your thoughts on this?” . I really think that way I show respect for her and she accepts I’m not uneducated about my issues.
Yes, I think that does make a difference, SarahJane.....it sounds similar to how it used to be with small practices and a Dr who saw the same patients over the months/years, and got to know them, and most likely their family as well.
Having lived all over the country and abroad, I've not found any significant pattern. I've often found locums to be better, more attentive, interested - had some great conversations with them.
Now I live in a rural big village (c.3000 pop). One healthcare hub with SIX doctors. Each has 50% of the country's average GP:PX ratio. Males and females always too busy to listen. Before pandemic, 5 week wait for GP appts. Now 10wks for phone appt after triage by reception. Terrible stories from other women in the waiting room, the hairdressers, the grocers. I've cravenly taken papers to them...straight in the bin.
After 50 years of marriage I can testify that men and women are different. I am lucky to have a very supportive husband. I notice with (most) male doctors, their communication skills are not good, to outrageously bad and/or they are particularly keen to get you sent on to some specialist or another. They are not natural communicators. However I have come across many truly terrible female doctors. As a woman I feel that more keenly and more acutely let down. No sisterhood. I have found that female doctors are less keen to pass you on outside the practice and are much more inclined to do nothing for which their colleagues can reproach them. They seem to be more ‘rabbit in the headlights’. The medical profession does seem to be draconian in its working practices - even in this day and age when we allegedly know better. I think most of the stress of a working doctor is due to this - not the patients (apart from us who want to get well). Just as an addition here, one of the ‘best’ doctors (male) I had for many years completely overlooked my hypothyroid symptoms and helped keep me sick for twenty years!
Oh my goodness, yes! 'Rabbit in headlights' is just what I've experienced here. And the constant referrals like a film noire merry-go-round. I agree with what you say about their work culture. I can confirm that men and women are very different (thank goodness!) and male docs are too often bad communicators. And, yes, the women docs do seem to have this, sorry, old stereotypical acquiescence to males of their tribe. Weird. Like they're in some sort of cultural time warp.
After a mammogram, it was decided I needed further treatment. I took my partner with me for the discussion. The specialist and my partner discussed the treatment, and at no time addressed me until I stood up and said I was leaving as I was not needed. Shocked looks, end of discussion.
I got rid of the lump and the partner at the same time.
I stumbled on this 13 point list yesterday when I was looking for something quite unconnected. I thought it might interest people here, given our recent conversations!
If you go to the link you'll also see a downloadable PDF which unpacks the required standards for each core capability.
It's a real hoot as far as I'm concerned! As far as I'm qualified as a patient to assess my GPs in the core capabilities that directly impact on me, they really do fall into the 1st and 2nd competency levels of 5 (1. 'indicators of underperformance' and 2. 'needs further development').
And I could provide material evidence to support my assessment. It's really sad that they're so lacking. If I didn't laugh at it, I'd be crying. Because they're not just failing me, they're failing hundreds, perhaps even thousands of patients here....
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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.
Why do doctors not listen?
NICE Guideline on Thyroid Disease: Assessment & Management
When a doctor says “its your age" and doesn’t provide appropriate treatment. Part 1 Why this is illegal. (What to do about it in Part 2)
