Key messages to healthcare professionals about urogynaecological conditions

This section covers:

  • Being caring and treating patients holistically
  • Being sensitive about personal or potentially embarrassing symptoms
  • Listening to patients
  • Having open, honest, and collaborative conversations with patients

The people we talked to shared their key messages for healthcare professionals who see patients with urogynaecological problems.

Jane asks healthcare professionals to join patients in what can be a “dark, shaming space” of living with an urogynaecological condition. [spoken by an actor]

It’s about humanisation. That’s what we need from healthcare professionals, you know, recognise that this is an intimate, dark, shaming space and that’s not our fault, you know it’s society’s fault, cultures fault, and therefore cross that boundary, come in with us, you know be in that space where, where women want to be talking about difficult stuff, you know.

 

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Being caring and treating patients holistically

A key message to healthcare professionals from many that we spoke to, including Jamie, Sue X, Mary X, and Mary Y, was to be caring to patients’ feelings and needs. This included providing more holistic care, which takes on board all aspects of patients’ health and wellbeing. We repeatedly heard about the need to be treated as a whole person, rather than as a number, set of symptoms, or problem to be routinely solved.

The people we spoke to acknowledged that providing holistic care could be difficult due to limited time, money, and staff availability. However, they emphasised that healthcare professionals showing that they care helped massively and could be healing in itself.

Mary X thinks it is important for doctors to see patients as a “whole person” rather than within the confines of a medical specialty.

I suppose it is sort of seeing the person as a whole person, and what I think is difficult is that people think in specialities so that they don’t recognise that people have more than one, or quite often certainly when they, as they get older particularly, but generally often have more than one thing. So, they just focus on the thing that’s, that they see as their province, and don’t take into account the other things. And it’s, it’s having a more holistic view of people I suppose.

 

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Many people we talked to, like Sabrina, asked healthcare professionals to remember to be kind and nice to patients – even when they are busy and stressed. Minnie wanted them to remember that it can be very emotional so “please be patient”. Melanie feels that kindness as well as training was really important. Elly explained how this can have knock-on effects, because how a patient feels after one appointment “sets the tone for the next appointments”.

For many, the impact of urogynaecological conditions was much broader than the physical symptoms. People told us about how their emotional wellbeing, quality of life, and relationships with partners and family and friends were impacted.

Alice says it stands out when a healthcare professional goes “over and above to really understand” you as “a whole person”. Several people, including Rose, want healthcare to be more “individualised”. She hopes that healthcare practitioners will consider peoples’ lives beyond just the “physical side”. Vicky wanted healthcare professionals to “look beyond the guidelines and to see that person as an individual”. Elly talked about the importance of remembering that patients are people with real lives, rather than “pieces of paper”.

Jane wants her healthcare professional to get to know her as a person and not treat her as a “machine”.

I don’t want someone who doesn’t know me or doesn’t, is completely depersonalised and treats my body like a machine. I know, and I know that’s how surgeons have to think, how could you possibly cut into people all the time without seeing it as a thing, you know. So it’s not about sexualisation, it’s not about mechanisation. It’s about humanisation. That’s what we need from healthcare professionals, you know, recognise that this is an intimate, dark, shaming space and that’s not our fault, you know it’s society’s fault, culture’s fault, and therefore cross that boundary, come in with us, you know be in that space where women want to be talking about difficult stuff.

 

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Jamie, Mehar, and others also told us about the importance of doctors seeing beyond the limits of their medical specialty. Jamie noted that it can be easy for surgeons to “presume that just because you’ve done thousands of operations that you know this person in front of you”. She encourages them to treat each patient like “an individual, not a number”, and to see them as people rather than diagnoses. Holistic care was especially important to those like Mehar and Iris with additional health or life events that informed their healthcare needs for urogynaecological conditions.

Chloe, who has prolapse, would like healthcare professionals to put themselves in the patients’ shoes from “a social, emotional [and] general day-to-day point of view”.

Put yourself in their shoes as you would for any condition and think, ‘What would it be like for me if I had to plan every time I went out, if I had to stop going out? If I had to constantly make sure I had a supply of pads all the time? If I was worried that, you know, I can’t wear those trousers because what if I leak or I can’t drink a cup of tea now because what will I do in an hour’s time when I need to go to the toilet.’ Put yourself in their shoes and not just from a ‘Oh they might get a urinary tract infection point of, you know, medical view.’ Put yourself in their shoes from a social point of view, from an emotional point of view, from a, you know, a general day to day point of view and see if you think you could deal with that and the answer will be no. Like, it’s really hard for anyone to deal with and then do what you can to help with that, don’t accept any degree of continence issue, as just normal and something to deal with. Like, question it and do what you can to help because there usually is something you can do, even if it’s just talking to them and letting them tell their story and empathising with this and yeah the way you approach it, even though it’s just that, just try and you know, take it seriously and then put yourself in their shoes to see what how it’s affecting them.

 

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Being sensitive about personal or potentially embarrassing symptoms

Some of the people we talked to, including Chloe, Jasmine, and Alice, wanted healthcare professionals to remember that it can be really embarrassing to go to the doctor about bladder, bowel and vaginal problems. Chloe, who has prolapse and incontinence, and who is also a healthcare professional, explained that it is really important to provide a “comfortable” setting so that patients can open up about their “most personal body parts”.

Please listen and respect people’s privacy and dignity, says Emma.

The key messages for the health professionals would be to listen, listen to patients and to I suppose respect their privacy and their dignity as well that this is, these are hard conversations to have and there’ll be other, lots of other women out there like me who’ve never had a conversation, a full conversation with their friend or their family and are maybe been asked to have conversations in quite sort of public, sort of public place. And it probably contributes almost to people are slow to present to care because they do feel, they do feel embarrassed and embarrassed by it. So yeah in terms of kind of health professionals I would say sort of empathy and kind of listening to, listening to, you know, to patients.

 

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Sharon, Alice, Iris, and others agreed that it can be really embarrassing to talk about urogynaecological problems and the impact on life. Iris wants healthcare professionals to keep in mind how difficult it can be to say that they’ve been having issues with urinary or faecal incontinence.

Helping patients to know that it was a professional and safe space to talk about their concerns was important to many of the people we talked to. Alice thinks an ideal healthcare encounter involves the patient being able to “ask anything and not be met with a sense of awkwardness”.

Jasmine feels “shy” talking about topics like urinary incontinence and her sex life. She would prefer that the healthcare professional raised these topics.

Maybe if they ask you about it or if they mention, I don’t know how, when they can mention it or which visit they can ask but I think it will be nice if the doctor asks you because I don’t feel shy answering or like discussing this if I’m asked but I don’t know initiating the question about it I think I’m fine, maybe I should overcome my shyness but it’s just like, I don’t know how to ask it [laughs].
 
For the midwives or whoever follow women after the birth, I think it’s important to check how they’re doing sex life and how they, because they always say, “Oh how is your relations with your, how is your family relation?” I feel it’s all focussed on like “Oh are you not killing each other” after having a child, you know, it’s just more focussed on the mental health, which is good I think it’s, but then what they’re forgetting as well like I mean having a relation, especially with a child with all of this and just forget about everything and then on top of it if you have a problem then it’s like, I think no-one check about this.

 

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Listening to patients

A key message to healthcare professionals from many, including Fiona, Elisabeth, Holly, and Phyllis, was to listen and take patients seriously. This includes understanding what matters to patients, and not making assumptions. Jan, Penny, and Eve, amongst others, gave the message that it was important not just to “understand” but also “believe” the person in front of you. María, Phoebe, Jan and others, want healthcare professionals to take the time to listen “not to get only the current situation but the whole story”, and understand what it’s like to live with a urogynaecological condition.

Katy would like healthcare professionals to listen to their patients and not dismiss them, as this can have a real impact on future appointments.

My key message would always be, listen to the person, take them as a whole. It’s just don’t undervalue them. You know, because by dismissing somebody or not listening to them, you’re completely put them on edge for the next time they have to have, you know, they have to go and see a professional because my trust is gone. And it doesn't matter how lovely and how nice the next professional person is, I have now got doubts in my head before I even walk in. And the trust isn’t there, you know. So, it’s [sighs] I don't know. It’s but I’ve said it haven't I. I’ve said, you know, about communication and body language and just, you know, you have to be honest. Not everybody wants to hear what you’re saying to them and some people, I’m sure there’s people out there that want to go in and get a sick note and they’re not going to get it because they’re really not that sick and they don’t want to hear that. So, I know there’s going to be times where you have to be blatantly, you know, you have to be dismissive of somebody. “No, you’re not dying today. You can go to work” sort of thing [laughs].

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Many people, including Janet and Georgina, asked healthcare professionals not to make them feel as if their conditions were trivial, or to minimise their urogynaecological problems. Even if something is not “life threatening”, say Jo and Kerry, it can still have a serious impact on quality of life and “should have the same sort of platform” as other health concerns and illnesses. Jeannie added, “don’t be dismissive” of prolapse, because “it is a big thing” for the patient.

Sharon would like healthcare professionals to realise that “it’s just so damaging” to be told “no, I think you’re fine” when your life is so badly affected by prolapse. Holly and others asked, please “don’t send us away saying there’s nothing we can do” for urinary tract infections (UTI) and bladder pain problems. Many, including Jacqueline and Mehar, asked that healthcare professionals believe their symptoms are real, though invisible, and not think that they are wasting your time.

Mehar describes ‘gaslighting’ as “making somebody believe that something’s not true, even though it is”. She has experienced this with some of her urogynaecological problems.

So essentially gaslighting is telling somebody or making somebody believe that something’s not true even though it is. So, I say I present with my condition from, and the doctor says to me, “No, no it’s in your head, there is nothing wrong with you. This is not a condition and you’re completely fine, you don’t even need to” so the doctor would be gaslighting me and making me believe that it is in my head and there is nothing wrong with me. It’s horrible, you know, you can’t throw your patient to psychology every two seconds, you can’t just throw your arms up, you know, you have to help them and give them proper care. Even if you don’t understand something, that’s fine, there’s no shame in that. Just ask questions or do your research because gaslighting I know, I’m grateful that I haven’t had like severe cases or anything traumatising, but I know that people have been traumatised by doctors and things through gaslighting which is just really upsetting because doctors are supposed to have been helping us.

 

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Having open, honest, and collaborative conversations with patients

A key message to healthcare professionals from many, including Amy and Sharon, was to have an open and honest conversation with patients, including if there were areas where you are unsure or there is mixed evidence. Amy explains, “I know [healthcare professionals] want you to feel confident in them, but I’d rather they… just had been honest”. Anna, and others, living with problems with UTI and bladder pain would like healthcare professionals to “be a bit more honest about the limits of what they can do”. Sophie, who has complications from mesh surgery says, it is important to inform patients about possible consequences of treatments, and always offer “less invasive options first”.

Sian wants healthcare professionals to be honest and give patients all the information about potential problems from mesh surgery. She adds, “above all else, first do no harm”.

A message to the healthcare providers, oh, I could cringe at this. Actually for many years you have been underfunded and overworked and treated poorly. I know the system is at breaking point and in parts broken, but I implore you show all patients the pattern. Give them as much information on diagnosis as possible. If you don’t already, send out a copy of treatment plans discussed or alternatives if your time is limited. Follow up, do your research on medical devices because there are thousands of us suffering greatly today because of vaginal mesh. It’s a big ask because your jobs can often feel thankless and relentless. It will help patients tremendously. When an error occurs, note it and own it. Apologising goes a long way in building bridges and the patient will feel that you are honest. Trust maybe only five letters long, but it’s the biggest word in a patient’s voca-, in a patient’s dictionary. It resides on the letterhead of the building you work in and should be up there with the excellent care you are known to provide. And remember, above all else, first do no harm.

 

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Related to this, some emphasised that it was important for healthcare professionals to try and keep informed. For example, Melanie and Vicky want healthcare professionals, especially GPs, to have “up to date training in menopause”. A few, like Jeannie and Liz, would like healthcare professionals to learn about different types of pessary for prolapse. More research on chronic UTI, says Holly. Hope would have liked her healthcare professionals to have known about, and mentioned, options such as oestrogen ointments which really helped symptoms related to prolapse.

Many people we talked to, including Mehar, Leah, Jessy, and Janet, wanted healthcare professionals to listen to them, and consider their ideas seriously. Mehar adds that “it’s fine to learn new things from your patient”. Leah encourages healthcare professionals not to be “resistant to listening” because some patients are “really clued up”.

Body language is important too, and Leah and Carole asked healthcare professionals to be more aware of this. They added that it was important to not give patients an eye roll when they don’t agree with them. Jessy felt this way too: “if you disagree with me, ask me a question …be curious of what I’m saying. Don’t just shut me down”.

Helen, who is being treated with long term antibiotics for UTI, says if we didn’t listen to new medical ideas we’d all still be being treated with leeches.

They need to listen and they need to be open minded to changes and new, you know, different ways of looking at things, they need to listen to their patients and listen to their experience and they need to not dismiss other people’s you know academic ideas on things just because it doesn't fit with what they think, not learnt or taught. I mean, you know, if we didn’t listen to new medical ideas we’d all still be you know, being treated with leeches and you know whatever else. So, you know, don’t, don’t do your medical school and then that’s it. You know, you need to keep learning. We all need to keep learning. I have to keep learning. I have to read know-how all the time on my job. So should they be and they need to keep track of, you know, all the changes and just listen to patients and to other doctors and not just dismiss, you know, not dismiss patients and not dismiss other clinician’s point of views as well.

 

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Several of those who had problems with UTI and bladder pain, like Rowan, sensed a lack of curiosity about the causes. Rebecca would like healthcare professionals to be more “questioning of the diagnostics” for UTI. Julie thinks that healthcare professionals can sometimes be “a little bit stuck in the mud”, and Laura asks them to be “open to the idea that they’re not always right” or that medical knowledge can evolve.

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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Janet and others wanted their healthcare professional to “work collaboratively with them”; a “two-way” discussion, says Alice, rather than being ‘told’ and ‘accepting’. Leah thinks it is important to give patients “time and the space” to process information and ask questions. Many of the people we talked to felt it was unhelpful for healthcare professionals to hold back information or assume that they didn’t want to know or wouldn’t be able to understand it. Kerry says, “we are very capable of understanding information when it’s presented to us in an accessible way”.

Kerry would like to be given thorough information about exercise so she can make an informed choice.

We’re very willing to do exercises, you know, what I hear from friends who are GPs is that they don’t bother prescribing or recommending exercise or diet because people don’t do it but that isn’t my experience and at least offer me the opportunity. So yeah, you know, give me the information, let me make informed decisions, give me simple stuff that I can do for myself to help myself while I’m waiting, particularly when the waiting times are going to be, you know, 11 months plus.

 

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