Thoughts on good and poor healthcare for urogynaecological conditions

This section covers:

  • Listening and being heard
  • The patient as a whole person
  • Kindness and respect
  • Being open-minded and collaborative
  • Building trust
  • Women’s healthcare and being gender inclusive
  • Making complaints

People we talked to saw ‘good’ healthcare as including access to treatments and information about urogynaecological conditions, as well as the values and characteristics associated with considerate and caring healthcare professionals. When healthcare professionals did not provide the best care, some suspected that this was due to services being under a lot of pressure, especially during the Covid-19 pandemic.

Elisabeth is concerned that the NHS is “running on empty” and that healthcare professionals are doing their best under difficult circumstances.

Sometimes consultants seem too busy, they’ve got, they’ve, I mean you can understand it, maybe they’re running late, they’ve running an hour late because they’ve been operating in the morning, it’s over run, they’ve had to do this, they’ve had to do that and they’re running late. And wouldn’t it be wonderful if time was just there, whatever but it’s not and I don’t know how you can change a system that at the moment is, well I think it’s running on empty, I think that people are always doing their best at that time and you are, and if they’re not they shouldn’t be there. But I think they’re doing their best under incredibly difficult circumstances and the health service has become a pawn in the political game and I think it’s really, really sad, really sad because it is full of a lot of incredible people and I’m sure the majority start out and they want to change the world, they want everything to be wonderful, they want to mend people and that doesn’t always work. And I think the mental side of that for so many healthcare people must be horrendous. I think if I had a limitless pot of money, healthcare would come very high up in my place of wanting to divert it.

 

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Listening and being heard

Listening was regarded as a key skill for a ‘good’ healthcare professional. Julie, Melanie, Mary Y and others told us that they had to hunt to find someone who listened and understood and described the relief when they found the right person. For those, like Jenni and Susan, who had good experiences with healthcare professionals or with a particular doctor, nurse, or physiotherapist, this was valued. Mary X says her GP “never rushes you and he’s always friendly”.

Jan’s healthcare professional put her “at ease” and gave her enough time to hear and understand.

I think the best one was literally this week seeing this particular lady. From the moment I was invited into her room she put me at ease. She wasn’t dissimilar age to me actually, probably only about eight years younger, so she talked in many ways all about she’s struggling with some symptoms that I’m struggling with. Listened to me, actually gave me longer than the time allotted, explained so many things to me and helped to write things down for me so I could take them home. Really listened to everything I had to say to her, was very well informed. Was very positive about the outcomes for me. When she did the internal, she sort of said, “There’s lots we can do there.” Was very caring in her approach and has followed it up very quickly since I was with her with three phone calls to get things going. So it was a combination of somebody that just had the time to listen. I didn’t feel I was rushed. I felt I could, I had a long list of questions that she was very keen to just answer very thoughtfully each one and she, I felt confident, and I’d done a bit of research, she was somebody that really knew the information.

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For Kerry, Jackie and others, good healthcare was about being heard and taken seriously, even when symptoms were not considered life threatening. Gwen felt listened to and supported by her GP who she felt would leave no “stone unturned”.

In contrast, Sue Y felt that she had been treated as if it was “only a little prolapse”, and Jackie thought there was a “blasé attitude” to her unexplained symptoms following mesh surgery. After feeling dismissed by a doctor, Cynthia put off seeking medical help again and, when she did return, felt scolded for not having come back sooner.

Janet, Carole, and others told us that good healthcare involved professionals recognising the impact of symptoms on a person’s life. Alaina, Eve and Gwen would like them to always remember that “it’s a big thing” to talk about basic body functions such as urine, faeces, and sex.

Alaina felt that no one had really understood the impact of having a prolapse.

I remember the kind of like bursting into tears in one, kind of one memorable GP appointment and I look back on this now and think, I just wondering if she was just uncomfortable with somebody crying. But she just looked at me like “What’s the problem?” Like so matter of fact as if I was just kind of like a robot in front of her or something and then went onto tell me about how like her pelvic floor was okay because she’d had a baby, but she’d used this machine afterwards with like the guidance of a physio, so she was alright. I was like, I can’t believe you've actually just told me that story. When you've got somebody in front of you crying their eyes out because they feel like their life is over. And I remember saying to her, you know, like I’m thinking about it, I’ve heard that you can have a pessary and she was like, “Well, you know what, I’m not an expert in this area, but no you can’t.” And I was like, “Oh, but it’s—I read this kind of like you know, research or I’ve read this kind of paper” and she was like, “No, no, you can’t” and she kind of proceeded to argue with me and I was thinking, this is just really weird. You know, it’s like you’ve just told me that you don’t know enough about this area, but she didn't offer the kind of like seek any further advice or anything like that or yeah, so I think I found like how healthcare professionals either varied from being really dismissive like I saw somebody else and I was seeing them about something else, but she was a gynaecologist and she, I said, I haven't lifted anything since having this diagnosis and she was like, “Oh god, I’ve seen much worse, it’s fine. Yeah, yeah, quite high up your cervix, don’t worry too much”. Yeah, so I just, I felt they were very dismissive, very like reductionist. Did not look at the whole piece at all. You know, it was just, I felt like a piece of meat on like the table to be honest with you.
 

 

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The patient as a whole person

Georgina, Amy, Jenni, and Alice, described ‘good’ care as focusing on the person as a whole, rather than as a symptom, body part or diagnosis. Katy said that it is important not to put patients’ symptoms “in a box” so that they can see “a whole person, not just this ailment”.

This meant also considering the connections between a person’s urogynaecological symptoms, other health and life issues, emotional wellbeing, and impacts on the quality of life. Felicity, who had a prolapse, felt her physiotherapist had taken a holistic approach to her care. In contrast, there had been times when Penny and Phoebe had felt treated like a “slab of meat” rather than as a person. Vicky would like them to “look beyond the guidelines” and treat the individual person.

Sue Y worries that the health system focuses on body parts and not on people and thinks it’s important for healthcare professionals to learn about communication and relationships.

I have to say, I do feel that the health system now concentrates on body parts, not people, sadly.
 
Can you say, can you talk to me for a bit more about that and what your, from your own experience? Cos I think that’s, I think it’s a really, really important point.
 
Well I think at one time, y'know, back in the day when you went to the doctor, they knew your family history. They knew your history. They knew you. And even if you didn’t see the same doctor every time, they still pretty much knew who you were and what you were about and what’s happened in your life. And then I think, as the GPs got less and less and they knew about you less and less, so now, when you see a doctor that is when now when you go into a surgery they ask, they say, y'know, what’s the matter? And you tell them what’s the matter and they deal specifically with that thing. That’s all they deal with apart from tick boxing whether you smoke or not. So, they don’t, they don’t seem to have any interest on whether this condition is affecting you as a person or the rest of your body. And they spend most of their time looking at the screen and not at you, which I find very disconcerting because certainly when I was, I was a nurse I used to talk to people. I didn’t talk to the computer. So, I think computers have got a lot, lot to answer for. Not that I’m a luddite because I do have all the technology myself, but I don’t know, whether, whether they don’t teach them anymore in medical school about interpersonal relationships or what. But yes, I, every time I’ve had any problems recently it’s always been the part of the body. It’s not been you. Y'know, how are you, how is, what’s happening to you affected you. Is anything else happening, y'know. It’s just basically they want you in and out, I think. So, I think, yeah, I think medical, medicine has become depersonalised, definitely.

 

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Healthcare professionals who had recognised the women’s emotional needs and wider life concerns were appreciated. Phoebe told us how important it was for her when the physiotherapist really considered the demands of being a new mum for example by recognising that “you can’t tell a mum not to pick up a car seat”. After Eve spoke to a physiotherapist about the emotional impacts of her prolapse, she felt that “a little weight had been lifted off my shoulders”. Carole felt treated as a whole person when her A&E doctor took the time to listen and get her a cup of tea.

Freia would give her nurse a ‘gold star’ for being so caring.

The nice one, the nice one was so pleasant, and I just felt relaxed with her and she was will-, she was willing, I mean I was in the same amount of time but I got such a different, she had care she was a really nice person and she gave me a waste, she says, “No I’ll get that, no just stay there, I’ll get that” and “No that’ll be fine. Have you got another appointment?” You know, the first time I saw her, she said “Have you got more appointments?” I said, “What do you think? I said, “No,” I said, “you’re the only person that, you’re the first person that’s kind of like been nice to me,” and I said, “Oh,” I said, “I’m just being, well-“ yeah the first time I’d I had seen her that’s when she said, she was the one that was saying, “Have you got more the appointments set up?” I said, “No,” I said, “No, anyhow, just seeing your colleague last time,” I said, “She was-,” I made a comment and she just, she smirked and said, “No comment.” So, I thought ‘Oh that’s really diplomatic’ and I kinda felt like it was bad of me, but I also wanted her to know that she was doing a good job for me, that she was being a good nurse and that I appreciated her nursing skill and yeah, she sticks in my mind, know her name. I’m really awful with names, I know her name, but she was lovely and I felt safe with her, and I felt listened to and I felt like she cared that she was gonna do, that she was gonna help me, I actually felt relieved and that something could be done and so there is, yeah I’d give her a gold star.

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Elly thinks that taking the time to understand what someone is going through is an important part of healthcare as “we are not a problem in a medical book”.

You know, I think that’s what, I think on the daily front of looking after people, I can’t complain about what they do but I think the one thing that sometimes is missing in the healthcare is, especially women’s healthcare, is the understanding and the time. I come back to that feeling like everything is fluff, like, ‘Ooh, let’s just be quick.’ Let’s go round the subject quickly because we don’t want to talk about women’s health and it’s just, it’s that time and that understanding of what somebody is going through and how that can actually impact their life. Like it’s a problem on a piece of paper and it’s a problem in a medical book but, when somebody is experiencing that problem, that’s real for them. It’s their lives it’s having an impact on every aspect of their life and, you know, it’s not a page in a book. It’s a person and that person needs to be heard and needs to feel like they’re being supported physically, emotionally, and I think that sometimes what’s missing a little bit.

 

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Kindness and respect

Chloe said that her urogynaecologist had a “kindness in her voice”. Mary Y described a nurse who “had a very special way of supporting patients just by gentle touch, just a touch on the shoulder”. Vickie appreciated that her consultant would “hold my hand when I cried my eyes out and I think he absolutely recognised the impact it was having”.

Jordan feels that good health care is a “combination of kindness” and caring enough to “get to the bottom of what’s going on”.

I think a combination of kindness and also wanting to be curious and get to the bottom of what’s going on for someone, you know, I think empathy has a massive part, you know, I I’m fully aware that there are plenty of doctors who, you know, could stare at their screen, not look at you in the interaction and still give you the right prescription at the end of it and treat your problem. But the actual sort of social side of that kind of interaction can feel, you know, kind of unnecessarily challenging I think, I think there’s a role for kindness just in being human and connecting with people who are clearly in some kind of physical or mental pain, you know, and even I think when there’s time pressure and stuff I don’t think, it takes a lot to make eye contact and, you know, smile and reflectively listen. You know, I think that should be a basic component of healthcare, you know, regardless of setting. But I think also, yeah like a drive to not take things for granted and to look a bit deeper into what might be going on for someone, you know, and not to necessarily take things at face value and to be able to pick up on, I don’t know, anomalies or just things that seem curious and to be willing to investigate.

 

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In contrast, some recalled experiences when they felt healthcare professionals had been indifferent or dismissive. Jackie felt that her healthcare professional “wasn’t interested”, Rowan could not understand “why people have to be rude”, and Phyllis felt like she was seen as “a bit of a nuisance”. Negative experiences included practitioners who were “arrogant”, “cocky”, or “rude”. This made it difficult to seek treatment for conditions that can be difficult to talk about.

Some people said that their healthcare professionals had used disrespectful language to discuss their bodies. Kezia suggested that they should be “better trained in empathetic language”. Fiona felt that they should be careful what they say, particularly if they don’t always know what someone has already been through. Catherine said that she “really warmed to” a physiotherapist who made her “feel comfortable”, whereas she had seen another she could not ‘connect’ with. Iris told us that she only “really opened up to a healthcare professional” about her traumatic experiences when she met one that she really trusted.

Cynthia describes her experiences of a gynaecologist who used the word “disgusting” when examining her. After a series of bad encounters with healthcare professionals about her prolapse she received ‘compassionate care’

And then, subsequently I saw a gynaecologist who kind of examined me and looked at the pessary that was already in. And then just said, ‘Well this is a disgusting sight’ or something. He used the word, disgusting, having examined me, he was also very dismissive, so professionally we were colleagues and he asked me what my speciality was, and I told him and he said, “I’ve never even heard of that, basically.” He sort of dismissed the fact that I was a professional colleague. I was also due at the time of that encounter, I was due for a smear, just a routine smear. And a registrar whom I’d seen previously had suggested that I might as well have a smear done at the same time as having my pessary replaced and having that gynae appointment. And so, I said that to the consultant and he said, “We are not a smear taking service and I’ve never heard such a suggestion.” And he, then he basically stormed out of the room. He just left the room. And I had no idea if he was coming back.
 
I had those kind of series of kind of bad encounters. But then, again, I suppose the Urogynae service is set up to be doing just that, so you don’t feel like you’re kind of a nuisance or that it’s your fault for being there. And they’ve, I mean, I’ve, I have to say that I think I’ve used the word a few times. I think they’ve just been kind to me. They’ve just treated me with some compassion and kind of again it’s not, like I don’t want a lot of sympathy, actually. I want it to be business-like, but it’s kind and business-like and so it’s kind of just compassionate patient care, I think.

 

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Many, including Leeanne and Katy, said that good healthcare was also sometimes about practitioners’ personalities and how they engaged with patients, including communication styles. Sometimes, the way healthcare professionals delivered information and the language they used could be confusing. Susan thinks that using “layman’s terms” can help patients better understand their conditions. Jo considers it important that healthcare practitioners communicate information “in a way that can be understood by everyone of all abilities”.

María, who is studying as an overseas student in the UK, says that language can be a barrier in healthcare for those whose home language is not English.

In my first year I think like, well even till now you know to be honest, like sometimes I go to the GP and I am able to fully communicate what’s going on with me, but sometimes they use some words that I don’t understand, and I’m like, “Yeah, yeah.” But it’s part of like living in another country, you know, and there are words that you will never understand. And I mean I make my peace with that. But that has never, that has never been a barrier, like it’s there of course because they would say like I don’t know, I remember where, when I got pregnant it started because I got thrush, and the doctor says thrush, thrush, you know, it’s like I’ve no idea what she’s talking about. No idea until she prescribed the medicines and then I read what they were for. So that could be a challenge for sure. I think like if you say urinary infection, it’s easier to understand than thrush, thrush like, I remember even, I, asking my boyfriend can you listen please, I recording, and he was like, he didn’t know of course, so well I have no idea what this woman, of course I knew what was going on with me, but I couldn’t you know like, I couldn’t even translate because I didn’t know what, what was that. So I would say like that could be something but I wouldn’t tell you how to overcome it you know. Having maybe this type of appointments, like with a camera, maybe would it be easier, you know because you can put a software and you can have close captions and research what the person is saying in that moment, you know. That could be something maybe.

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Being open-minded and collaborative

A ‘good’ healthcare professional was seen as someone who kept their mind ‘open’ to treatment options and the causes of health problems. Alice, Pauline and Melanie and others told us about healthcare professionals who would “fight your corner”, go out “on a limb”, or stick their necks out to help. Fran appreciated the consultant who stood up for her when other doctors didn’t believe that her bladder had been damaged by mesh.

In contrast, Laura, Jenny, Katy, and others felt that some healthcare professionals did not want to listen to anyone else’s ideas about cause or treatment, and could be “arrogant”, “paternalistic”, or “patronising”. Sue Y said her doctor had a “have you been on the internet again?” attitude.

Anna has felt that there is a barrier when she tries to share what she knows about UTI with a healthcare professional. She would like them to acknowledge where there is no medical certainty.

Yeah so I just, you know, the way that you can be treated can be very paternalistic and it actually frustrates me more when I feel like they’re not being paternalistic with me because I sometimes feel with primary care if you, if you reveal that you have really any level of knowledge of the situation, if you really, you know, even if you know the name of the antibiotics you want to be prescribed, they’ll say to you, “Oh are you are you medical, do you have a medical background?” and I see that as quite [sighs] you know, like quite a harmful idea, you know, I really feel like there’s this idea that this is a big barrier between any knowledge, you know, I understand, I can understand GPs have a negative impression of people using the internet, patients come to them saying, “Oh I think I’ve got XXX” or something but I really feel like they want, you know, to me I perceive that comment that I have all the time to be they want to have an explanation of why you want to have any real knowledge about your situation.
 
I say, “Well, no I don’t have a medical background.” I can just read and I’m obviously going to try and research this because, you know, the thing is I wouldn’t, you know, I think there’s a group of women who’ve been driven quite crazy by this, you know, they’re there’s qui-, there’s no explanation for what’s going on with them and so they’re very, very invested in this embedded infection idea and they feel really emotional about it and I can understand it but I think it’s probably quite negative that’s happened to them but that’s what’s going to happen if the received wisdom about what’s happening doesn’t make any sense. So I really feel like an acknowledgement of the uncertainty would be, would be helpful.

 

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Several, including Susan, Fran, Jamie, and Vicky, who all had urinary incontinence, felt “signed off” or “cast adrift” with symptoms that had not been explained. Jamie, Susan, Penny, and others felt “left with the responsibility” of having to deal with problems following mesh surgery. Anna wonders why a healthcare professional would have “no interest or curiosity” to find out why her UTIs persisted.

Mehar feels that healthcare professionals need to think “outside the box” and consider what might be causing ongoing symptoms.

I think it starts in med school so only the curriculum for med school needs to be improved. The whole ‘listen out for horses and not zebras,’ has to be scratched up because I think there’s more the zebras out there now that are coming up and the medical world isn’t ready for us, they don’t know anything, they’re not trained in us. They’re not even taught our conditions. They don’t know anything, they just look at us just with blank faces and, you know, I actually spend a lot of appointments in there explaining my own conditions to them. Then they google things in front of me and they’re so fascinated and it just makes me sad that you spent ten years of your life in med school and residency, but you don’t know half of the things you should know.

 

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Carole, Penny, Phyllis, and Gwen said that some doctors they had seen would “just make up their minds” or follow a “set of rules”. Julie told us that her doctors “zoned in on” her history of postnatal depression rather than looking at her current symptoms. Rebecca, who ended up in hospital with a kidney infection, wants healthcare professionals to be more questioning about diagnostic tests for UTI.

Leah appreciates that it is difficult to ‘unlearn’ what has been taught, but would like healthcare professionals to be open to the possibility that tests for UTI are not always accurate.

Just open your eyes and open your ears and stop just doing like a ‘Computer says no’, you know, like. Just to, rather than just literally just following an algorithm and saying, “Okay, the tests say no,” just think, just look at the patient like-. I think it’s about respecting the patient as well because, you know, we know what symptoms we’re experiencing. We know what they feel like, we know if they felt exactly the same as a UTI in the past, so listen to us. We’re telling you that we think that we have a chronic urinary tract infection, don’t just dismiss us and say that we’re mad and that of course that can’t be the case. And it, it just baffles me. I cannot understand how medical professionals don’t want to learn and grow, and I get that they’ve spent how many years being told one thing and it’s difficult to unlearn something. We’re talking about people’s lives and the difference that they could make if they just listened to that woman in front of them saying that they think that they have got a UTI and how is it that their dipstick isn’t showing that they have.

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We heard positive stories about healthcare professionals working alongside their patients to find solutions. Iris felt that it was “incredibly powerful” to be ‘put in charge’ by her physiotherapist. Rebecca described “amazing healthcare” with her GP, where they were both “trying to muddle through it together”. Melanie’s private GP was receptive and worked with her to find the right HRT option. Georgina said that her healthcare professional had heard what she had to say and talked to her “like an equal”.

Janet is pleased that she was treated in a “holistic” way which included physiotherapy and pelvic floor exercises amongst other things.

I mean you go in and it’s not about them telling you what to do. They take a full history, they explain all how it all works, they were we did diary exercises about bladder and bowel and all that kind of stuff and then had a proper discussion about what the various options might be. It was much more of a holistic approach, so it wasn’t just pelvic floor exercises, it was diet, it was exercise, it was the pelvic floor stuff and I felt that I was being listened to. I felt that my views were valued and that we were working together to try and seek the best solution we could so that that for me works really well. I don’t want to be just told what to do. I want somebody who’ll talk me through what the options are and what the implications are of the various things that, that we might try so that for me works really well.

 

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Trust and feeling safe

Many of those we spoke to, including Leeanne, felt that trust was at the heart of ‘good’ healthcare. Phoebe has found that there are “extremes in the quality of care” and has been left “wary of the medical profession” by some negative experiences.

Sophie, Leeanne, Susan, Julie, and others who had complications following mesh surgery felt that they had not been fully informed, or even had been ‘misinformed’, about potential complications.

Katy used to have the utmost faith in the medical profession before her mesh surgery. Her lost trust has had a big effect on all future dealings with healthcare as she no longer knows who to believe.

Well, I used to believe doctors. Doctors were obviously, you know, like I most probably imagine the majority of the public you sort of, your doctor as quite held in high esteem, you know. They’re very intelligent people. You know, they do a lot to get to where they are. I’ve got so much respect for anybody in the medical field. But, I also now know there are people in the medical field that actually don’t really care about people. And that is an awful way to live because you know, I, like I say, I have so much respect for anybody working in medicine. And it’s given me a clouded view of that, which I, I don’t like that I’ve got a clouded view. When I hear people sort of talking about oh, you know, this operation that operation, straight away, I’m thinking about what could go wrong. Do I believe what the doctors say? No. And that’s a horrible thing to believe. You go to your GP hoping that they’re gonna help you with whatever, you know, mental ailments or physical ailments, you’re hoping that they’re gonna help you and give you the best and sound advice. And now, I go in and come out and I don’t believe what they’ve told me.
 
And that’s, that’s debilitating because I come away more worried about what they’ve told me, ‘cos then I think well, you know, what if they’re just saying that or [inhales] yeah, it, it’s whereas before I would’ve believed everything they said. They are the GP, they know you know, you know, [laughs]. You used to go to the GP to get your passports and things like that signed because they’re such an honourable person. And you know, across the board and it’s just a horrible to then know you’ve got to go and see somebody because you’ve got an ailment and go without having that confidence that’s person has got your best interests and that’s, I don't know, that’s just how I feel now. I worry about every little bit. If it’s medical and I need medical advice, I worry so much before going that is this person actually going to be you know, worried about how I react to something rather than, you know, not having my best interests at heart and seeing me just as a number rather than an actual person.

 

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Informed consent was seen as essential to good healthcare delivery, but Katy and Jackie were unsatisfied with the level of information they received about different treatment options. Penny felt that she had been unfairly “sold” mesh surgery. Following her hysterectomy, Gwen does not remember being informed that her ovaries were being removed.

Jamie, Sian and others described privacy and confidentiality as important aspects of good healthcare. Jamie had felt upset when she experienced urinary incontinence in hospital after surgery and felt a nurse who came to help her had “broadcast it to the whole ward”. Leeanne thought it had been ‘unprofessional’ to pass on details without asking when she had chosen to seek care privately. Katy felt “completely humiliated” to think that doctors had talked to each other about her.

Emma says that you wouldn’t tell people your personal problems in a supermarket queue, so staff should be aware of privacy in an open hospital ward.

It was a four bedded ward which I, you know, I didn’t really like as a sort of you kind of feel that nothing’s really confidential, you know, sort of when the ward rounds come round they maybe pull the curtains round but sound travels through sort of through the curtains and, you know everybody’s sort of listening to, sort of, the conversations that are kind of going on and I, it just always seems quite this sort of strange concept to me that you, you wouldn’t necessarily share a hotel room, you know, with a stranger but you’re expected in hospital when you’re at your most kind of vulnerable you’re expected to share with strangers and have your medical history sort of really discussed quite kind of openly and I mean there is obviously there’s a lot around about sort of patient confidentiality and not sharing patients notes and, you know, just what you’ve talked about before we started the interview, sort of underlines that it’s all kind of, there’s a lot of legislation around about it.
 
But I mean I did kind of feel that it’s the kind of nonsense when they’re standing in, you know a ward and having conversations about your operation etc. and there could be sort of five or six other people in the vicinity.
 
So yeah I suppose things like, like that it’s kind of hard going in for some of these sort of gynaecological type things that, you’re feeling quite vulnerable anyway and you know, sometimes the NHS settings it doesn’t really, it doesn’t lend itself to much in the way of kind of privacy or kind of dignity, as you know, as such.

 

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Women’s healthcare and being gender inclusive

Helen, Kerry, Carole, and Jenny expressed the view that women were not always taken as seriously as men in healthcare. Katy, and others, felt that ‘women’s problems’ were seen as a bit of a “joke”. Jane was deeply concerned about sexism and ageism in healthcare, and said that it is “shockingly bad that women’s bodies are not treated more seriously”.

Carole says that doctors are dismissive of women’s symptoms, and feels that men’s complaints are taken more seriously.

You try to offer a little bit of information about your condition, and they really don’t want to know. And I, I feel half the time that because we’re women we’re dismissed. And of course, if you’re a man and you’re suffering, it’s a well-known fact men don’t like complaining, so they probably won’t tell the doctor a lot of the conditions that they get. Whereas I think women probably are a little more open if they’re suffering from something, they’re gonna say something. So I really don’t feel that we are being listened to.

 

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Kezia and Sharon, who developed prolapse after giving birth, felt that their needs were sometimes neglected because there was more focus on their babies’ health. Sharon emphasised the need for more post-partum care services and greater awareness of (and the availability of self-referral to) pelvic floor physiotherapy services. Jane and others felt that women’s bodies were sometimes written off as being ‘prone to’ bladder, bowel, and pelvic problems. In some people’s negative experiences of healthcare, their symptoms were regarded as the result of getting older, being menopausal, or as a standard outcome of having a baby.

Iris thinks that sometimes women’s health problems are dismissed by healthcare professionals.

But I do think that perhaps being a woman with something that’s down there that you can’t obviously see and treat that perhaps contributes to the difficulties that I’ve had finding the appropriate care for me, which was the physiotherapist in the end. And also, I’ve been treated for things like ear infections at the GP or I cut my foot open once and the way that that seen because it’s like, oh yeah, we can look inside your ear and look, isn’t it infected. I think the experience I’ve had of that kind of problem has been overall quite different to the experience I’ve had of this problem because some GPs have been brilliant and some GPs haven't, but also it’s not, I don’t think it’s just about the GPs, it’s about kind of the continence nurses or physios and [sighs] yeah. I think, I can’t imagine my partner going to the doctors for like for repeated UTIs and like being sighed at in the consultation. I can’t imagine that. And that, you know, that this isn’t based on reality, this is purely me imagining. But, I think, I feel that in the past, not so much anymore, but in the past, there is a certain element of well, women get UTIs, you know, or lots of women have had mental health problems.

 

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Jane and Rowan want healthcare professionals to recognise that women have experience of their own body and that they are not just “imagining things”. Janet “would have expected better” understanding from a female doctor, as did Jane when seeking advice about how to manage her sex life. Eve felt that medical letters did not always reflect her memory of a consultation and this has made her doubt herself and wonder if she has given the wrong impression by looking “brighter” than she was feeling about her prolapse. Iris was surprised to find she had depression on her medical record, which she feared “might work against me” when seeing healthcare professionals.

Many people we talked to, including Fran, Holly, and Megan, said that they had been made to feel “hysterical”, to think that “it’s all in your head”, and that they were making a fuss. Jamie felt that her doctor was “very dubious” that her symptoms were caused by mesh surgery. Sue Y, a healthcare professional herself, felt dismissed and that she was seen as “making a fuss” when she said her pessary was painful.

Mehar says that healthcare professionals have tried to make her feel that her symptoms are in her head. She thinks that better communication is key to good healthcare.

Yeah so obviously first and foremost is listening to the patient, not dismissing them, not gaslighting the patient. I know that even, I’ve had experiences where I’ve had my diagnosis from my private doctors done and they’ve had an incident in A&E or with my old GP or something and having, I have this on paper that I’ve had these diagnoses and conditions and I’ve got these medications and still one of the doctors said to me, “No these aren’t real, this isn’t a real diagnosis, there’s nothing,” and that really shocked me because, you know, you can’t just go around gaslighting patients especially when they have the conditions and they have the doctors and they have the medication. So, I think it’s just really, really important for doctors to understand that that just because they don’t know what it is or they don’t understand it doesn’t mean that everyone else is wrong about it.
 
It’s also important, I don’t know, actually the way sometimes doctors talk to a patient can be quite rude and I feel like when you’re going through all these things, you know, you have all these symptoms or conditions and you just, you don’t know what to do, you know, you’re in pain and things just aren’t going right, it’s just doctors need to empathise and listen instead of just being rude about it and just laughing and things so that’s, you know, I think it all just comes down to a communication, how to, how to effectively communicate.

 

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For transgender or non-binary people, good medical care involves an additional set of health needs. For Jordan, who is non-binary, using the right pronouns and not making assumptions about gender identity were important markers of respectful medical care. Jordan feels that while it can be “tough to address the balance”, it is important to support reproductive and gynaecological healthcare needs while being gender inclusive.

Jordan’s gender identity has been a barrier to efficient care. They think that “speaking to the person and understanding their situation” is often all that is need to better accommodate gender non-conforming patients.

A recent referral to the hospital where I now live where the referral was rejected and sent back to the GP and supposedly, I don’t know, the overall message that both my GP and I were completely baffled was that they’re not equipped to handle my gender identity and we were just, we were just kind of thinking there, you know, there must be so many assumptions being made here, either that I have had some kind of surgery that affects, you know, my biology that then they don’t feel like they have an understanding of, you know, or maybe I’m seeking some kind of surgery that they don’t offer or, you know, there’s obviously some thought going on that is making them think there’s a valid medical reason as to why they can’t offer me something but there’s, you know, we haven’t either of us, my GP or I, had an opportunity to explain what the situation really is in any detail. So, I think, yeah that kind of assumption that, you know, transgender people or gender non-conforming people come with some kind of complexity that’s beyond, you know, the scope of any, you know, you know, scare quotes normal doctor, normal training doctor is just kind of a bit odd, I think.
 
I think I dunno what, I think it would be helpful for clinicians to know just know, that anyone, you know, anyone who’s medically trained ought to be able to provide care to someone who identifies, you know, as transgender or gender non-conforming just purely on the basis of, you know, yeah sometimes biology may be different, you know, in terms of hormone treatment or surgeries and stuff but a) that’s not necessarily the case and b) even if it is the case, I mean it ought not to be a barrier. Speaking to the person and understanding their situation will usually clarify that.

 

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Making complaints

Amy, Helen and Catherine had all made complaints based on their healthcare experiences and seeing healthcare professionals who had not seemed very supportive or informed. A few others, like Laura, Eve and Phoebe, had intended to but decided against it. Laura explained that “it’s been such a slog of going through the whole various healthcare system parts and I just haven’t felt up to getting more entangled in it”. Alice gave informal feedback in the hope it would improve things for other patients in the future.

Some of those who we talked to felt that taking part in this study to make an information and support resource was another way to make a difference to others, including by sharing their messages for other people affected by urogynaecological conditions.